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charliegreer

New member
Joined
Jun 22, 2014
Messages
1
Reason
PALS
Diagnosis
06/2014
Country
US
State
al
City
huntsville
Hello, I am actually posting for my husband that was just diagnosed with ALS. He was diagnosed 7 years ago but when he went for the second opinion at Emory in Atlanta, he was told that there wasn't enough changes from the muscle and nerve biopsy to rule it as ALS. Now 7 years later and here we are again with this time a definite diagnosis. He has been sick for these 7 years without really knowing what was wrong. His first problem was loosing the use of his left arm, then it was dropping things, tripping and falling. His swallowing is bad, it takes him forever to eat and always has to drink something to get the food down. He is always tired all the time, has lots of pain in hips, legs, arms and his memory is terrible. Says things that doesn't make sense a lot of the time. He quit working almost 3 years ago and signed up for his disability but due to not having a definite diagnosis, he was denied. He did appeal but we have not heard anything yet. He plans to take his diagnosis to the lawyer tomorrow. Does anybody have any idea what stage he may be in so that we will know what to expect. I am his wife, I have loved him since I was 17 years old and I am 43 and he is 48. I want to be strong for him and I think the more I understand this disease the better I will be as his caregiver. The only thing the doctor told us so far is that he is definite that it is ALS and said it was the slow progressive kind. I think the thing I am most concerned with right now, is his swallowing. Any medications to help with that? Thank you for your time.
 
Welcome,
there is a spray you can get over the counter called Pill Glide that will help with the swallowing. But in my opinion, the best thing is to go ahead and ask aboout a PEG (feeding tube). It has made my life so much simpler and relieved me of stress related to eating. I was chocking on every bite as wello as my pills. Now everything goes through the tube and I can just sip on my coffee. He would still be allowed to eat if he wishes but if he does want to risk chocking he cqn still get his daily nutrional needs and meds.
 
>this time a definite diagnosis. He has been sick for these 7 years without really knowing what was wrong.

first things first: sorry to have to meet you here:) -- next, have you had a chance to take his diagnosis to a proper ALS specialist or even better and ALS clinic? Identifying ALS can be very tricky and when you're dealing with a terminal disease is best to know the truth or better the other way around.


>Does anybody have any idea what stage he may be in so that we will know what to expect.

we don't really have stages. ALS progression is like a snowflake, no one is the same. I was diagnosed in August 5, 2013, onset in September 2010, and surprisingly still alive. That means I've be a 85% of us! not that we're keeping score:).


>I am his wife, I have loved him since I was 17 years old and I am 43 and he is 48. I want to be strong for him and I think the more I understand this disease the better I will be as his caregiver.

this forum can provide you with a wealth of information and support. Look at the CALS forum for lots of information and an idea of the folks who are active here:).


>The only thing the doctor told us so far is that he is definite that it is ALS and said it was the slow progressive kind.

the doctor sounds like a quack. However you should know that I'm particularly cynical when it comes to Dr's and I think most of them are quacks:).

if it is "slow progressive" great, although I wonder how anyone would know that.


>I think the thing I am most concerned with right now, is his swallowing. Any medications to help with that? Thank you for your time.

there are lots of people who have lots of opinions on how to deal with swallowing problems. I tried them all. I'll let you know if I find a magic pill.:)

once again, so sorry to welcome you to our forum; however, you will find lots and lots and lots of wonderful folks here who are supportive and much more knowledgeable than I am:).

Kind regards,

Max
 
So sorry for Charlie's diagnosis and for the problems you are having with the disability claim. Have you had a second opinion? If so, there is no reason for your claim to be denied. even without the expense of involving a lawyer (in my opinion). Hope you have contacted the Huntsville ALS Chapter (256-519-9030). They can be your best friend in providing good, solid information on navigating this very tough journey, including advice with your disability claim. Most chapters have a lending closet which is very helpful. Talk with them tomorrow morning, unless you have visited them already ! ! Also, please remember that you are not alone. You will find the most unselfish friends here on the Forum who provide insights into just about any concern a fellow ALS traveler might have. God Bless.
 
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