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ccordone

Member
Joined
Sep 29, 2013
Messages
29
Reason
CALS
Diagnosis
09/2013
Country
US
State
New York
City
northville
My husband is in the process of getting diagnoses with ALS with the arms only. He is currently trying treatment for Multifocal motor neuoprathy. This is his last chance. His arm are week. left doesn't work and right can barely hold a cup of coffee. He currently is employed and feeling useless. Today he could hardly eat lunch. He is 52 and I am working all day at school. Any ideas how to make his days easier. Let me know Does anyone know if there is support groups in the Albany NY area?
Thanks
Colleen
 
there must be an ALS Association number in your phone book. start there
 
Sorry you're going through this.

There's a clinic at St. Peter's Hospital in Albany. It's called the Lewis Golub MDA/ALS Clinic. They'll direct you to a support group. How to make his days easier? It'll take time. Sad, but true. No magic bullet - we all cope as best we can. Once he gets a firm diagnosis, he can apply for SSDI. The clinic team will do their best to help you stay ahead of the disease.

When you have time, suggest you read all you can about ALS - there's a ton of information on this site.

I'm sure your head is spinning, but you will get through this and there are plenty of good folk here to help you along the way.
 
What treatment is your husband having for MMN. Tim had IVIG for 6 months initially as he had a positive marker for MMN, and did have some improvement. But eventually he didn't get the positive effect so he stopped. But from what we were told people with MMN almost return to normal with IVIG.
 
They are trying to do IVIG because he has some markers for Multifocal motor neuropathy. Octogam i believes is the medicine. It is expensive, they said 5000 a day. Hope for some improvement. At least mentally it will help him feel better. colleen
 
Thanks
Will look into it!
 
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