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 diagnosed 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]

Federal Assistance Program

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 diagnosed 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.