Old 08-20-2007, 05:11 PM #16 (permalink)
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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
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Old 08-20-2007, 05:19 PM #17 (permalink)
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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 diagnosed.
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Old 09-18-2007, 02:40 PM #18 (permalink)
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Hey Jeff -

Any word back from the home makeover folks yet?

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Old 09-18-2007, 08:23 PM #19 (permalink)
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Haven't even finished the video yet
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Old 09-19-2007, 06:34 PM #20 (permalink)
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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
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Old 09-23-2007, 01:55 PM #21 (permalink)
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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

Last edited by David : 04-16-2008 at 02:29 AM Reason: hastypasty
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Old 09-26-2007, 11:01 AM #22 (permalink)
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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 diagnosed. 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.
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Old 09-26-2007, 05:29 PM #23 (permalink)
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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 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
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Old 09-26-2007, 09:09 PM #24 (permalink)
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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
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Old 09-27-2007, 08:32 AM #25 (permalink)
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Not a problem at all
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