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  • Thank you, enjoyed it immensely. I am one step closer to SS. That is what I woke up singing yesterday morning. Happy Birthday to me, happy birthday to me, I am one step closer to social security, happy birthday to me. I never said I was sane.
    Thinking about you and your Ed. How are things? Did you get everything straightened out with his VA benefits?

    Congratulations - and that is always weird to say with this disease but it is true - I do congratulate you and hope all goes smoothly for you both.
    I know what you mean about the money, however, the more he gets now the more it will help you later. Don't be shy about what your Ed has coming to him from the VA as the disease develops. They will renovate the house so that he can manuveur in a wheelchair and you can shower him comfortably.
    That's awful that they may be playing games. He deserves his benefit. I wish Ed was able to use our PVA rep; he has been outstanding. Tom got more than 100% because he got some percentage of the aid and attendance. Honestly he does not seem to be nearly as progressed as your Ed. I would think his benefit would be fairly high and you will get health insurance through ChampVA for no premiums. I just sent in my application today. It makes a huge difference knowing you will have this. I am going to finish out the school year if Tom's condition doesn't decline too quickly and then will be able to stay home and care for him. Without the health insurance for me through ChampVA I don't think I could do it. I know you have said you will need that as well. You and Ed are in my prayers and always will be.
    Sounds like Ed's claim is finally coming to a decision. I read the other disability board and was going to reply there but decided to do it here. The base amount for 100% is $2823. Aid and attendance can be as much as an additional $1900 for a married veteran and then there is special monthly compensation that will be added for body parts severly affected by the disease. Ed's award letter will have all of these things listed. My husband just got his the other day.
    When you have the opportunity to answer the questions below, please do. If I could help in anyway I would very much like to.
    Ooops sorry - Hi Anne!!! I do not post on that site too often. It is really like a hardcore veteran site but sometimes you get good VA info on it. They are wonderful people but not ALS focused. I like this because the people on this site really know share what ALS is like. I am like you I like information - it helps me plan and helps me cope.
    Things are happening, but as you say a little slow. Here is a suggestion. Get with your congressman. I am working through ours and she is fantastic. Write them a letter stating what has happened, how the disease has progressed and if you are lifting him, etc from the beginning until present. They can push for and expeditious claim. Tell them how it affects your quality of life along with your husbands.

    I am curious, did they not offer you a wheelchair? Did he spend anytime in the hospital? That is how Ed has received his chair and some other things because he spent the time in the hospital for them to see how far along his progression is. They are testing everything from head to foot and they are still not done. We have to go back the 24th and they will be doing a CT Scan on his Abdomin for the aneurysm spelling) and a Bone Density test then checking his eyes, ears and teeth. I am surprised if the PVA did not suggest it. Let me know.
    Hi Amy (right? your name is Amy?) - doing okay. We are about in the same boat as you. The PVA put my husband in for an increase and we are waiting to hear. He put it in on July 7. It takes so darn long when you have a disease like ALS. I am beginning to work on the VA getting him a wheelchair which he will need in a few months. He doesn't need it just yet but he will soon. I, too, have to wait to leave work until the 100% kicks in with the ChampVA. My life would be an additional nightmare without health insurance for me. Thank you for asking about me. I am glad to see at least some things are happening for you and your husband. God Bless - Mary
    Sometimes it takes me a while to get back on the forum. Hope you are doing well and that you are making progress with Ed's VA appointment. The VA assistance will make his, and your, life easier. Keep me posted!!!

    Hi - welcome! Take some time and visit the many different posts. You may be surprised at home questions you can have answered just by reading them. My husband has a variant of ALS that precludes him from taking medication - in other words there is no medication for him. He is also a former marine like your husband. I enjoy the other board where I met you but I find this one is overall more helpful to my life. They seem to be a great bunch of guys who moderate that board for vets with all kinds of disability issues but this one is specific for ALS. I guess you can't put links onto posts in that board because Dave deleted mine:) Oh well, you live and learn.
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