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!