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JILLLEKATZ

New member
Joined
May 21, 2018
Messages
9
Reason
Loved one DX
Diagnosis
05/2018
Country
US
State
MN
City
Two Harbors
Hi All,

My husband recently got diagnosed with: BRACHIAL AMYOTROPHIC DIPLEGIA. Is there anyone else on this support group who has this?? All functions work, except both his arms/hands. Also called Man in a Barrel.
 
Hi, Jill(?),

Welcome.

That is how my husband's ALS began. You will also hear "flail arm syndrome," "flail arm ALS," etc. There is controversy about how similar and different all are, but basically:

Not all BAD progresses to ALS, and it can progress very slowly. If his EMG was normal everywhere except the arms, it is more likely that progression will be slow. Even if your husband progresses to "regular" ALS, it is more likely that he will live several years than only a couple. So all in all, it's a good subtype to have.

One caution is that the shoulder joints are prone to subluxation in this disease. His arm should never be pulled without protecting (holding in place) the shoulder joint, and his elbows should be supported when sitting. If there is pain, you will want to do massage that goes toward the center of the back from the upper arm (reconstituting the joint), rather than the other way around.

Best,
Laurie
 
Laurie,

Thank you for your response.

Good info on the shoulder. My husband has difficulty getting out of a chair or bed and wants me to "pull" on his one good arm to help him up. I am afraid of the shoulder popping out of the socket!
 
No! Do not pull on his arm! Wrap your arms around his upper core, making sure you are first stable. There is also a product called Uplift that may help for a time in some chairs. Bring cushions to restaurants, etc., and put them in this chair at home. And start working on a hospital bed, lift recliner, etc.
 
If he doesn't have one already, a lift chair will make life so much easier for him and you! I have the Golden Cloud and love it.

Make sure you don't hurt yourself trying to help him. I know many CALS who end up with severe back problems
 
Thanks ladies! he has a lift chair, but only one in his office. most of my furniture is to soft for him. Would putting a cushion down first be helpful??
 
Hello Jill
My dad has flail arms. He was diagnosed in 2015. We are just back from hospital check up and there is no bulbar problem. However those past few months his back muscles have been weakening, making walking more tiresome. The doctor prescribed a wheelchair for the times when the walk is a bit long. That reduces the risk of a fall. I am glad my dad accepted the idea because he was reluctant at first. He is also going to try a neck brace to wear from time to time.
He stayed a while without progression
Have a good day
 
Sorry, I forgot to answer about the cushions. Yes they help. We have tried several and found a medical one he feels comfortable in. It is designed to reduce sores.
Can we give brand names in the forum ?
 
Marie, you can definitely give brand names of products that help! Just no actual commercial links.
 
Hi Jill, welcome to the forum! I'm sorry to hear about your husband's diagnosis although I had to laugh a little at the "man in a barrel" title. Haven't heard it before and it seems very spot on.

Being gentle on the shoulders sounds really important. My boyfriend's shoulder lost so much muscle that I was afraid to dislocate it while getting him up with the sit to stand lift he used for a couple months. Scary. After three month without a working solution besides doing all transfers myself he got a beautiful lift in which he's painfree. I digress...

I'm glad you found the forum and dived right in with a question.
 
Hello again. The comfy cushions are from Asklé.
We also tried piling up several cushions but you have to be extra careful they are the same size and fit in well in the chair because when you sit and you don’t have the help of your arms you want to be absolutely sure what you are about to sit on.
To help up the advice about not pulling arms is paramount. May be you can find someone with knowledge and practice to teach you how to help without harming either of you as described.
Warm feelings.
 
My left shoulder is bad. I've hurt it too many times to count. Eventually I got an MRI and my rotator cuff is torn severely. I have to be very careful while in the pool and with range of motion exercises.
 
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