Several people have asked me if Eddie has noticed a difference yet. The simple answer is no, not yet. Eddie did lots of research on this procedure (and lots of other offerings out there) long before we made this trip.
He says results won't be noticed for, at least, 12 weeks. I suppose it takes that long for the stem cells to make any affective "repairs".
We will keep you posted from time to time.
Wednesday, October 28, 2009
Tuesday, October 27, 2009
Home, at last!!
We arrived safely at Tulsa International Airport about 11:30 this morning. I told Eddie that astronauts returning from space could not have been happier than I was when our plane touched down.
We had quite a morning though, before we began our final flight home. We stayed at the nice Chicago Sheraton last night (wonderful king size bed, tons of pillows and fluffy comforters) though it was mostly wasted. We didn't get to bed until after ten, and Eddie didn't sleep much. He woke me at 1:30 this morning and wanted to sit up for a while. I didn't find out until later, on the plane, that he stayed up the rest of the night watching TV, couldn't sleep! I slept off and on, but was up plenty early. The plane was scheduled to leave at 9:05.
I went to the front dest at 6:45 (keep that time in mind now....) and requested the shuttle, with wheel chair lift, be available at 7:30. We'd checked our bags on through to Tulsa so we wouldn't have to handle them all again, and got our morning boarding passes before we left the airport Monday night so we could move through the airport pretty quickly. We got our few things all packed up and I rolled him to the lobby at 7:25, thinking this is going to work perfectly and we might have time to grab a little something for breakfast at the airport. I inquired at the front desk again about the shuttle and was met with a blank look...seems they somehow (in the past 40 minutes) misplaced my request for the "special" shuttle, and the driver had just pulled out for the airport. They radioed, and he told them he would get it for us when he returned from that trip. So we waited, and waited.
The driver didn't arrive until almost 8am, and then chatted for several minutes in the lobby with another (regular) guest before finally disappearing (to get the keys?), and shortly the shuttle pulled in. Now I was getting a little anxious, but we only had to make it through security and to our gate by about 8:30, so I was making myself stay calm.
We arrived at the airport about 8:15. I was ripping off shoes and earrings, Eddie's jacket and shoes, unveiling the laptop, getting boarding passes and IDs... a great flurry of activity, then reversing the process, of course. Off we go at a brisk pace to gate K15 (remember that number now....) We found the (huge, long) corridor for K gates, and moved a little quicker. Poor Eddie, I had piled some of the carry-on stuff onto his lap, so he was holding those and just plain holding on.
Finally, K15. I hurried up to the counter, apologizing for running late and requesting an onboard wheelchair. Well guess what? K15 was loading up for Rio, Spain, Central America... I don't remember THEIR destination, but it was not in this country, and certainly not Tulsa, Oklahoma. What??? I showed her the boarding passes, clearly marked with gate K15. Nope, sorry, Tulsa was leaving from H11b! Holy Cow. That means back to the hub (think of it like a bicycle wheel... hub, then spokes radiating out), then finding the corridor (huge, long, yet again) for H gates. I was really sweating then (literally and physically).
Off we go again. (I may have lied earlier when I said I'm always up for an adventure). Thank God the H corridor was not way on the other side of the airport. I just kept thinking that the next direct flight from Chicago was not until 4:15pm...and I wanted to go home. I almost got a little emotional at that point, but sucked it up.
I never broke out into a full run (mainly because I was too tired by then..and it was too crowded) but we made pretty good time. We came flying up to the counter (H11b), yes it was the Tulsa gate and, of course, they still had to radio for the aisle wheelchair (I debated asking for two..one for me), and they were beginning to board. I didn't care at that point...we were going to make it. And on this flight, thank goodness, we were seated in the front row (bulkhead) seats. This time I let the two guys with the wheelchair handle Eddie. They had to ask one (First Class, no less) passenger to move out of his seat for a few minutes in order to get Eddie lifted in, but otherwise it was done pretty swiftly and not too undignified. After that it was smooth sailing.
We were met at the Tulsa plane by the on board wheel chair and transfer was made for the last time. The fellow who helped there, then wheeled Eddie through the airport, to the baggage carousel, even lifted the luggage to the curb for me ... nice tip for him. One phone call to airport parking and their special shuttle was there quickly.
Again, I can't say enough nice things about American Parking at Tulsa International. They told me they'd only gotten the new shuttle bus, with wheel chair lift, about two months ago so most of the drivers are still training. We were more than happy to assist in their training...they are very cautious and considerate.
They unloaded us at the vehicle (nice tip) and I told them I could take it from there... mostly so I could catch my breath and assess how I was going to load everything up. Eddie and I were both hungry so we stopped to get BBQ (we are back in Oklahoma, right?) and carry it home.
I unloaded the luggage and got Eddie's walker out (tons of plastic and tape off) so he can be all indepedent again.
Home again finally. It doesn't appear Eddie has suffered any ill affects from the procedures. He's taking Ibuprophen and Tylenol a couple of times a day. We'll just wait and see now.
Me? I arrived home still standing upright and with a sense of humor, so my goal was accomplished.
Karen and Russ phoned that Miz Izzy was spanking clean, toenails clipped and ready to come home. Izzy rode with me to the bank, and the post office, behaving herself. When we got home she woofed down some food, a pig ear treat, tried to drink from every available toilet on the premises, sniffed all the new scents (including Eddie) and has settled in pretty well, not being resentful at all...it appears she liked her country vacation.
Thanks to all, for the prayers and well wishes!
We had quite a morning though, before we began our final flight home. We stayed at the nice Chicago Sheraton last night (wonderful king size bed, tons of pillows and fluffy comforters) though it was mostly wasted. We didn't get to bed until after ten, and Eddie didn't sleep much. He woke me at 1:30 this morning and wanted to sit up for a while. I didn't find out until later, on the plane, that he stayed up the rest of the night watching TV, couldn't sleep! I slept off and on, but was up plenty early. The plane was scheduled to leave at 9:05.
I went to the front dest at 6:45 (keep that time in mind now....) and requested the shuttle, with wheel chair lift, be available at 7:30. We'd checked our bags on through to Tulsa so we wouldn't have to handle them all again, and got our morning boarding passes before we left the airport Monday night so we could move through the airport pretty quickly. We got our few things all packed up and I rolled him to the lobby at 7:25, thinking this is going to work perfectly and we might have time to grab a little something for breakfast at the airport. I inquired at the front desk again about the shuttle and was met with a blank look...seems they somehow (in the past 40 minutes) misplaced my request for the "special" shuttle, and the driver had just pulled out for the airport. They radioed, and he told them he would get it for us when he returned from that trip. So we waited, and waited.
The driver didn't arrive until almost 8am, and then chatted for several minutes in the lobby with another (regular) guest before finally disappearing (to get the keys?), and shortly the shuttle pulled in. Now I was getting a little anxious, but we only had to make it through security and to our gate by about 8:30, so I was making myself stay calm.
We arrived at the airport about 8:15. I was ripping off shoes and earrings, Eddie's jacket and shoes, unveiling the laptop, getting boarding passes and IDs... a great flurry of activity, then reversing the process, of course. Off we go at a brisk pace to gate K15 (remember that number now....) We found the (huge, long) corridor for K gates, and moved a little quicker. Poor Eddie, I had piled some of the carry-on stuff onto his lap, so he was holding those and just plain holding on.
Finally, K15. I hurried up to the counter, apologizing for running late and requesting an onboard wheelchair. Well guess what? K15 was loading up for Rio, Spain, Central America... I don't remember THEIR destination, but it was not in this country, and certainly not Tulsa, Oklahoma. What??? I showed her the boarding passes, clearly marked with gate K15. Nope, sorry, Tulsa was leaving from H11b! Holy Cow. That means back to the hub (think of it like a bicycle wheel... hub, then spokes radiating out), then finding the corridor (huge, long, yet again) for H gates. I was really sweating then (literally and physically).
Off we go again. (I may have lied earlier when I said I'm always up for an adventure). Thank God the H corridor was not way on the other side of the airport. I just kept thinking that the next direct flight from Chicago was not until 4:15pm...and I wanted to go home. I almost got a little emotional at that point, but sucked it up.
I never broke out into a full run (mainly because I was too tired by then..and it was too crowded) but we made pretty good time. We came flying up to the counter (H11b), yes it was the Tulsa gate and, of course, they still had to radio for the aisle wheelchair (I debated asking for two..one for me), and they were beginning to board. I didn't care at that point...we were going to make it. And on this flight, thank goodness, we were seated in the front row (bulkhead) seats. This time I let the two guys with the wheelchair handle Eddie. They had to ask one (First Class, no less) passenger to move out of his seat for a few minutes in order to get Eddie lifted in, but otherwise it was done pretty swiftly and not too undignified. After that it was smooth sailing.
We were met at the Tulsa plane by the on board wheel chair and transfer was made for the last time. The fellow who helped there, then wheeled Eddie through the airport, to the baggage carousel, even lifted the luggage to the curb for me ... nice tip for him. One phone call to airport parking and their special shuttle was there quickly.
Again, I can't say enough nice things about American Parking at Tulsa International. They told me they'd only gotten the new shuttle bus, with wheel chair lift, about two months ago so most of the drivers are still training. We were more than happy to assist in their training...they are very cautious and considerate.
They unloaded us at the vehicle (nice tip) and I told them I could take it from there... mostly so I could catch my breath and assess how I was going to load everything up. Eddie and I were both hungry so we stopped to get BBQ (we are back in Oklahoma, right?) and carry it home.
I unloaded the luggage and got Eddie's walker out (tons of plastic and tape off) so he can be all indepedent again.
Home again finally. It doesn't appear Eddie has suffered any ill affects from the procedures. He's taking Ibuprophen and Tylenol a couple of times a day. We'll just wait and see now.
Me? I arrived home still standing upright and with a sense of humor, so my goal was accomplished.
Karen and Russ phoned that Miz Izzy was spanking clean, toenails clipped and ready to come home. Izzy rode with me to the bank, and the post office, behaving herself. When we got home she woofed down some food, a pig ear treat, tried to drink from every available toilet on the premises, sniffed all the new scents (including Eddie) and has settled in pretty well, not being resentful at all...it appears she liked her country vacation.
Thanks to all, for the prayers and well wishes!
Sunday, October 25, 2009
Final post from Germany!
Eddie said this was the first morning in a long time that he hasn't gotten up aching all over. That's great news, just doesn't last long enough. I think that's normal for him, not caused by the procedure... though he had a couple of days of real discomfort (more so than usual).
He insisted I get out for a while today, so about 2pm I took a taxi several kilometers to the Chocolate Museum. It is located on the Rhine River. Toured the museum. Interesting, but not worth the 7.50 Euro entrance fee. Then I planned to get a taxi back, but didn't see one nearby so just strolled along the Rhine walkway with many, many others on a nice fall, Sunday afternoon. I stopped and got a coffee (very strong coffee here) at a vendor cart, sat and watched people, then strolled all the way back to the Dom Cathedral. This time I got to go inside. They were having Sunday evening services. The cathedral is amazing... I stayed for about an hour. Then strolled back to the rail station, picked up a few things and got back about 6pm. I may have overdone the walking a bit, but will recover.
It's now eight p.m. here. We're all cleaned up and most everything is packed, just a few last minute items remaining. We're turning in early and hope to sleep well. We are looking forward to going home, but dreading the very long trip back.
We leave Cologne at 1:05pm, arrive at Munich at 2:10pm, then depart for Chicago at 3:25pm, arriving at 7:25pm (I think that's a 9 hr flight to Chicago).
We will be spending the night at Chicago, but a short night since we leave for Tulsa Tuesday at 9am.
Get to the house, pick up the mail, pick up the dog, then probably collapse the rest of the day.
I'm looking forward to getting back to work on Wednesday.
He insisted I get out for a while today, so about 2pm I took a taxi several kilometers to the Chocolate Museum. It is located on the Rhine River. Toured the museum. Interesting, but not worth the 7.50 Euro entrance fee. Then I planned to get a taxi back, but didn't see one nearby so just strolled along the Rhine walkway with many, many others on a nice fall, Sunday afternoon. I stopped and got a coffee (very strong coffee here) at a vendor cart, sat and watched people, then strolled all the way back to the Dom Cathedral. This time I got to go inside. They were having Sunday evening services. The cathedral is amazing... I stayed for about an hour. Then strolled back to the rail station, picked up a few things and got back about 6pm. I may have overdone the walking a bit, but will recover.
It's now eight p.m. here. We're all cleaned up and most everything is packed, just a few last minute items remaining. We're turning in early and hope to sleep well. We are looking forward to going home, but dreading the very long trip back.
We leave Cologne at 1:05pm, arrive at Munich at 2:10pm, then depart for Chicago at 3:25pm, arriving at 7:25pm (I think that's a 9 hr flight to Chicago).
We will be spending the night at Chicago, but a short night since we leave for Tulsa Tuesday at 9am.
Get to the house, pick up the mail, pick up the dog, then probably collapse the rest of the day.
I'm looking forward to getting back to work on Wednesday.
Saturday, October 24, 2009
Lufthasana Business Class Flight
I wanted to tell you about the business class travel on Lufthansa, on the way over (and back) because it was awesome. We paid a big price tag for that, but with 9 hrs in the air I wanted to make sure Eddie was somewhat comfortable. My boss had told me how great it is, and he is right.
The individual seats recline every which way, without one lying in the passenger's lap behind you. One can lean the seat back, lift the footrest, adjust the lumbar support. Each seat has a new pillow and blanket waiting, and a small 'kit' (toothpaste, toothbrush, earplugs, a pair of socks, blindfold, and lip balm). I purchased headphones before leaving, but used theirs instead. There is even a place to put your eyeglasses while you sleep. Each seat has it's own TV monitor built into the back of the seat in front of you...and you select what you want to watch.
On the way over we were so tired that I thought we would fall asleep right away, but we were too busy investigating all the options. Before they brought us a nice meal, the hostess came around with a tray of steaming hot washcloths, offering each of us one (using tongs) so you can wash up before eating... very civilized.
Eddie and I selected different movies to watch (thus wasting 2 hrs of valuable sleep).
I thought about it later and it all seemed a bit surreal. After takeoff, I hadn't given a second thought about actually being in an airplane (at 35,000'), just enjoying ourselves and resting. And, for the first time ever, I was able to sleep on a plane.
That's the good news. The bad news is that I was very upset with the ground crew, both Lufthansa and O'Hare services. I spent some time the other day, composing a complaint using their online form. Probably won't matter to them, but it made me feel better.
When we were in Chicago at the gate, I asked the Lufthansa crew about pre-boarding with the on-board wheelchair. They weren't aware of the request, tho it had been confirmed at reservation, and confirmed again when we got our boarding passes. So she phoned for the little chair from hell. A fellow showed up with it, and then Lufthansa wouldn't let us pre-board. Seems the lady who phoned for the chair, and gave us the go-ahead wasn't "in charge". I truly think they were trying to let me know who the boss was, and it certainly wasn't this old American woman standing in front of them.
Finally, they let us through. It takes a good 5-10 minutes to get someone out of their wheelchair, and all strapped into the little one. So, two guys manuvered Eddie down the aisle, and figured out they were on the wrong aisle. They had to lug him all the way back up front to the galley, and come down the other aisle. By then, passengers were arriving in droves! All of us were being inconvenienced, and Eddie the star of the show. It burned me up! BUT the worse part was still to come. I was nearby, but didn't hear the ground crew fellow grumbling about how he was supposed to get off at 9:30 and they called him for this. He was obviously going to be late getting off work, etc. I say, if he'd been paying attention instead of grumbling, he would have gone down the correct aisle in the first place and be out of there. Eddie may be disabled, but he can hear just fine. How very insensitive! If I had heard it, there would have been a scene, not just an inconvenience.
So, firmly worded complaint to Lufthansa giving them all the information (and our return flight info too), and letting them know how very disappointed we are with Lufthansa and O'Hare. You can be certain that I will be right beside Eddie (or lugging that chair myself) on the way back...any comments, I'll hear about firsthand! I felt I let Edddie down, but he wasn't really upset about it.
The individual seats recline every which way, without one lying in the passenger's lap behind you. One can lean the seat back, lift the footrest, adjust the lumbar support. Each seat has a new pillow and blanket waiting, and a small 'kit' (toothpaste, toothbrush, earplugs, a pair of socks, blindfold, and lip balm). I purchased headphones before leaving, but used theirs instead. There is even a place to put your eyeglasses while you sleep. Each seat has it's own TV monitor built into the back of the seat in front of you...and you select what you want to watch.
On the way over we were so tired that I thought we would fall asleep right away, but we were too busy investigating all the options. Before they brought us a nice meal, the hostess came around with a tray of steaming hot washcloths, offering each of us one (using tongs) so you can wash up before eating... very civilized.
Eddie and I selected different movies to watch (thus wasting 2 hrs of valuable sleep).
I thought about it later and it all seemed a bit surreal. After takeoff, I hadn't given a second thought about actually being in an airplane (at 35,000'), just enjoying ourselves and resting. And, for the first time ever, I was able to sleep on a plane.
That's the good news. The bad news is that I was very upset with the ground crew, both Lufthansa and O'Hare services. I spent some time the other day, composing a complaint using their online form. Probably won't matter to them, but it made me feel better.
When we were in Chicago at the gate, I asked the Lufthansa crew about pre-boarding with the on-board wheelchair. They weren't aware of the request, tho it had been confirmed at reservation, and confirmed again when we got our boarding passes. So she phoned for the little chair from hell. A fellow showed up with it, and then Lufthansa wouldn't let us pre-board. Seems the lady who phoned for the chair, and gave us the go-ahead wasn't "in charge". I truly think they were trying to let me know who the boss was, and it certainly wasn't this old American woman standing in front of them.
Finally, they let us through. It takes a good 5-10 minutes to get someone out of their wheelchair, and all strapped into the little one. So, two guys manuvered Eddie down the aisle, and figured out they were on the wrong aisle. They had to lug him all the way back up front to the galley, and come down the other aisle. By then, passengers were arriving in droves! All of us were being inconvenienced, and Eddie the star of the show. It burned me up! BUT the worse part was still to come. I was nearby, but didn't hear the ground crew fellow grumbling about how he was supposed to get off at 9:30 and they called him for this. He was obviously going to be late getting off work, etc. I say, if he'd been paying attention instead of grumbling, he would have gone down the correct aisle in the first place and be out of there. Eddie may be disabled, but he can hear just fine. How very insensitive! If I had heard it, there would have been a scene, not just an inconvenience.
So, firmly worded complaint to Lufthansa giving them all the information (and our return flight info too), and letting them know how very disappointed we are with Lufthansa and O'Hare. You can be certain that I will be right beside Eddie (or lugging that chair myself) on the way back...any comments, I'll hear about firsthand! I felt I let Edddie down, but he wasn't really upset about it.
Daylight Savings Time
We just discovered that tonight Germany sets their clocks back one hour for 'end of summer'. Many of you know how much I like to sleep, so ... lucky me, I get an extra hour's sleep tonight AND an extra hour when I return home (November this year in the U.S.).
Cologne and the Dom
We got out today, briefly. Eddie let me choose and I wanted to see the Dom Cathedral. I had emailed and they responded that there was no accessibility problem at the Dom, unfortunaely not so. The large open plaza to get to the Dom is surrounded by steps on the two sides we saw, but we got close anyway...and it is amazing.
This the second time I've had a smart-mouth taxi driver here. So much for the friendly people of Cologne, or possibly it's just the nature of taxi drivers everywhere... who knows? I didn't know exactly the location of the Dom from our hotel, but did know it was on the other side of the huge rail station, and thought it was a few miles. It's actually about 7 blks away, and one can cut through the rail station to get there (we figured that out on the way back!). I had the hotel phone for a taxi, and the driver acted like he didn't understand English, but Dom Cathedral is the same in either language. When we got loaded he turned to me (in the back seat) and shook his finger at me, telling me (in very good English) how he had waited for two hours (two hours he repeated) for a fare before getting our call...and it being such a short distance.
Eddie and I laughed about it later because I was wanting to learn the driver's true grasp of our language with some coarse Oklahoma terminology. Eddie and I came up with some colorful examples...of course we didn't actually do it.
I think the driver was messing with me (and the meter) by going in a large circle around the site before actually arriving there, but not really sure. I do know that when we arrived, and Eddie was comfortably seated in his wheelchair, I told the driver that I would be fair with him, but not because (wagging my finger at him now) of his scolding. He grinned rather sheepishly and took the 11 Euros I offered.
No good luck with our sightseeing expedition. There was physically no way to get the wheelchair safely up the 4-5 steps to the entrance, and within minutes of our arriving, it began to drizzle! I got him under the shelter of a nearby canopy, packed with other people getting out of the rain. I told him we were lucky it was nowhere near what we've had in Oklahoma the past few months with the huge downpours ... he had to agree with me. It can always be worse, right?
After a bit of back and forth discussion, should we wait, will it rain harder, etc. I left him for a few minutes to dash across the street to a souvenir stand and buy an umbrella, and warned him not to put my eye out with it, since the driver (that's me) is about eyeball/umbrella height! His jacket was damp and he was getting chilled. I saw a McDonalds (yep, German McD) about a block away and scouted out the terrain (curbs) to see if we could get there okay. Well, McD's entrance has a step, as do most buildings in the city, so that was a no-go. In one direction was the tunnel the taxi took to bring us there, but we couldn't tell if it had sidewalks or not. I'm always up for an adventure, but wasn't sure about Eddie. I don't mind getting wet but he was uncomfortable. So we chose a different route, keeping the (very tall, imposing) rail station in sight.
I was really angry with myself for not thinking about possible rain. Part of the "stuff" I'd packed included my very ugly yellow rain jacket, a new rain poncho for him, and a brand new, large umbrella...all back at the hotel. It's always that way when it rains though, isn't it?
We stopped into a smaller souvenier shop (no steps) along the way (out of the rain) and picked up a few things, then continued onward. That's when we discovered that the Dom is located just on the other side of the rail station and we could have walked, I suppose. Eddie hasn't been to the rail station since we arrived and was whisked through with the porter and luggage. So we meandered around the rail station mall looking at all the shops and food choices. He let me stop at a bookstore. We discovered they have an English section, so I have reading material for the trip home. Then I let him decide what we would eat. He chose baked chicken served with french fries (they seem to serve everything with french fries. I decided to try the curry wurst that I've seen everywhere here (with fries, no less). It's wurst (like a large hot dog weiner), cut in sections, covered with a sauce (sweetened ketchup, sort of) and sprinkled with curry powder. Hummm, I wasn't sure about that at first, but it wasn't too bad. I won't be craving that when I get home (like the pastries...LOL). Eddie said the chicken was very good.
I had my first experience with a pay toilet there. I followed the WC (water closet) sign...and came to a large group of people all paying to use the toilet! It costs 1 Euro (about $1.50). And, of course, me with no 1 Euro coin in my pocket. We needed water and soda, so I left him working on the chicken, and picked those up at a nearby store (like a mini supermarket)... requesting one Euro coins in change. The toilet is very different than anything I've seen before...there is no crawling under the door (like I remember as a very small child, when there were pay toilets on the Turnpike.... yep, I'm old!) I watched for a while to see how it worked. One troops down a flight of stairs to arrive at a turnstile, drop your coin into the slot, a light turns green and you push through. A few more feet, there is a hallway running left to right (no door, no wall between), women go left, men go right. There are individual restroom stalls (with doors) with a light above each. If the light is green, it's unoccupied. Do your business, wash your hands and off you go. So now I'm thinking that 2.50 Euro coffee (kaffe) actually cost me 3.50 Euros.... I'll have to remember that in the future.
So we got to see the Dom. Eddie was so tired when we got back, laughing because he said he didn't actually do anything to exert himself. I told him that me pushing him on those bumpy sidewalks, and hauling him backwards up all the curbs was probably stressful. Not really..but then he doesn't get stressed when someone else is "driving" like I do... Ms. control freak here. He decided early in the marriage that it was easier to let me drive the car than listen to me talk him through it....LOL.
This the second time I've had a smart-mouth taxi driver here. So much for the friendly people of Cologne, or possibly it's just the nature of taxi drivers everywhere... who knows? I didn't know exactly the location of the Dom from our hotel, but did know it was on the other side of the huge rail station, and thought it was a few miles. It's actually about 7 blks away, and one can cut through the rail station to get there (we figured that out on the way back!). I had the hotel phone for a taxi, and the driver acted like he didn't understand English, but Dom Cathedral is the same in either language. When we got loaded he turned to me (in the back seat) and shook his finger at me, telling me (in very good English) how he had waited for two hours (two hours he repeated) for a fare before getting our call...and it being such a short distance.
Eddie and I laughed about it later because I was wanting to learn the driver's true grasp of our language with some coarse Oklahoma terminology. Eddie and I came up with some colorful examples...of course we didn't actually do it.
I think the driver was messing with me (and the meter) by going in a large circle around the site before actually arriving there, but not really sure. I do know that when we arrived, and Eddie was comfortably seated in his wheelchair, I told the driver that I would be fair with him, but not because (wagging my finger at him now) of his scolding. He grinned rather sheepishly and took the 11 Euros I offered.
No good luck with our sightseeing expedition. There was physically no way to get the wheelchair safely up the 4-5 steps to the entrance, and within minutes of our arriving, it began to drizzle! I got him under the shelter of a nearby canopy, packed with other people getting out of the rain. I told him we were lucky it was nowhere near what we've had in Oklahoma the past few months with the huge downpours ... he had to agree with me. It can always be worse, right?
After a bit of back and forth discussion, should we wait, will it rain harder, etc. I left him for a few minutes to dash across the street to a souvenir stand and buy an umbrella, and warned him not to put my eye out with it, since the driver (that's me) is about eyeball/umbrella height! His jacket was damp and he was getting chilled. I saw a McDonalds (yep, German McD) about a block away and scouted out the terrain (curbs) to see if we could get there okay. Well, McD's entrance has a step, as do most buildings in the city, so that was a no-go. In one direction was the tunnel the taxi took to bring us there, but we couldn't tell if it had sidewalks or not. I'm always up for an adventure, but wasn't sure about Eddie. I don't mind getting wet but he was uncomfortable. So we chose a different route, keeping the (very tall, imposing) rail station in sight.
I was really angry with myself for not thinking about possible rain. Part of the "stuff" I'd packed included my very ugly yellow rain jacket, a new rain poncho for him, and a brand new, large umbrella...all back at the hotel. It's always that way when it rains though, isn't it?
We stopped into a smaller souvenier shop (no steps) along the way (out of the rain) and picked up a few things, then continued onward. That's when we discovered that the Dom is located just on the other side of the rail station and we could have walked, I suppose. Eddie hasn't been to the rail station since we arrived and was whisked through with the porter and luggage. So we meandered around the rail station mall looking at all the shops and food choices. He let me stop at a bookstore. We discovered they have an English section, so I have reading material for the trip home. Then I let him decide what we would eat. He chose baked chicken served with french fries (they seem to serve everything with french fries. I decided to try the curry wurst that I've seen everywhere here (with fries, no less). It's wurst (like a large hot dog weiner), cut in sections, covered with a sauce (sweetened ketchup, sort of) and sprinkled with curry powder. Hummm, I wasn't sure about that at first, but it wasn't too bad. I won't be craving that when I get home (like the pastries...LOL). Eddie said the chicken was very good.
I had my first experience with a pay toilet there. I followed the WC (water closet) sign...and came to a large group of people all paying to use the toilet! It costs 1 Euro (about $1.50). And, of course, me with no 1 Euro coin in my pocket. We needed water and soda, so I left him working on the chicken, and picked those up at a nearby store (like a mini supermarket)... requesting one Euro coins in change. The toilet is very different than anything I've seen before...there is no crawling under the door (like I remember as a very small child, when there were pay toilets on the Turnpike.... yep, I'm old!) I watched for a while to see how it worked. One troops down a flight of stairs to arrive at a turnstile, drop your coin into the slot, a light turns green and you push through. A few more feet, there is a hallway running left to right (no door, no wall between), women go left, men go right. There are individual restroom stalls (with doors) with a light above each. If the light is green, it's unoccupied. Do your business, wash your hands and off you go. So now I'm thinking that 2.50 Euro coffee (kaffe) actually cost me 3.50 Euros.... I'll have to remember that in the future.
So we got to see the Dom. Eddie was so tired when we got back, laughing because he said he didn't actually do anything to exert himself. I told him that me pushing him on those bumpy sidewalks, and hauling him backwards up all the curbs was probably stressful. Not really..but then he doesn't get stressed when someone else is "driving" like I do... Ms. control freak here. He decided early in the marriage that it was easier to let me drive the car than listen to me talk him through it....LOL.
Saturday morning Oct 24, 2009
Our son contacted us yesterday to make sure everything was okay, since I hadn't posted anything. It was just a lazy day hanging around the hotel since Eddie was supposed to rest for, at least, two days. So we huddled together around the laptop, last night, and watched two of the DVD movies I brought. He has complained for the past two days of joints aching. More than usual I asked, he's not sure. But Steve, who traveled here in Sept, also mentioned aching joint pain. We're treating it with Aleve, Ibuprophen, and Tylenol. That's about all I can do to help. He's used to physical therapy 3/week, and that may have a part in it... no PT here.
Eddie says he likes 'Mama Mia' better every time he sees it. It's really upbeat too, and great ABBA music. Pierce Bronson sings about as well as I do (badly). One of the things I've repeated over and over (so it's an old story for most) is that I enjoyed attending the deaf church, because I could sing enthusiastically and loudly and nobody minded how badly...LOL (that's Laughing Out Loud -- Eddie keeps forgetting the "shorthand"). FYI, deaf mostly "sign" the songs and it's amazing to watch. When they "applaud" they raise hands in the air and flutter them about...since they don't hear clapping of hands, of course ... everything is very visual for the deaf.
We are going to attempt to do some sightseeing today after he takes a short nap. If he becomes fatigued, we'll return to the hotel right away. He thinks it's a waste not to do/see something touristy on this trip. And I am going to taxi to a used (English) book store later, I've run out of reading material...and not much else to do here at the hotel (I only brought three movies!).
I'm just ready to go home. I'm already making a list of things I need to do when I get back...and it's a long one. I have repairs to schedule for two of the rental properties, plus guttering installed to one, and have a housing inspection coming up on another. I love renovating the properties, but not crazy about the landlord part of it. But they are an investment for the future, and so far, a good one. I also have duties that I put aside at the job, so need to hustle there. I like to say busy.
Very soon after returning, we will also be appealing the VA denial for disability benefits. There is only a one-year deadline after we receive the initial denial, and that was last November or December. Just FYI, the Secry of VA announced Sept 23, 2008 that ALS is a presumptive service-connected disability regardless of when/where service took place. There are a few other minor restrictions, but those are not a concern for Eddie's case. They denied him last year due to the change in diagnosis by one of the neurologists, from ALS to PLS (that's primary lateral schlerosis). Just for the record, there is no definitive test to positively identify and diagnose ALS (same with Parkinsons and some other disorders), the doctors just keep eliminating things until there is only one possibility remaining.
Many of you may not know that it took about 2 yrs of tests, four neurologists (one at the Mayo in Scottsdale), to come up with a diagnosis. Many times they just have to wait until the disorder progresses and presents more symptoms. (Very sad that Eddie was wishing early-on that it was a stoke. Can you imagine wishing for a stroke as the better outcome?)
Two neurologists noted it was an "undetermined" neurological disorder (that was early in the process), another gave a definitive diagnosis of ALS (2007) and the MDA changed their opinion to PLS last year (because it was not progessing as rapidly as ALS normally does). The MDA says that is all in the wording, and does not rule out ALS, only stating the present condition. Dr. B has agreed to write a letter to the VA on Eddie's behalf. Also, we will be seeing the local neurologist in mid-November, so we'll see what Dr. D says. If we get firm diagnosis of ALS from these last two, there is no way VA can deny Eddie's benefits. But I just can't miss the deadline for appeal.
VA offers disability compensation, but we are more interested in the other benefits available. Relief from property and sales tax, and the chance to apply for grants to renovate our home entrance and shower to make them handicapped accessible. There is also a grant available to convert (or buy) a vehicle to transport a wheelchair.. but we'll have to wait and see. We will ask for representation from the VFW this time, or an attorney who specializes in VA (if there is such a thing).
We have been encouraged by the MDA to apply for Medicare part B too. He has part A, and I thought that, along with my employer insurance was sufficient. But, apparently Medicare B pays for things that private insurance does not. For an addl $100 a month, I figure better safe than sorry. With the state of the economy and unemployment, I want to be certain that he has great medical coverage if I should ever lose my job and benefits. I can worry about me later.
I mentioned in an earlier post (at least I think I did) that Eddie's speech has declined a great deal. He is very difficult to understand now, especially on the phone. So, he went for evaluation by a Speech Pathologist at TU before we left. His Dynavox V was ordered and should arrive shortly after we get home. It's very, very cool! Eddie loved the one he tried out. It's about the size of an old Etch-a-Sketch (and very durable) and it runs on Windows O/S. It has an, easy to use, keyboard at the bottom (for fingertip use or a stylus). It also is pre-programmed with categories of "phrases" (greetings, food/drink, etc) that he can select from. Also it has predictive spelling, so when he starts typing it predicts the next word(s) so he doesn't have to type every letter in. Then the unit speaks, the selected phrase or sentence, out loud. He can also add to the programmed phrases (and that will be fun/interesting to see what he selects...I'm going to suggest "you did good, Patti"...LOL). Most likely he'll program some political points of view..but that's a whole different story, and up for debate...just not by me!
The thing I like the most about this unit (he tried out several) was it has a selection for "formal" or "casual" language. Guess which one he liked?! So it will say, Hi, instead of Hello. How's it going? and things like that. Plus a few mild cuss words. I'm afraid he'll wear those buttons out.
Since it is a medical device, (mostly paid for by Medicare part A, and our own money, not private insurance) it cannot arrive with computer capibilities. Purely medical purposes only, i.e. speech. BUT, we can pay an additional $200 (I think that was the amount) and have it adapted for WiFi, after we receive it, of course. That will be a great convenience to Eddie, since Son already set up a wireless router at the house (thank you Mike, that college education is paying itself back).
We also heard from the durable med equipment place (unfortunately, the day before we left) so they will deliver Eddie's cough assist machine, and BiPap in early November.
See what I mean about a long list of things?
So I'll end with more info than you ever want to know about ALS. My wish is that anybody reading will ONLY ever read about it, and never experience the heartache of it personally.
I took this from one of the resources listed on Steve (and Fran's) blog called
MSAJourney.blogspot.com
Steve has MSA, not ALS but they appear to be similar in many aspects. He has loads of resources listed there, so feel free to view their blog as well. Steve and Fran traveled to the same XCell clinic in Sept 2009.
What is Amyotrophic Lateral Sclerosis?
Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away, and twitch. Eventually the ability of the brain to start and control voluntary movement is lost. Individuals with ALS lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, individuals lose the ability to breathe without ventilatory support. The disease does not affect a person's ability to see, smell, taste, hear, or recognize touch, and it does not usually impair a person’s thinking or other cognitive abilities. However, several recent studies suggest that a small percentage of patients may experience problems with memory or decision-making, and there is growing evidence that some may even develop a form of dementia. The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others.
I'll close now and get him ready for traveling. The weather is nice crisp Fall weather, similar to Oklahoma right now... the leaves are just beginning to change since we've been here. So it is pleasant.
Love to all!
Eddie says he likes 'Mama Mia' better every time he sees it. It's really upbeat too, and great ABBA music. Pierce Bronson sings about as well as I do (badly). One of the things I've repeated over and over (so it's an old story for most) is that I enjoyed attending the deaf church, because I could sing enthusiastically and loudly and nobody minded how badly...LOL (that's Laughing Out Loud -- Eddie keeps forgetting the "shorthand"). FYI, deaf mostly "sign" the songs and it's amazing to watch. When they "applaud" they raise hands in the air and flutter them about...since they don't hear clapping of hands, of course ... everything is very visual for the deaf.
We are going to attempt to do some sightseeing today after he takes a short nap. If he becomes fatigued, we'll return to the hotel right away. He thinks it's a waste not to do/see something touristy on this trip. And I am going to taxi to a used (English) book store later, I've run out of reading material...and not much else to do here at the hotel (I only brought three movies!).
I'm just ready to go home. I'm already making a list of things I need to do when I get back...and it's a long one. I have repairs to schedule for two of the rental properties, plus guttering installed to one, and have a housing inspection coming up on another. I love renovating the properties, but not crazy about the landlord part of it. But they are an investment for the future, and so far, a good one. I also have duties that I put aside at the job, so need to hustle there. I like to say busy.
Very soon after returning, we will also be appealing the VA denial for disability benefits. There is only a one-year deadline after we receive the initial denial, and that was last November or December. Just FYI, the Secry of VA announced Sept 23, 2008 that ALS is a presumptive service-connected disability regardless of when/where service took place. There are a few other minor restrictions, but those are not a concern for Eddie's case. They denied him last year due to the change in diagnosis by one of the neurologists, from ALS to PLS (that's primary lateral schlerosis). Just for the record, there is no definitive test to positively identify and diagnose ALS (same with Parkinsons and some other disorders), the doctors just keep eliminating things until there is only one possibility remaining.
Many of you may not know that it took about 2 yrs of tests, four neurologists (one at the Mayo in Scottsdale), to come up with a diagnosis. Many times they just have to wait until the disorder progresses and presents more symptoms. (Very sad that Eddie was wishing early-on that it was a stoke. Can you imagine wishing for a stroke as the better outcome?)
Two neurologists noted it was an "undetermined" neurological disorder (that was early in the process), another gave a definitive diagnosis of ALS (2007) and the MDA changed their opinion to PLS last year (because it was not progessing as rapidly as ALS normally does). The MDA says that is all in the wording, and does not rule out ALS, only stating the present condition. Dr. B has agreed to write a letter to the VA on Eddie's behalf. Also, we will be seeing the local neurologist in mid-November, so we'll see what Dr. D says. If we get firm diagnosis of ALS from these last two, there is no way VA can deny Eddie's benefits. But I just can't miss the deadline for appeal.
VA offers disability compensation, but we are more interested in the other benefits available. Relief from property and sales tax, and the chance to apply for grants to renovate our home entrance and shower to make them handicapped accessible. There is also a grant available to convert (or buy) a vehicle to transport a wheelchair.. but we'll have to wait and see. We will ask for representation from the VFW this time, or an attorney who specializes in VA (if there is such a thing).
We have been encouraged by the MDA to apply for Medicare part B too. He has part A, and I thought that, along with my employer insurance was sufficient. But, apparently Medicare B pays for things that private insurance does not. For an addl $100 a month, I figure better safe than sorry. With the state of the economy and unemployment, I want to be certain that he has great medical coverage if I should ever lose my job and benefits. I can worry about me later.
I mentioned in an earlier post (at least I think I did) that Eddie's speech has declined a great deal. He is very difficult to understand now, especially on the phone. So, he went for evaluation by a Speech Pathologist at TU before we left. His Dynavox V was ordered and should arrive shortly after we get home. It's very, very cool! Eddie loved the one he tried out. It's about the size of an old Etch-a-Sketch (and very durable) and it runs on Windows O/S. It has an, easy to use, keyboard at the bottom (for fingertip use or a stylus). It also is pre-programmed with categories of "phrases" (greetings, food/drink, etc) that he can select from. Also it has predictive spelling, so when he starts typing it predicts the next word(s) so he doesn't have to type every letter in. Then the unit speaks, the selected phrase or sentence, out loud. He can also add to the programmed phrases (and that will be fun/interesting to see what he selects...I'm going to suggest "you did good, Patti"...LOL). Most likely he'll program some political points of view..but that's a whole different story, and up for debate...just not by me!
The thing I like the most about this unit (he tried out several) was it has a selection for "formal" or "casual" language. Guess which one he liked?! So it will say, Hi, instead of Hello. How's it going? and things like that. Plus a few mild cuss words. I'm afraid he'll wear those buttons out.
Since it is a medical device, (mostly paid for by Medicare part A, and our own money, not private insurance) it cannot arrive with computer capibilities. Purely medical purposes only, i.e. speech. BUT, we can pay an additional $200 (I think that was the amount) and have it adapted for WiFi, after we receive it, of course. That will be a great convenience to Eddie, since Son already set up a wireless router at the house (thank you Mike, that college education is paying itself back).
We also heard from the durable med equipment place (unfortunately, the day before we left) so they will deliver Eddie's cough assist machine, and BiPap in early November.
See what I mean about a long list of things?
So I'll end with more info than you ever want to know about ALS. My wish is that anybody reading will ONLY ever read about it, and never experience the heartache of it personally.
I took this from one of the resources listed on Steve (and Fran's) blog called
MSAJourney.blogspot.com
Steve has MSA, not ALS but they appear to be similar in many aspects. He has loads of resources listed there, so feel free to view their blog as well. Steve and Fran traveled to the same XCell clinic in Sept 2009.
What is Amyotrophic Lateral Sclerosis?
Amyotrophic lateral sclerosis (ALS), sometimes called Lou Gehrig's disease, is a rapidly progressive, invariably fatal neurological disease that attacks the nerve cells (neurons) responsible for controlling voluntary muscles. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. Unable to function, the muscles gradually weaken, waste away, and twitch. Eventually the ability of the brain to start and control voluntary movement is lost. Individuals with ALS lose their strength and the ability to move their arms, legs, and body. When muscles in the diaphragm and chest wall fail, individuals lose the ability to breathe without ventilatory support. The disease does not affect a person's ability to see, smell, taste, hear, or recognize touch, and it does not usually impair a person’s thinking or other cognitive abilities. However, several recent studies suggest that a small percentage of patients may experience problems with memory or decision-making, and there is growing evidence that some may even develop a form of dementia. The cause of ALS is not known, and scientists do not yet know why ALS strikes some people and not others.
I'll close now and get him ready for traveling. The weather is nice crisp Fall weather, similar to Oklahoma right now... the leaves are just beginning to change since we've been here. So it is pleasant.
Love to all!
Thursday, October 22, 2009
Strange tourist here
I told you way back in the blog that I'm a strange "tourist". I'm interested more in the way people live, how things operate, their culture and language, much more than the touristy spots (except for the Chocolate Museum here, that I must see..and taste, and buy!) or shopping (most of it is made in China, just like the U.S). So see what I find interesting? The garages!
As I said, real estate is at a premium. Eddie told me we should rent a car, but the travel agent and hotel warned that there is very little parking. Boy, were they right! One rarely sees a vacant space on the streets, and they are way too tiny for me to try my (very) old parallel parking skills. A few of the hotels have garages. The pictures here show a large garage by Cologne standards. One door marked Einfahrt (entrance), the other Ausfahrt (exit), the rest of the sign basically is saying "don't block the driveway". You can click on the pictures to enlarge them.
Twice I've seen another garage door, across the street, open but never had the camera with me at the time. That garage has only one door and the space is not very deep, and when it was open I saw four cars parked there! They were "stacked" in pairs. There is an elevator kind of thing that lowers the bottom tier (two cars) below ground level. If your car is on the bottom, one must raise the hydraulic elevator until your vehicle is at ground level, in order to back it out. The next person (car on top) lowers the "lift" (that's what elevators are called here) until theirs is on ground level. Very resourceful!
BTW, the public restrooms are marked WC (water closet).
Surroundings....
We are staying at the Euro Garden Hotel. When you look at the photo, you will not be impressed. But, it is one of the nicer hotels in the area, by European standards. It seems most of the streets are lined with "hotels", though many of them appear to be residences (flowers in the windows, different style curtains). Many people in German cities rent their entire lives, buying a home here is very expensive. There is also some sort of 'rent control' here like there is in NYC, and people protest here to keep it that way. The buildings are all attached, one to the other...no alleyways. I've seen that they put their trashcans by the front door for pickup. I saw that in older parts of New Orleans many years ago too...once again, no alleys for trash trucks. Real estate is at a premium so the buildings are all attached, but each has a different architectural style, color, and doorway. The strees are very narrow...many one-way streets in this part of the busy city. And more than once, our taxi or another vehicle, had to back all the way to the corner if there is something barring the way. Notice the construction underway on our block.... looks like Tulsa, huh? Our hotel is way down on the corner.. you can barely make out the Euro part of the sign.
This and that....
Eddie is doing fine, but very tired today. He only sleeps about 3-4 hours at a time, then he either sits on the side of the bed or sits in the wheelchair. That's the backpain, nothing to do with the procedure though. The fatigue may be from the procedure, but who know. He took a 400mg of Ibuprophen before bedtime and I think that (along with the pillows under his feet) helped him rest.
We did go down to breakfast and he enjoyed that, as usual. I think we will both take a long nap today. I brought two books with me and have almost finished the second one. So, though I'm not doing anything particularly exciting, I am "vacationing" and taking it easy. No auditors (no offense meant, MT) or rental properties to deal with here. I think I'll be missing all that by the time I get home and get back in the swing of things.
I already miss interaction with the great folks I work with, and kids/grandkids. I'm sure Eddie misses all the folks at PT, along with friends Wes and Fred. They have been exceptionally good friends to him, going above and beyond to take care of things he can't.
I'm attaching a photo I took of the Dom Cathedral (600 yrs to build, but 300 of that was idle) from a restaurant nearby. The Dom is about 3-4 miles away. The restaurant is in the Four Points Hotel, directly across from the rail station, so you see the busy (busy!) rail station lit up in the foreground and the spires of the cathedral in the background. It's gothic-style architecture so really kind of creepy (near dark anyway, when this was taken)...but you just can't take your eyes away.
We did go down to breakfast and he enjoyed that, as usual. I think we will both take a long nap today. I brought two books with me and have almost finished the second one. So, though I'm not doing anything particularly exciting, I am "vacationing" and taking it easy. No auditors (no offense meant, MT) or rental properties to deal with here. I think I'll be missing all that by the time I get home and get back in the swing of things.
I already miss interaction with the great folks I work with, and kids/grandkids. I'm sure Eddie misses all the folks at PT, along with friends Wes and Fred. They have been exceptionally good friends to him, going above and beyond to take care of things he can't.
I'm attaching a photo I took of the Dom Cathedral (600 yrs to build, but 300 of that was idle) from a restaurant nearby. The Dom is about 3-4 miles away. The restaurant is in the Four Points Hotel, directly across from the rail station, so you see the busy (busy!) rail station lit up in the foreground and the spires of the cathedral in the background. It's gothic-style architecture so really kind of creepy (near dark anyway, when this was taken)...but you just can't take your eyes away.
Wednesday, October 21, 2009
Stem cell therapy is no "heal"
That's what Dr. John told us.... no "heal", meaning no cure. They don't guarantee anything. The best results, according to the doctor... and we knew going into this, is to slow or halt the progress of the disease. And improve Eddie's quality of life.
Eddie is doing well tonight, some 8 hrs after the procedure. The clinic gave him three (large) tablets of antibiotic Monday as a precaution against infection (Keflex). He was/is to take them Tues-Thursday. They also sent us home today with tablets for pain, nausea, inflamation (Ibuprophen), just in case. But he hasn't had any pain or nausea. He took a Tylenol, and 2.5 mg of valium (to help his muscles relax) that he brought with him, before he laid down this afternoon for a few hours.
He woke up flailing about.... had a nightmare about drowning in a huge ocean...only to figure out it was all that water he drank at the clinic. Let's just say he was fully hydrated when he woke...and he laughed about that off and on all evening. Apparently the nightmare seemed very real.
He is supposed to stay in bed tomorrow, and can get up for meals and such on Friday...but is to rest. But he's already up and watching one (of the two) channels on TV. We find some of the German TV fun to watch though. Can you imagine "House" and "CSI-Miami" in German? Really pretty entertaining. Since Eddie moves very slowly on his walker, I don't worry that he'll overdo it here in this small room. The hotel staff was kind enough to send up two extra pillow so we can prop his feet up while he's lying down. It takes the pressure off his back and makes him rest more comfortably.
He says he wants to go sightseeing this weekend. We'll see. The Germany Tourism website that has a link for "accessibilty" has a glitch in it, more like a loop since it takes one right back to the home website. But, I will try to contact them via email for more specific info before then. I figure I can get him in a taxi, and we can go to the huge Dom Cathedral. If that doesn't work out, I can always have the tourist center there phone me another taxi to get us back home.
When I went out this evening (yep, 3-4 blocks again) for eats, there was a large group of British senior citizens checking into the hotel. I told him he's going to have to move faster in the morning, or might miss out on that buffet breakfast! My body is confused about what to do here... much, much more exercise that I anticipated, unfortunately there are lot more pastries being consumed that I planned either...LOL I'm guessing they will even out, not much luck I'll lose any weight.
Eddie is doing well tonight, some 8 hrs after the procedure. The clinic gave him three (large) tablets of antibiotic Monday as a precaution against infection (Keflex). He was/is to take them Tues-Thursday. They also sent us home today with tablets for pain, nausea, inflamation (Ibuprophen), just in case. But he hasn't had any pain or nausea. He took a Tylenol, and 2.5 mg of valium (to help his muscles relax) that he brought with him, before he laid down this afternoon for a few hours.
He woke up flailing about.... had a nightmare about drowning in a huge ocean...only to figure out it was all that water he drank at the clinic. Let's just say he was fully hydrated when he woke...and he laughed about that off and on all evening. Apparently the nightmare seemed very real.
He is supposed to stay in bed tomorrow, and can get up for meals and such on Friday...but is to rest. But he's already up and watching one (of the two) channels on TV. We find some of the German TV fun to watch though. Can you imagine "House" and "CSI-Miami" in German? Really pretty entertaining. Since Eddie moves very slowly on his walker, I don't worry that he'll overdo it here in this small room. The hotel staff was kind enough to send up two extra pillow so we can prop his feet up while he's lying down. It takes the pressure off his back and makes him rest more comfortably.
He says he wants to go sightseeing this weekend. We'll see. The Germany Tourism website that has a link for "accessibilty" has a glitch in it, more like a loop since it takes one right back to the home website. But, I will try to contact them via email for more specific info before then. I figure I can get him in a taxi, and we can go to the huge Dom Cathedral. If that doesn't work out, I can always have the tourist center there phone me another taxi to get us back home.
When I went out this evening (yep, 3-4 blocks again) for eats, there was a large group of British senior citizens checking into the hotel. I told him he's going to have to move faster in the morning, or might miss out on that buffet breakfast! My body is confused about what to do here... much, much more exercise that I anticipated, unfortunately there are lot more pastries being consumed that I planned either...LOL I'm guessing they will even out, not much luck I'll lose any weight.
Thumbs up!
Resting after the lumbar puncture. See the 1.5 liter bottle of water on the table? Thumbs up...the procedure went well
Arriving for the lumbar puncture Oct 21 2009
More of a grimace than a smile. Can you believe we got there on time? Not late for this important appointment!
XCell Clinic, Cologne Germany
This is Eduardus Hospital in Cologne. XCell Clinic is located on the second floor. BTW, I learned the elevator floor numbers are different, 1st floor is the floor above ground level (ground level is called Reception).Not the yellow brick road
This is not the Yellow Brick Road, just our old gravel drive. But it's where our Journey began. The photo was still on Eddie's camera. It was last Spring.
WooHoo THREE million!!!!
Great news today. Eddie's stem cell count was appx 3 million, with 90% viability (I think that means only 90% of them showed up to work).
I guess all those greens (mustard greens, collard greens, spinach ((high in iron))... he loves them all) that I've been fixing for him, worked. He's also been taking B12 shots, once a week for a month now.
I didn't get to take pictures of the lumbar injection procedure. They had Eddie sit on the side of an exam table, all hunched over. Neurosurgeon (I can't even begin to pronounce his name, but it wasn't Dr. John) asked me to stand facing Eddie with my hands on his shoulders. It couldn't have been comfortable for him since it took about 20 minutes or so to do the lumbar injection. They started with a local anesthetic injected into his back (after sterilizing the area with alcohol). In the States, when Eddie did spinals, they cleaned the area with Betadine first, then wiped it down with alcohol. Here they spray it with alcohol only.
Eddie did extremely well, though I had to "translate" his answers (are you in pain? feel any tingling?) back to the Dr. since Eddie's responses were muffled (his face was in his shirt front). Needles don't bother me, especially when I'm not the one at which they were aimed, so I suppose Eddie picked the right gal (some 32 yrs ago). Who would have known that?
My husband doesn't have faith in prayer. He believes in God, baptized many years ago. I think he's just too stubborn and independent to ask for help, even from God. I make up for it by doubling up on my prayers. I belonged to the Assembly of God church for many years. Yes, they are charismatic, laying on of hands, talking in tongues, and all that. Very strange for me to adhere to a faith that appears less than dignified, and somewhat unsophistocated to some people, but to each his own beliefs... whatever works, and I don't apologize. I'm reminded of a story about my Gma Hotson several years back. She was about eighty at the time, small and frail, used a walker to get around. One day she was alone at the house and heard a noise from the living room so went to investigate. Seems a young man, up to no good, had crawled through the kitchen window and was standing in the living room just a few feet away from her.
She shouted out, "Get thee behind me Satan, you are an offense to me and in my way". That guy almost beat himself to death trying to get out the patio door... never to be seen again. I always try to remember that in times of trouble.... get thee behind me Satan. ALS=Satan, robbing and stealing from my husband. Enough of the sermon. Suffice to say, I believe in prayer and appreciate all those coming his way.
So, those 25 vials had been condensed into one. A small syringe about the size of my pinkie finger. After injecting a local anasthetic, the same amount of spinal fluid was removed and replaced with the stem cell solution... and bandaged up.
Afterwards he was moved to a semi-private room (shared with the Canadian gentlemen we met Monday). He was told to lie flat for three hours and drink lots of fluids. He managed to get about 3/4 liter polished off. They don't let him leave until he has excreted said fluids. Another short story about my mother-in-law who used to babysit (and potty train) kids. If they made pee-pee in the potty, she would give them an M&M. So, I told Eddie when he was ready for an M&M, we could go. Enough said on that. We were out of there by about 2p.m. (see the clock?)
Tuesday, October 20, 2009
2 million stem cells, or less ?
Our son Mike asked what I meant about the 2 million stem cells, vs 25K or 700K. I don't understand it all myself. But the theory is that stem cells do the repair and rebuilding of damaged areas in the body. Bone marrow contains a load of stem cells, I understand that's where they are manufactured by the body. So that's why they extract those. Now remember, that I'm a CPA, no medical training, so I'll tell you how I understand it. And you medical folks out there can enjoy a good laugh on me if I'm wrong.
Eddie asked Dr. John what he knew about stem cell therapy (done in Costa Rica) using stem cells extracted from fat tissue. Dr. John (remember his English is not my English, so some is lost in my understanding) said that, in his opinion, fat stem cells would not work because they are already "turned on" as fat cells ... kind of like having their assignment and it's only for fat (think union labor... it's not my job kind of thing). Bone marrow hasn't been turned on yet, not assigned to a specific tissue or organ ...so supposedly they would home in on the damaged area and take on the assignment to repair or regenerate nerves (actually the covering around the nerves...like insulation on electrical wires).
ALS is a demylinating disease (boy, did I butcher that spelling), where the protective covering of the nerves is attacked. Causing a short circuit, so to speak. So Eddie looks like he has a muscle disorder, but it's not. Instead, the message from the brain is getting short circuited and not giving the proper signals for the muscles to work correctly. Dr B said it's like being in your car, standing on the brake, and floor boarding the gas ... it's just not effective.
So, back to the question about the count. If one wanted to build a brick wall and you had one worker, no matter how talented he/she was, it would take a long time. But if you had 10 guys working on it they'd make better progress...even though some of those guys might not show up for work. ALS is like the Great Wall of China, it's going to take lots and lots of talented guys (stem cells) showing up for work to get it done. Tomorrow they want to see the maximum number of stem cells in the count (appx 2 million), but they'll use all the guys that show up to work.
Hope that helps. If I get corrected by the medical profession, I'll do a retraction/correction.
Eddie asked Dr. John what he knew about stem cell therapy (done in Costa Rica) using stem cells extracted from fat tissue. Dr. John (remember his English is not my English, so some is lost in my understanding) said that, in his opinion, fat stem cells would not work because they are already "turned on" as fat cells ... kind of like having their assignment and it's only for fat (think union labor... it's not my job kind of thing). Bone marrow hasn't been turned on yet, not assigned to a specific tissue or organ ...so supposedly they would home in on the damaged area and take on the assignment to repair or regenerate nerves (actually the covering around the nerves...like insulation on electrical wires).
ALS is a demylinating disease (boy, did I butcher that spelling), where the protective covering of the nerves is attacked. Causing a short circuit, so to speak. So Eddie looks like he has a muscle disorder, but it's not. Instead, the message from the brain is getting short circuited and not giving the proper signals for the muscles to work correctly. Dr B said it's like being in your car, standing on the brake, and floor boarding the gas ... it's just not effective.
So, back to the question about the count. If one wanted to build a brick wall and you had one worker, no matter how talented he/she was, it would take a long time. But if you had 10 guys working on it they'd make better progress...even though some of those guys might not show up for work. ALS is like the Great Wall of China, it's going to take lots and lots of talented guys (stem cells) showing up for work to get it done. Tomorrow they want to see the maximum number of stem cells in the count (appx 2 million), but they'll use all the guys that show up to work.
Hope that helps. If I get corrected by the medical profession, I'll do a retraction/correction.
Musings
Just a few tidbits of personal observations. Mostly to give my Sis something to read since she checks in frequently..LOL.
Any emails to us are appreciated, Eddie smiles when I read them to him (mail from home, right?). Reminds me that I need to send more to nephew Eli who is deployed with the Army... I'm sure he likes to hear from home too. Hope Rosie gave him the blog address so he will have something to while away the hours there. Eddie says I write just like I talk (minus a few colorful words when I get frustrated), and probably with an good ole Oklahoma drawl too.
First, I get such a chuckle when I log into blogspot here. The websites come up in German. Guess what the block for "email address" is called in German? Nutzername ! I find that hilarious, like they knew I was coming. I might get a t-shirt made that has
Nutzername = okla_meemaw
imprinted on the front. My private joke.
Then for those other old folks out there (like me and Eddie) who don't text on cellphones. BTW does not stand for Booker T. Washington High School (where he attended many moons ago). You should have seen the puzzled look on his face when he pointed at that!! It's texting shorthand for By The Way. I'm blessed to have lots of younguns (that's anyone under 40 for me) who answer my ignorant questions (and I have a million of them), and they keep me up-to-date. I think it keeps one young to be around younguns, as long as you keep an open mind! And I can text too, just very slowly. I always say you CAN teach an old dog new tricks, you just have to speak very, very slowly and be repetitive...LOL (and BTW, that stands for Laughing out Loud).
Second, one of the great challenges here is the small hotel room. Think Motel 6 size. It's very clean and looks newly renovated though. The toilet flusher is really different, but we figured that out right away. And for some reason, they don't provide washcloths but I'd read that online so packed some with us. As a matter of fact, I packed so much "stuff" there wasn't much room left for clothes. The room size is a challenge because the wheelchair and walker stay here with us. Then there is a desk, small table and two chairs as well. We're used to 2.5 bathrooms too. So we work around the room like a maze (keeps the mind sharp, like working a puzzle). Move the walker to get to the desk, move the wheelchair to get to the bathroom on the walker, move the luggage to get to the bed. Everyone ought to try it, good exercise too....LOL
Third, there are only two english-speaking channels on TV. CNN (which mr. conservative news guy Eddie doesn't like, he wants FOX) and the BBC news. Eddie is probably suffering from withdrawal symptoms because of no talk radio, but once again, he'll have to suffer through. I don't think it will leave a permanent scar.
Fourth, our first-born Grandson Corey can get extra credit with his Science teacher if he submits an interesting report on a science topic. I figure he can't miss. A 12-yr old writing about stem cell therapy has got to be a winner, right? So I'm saving the pictures of the procedure for his teacher too. Also bringing back a set of their coin currency for show-and-tell. I don't think the youngest Grands will grasp the significance of the trip but I'm saving coins for them too.
Fifth, to my smartie pants son. Quit making fun of your Mama's typos ... I'm struggling here on an unfamilair laptop. Be kind to your Mama, she taught you better.....LOL
Sixth, to Dr. B at MDA (if you are checking in) and Cousin Dr. David .... if you have any questions you want me to ask Dr. John about the procedure, just let me know. I am not shy, though the language barrier makes my questions, possibly, not understood well. I really don't know if this stuff works or not. It appears it may have some affect, if only for a short period of time (unless it's all in the patient's mind). All I know is, they should do it in the U.S. if only to allow our doctors to make the boatload of money that's being spent abroad! If I met three other patients in the two hours we were there, and they had already done 8 procedures...Holy Cow, we could pay off the government deficit in record time! I repeat again, selling hope is big business. (Sorry kids, but Daddy's spending your 'inheritance'!)
Those close to me know that I was completely against this trip. I have no confidence in stem cell therapy at this stage of it's development...though it will be a miracle cure for many diseases one day, I'm sure. But, if I had refused to bring Eddie here and his condition worsened, he would always blame me for not allowing him the opportunity to find out if it would help his ALS. And I couldn't live with that. So I sucked it up and got moving. Kind of like taking the trash to the curb or doing laundry... it's not something I relish, but it needs to be done anyway.
Seventh, German Dr. John does have a sense of humor. I asked if they had filmed a video of the procedure that I could refer people to (like UTube). He told us the story of their attempt to film a educational video, with his wife as the patient. The actual procedure, mind you, on film. He promised her it wouldn't hurt... but apparently it did (and does in about 10% of people). She told him it hurt, he told her.... not possible. She said, that's my ass and I know when it hurts! Needless to say the film was not as educational as they planned so they don't have it available for distribution. It was so funny!
Any emails to us are appreciated, Eddie smiles when I read them to him (mail from home, right?). Reminds me that I need to send more to nephew Eli who is deployed with the Army... I'm sure he likes to hear from home too. Hope Rosie gave him the blog address so he will have something to while away the hours there. Eddie says I write just like I talk (minus a few colorful words when I get frustrated), and probably with an good ole Oklahoma drawl too.
First, I get such a chuckle when I log into blogspot here. The websites come up in German. Guess what the block for "email address" is called in German? Nutzername ! I find that hilarious, like they knew I was coming. I might get a t-shirt made that has
Nutzername = okla_meemaw
imprinted on the front. My private joke.
Then for those other old folks out there (like me and Eddie) who don't text on cellphones. BTW does not stand for Booker T. Washington High School (where he attended many moons ago). You should have seen the puzzled look on his face when he pointed at that!! It's texting shorthand for By The Way. I'm blessed to have lots of younguns (that's anyone under 40 for me) who answer my ignorant questions (and I have a million of them), and they keep me up-to-date. I think it keeps one young to be around younguns, as long as you keep an open mind! And I can text too, just very slowly. I always say you CAN teach an old dog new tricks, you just have to speak very, very slowly and be repetitive...LOL (and BTW, that stands for Laughing out Loud).
Second, one of the great challenges here is the small hotel room. Think Motel 6 size. It's very clean and looks newly renovated though. The toilet flusher is really different, but we figured that out right away. And for some reason, they don't provide washcloths but I'd read that online so packed some with us. As a matter of fact, I packed so much "stuff" there wasn't much room left for clothes. The room size is a challenge because the wheelchair and walker stay here with us. Then there is a desk, small table and two chairs as well. We're used to 2.5 bathrooms too. So we work around the room like a maze (keeps the mind sharp, like working a puzzle). Move the walker to get to the desk, move the wheelchair to get to the bathroom on the walker, move the luggage to get to the bed. Everyone ought to try it, good exercise too....LOL
Third, there are only two english-speaking channels on TV. CNN (which mr. conservative news guy Eddie doesn't like, he wants FOX) and the BBC news. Eddie is probably suffering from withdrawal symptoms because of no talk radio, but once again, he'll have to suffer through. I don't think it will leave a permanent scar.
Fourth, our first-born Grandson Corey can get extra credit with his Science teacher if he submits an interesting report on a science topic. I figure he can't miss. A 12-yr old writing about stem cell therapy has got to be a winner, right? So I'm saving the pictures of the procedure for his teacher too. Also bringing back a set of their coin currency for show-and-tell. I don't think the youngest Grands will grasp the significance of the trip but I'm saving coins for them too.
Fifth, to my smartie pants son. Quit making fun of your Mama's typos ... I'm struggling here on an unfamilair laptop. Be kind to your Mama, she taught you better.....LOL
Sixth, to Dr. B at MDA (if you are checking in) and Cousin Dr. David .... if you have any questions you want me to ask Dr. John about the procedure, just let me know. I am not shy, though the language barrier makes my questions, possibly, not understood well. I really don't know if this stuff works or not. It appears it may have some affect, if only for a short period of time (unless it's all in the patient's mind). All I know is, they should do it in the U.S. if only to allow our doctors to make the boatload of money that's being spent abroad! If I met three other patients in the two hours we were there, and they had already done 8 procedures...Holy Cow, we could pay off the government deficit in record time! I repeat again, selling hope is big business. (Sorry kids, but Daddy's spending your 'inheritance'!)
Those close to me know that I was completely against this trip. I have no confidence in stem cell therapy at this stage of it's development...though it will be a miracle cure for many diseases one day, I'm sure. But, if I had refused to bring Eddie here and his condition worsened, he would always blame me for not allowing him the opportunity to find out if it would help his ALS. And I couldn't live with that. So I sucked it up and got moving. Kind of like taking the trash to the curb or doing laundry... it's not something I relish, but it needs to be done anyway.
Seventh, German Dr. John does have a sense of humor. I asked if they had filmed a video of the procedure that I could refer people to (like UTube). He told us the story of their attempt to film a educational video, with his wife as the patient. The actual procedure, mind you, on film. He promised her it wouldn't hurt... but apparently it did (and does in about 10% of people). She told him it hurt, he told her.... not possible. She said, that's my ass and I know when it hurts! Needless to say the film was not as educational as they planned so they don't have it available for distribution. It was so funny!
Monday, October 19, 2009
Sounds weird, but I insist on maintaining a sense of humor
I don't want anyone to think I don't understand that this is a serious medical procedure! My coping mechanism is a close circle of friends and family, and keeping a sense of humor. I make Eddie laugh, and that is good medicine for him.
So, I wanted to share one final photo. I was intrigued by this little sign that I saw everywhere here, but couldn't figure out what it meant. Look at it and you can see it is directions to an emergency exit.
But I told Eddie that, for me, it's the international sign for Stem Cells to the Rescue! What do you think? I like mine better.
BTW, I'm a real slowpoke on this blogger stuff, a real amateur. He took about an hour's nap, got up for a cup of coffee and has been reading a book for a while now. He says his hip does not hurt, doesn't even feel tender to the touch. So all is well in room 409, Cologne Germany tonight! I'm still walking upright and have my sense of humor.
He hasn't gotten to see the pictures yet, or my rendition of the procedure. It's his turn to sit at the laptop for a bit. If he has any additional comments, I'll post them later. Now where are those pastries??
Remarkable
Take a look at the clock. Our appointment was at one. The procedure began about 1:30. The entire procedure took about an hour from donning the gowns and such, and returning to the waiting area. Finale
Bandaged until tomorrow only...and yes Mama, he wore clean underwear. Then I got him on his feet and back to the waiting area to phone for a taxi.
No permanent damage to his hip
Dr John is pointing out that the procedure only leaves a small pinhole. I think he is quite proud of his work. Eddie asked how many procedures he had done. Today? Eight! Big, big business selling hope.
All done (graphic) last vial
Kind of icky for us non-medical types. But as you can see all the vials filled now, and are being taken away to a special lab, where it's cleaned up and the stem cells are extracted from the marrow....and counted. Best hope is to have appx 2 million stem cells in the solution for the lumbar puncture on Wednesday (10/21). We are told that it only takes a few stems cells if they are true warriors, but we think they don't really know. Eddie says there are force in numbers, so the higher the count the better. The fellow from Canada had 500K, but they use what you have.New drill hole
Dr John picked a new spot here. He doesn't remove the drill, just backs it out a bit and punctures a new area. The blue handle is in two pieces, sort of nested together at the handle. The top part of the handle is removed and leaves an opening in the remaining handle where the vials are inserted, one after another.Positioning
That's the Wizard himself. And we aren't in Kansas anymore. You get an idea of the positioning. Eddie's back hurts all the time, but he's extremely uncomfortable when he's lying down, so he handled it very well. He's on his left side. The bone marrow was taken from his right hip. The marrow itself is very thick, like jelly the Dr. said.
Procedure continues (warning.. blood here)
The procedure (starts getting graphic here!!)
I took many, many photos during the procedure, but many were repetitive, vial after vial. Eddie's little inexpensive camera took some pretty good quality images. I was sitting at the foot of the table that he was lying on, so very close. Considering we did not know how to use this camera, I'm guessing it had autofocus. So here's the real deal!
The hand drill came first. The right hand photo was the first draw of bone marrow. Eddie said that part was a bit painful, but only on the first draw at each of the three different sites. Dr. said that (discomfort) was a sign that he was in the right place.
Preparations
That's Dr John (the Wizard himself) scrubbing in. See all the vials on the table? I did not count the ones that were there originally, but the young lady in the background kept adding new ones and taking the full ones. Twenty-five in all! From three locations in the hip, each appx 5 mm from the previous "drill" site.
Notice the hand drill with the blue handle? That's like a cork screw (for wine), but with a little "drill bit" tip on the end. Apparently the hip bone is not as dense as I thought, it took very little effort on Dr John's part to insert it.
They put bonnets, shoe covers, masks and gowns on us too. I missed that photo op, and it would have been a doozie!
Show me the money!
I got this one out of order. Of course we had to pay first.
Anyone interested in stem cell therapy at XCell Clinic Cologne, Germany? 7545 Euros, cash in advance. You can do the math, the exchange rate when we left was about 1.5 U.S. =1.o Euro
Eddie says they are "selling hope" and apparently that does not come cheap. So what am I smiling about? Because I still had my hands on the money!
Taking blood (not graphic)
Taking Eddie's blood for tests.
We met three other patients there. One young man from Iowa who had Cerebral Palsy (I'm butchering the spelling, but you get the drift). He was there with his Dad, first timer, like us.
Also, there for the first time, was a middle eastern fellow with a spinal cord injury, from Michigan. On the job acciddent, his company had dropped insurance coverage three days before his accident. Wouldn't matter for this procedure, because it is payable in cash.
Also waiting with us was a nice couple from Poland, now living in Canada. This was their second visit, the last visit was a year ago. Husband suffers from Parkinsonism. I assume that means symptoms of Parkinson's (like Harry's, he displayed no tremors). She said he improved somewhat after the first treatment for about 10 months, then declined quickly the past two months).
First step, completed!
I'm going to attempt to upload lots of pictures. The German doctor (Dr. John...aka the Wizard) didn't mind at all, I suppose they don't have the malpractice issues like the U.S.
Since these come up on the blog in reverse order (newest post first), I'm posting, basically, from the bottom up...so it will make more sense if you start at the bottom of this post. I'll reiterate again (it will show at the top)when I'm finished so as to warn anyone, like on TV... it may be graphic in nature. Mostly because there are some pics with blood showing and some folks may be squeemish about it (like my good gal work buddy, TK). You might find these more technical than you want to see, but Steve may be interested because you can't watch it being done to yourself (right Steve and Fran?). Also Dr. B at the OKC MDA Clinic asked me to pass along the blog address so he might be interested in the technical stuff, along with nursing student (Daughter dear), my baby sister Jodi R.N, Eddie's team of folks at PT, and Rosie too! I'll publish each pic post as I go along so as not to clog things up. I'm having a tough time getting them to pull in, but I'm sure that's operator error (me being said operator).
All in all, Eddie did a great job, really hung in there! I got him back to the hotel without incident, unless you count unloading him from the taxi in the middle of a very narrow cobblestone street. I'm getting quite bold at just making stuff happen, I figure any cars can wait on us, or back up...their choice. I usually don't like to inconvenience people, and still don't for myself... but when you are entrusted with someone else's care, and they can't do it themselves...it's different somehow. And amazingly he trusts me. Don't quite understand that, but it makes me walk a bit taller here.
From the cobblestone street (with the help of the taxi driver...read big tip)... over the curbing, into the hotel, and up to room 409 (Eddie remembers because of the song... She's real fine, My 409... me, because of the household cleaner...either way we find our way back "home").
I left him for another 3-4 blk walk to the rail station. Picked up Wurst (of some kind.. they had three varieties), kraut, and potatoes...good German fare, fast food style, and lots (5 kinds!) of those awesome pastries, for a late afternoon lunch...and bottled (still) water.
He was asleep in his chair when I returned. He ate, took a Tylenol, and I tucked him into bed for a nap.
Since these come up on the blog in reverse order (newest post first), I'm posting, basically, from the bottom up...so it will make more sense if you start at the bottom of this post. I'll reiterate again (it will show at the top)when I'm finished so as to warn anyone, like on TV... it may be graphic in nature. Mostly because there are some pics with blood showing and some folks may be squeemish about it (like my good gal work buddy, TK). You might find these more technical than you want to see, but Steve may be interested because you can't watch it being done to yourself (right Steve and Fran?). Also Dr. B at the OKC MDA Clinic asked me to pass along the blog address so he might be interested in the technical stuff, along with nursing student (Daughter dear), my baby sister Jodi R.N, Eddie's team of folks at PT, and Rosie too! I'll publish each pic post as I go along so as not to clog things up. I'm having a tough time getting them to pull in, but I'm sure that's operator error (me being said operator).
All in all, Eddie did a great job, really hung in there! I got him back to the hotel without incident, unless you count unloading him from the taxi in the middle of a very narrow cobblestone street. I'm getting quite bold at just making stuff happen, I figure any cars can wait on us, or back up...their choice. I usually don't like to inconvenience people, and still don't for myself... but when you are entrusted with someone else's care, and they can't do it themselves...it's different somehow. And amazingly he trusts me. Don't quite understand that, but it makes me walk a bit taller here.
From the cobblestone street (with the help of the taxi driver...read big tip)... over the curbing, into the hotel, and up to room 409 (Eddie remembers because of the song... She's real fine, My 409... me, because of the household cleaner...either way we find our way back "home").
I left him for another 3-4 blk walk to the rail station. Picked up Wurst (of some kind.. they had three varieties), kraut, and potatoes...good German fare, fast food style, and lots (5 kinds!) of those awesome pastries, for a late afternoon lunch...and bottled (still) water.
He was asleep in his chair when I returned. He ate, took a Tylenol, and I tucked him into bed for a nap.
Off to see the Wizard
Leaving soon for the XCell clinic. He really enjoyed the OU updates...even though OU sucked.
Eddie is laughing at me because I can type as fast, and as long as I can talk, and with a captive audience no less (guess you don't have to read it). I think he likes it though since he's promised me a new laptop when we get home. Thank you Daughter, for lending us yours for the trip...along with the ITouch that he's trying to wear out here. Now if I can figure out how to play the DVD movies we brought, we'll be good. Many of you know that I typed the Sunday morning service for the deaf church in Tulsa for several years, so my typing speed increased considerably. I've thought about checking into Closed Captioning training but never got around to it. Oh well, I'll put it on the Bucket List.
Eddie loves the hotel because of the buffet breakfast, thinks I picked it personally, but it was luck of the draw. I'm taking full credit though. I just requested the travel agent get free breakfast each a.m. with the room, so he wouldn't have to travel each morning just to eat.
Closing now to get a taxi. Updates to come!
Eddie is laughing at me because I can type as fast, and as long as I can talk, and with a captive audience no less (guess you don't have to read it). I think he likes it though since he's promised me a new laptop when we get home. Thank you Daughter, for lending us yours for the trip...along with the ITouch that he's trying to wear out here. Now if I can figure out how to play the DVD movies we brought, we'll be good. Many of you know that I typed the Sunday morning service for the deaf church in Tulsa for several years, so my typing speed increased considerably. I've thought about checking into Closed Captioning training but never got around to it. Oh well, I'll put it on the Bucket List.
Eddie loves the hotel because of the buffet breakfast, thinks I picked it personally, but it was luck of the draw. I'm taking full credit though. I just requested the travel agent get free breakfast each a.m. with the room, so he wouldn't have to travel each morning just to eat.
Closing now to get a taxi. Updates to come!
Sunday, October 18, 2009
Tomorrow's procedure
This is what we came for. The first step of the procedure will be tomorrow (Monday) at 1pm Germany time. This is when they extract bone marrow from Eddie's hip, so you won't hear much from us until I have him back and resting.
Love to everyone! Thank you for all the prayers... I believe it's working in our favor. Praise the Lord!
Love to everyone! Thank you for all the prayers... I believe it's working in our favor. Praise the Lord!
Who wants to be a hero .... OU update ??
Eddie really doesn't care what I'm writing so I could probably tell you all sorts of things about him...LOL. BUT, he discovered he can't get any info here on the local college football game outcomes. Particularly the OU game. Would somebody, anybody email me at okla_meemaw@yahoo.com, (that's okla underscore meemaw) or just click on the comment area below and give him all the scoop on the game, plus any others in our area you think he might be interested in? He'd love it! If you leave a comment, include your name...otherwise it will just post as anonymous (but I'll get email notification too).. because I want him to know who his sports reporting hero is!
Entourage at Frankfort
Finally, finally, got the pic to upload. I was so pleased with this group of people in Frankfort. Lufthansa and Bahn (railway) were awesome. You see Eddie already loaded on the platform, waiting for our train. They roll him on from one direction, then adjust the height to the train, let the ramp down on the opposite side to match the train height and roll him off. The two ladies in the picture are operating the lift. The black fellow was our steward for the train. They had mixed up our "special service" request, though I had a confirmation, but he overheard us at the service desk and walked all the way to the train with us (of course he was going that way anyway), and went above and beyond the call of duty to take charge, and care of Eddie. The fellow to his right is our luggage porter. You can't imagine how far he pushed that cart to get where we are in the picture...and that was after they sorted out our luggage at customs. The other two guys are about to roll the refreshment cart on after us (they must have know we were coming...LOL).
I told them there were a total of three pieces. Two suitcases and the walker with Eddie's special abduction pillow I had all wrapped (and wrapped, and wrapped) up together in a bundle, then a Frontier bag around it (AA had no bags at TUL...cutbacks!, so they "borrowed" a Frontier bag). Really tacky looking but effective. Like a true Okie, I've packed a big roll of tape to bundle it all back up coming home. Okies can do damned near anything with duct tape, but I chose clear plastic (classy, huh?).
Well, there were actually four pieces of "luggage" total! They had tagged the wheelchair that Eddie was sitting in for loading at the plane door. So, when we got that squared away, the porter led the way to the station, found the elevators, over the walkway, down another elevator then way down the platform.
I need to back up a bit to tell you all about the service at Frankfort. Of course we were the last ones off the plane, and the onboard "wheelchair" routine again. If anyone who can't walk wants to travel by air, you might want to re-think it. That onboard "wheelchair" is a joke. It is little more than a utility two-wheeler with a tiny, unpadded seat attached. It takes two people and more muscle than I have to move it around. They just tug and lift and yank to even get it to the aisle. Eddie says they handle you like a bag of potatoes. The guy at Chicago was just awful (I'll tell you that one later). So it's not been a bed of roses, but he's never been (and won't be) harmed.
So the good story. We were met a the plane by FRA Services. A sweet young woman, pleasant, excellent English. She pushed the wheelchair (not the tiny one from hell, but Eddie's custom chair) about a mile through the airport with me jogging along beside her. Took us to Immigration and that was a breeze. Then another gazillion blocks to their offices and waiting room. Since the train didn't leave for another two hours, they wanted us to wait there. It seems the rail platform is open and very cold, with no comfortable area to wait. They had hot beverages, and a handicapped bathroom. We were picked up by a second, pleasant young woman about 45 mins before train time. That was where the mix up on the luggage came in, though Customs was mostly a wave of the hand. That young lady handed us off to the porter (in picture) who took us all the way to the train and stayed until the luggage and Eddie were onboard. The steward took over after that, then the porter in Cologne took us all the way thru the huge train station and to a taxi. We were escorted and cared for so very well. I can't say enough wonderful things about the Germany Lufthansa ground crew.
The taxi ride started off poorly. The eager taxi driver began loading our stuff in his vehicle... I loaded Eddie. Then he found out how much we had (duh, it was sitting in front of him), and he began to grumble and tried to pass us off to a larger taxi. Nope. As tired as Eddie was, I was not going to unload him again. Then when he learned we were only traveling a few blocks he really began to grumble...something about dumkoff, I think. I stood my ground, told the other taxi driver to load up the luggage and follow us to the hotel (english, pantomine, large hand gestures, and a bit of American Sign Language). That was the easiest 10Euros (for a 4Euro taxi ride) that dumkoff made that day, I'm sure. The luggage guy got 5Euros....and we all learned a lesson about getting in a rush.
I told them there were a total of three pieces. Two suitcases and the walker with Eddie's special abduction pillow I had all wrapped (and wrapped, and wrapped) up together in a bundle, then a Frontier bag around it (AA had no bags at TUL...cutbacks!, so they "borrowed" a Frontier bag). Really tacky looking but effective. Like a true Okie, I've packed a big roll of tape to bundle it all back up coming home. Okies can do damned near anything with duct tape, but I chose clear plastic (classy, huh?).
Well, there were actually four pieces of "luggage" total! They had tagged the wheelchair that Eddie was sitting in for loading at the plane door. So, when we got that squared away, the porter led the way to the station, found the elevators, over the walkway, down another elevator then way down the platform.
I need to back up a bit to tell you all about the service at Frankfort. Of course we were the last ones off the plane, and the onboard "wheelchair" routine again. If anyone who can't walk wants to travel by air, you might want to re-think it. That onboard "wheelchair" is a joke. It is little more than a utility two-wheeler with a tiny, unpadded seat attached. It takes two people and more muscle than I have to move it around. They just tug and lift and yank to even get it to the aisle. Eddie says they handle you like a bag of potatoes. The guy at Chicago was just awful (I'll tell you that one later). So it's not been a bed of roses, but he's never been (and won't be) harmed.
So the good story. We were met a the plane by FRA Services. A sweet young woman, pleasant, excellent English. She pushed the wheelchair (not the tiny one from hell, but Eddie's custom chair) about a mile through the airport with me jogging along beside her. Took us to Immigration and that was a breeze. Then another gazillion blocks to their offices and waiting room. Since the train didn't leave for another two hours, they wanted us to wait there. It seems the rail platform is open and very cold, with no comfortable area to wait. They had hot beverages, and a handicapped bathroom. We were picked up by a second, pleasant young woman about 45 mins before train time. That was where the mix up on the luggage came in, though Customs was mostly a wave of the hand. That young lady handed us off to the porter (in picture) who took us all the way to the train and stayed until the luggage and Eddie were onboard. The steward took over after that, then the porter in Cologne took us all the way thru the huge train station and to a taxi. We were escorted and cared for so very well. I can't say enough wonderful things about the Germany Lufthansa ground crew.
The taxi ride started off poorly. The eager taxi driver began loading our stuff in his vehicle... I loaded Eddie. Then he found out how much we had (duh, it was sitting in front of him), and he began to grumble and tried to pass us off to a larger taxi. Nope. As tired as Eddie was, I was not going to unload him again. Then when he learned we were only traveling a few blocks he really began to grumble...something about dumkoff, I think. I stood my ground, told the other taxi driver to load up the luggage and follow us to the hotel (english, pantomine, large hand gestures, and a bit of American Sign Language). That was the easiest 10Euros (for a 4Euro taxi ride) that dumkoff made that day, I'm sure. The luggage guy got 5Euros....and we all learned a lesson about getting in a rush.
Eddie's Entourage
You can double click on the pic to enlarge it. Not a good pic of Eddie's face, but you'll still recognize him!
Saturday, October 17, 2009
If I were a stand up comic
Oh we don't just tell the stories, we live them! So there we were in the Red Carpet Lounge at O'Hare Airport. We had been there off and on for 6 hrs, helping ourselves to the free snacks and beverages. This is mostly business people (frequent flyers?) and those who fly Business or First Class often. Picture a very subdued atmosphere, people hunched over laptops, CNN or sports turned down discretely so as not to disturb others. And then there is us!
Like I said earlier, we found there was a mens and ladies restroom in the lounge, plus a unisex... single restroom, handicapped accessible, lock on the door. A blessing. It was the second time I helped Eddie to the restroom, got him situated on the toilet, then stepped out and "guarded" the unlocked door (so he could have some privacy). But this was the final stop before we left for our gate and departure, only two hours away from leaving Chi in our rear view mirror (one hour before pre-boarding)...off to see the Wizard. And, somehow, I locked the bathroom door when I wnt out! Eddie inside on the toilet, can't reach the doorknob, can't get into the wheelchair without assistance, and I kind of freaked out. I don't think I caused a huge scene...that was all playing out in my head. But I did raise my voice to let him know it was okay and I'd get "help".
I went to the host/hostess/bouncer desk and waited for them to end their discussion with a "real" member of the Red Carpet Club. Couldn''t stand the wait, so when and found someone who would interrupt the conversation. Trying to make them understand, yes he was in there, no he couldn't unlock the door for me, etc, etc. Then their master key wouldn't release the lock. I pictured lazy, slow moving, maintenance guys (late on a Friday night) making their way over to drill the lock and me watching our plane fly away! Luckily, the hostess came around with the same key they had tried earlier.... and it worked!!
I'm serious when I say I did not accidently lock that door... it would almost be impossible to do it on purpose...so I think the lock malfunctioned. Eddie was sitting there unconcerned, and I was ready to lie down somewhere...anywhere and wait for the adrenaline (ms) to wear off!
Like I said earlier, we found there was a mens and ladies restroom in the lounge, plus a unisex... single restroom, handicapped accessible, lock on the door. A blessing. It was the second time I helped Eddie to the restroom, got him situated on the toilet, then stepped out and "guarded" the unlocked door (so he could have some privacy). But this was the final stop before we left for our gate and departure, only two hours away from leaving Chi in our rear view mirror (one hour before pre-boarding)...off to see the Wizard. And, somehow, I locked the bathroom door when I wnt out! Eddie inside on the toilet, can't reach the doorknob, can't get into the wheelchair without assistance, and I kind of freaked out. I don't think I caused a huge scene...that was all playing out in my head. But I did raise my voice to let him know it was okay and I'd get "help".
I went to the host/hostess/bouncer desk and waited for them to end their discussion with a "real" member of the Red Carpet Club. Couldn''t stand the wait, so when and found someone who would interrupt the conversation. Trying to make them understand, yes he was in there, no he couldn't unlock the door for me, etc, etc. Then their master key wouldn't release the lock. I pictured lazy, slow moving, maintenance guys (late on a Friday night) making their way over to drill the lock and me watching our plane fly away! Luckily, the hostess came around with the same key they had tried earlier.... and it worked!!
I'm serious when I say I did not accidently lock that door... it would almost be impossible to do it on purpose...so I think the lock malfunctioned. Eddie was sitting there unconcerned, and I was ready to lie down somewhere...anywhere and wait for the adrenaline (ms) to wear off!
Cologne Germany arrival at last
Well, we are here at last! At the beginning of each step of the trip, he would look at me and say "we're off to see the wizard". Every time anything went well, I would tell him .... look in my eyes, and repeat after me "Patti you did good"... then we'd both start laughing. He's laughing now, as I'm reading my post out loud to him. Of course he's cleaned up, fresh clothes, and two large beers down (from the hotel lobby). One Kolsch (good local beer) and one large, dark Bavarian beer..he does like his beer. I was concerned because he chose to restict fluids for most of the trip so we wouldn't have to struggle with unfamiliar toilet facilities. He did have several drinks last night at the Red Carpet, because we found a private unisex toilet there (I'll post later about our toilet adventure). Beer is certainly not the best thing to use to replenish fluids, but it will flush his kidneys quickly, and relax him as well. He and I only got about 4 hrs sleep on the plane last night, so hopefully we can get lots of sleep tonight and tomorrow. Before I elaborate about my thoughts on the trip, I asked Eddie what he wanted to mention about the trip so far.
He loved the oatmeal raisin cookies on Amer. Airlines, he also loved the mixed nuts that they served us warm in small pottery-type dishes. Those of you who know him well, know he enjoys his food and drink. You can't tell it from his weigh now, but he still has a very good appetite...he just burns so many calories moving on the walker.
He also raves about the Lufthansa (ground) special services crew at Frankfort, and the Bahn staff for special services at the Frankfort station, and Cologne too. We brought his small camera rather than the larger one, so I'm hoping to upload a picture of him and his "entourage" in Frankfort. BUT most of all, he's glad the long flight over here is completed.
I'm having a bit of trouble with the WiFi here at the hotel right now so will edit and re-publish this post and try another segment later. With luck we'll have pictures!
Love to all!
He loved the oatmeal raisin cookies on Amer. Airlines, he also loved the mixed nuts that they served us warm in small pottery-type dishes. Those of you who know him well, know he enjoys his food and drink. You can't tell it from his weigh now, but he still has a very good appetite...he just burns so many calories moving on the walker.
He also raves about the Lufthansa (ground) special services crew at Frankfort, and the Bahn staff for special services at the Frankfort station, and Cologne too. We brought his small camera rather than the larger one, so I'm hoping to upload a picture of him and his "entourage" in Frankfort. BUT most of all, he's glad the long flight over here is completed.
I'm having a bit of trouble with the WiFi here at the hotel right now so will edit and re-publish this post and try another segment later. With luck we'll have pictures!
Love to all!
Friday, October 16, 2009
Made it to Chicago
Greetings from Chicago O'Hare, compliments of United's awesome Red Carpet Lounge. Apparently Luftstansa "borrows" space from United, and we can use their lounge due to the Lufstansa Business class. Unfortunately, it's 8 pm now and I just figured out how to get on the WiFi. O'Hare touts free WiFi anywhere. But, apparently it's blocked in the lounge since their Red Carpet folks all use a special TMobile WiFi. The host here just granted me a one day pass (actually about one hour now!) so I could get online and check in with everyone.
Coming out of Tulsa was somewhat uneventful. Great flight, good lunch, wonderful warm oatmeal cookies (Eddie loved them). I'll have time to go on and on when we finally get to the hotel in Germany, but trying to make it quick here.
I failed to update our itinerary about NOT spending the night in Chicago. A few got a bit of a panic. We did not fly out on the 15th and spend the night, but flew out on the 16th (today) and have spent the entire day here.
AA in Tulsa loaded Eddie first. It was an anxious moment for me because we had to move him from his wheelchair to this tiny, rickety onboard wheelchair. The seat was about the size of a dinner plate, and it was not a smooth ride. They did strap him in well, and we got him through the door. Due to the contractures in his feet, they wouldn't fit on the foot rest, so had to manuever that around. Sooo .. we were in the first seat on the plane, that was a good thing.
I actually lifted him from the seated position, while he pushed against the armrests, and I got him in an somewhat upright postion with a little muscle... he slid one foot over...kind of sidestepped, I had them slide the tiny chair under him and they strapped him in. It wasn't quite as easy to get him into the seat since the arm didn't lift out of the way, but again, a bit of muscle (I'm talking old lady muscle...LOL), and we got him pivoted into the seat.
Unfortunately, Lufthansa says he will have to use that onboard wheelchair again on their plane... and we are on row 18! Oh well, once he's strapped in and lugged about, a few more rows shouldn't matter.
We've been hanging aroung O'Hare for several hours now. I think I've walked about 10 miles today (kidding, but I bet I've walked two or three, easy). Since this is such a large plane (Airbus 330) they will pre-board early. I'm expecting to get onboard by 8pm, and we should both be snoring by the time we hit 35,000'. He's pooped now too, but being a good sport.
I swear we've done nothing but eat since we left home this morning. Eddie wanted a burger from a place here at the airport so we loaded up on that too. Hopefully, I can walk it off on this trip.
Don't worry about us, unless I tell you to, okay? It may be a day or so until I can get enough sleep, figure out this WiFi stuff and get back online. Otherwise, we've still got a sense of humor, and I'm still walking upright, so we are doing well.
Love to all! Thanks for the prayers...keep em coming.
Coming out of Tulsa was somewhat uneventful. Great flight, good lunch, wonderful warm oatmeal cookies (Eddie loved them). I'll have time to go on and on when we finally get to the hotel in Germany, but trying to make it quick here.
I failed to update our itinerary about NOT spending the night in Chicago. A few got a bit of a panic. We did not fly out on the 15th and spend the night, but flew out on the 16th (today) and have spent the entire day here.
AA in Tulsa loaded Eddie first. It was an anxious moment for me because we had to move him from his wheelchair to this tiny, rickety onboard wheelchair. The seat was about the size of a dinner plate, and it was not a smooth ride. They did strap him in well, and we got him through the door. Due to the contractures in his feet, they wouldn't fit on the foot rest, so had to manuever that around. Sooo .. we were in the first seat on the plane, that was a good thing.
I actually lifted him from the seated position, while he pushed against the armrests, and I got him in an somewhat upright postion with a little muscle... he slid one foot over...kind of sidestepped, I had them slide the tiny chair under him and they strapped him in. It wasn't quite as easy to get him into the seat since the arm didn't lift out of the way, but again, a bit of muscle (I'm talking old lady muscle...LOL), and we got him pivoted into the seat.
Unfortunately, Lufthansa says he will have to use that onboard wheelchair again on their plane... and we are on row 18! Oh well, once he's strapped in and lugged about, a few more rows shouldn't matter.
We've been hanging aroung O'Hare for several hours now. I think I've walked about 10 miles today (kidding, but I bet I've walked two or three, easy). Since this is such a large plane (Airbus 330) they will pre-board early. I'm expecting to get onboard by 8pm, and we should both be snoring by the time we hit 35,000'. He's pooped now too, but being a good sport.
I swear we've done nothing but eat since we left home this morning. Eddie wanted a burger from a place here at the airport so we loaded up on that too. Hopefully, I can walk it off on this trip.
Don't worry about us, unless I tell you to, okay? It may be a day or so until I can get enough sleep, figure out this WiFi stuff and get back online. Otherwise, we've still got a sense of humor, and I'm still walking upright, so we are doing well.
Love to all! Thanks for the prayers...keep em coming.
Wednesday, October 14, 2009
Our big ole dog
Many of you know we have a big ole sweetheart weimeriener. She is a beautiful dog, and so good tempered. I tell everyone we seem to go for the pretty ones, because she doesn't appear to have the intelligence. When Eddie first began having trouble, I asked if we should try to find her a new home. She's 74 pounds of playful energy, and I was afraid she would unintentionally bump him and knock him down. Eddie said there is a lot to be said for sheer companionship (not quite sure where that places me, but I'll let that be). Well, she does seem intelligent after all, and compassionate too. She lays her head in his lap, or backs up to get her rump scratched. She's never bumped him or caused him any problems. If she hears a loud noise, or any clattering ... she is off, like a shot. Apparently, she's afraid he will fall on her when he takes the occassional tumble, and steers clear. So much for man's best friend!
So, it's quiet and kind of lonely here tonight since I took her today to our groomer's. They have a place in Mannford, kind of country, with boarding facilites. She'll be staying with Russ and Karen for the duration, and be well cared for. She'll have her own "room" and run while vacationing. And Karen says she plays music when she's away. Don't know how Izzy will make it without HGTV, but she'll just have to deal with it. I tell Eddie that Izzy likes HGTV (like I do) ... I don't think he's buying it though.
Airport Parking
I just wanted to share a bit of info, in case anyone else is traveling out of Tulsa Intl Airport. We always parked at Fine Airport Parking when traveling before. Since Eddie can't get on a normal shuttle bus, I tried to figure every angle on the departure/arrival gates, loading and unloading. So, FYI, the actual airport parking facility is run by American Parking (find them online). They have some shuttles with wheelchair lifts. I have their phone number, and was told to call when I pulled into the lot, and they would have the special shuttle pick us up within five minutes. That's great! It's even better that I found an online coupon for $1/day off the regular rate (and that's good for anyone ... not just disabled).
Getting close
Time has not flown by, but we've kept very busy finalizing preparations for the trip.
There was a bit of confusion/frustration on my part this week when I tried to pre-arrange wheelchair accomodations at the Frankfort Rail station (adjacent to the airport) using their online request form. The last portion of the trip is by rail... about an hour from Frankfort to Cologne. Lufthansa booked it all, and supplied me with an official itinerary with all the details.
I thought I was being extremely competent and feeling smug because I had researched the rail line and even printed off their online request (for special services). I then filled the paper form in by hand, being very careful to note the arrival/departure stations, times, seat numbers etc. and set it aside. Then, on Friday I copied over the information to the real online form and sent it off, thinking they would be waiting with open arms to assist in getting the wheelchair onboard when we arrived.
Much to my surprise, I received an email asking for additional information. What?? So I reiterated the info, including seat numbers again. I even reserched the train we're traveling on (Inter-City Express). Uh oh, another email telling me seats 02J/02K were not correct for the ICE! So, I re-checked the itinerary, and it showed, yes, 02J/02K seats. In a panic, I phoned Lufstansa and asked if we had rail tickets confirmed. Of course, they said. She checked their records and told me the rail car number (not on the itinerary), and seat assignments of 16 and 18. (you can see the confusion and frustration here, right?).
Yet another email to Bahn rail with that info, and finally... a confirmation! I'm sure they are checking their calendars and watches right now, anticipating our arrival....LOL. Seriously, that was a relief. Humbling too. And teaches me not to be so smug. I'm a pessimist, so think that no matter how much pre-arranging I do, something will take a turn, and we'll just deal with it when it comes along.
So many have told me that we are on their prayer lists, both individuals and groups. We are blessed to have many prayer warriors working to make this trip go well. My co-worker Bob's wife phoned him today and asked to speak with me, then prayed with me over the phone, insisting the Holy Spirit will guide us through this. OK, that was the second time I cried today. Then, sweet sister-in-law emailed to let us know the Monday Night Sister's group is working for us too. That's the third time I teared up. It's so touching to realize how many people love and care for us. I guess getting down to the wire is making me a bit emotional. That's okay for today. Come Friday, I'll be all business!
There was a bit of confusion/frustration on my part this week when I tried to pre-arrange wheelchair accomodations at the Frankfort Rail station (adjacent to the airport) using their online request form. The last portion of the trip is by rail... about an hour from Frankfort to Cologne. Lufthansa booked it all, and supplied me with an official itinerary with all the details.
I thought I was being extremely competent and feeling smug because I had researched the rail line and even printed off their online request (for special services). I then filled the paper form in by hand, being very careful to note the arrival/departure stations, times, seat numbers etc. and set it aside. Then, on Friday I copied over the information to the real online form and sent it off, thinking they would be waiting with open arms to assist in getting the wheelchair onboard when we arrived.
Much to my surprise, I received an email asking for additional information. What?? So I reiterated the info, including seat numbers again. I even reserched the train we're traveling on (Inter-City Express). Uh oh, another email telling me seats 02J/02K were not correct for the ICE! So, I re-checked the itinerary, and it showed, yes, 02J/02K seats. In a panic, I phoned Lufstansa and asked if we had rail tickets confirmed. Of course, they said. She checked their records and told me the rail car number (not on the itinerary), and seat assignments of 16 and 18. (you can see the confusion and frustration here, right?).
Yet another email to Bahn rail with that info, and finally... a confirmation! I'm sure they are checking their calendars and watches right now, anticipating our arrival....LOL. Seriously, that was a relief. Humbling too. And teaches me not to be so smug. I'm a pessimist, so think that no matter how much pre-arranging I do, something will take a turn, and we'll just deal with it when it comes along.
So many have told me that we are on their prayer lists, both individuals and groups. We are blessed to have many prayer warriors working to make this trip go well. My co-worker Bob's wife phoned him today and asked to speak with me, then prayed with me over the phone, insisting the Holy Spirit will guide us through this. OK, that was the second time I cried today. Then, sweet sister-in-law emailed to let us know the Monday Night Sister's group is working for us too. That's the third time I teared up. It's so touching to realize how many people love and care for us. I guess getting down to the wire is making me a bit emotional. That's okay for today. Come Friday, I'll be all business!
Tuesday, October 6, 2009
Just ten days more.
Ten days until we fly out of Oklahoma. We're ready to begin the countdown. Not much happening right now except last minute shopping, laundry and dry cleaning to get ready for the trip.
As a side note, Eddie and I drove to the OKC MDA Clinic for his semi-annual check up last week. The Clinic is awesome. They treat him very well. I told him that a bride doesn't get that much attention on her wedding day. He doesn't just get his 15 minutes of fame, but an hour or so with several different specialists.
I'd inquired about a piece of equipment called a "cough assist". Eddie doesn't have problems eating food, but gets choked occassionally on liquids, and he doesn't cough with enough force to catch his breath and clear his throat. The clinic is sending an inhalation therapist to the house (possibly before our trip) to fit him with the cough assist, and a Bi-pap machine (excuse the spelling, here at our house, I'm not the one with the medical training). That's the equipment for night time use of people with sleep apnea. Eddie doesn't have apnea, but the dr. thinks it will be of benefit since his lung strength has decreased since the last check up.
I also inquired about a text-to-speech device since it's getting more difficult to understand his speech patterns. We have an appointment with a speech pathologist this week to see what they recommend. The inhalation therapist will come to the house, but there are (apparently) many different devices on the market for speech augmentation, and they can't haul them all over here... thus we go to them. The speech pathologist will evaluate his current needs and anticipate his future needs, then make a recommendation on what will work best for him. The technology for these devices is so advanced that it's amazing.
That's all for now. I'll check in before we leave on Oct. 16th!
As a side note, Eddie and I drove to the OKC MDA Clinic for his semi-annual check up last week. The Clinic is awesome. They treat him very well. I told him that a bride doesn't get that much attention on her wedding day. He doesn't just get his 15 minutes of fame, but an hour or so with several different specialists.
I'd inquired about a piece of equipment called a "cough assist". Eddie doesn't have problems eating food, but gets choked occassionally on liquids, and he doesn't cough with enough force to catch his breath and clear his throat. The clinic is sending an inhalation therapist to the house (possibly before our trip) to fit him with the cough assist, and a Bi-pap machine (excuse the spelling, here at our house, I'm not the one with the medical training). That's the equipment for night time use of people with sleep apnea. Eddie doesn't have apnea, but the dr. thinks it will be of benefit since his lung strength has decreased since the last check up.
I also inquired about a text-to-speech device since it's getting more difficult to understand his speech patterns. We have an appointment with a speech pathologist this week to see what they recommend. The inhalation therapist will come to the house, but there are (apparently) many different devices on the market for speech augmentation, and they can't haul them all over here... thus we go to them. The speech pathologist will evaluate his current needs and anticipate his future needs, then make a recommendation on what will work best for him. The technology for these devices is so advanced that it's amazing.
That's all for now. I'll check in before we leave on Oct. 16th!
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