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TNTTony7

Active member
Joined
May 17, 2011
Messages
53
Diagnosis
05/2011
Country
US
State
VA
City
Ewing
Hello All! I don't know where to start. This mess started with a back injury, well I kept progressing and getting worse, went from a cane to a walker, and now a wheel chair. I had a constant headache, clumsiness (fell often), then trouble swallowing. My arms and hands are starting to be affected. My doctor wouldn't do anything, in fact he kept saying that no way was it neurological. My wife and I decided to switch VA hospitals. Well it took 5 months for me to be assigned a primary care doctor. Long story making short:lol:! Anyways 2 weeks after my wife and I got married (March 12th) I saw my new doctor for the first time. Withing ten minutes she sent me to the ER to see a neurologist. Well got admitted and they ran the battery of tests. Diagnosis was not atypical ALS, to be seen by the neurologist in 3 months. Well within a month I have gotten worse, speech, and arms way weak. I went back to my primary doctor and after she talked to the neurologist I am now diagnosed with ALS. When I was in the hospital 4 different neurologists saw me each one requested another one, till they assigned me to a University of Kentucky head of neurology. Anyways I am so glad that I found this place I have felt so alone. My wife is very sensitive (she has recently lost her brother,sister, mother and also our dog, brandy. So she is having a hard time dealing with this. We live 3 hours away from the hospital, so am also facing a hard decision of having to move to be closer to the hospital. She knows I'm getting worse but doesn't want to talk about it. She is great at giving me assistance. Anyways I have felt so alone (am crying while typing this). I am a veteran of Desert Storm and the Panama Conflict, and would rather have taken a bullet, then put my wife through this. I do not fear death, I fear my wife suffering while I am slowly or not so slowly dying. Anyways I know it doesn't sound like it, but I am in pretty good spirits most of the time. I have read a lot of the posts and can tell this site is full of caring people. I thank you all for finally found a place where I can get all this off my chest.

thank you all
Tony
 
Tony, make sure you know EVERYTHING about the benefits for PALS who are Veterans. Let me know if you need info. HUGS Lori
 
My understanding is that ALS is presumed to be service connected, I have put in that paperwork. And have a appointment to get a motorized wheel chair, ramp.......etc. I think the social worker informed me of the benefits. I'll happily take any info that you have, thank you very!
 
Good that the paperwork is in. Get yourself a good PVA service officer, as you may be able to get retroactive if they say your ALS started a couple of yrs ago. You will be able to get $30,000 worth of life insurance for about $65 a month. Also, as you are worried about your wife, there is a widows pension, as well as educational benefits for you and any children. This disease sucks BIG time, however, the VA really has stepped up.
 
Ok, I tried to get the life insurance and they denied me. This was before the ALS diagnosis, could that make a difference?



thank you again!
 
Yes, once you are service connected you get $10,000 at no cost, and then can buy an additional $20,000 at $64 a month.
 
Tony, I'm just so sorry you and your sweet wife have to have this. I'm glad sadiemae has taken you in hand, so to speak--she's great. You will find, and hopefully your wife also joins as your caregiver, lots of support here. I'm sure it's overwhelming with so much to take in right now, but most of us find a "new normal" and this is just "life". I'm sure you would want to be there for your wife if it were she who was diagnosed. Try to keep that in mind when you feel so bad for her sake.

Ann
 
The PVA is the correct route to go.I can not believe what they did for me and how fast I got the benefits.Good luck to you!
 
Ok at the risk of sounding stupid what is a PVA? Haven't heard of that.

OMG you are all great, I haven't been able to leave this site I've cried 3 times and I'm normally not emotional.
 
Tony, if you click on "Beach Bum" in blue, you'll get to see his public profile--and he is a Sweetheart--just leave him a question on his page. That's a way to ask people specific questions and also be sure they see them to answer!
 
PVA - Paralyzed Veterans Association. They will walk you through benefits - SAH, VMLI, Aid and Attendance, etc. Don't hesitate to Private Message me if you have any questions.
 
Hello Tony,
I'm an Australian, and have no connection to the millitary, so I can't tell you anything! But all this information must be a great relief to you to hear. All the best mate, I hope that the loneliness soon gives way to hope and new friendships.
God Bless!
 
A great relief thank you all. I talked to the PVA and they are now handling it for me, it is so awesome........wow!
 
Hi Tony

Sorry you had to find this site--but very glad you found some useful information here! Please let your wife know that she can come here for support as well.

She's lost a lot--and will find that she will want and need support as well. There is a lot of great information for her as well as emotional support. It's hard to lose loved ones (I'm talking about her other family, not you)

While ALS definitely sucks--you're alive now, and that's what she should concentrate on. Live each moment to its fullest. Take that trip you've always wanted to take. Do things together and make great memories.

There is also a blog feature here--some people do better emotionally if they can write about how they feel. One of the hardest things for family members is dealing with their emotions--they feel everything from guilt to anger. Some feel guilty for HOW they feel. Let her know it's okay to feel what she feels!

I'm glad others have given you practical information for support via the VA. There are also local support groups through the ALSA that might be of benefit to you both.

Take care both of you. You'll both be in my prayers~
 
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