To wait or not to wait, that is the question

[ZenArcher]

Hello all, I've been hanging around on and off for a bit. As you may or may not know, I got my dx in May of this year. Since then I've been learning everything I can, trying to plan ahead and spending more time with the family but I am still working. Retirement is not an option at this point.

My background: I'm 39 years old and have been married for the last 15 of those. I have two daughters 14 and 12 which I'm still convinced are at least partially to blame for my early gray :) I live in a small (pop. 360) town in central Pennsylvania just south of Williamsport, the home of the Little League Baseball World Series. My initial symptoms were a loss of dexterity in my left hand which start in mid 2005 followed by atrophy which I didn't notice until early this year. As of today I'm still working and capable of being fully independent however zip lock bags are the bane of my existence. My left thumb has very little pinch strength, left bicep slightly weakened and both shoulders slightly weakened. I can see the atrophy starting in my right hand but haven't noticed any great loss of strength there yet.

Now to the questions:

My first goes to any vets out there. Has anyone been service connected with a diagnosis greater than a year after discharge? I was diagnosed 7 years after discharge but have the Paralyzed Veterans Association working on it (fingers crossed).

My second question goes to home modifications. I live in an old home. Two stories with only one bathroom and of course it's upstairs along with the bedrooms. At this point I know I'm going to need a bedroom and bathroom added downstairs and I would like to modify the living room to allow me to spend time with the family when the time comes that I'm immobile. I'm also going to need outdoor ramps. The VA has grants to help pay for all of this but my question is should I wait, may be another 3 - 6 months before I hear from them, or should I get started and eat the cost?

[CindyM]

Hi Zen. My advice is to do some more research. You want to find out which agencies offer what and try to coordinate your requests so you can figure out what you will need to spend our own money on. The Commonwealth has Independant Lliving Centers with staff who can point you towards who in your state will help with which resources. I think there is a center near you. Check out this site to see. http://www.disabilityresources.org/PENNSYLVANIA.html

PS: Don't get discouraged because they talk a lot about everything except MND. Their skills in accessing resources are transferable so they should have good information for you. good luck! Cindy

[ZenArcher]

Cindy, thanks for the link, good info. I have every intent to get as much as possible paid for by someone else. As of now I'm the only source of income for the household and if the VA doesn't service connect me things are going to get rough, so just in case I'm being as greedy as possible.

AnnMarie, no pain and the fasics are few and far between. I went to my first clinic at Hershey on the 15th of this month. They've got a nice setup with good people. I just started on Rilutek yesterday but I've talked to Dr Simmons about getting on the Arimoclomol trial that will hopefully be starting in the next six months. Other than that it's just been trying to make things as easy as possible on the family. I'm working on an application for Extreme Makeover Home Edition. I figure worst case I spend a few hours on the application and they say no, best case I get the family on TV, a new house and spread the word about ALS.

[CindyM]

If you need us to write letters of support for youR home makeover application jUST ASK! Cindy

[guwainengle]

Zen,

Contact the OVR-- That stands for the Office of Vocational Rehabilitation. They can help with modifications to make your life a little easier for future needs- From what I have been told they are very slow so you may want to start the ball rolling quickly.

G

[ZenArcher]

I'd forgotten about the OVR, good call. I got in touch with them within days of getting my dx and had a meeting later on.

If I run into any writer's block I'll let you know :)

[patricia1]

OVR here in NJ Is only for people who want to work with disabilities They place them with jobs. Nothing for home modifications.

[ZenArcher]

They have all sorts of services here in PA, although they are all geared towards keeping you working.

[guwainengle]

In PA they will modify a bathroom/kitchen/ workstation room or build it-- as long as you can work at home-- the only problem is that they are slow on th eapproval process.

G

[ZenArcher]

To all you writer types, give me your thoughts. I can't go much longer than this but will listen to any suggestions.

In May of this year I was diagnosed with Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig's Disease). As of right now the worst signs are in my arms and hands however statistically speaking I'll be unable to move, swallow, speak or breath on my own within the next five years. We purchased our current home in a hurry 7 years ago so that my wife could be close to her mother who had just been diagnosed with multiple myeloma (a rare bone cancer). The front half of the house was built around 1920 with an addition being added in the 1980's. The home is two-story with no accessible features. It is classified as a three bedroom and one bath all of which are upstairs. My intent was to remodel when I had more time at home. After the Navy I wanted to get a job that paid enough so my wife could stay home with the kids. I found a job that allowed that but it required a lot of travel. Between the end of 2000 and the end of 2006 I spent on average of 80 - 95% on the road. In December of 2006 I took a new position within the company that allowed me more time at home. This was going to be the year when I got things started but instead my body started weakening to the point where I have issues picking up a 15 lbs dog. My wife watched her mother fade away from the cancer, she passed the week before Thanksgiving in 2004. Now not only does she get to repeat that process with me but she'll have to care for me in a house that is in no means setup for accessibility. Because of some of the remodeling I started and can no longer finish selling and buying a house that is easier to modify is not an option. I'm afraid that the amount of money required to modify the house to a point that will be workable will be excessive due to the way the house was built and the code infractions (i.e. electrical outlets in the floor). I have a disease which unless modern science makes leaps and bounds on within the next few years will kill me. Believe it or not I've come to terms with that. Do I deserve a home makeover because of it? The simple answer is no. I've spent most of my life providing for my family but that's my job and doesn't make me special or deserving anymore than anyone else. My wife on the other hand has had to suffer through the weekly appointments with the oncologist and helping her mother after the chemo and finally sit by her side as she passed and during that whole time care for our daughters while I was on the road. Now she gets to do it again in an even more involved role against a disease that is more visual. Does she deserve it? In my eyes a million times over but that's your decision.

P.S. This is for the Extreme Makeover Home Edition application

[liz]

ZenArcher -

Regarding the financial hardship, you might want to toss in something about anticipated loss of income due to your impending disability.

Liz

[ZenArcher]

Good point, added the following:

I am afraid to place myself much further in debt because of the impeding loss of income due to my inability to work.

[CindyM]

Good letter. I'd give you the make-over! I wonder if the story would have more impact if told from your wife's POV. She is in a position to get emotional about her Mom's and now your illnesses, and plus she can brag much more effectively about what a great provider you have been all these years and how much you have done for home, family and country. Just a thought...Cindy

[ZenArcher]

You have to provide a movie along with the application and trust me I can do the emotional part on there. Between what's been going on and the emotional liability I don't think it'll be a problem :)

[esrich]

Now to the questions:

My first goes to any vets out there. Has anyone been service connected with a diagnosis greater than a year after discharge? I was diagnosed 7 years after discharge but have the Paralyzed Veterans Association working on it (fingers crossed).



My husband hasn't been firmly diagnosed as yet. Still in the process. He served in Iraq 2003-2004 13 months. Arm twitching started while still in country but atrophy started a bit later, then I noticed fasics in his back. It took until last October for me to get someone to even check it out (I'm a lot pushier than he is...if I left it up to him we would still be waiting) and the VA hospital moves so slowly we finally had records transferred to a private neuro to see if we can find out for sure. So I guess that would be more than a year after discharge.

[guwainengle]

Esrich-

Where did you first see the atrophy in your husband and where are the fasciculations now? Also does he have any facial involvement? How long after the fasciculations did you notice atrophy? Do you think there is a link between Vets from the Gulf war and this Neuro-muscular disease?

G

[esrich]

Twitching started upper right arm. Noticed atrophy in right hand/forearm in 2005 which has now spread to upper arm. No facial involvement yet. No slurred speech, swallowing problems, etc. He has fasics all over at this point but mostly upper body...back, chest, arms. Some light ones in the lower extremities. Bad leg cramps at night. A few cramps in his hands or arms and has had a couple of cramps recently in his neck. He trips sometimes and the doc said he has some weakness in his left leg and left shoulder. So far he is still blowing and going but he has trouble eating and buttoning his shirt. The three possibilities mentioned were ALS, MMN, or CIDP. He has brisk reflexes and no numbness or tingling so that doesn't sound good for the two that are treatable but there is always hope. We are supposed to go to the ALS clinic in Dallas at some point soon and they will probably redo all the tests and hopefully give a firm dx.

[liz]

Hey Jeff -

Any word back from the home makeover folks yet?

Liz

[ZenArcher]

Haven't even finished the video yet :)

[manfred]

Hi All,I just happened by chance on this thread while searching others.I dont have this condition..my daughter has..whether its A.L.S. or any of the other M.N.D.s I cant resist comment when I find that" tone of resignation" in the written posts.I know it sounds strange coming from someone who doesnt even have this condition...but believe me the apprehension experienced by having someone you love having to experience this issue is no less painful.So when I say that the mind is a powerful weapon in the fight against this condition, its what I tell my daughter all the time and I am sure it helps.If you strongly believe that something can happen ...it will!So one needs to program oneself in a positive way to fight this condition as aggressively as possible..and search for things that can help to ease the progression of this condition.!Manfred

[greg175csp]

Zen,
My E.T.S. was in 91. I wasn't diagnosed until 2006. The info I have read seems to show anybody that served during Desert Storm until now is four times moe likely to develop ALS/MND

Greg
- Never Quit, Never Surrender

[Brentt]

Hi Zen
I didn't see any mention of the Medicare disability. You should be aware that the condition of ALS is an automatic no wait coverage. You won't need to wait more then a month before the benefits kick in. You will receive your monthly disability income and also parts A and B.
On or around your birthday of each year, the social security administration sends out a statement that tells you how much you will receive if you should become disabled at this time. This will help you determine what you can count on from the S.S.
Any children under the age of 18 will receive an amount based on your allowance.
If you get service connected, then you will probably earn more each month then your job pays you currently.
If you have a group plan there should be benefits to replace lost income. If all of your disability incomes don't exceed a certain amount, then you can get SSI and Medicaid.
There are many options you have to help you replace your income.
Then you have the MDA which will help with a payment of around $2,000. annually.
If you start going to the nearest ALS support groups, you can learn how to get the most help from others experiences.
Please try to get a good neurologist that will work for you. This will be your best friend as he will write the scripts for all your needs.
I was 40 when first dx. I am now 47 and no longer walk,talk,eat,breathe or anything else a normal person can do. I do however support my family and pay the bills because of Social Security and all the other resources available.
You are doing the right thing by getting all the info you can. Don't think that you can beat this thing, rather believe you can live with this dam disease.
ALS doesn't affect everybody the same though.

[ZenArcher]

Hi Brentt,
Outstanding information, thank you very much. Currently, I am still working and with luck may be moving into another position in the company which will allow me to continue working even longer. I intend to keep working as long as I can. The only problem I have currently is some of the travel gets rough well that and some days my pants just don't want to button, of course that is because of the weakness in my hands and nothing to do with an expanding midsection :-D Back to the subject, since I'm working my understanding is that I am not eligible for SSD or Medicare. Am I correct?

My neurologist is Dr. Simmons at the ALS clinic in Hershey and I am very comfortable with him. He answers my questions straight up and listens to what I have to say. He made it clear on the first visit that they are there for me not the other way around.

My biggest concern right now is either getting the home modifications done or getting a new house. I don't intend to be in a wheelchair for another 10 years or so but better ready than not. I will argue with you on one point, I don't think I can beat this disease, I know I can. Am I the guy that goes into remission? I hope so, but I doubt it. I will be the guy that lives my life on my terms and not those of the disease. It may take my ability to move, to speak, to breath but unless it can conquer my will, my heart and my imagination it's kung fu is not so strong :)

[ZenArcher]

We'll see what we can do with the makeover. I think my wife and two daughters might take exception with the me being alone thing though :)

[ZenArcher]

Not a problem at all :)