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lucy

Member
Joined
Feb 7, 2007
Messages
14
Reason
PALS
Country
US
State
il
City
quincy
Hi,
My husband has been diagnosed with PMA. We are at 6 years now. He is now 40 years old. We have 2 children. He has no upper motor signs but the progression of his disease continues. He is almost paralyzed from the neck down. He still has a little use of his arms but very little. I now feed him. He has been in a wheelchair for almost 3 years now. I can tell that his neck muscles are getting somewhat weak lately. When getting him up to transfer him into the wheelchair he tends to hang his head on my chest. He has off and on experienced throat weakness that always seems to go away. I can usually tell by hoarseness. This has been occurring since the initial diagnosis. He has had this quite a bit lately which is scaring me. I try to be optimistic that it has always gone away but you always have the progession to ALS on the mind. Is it moving to the upper motor? His breathing test are always good at 80% or so. I will continue thinking positive. I wonder if their is any other caretakers out there experiencing what I am. I thought we could share helpful ideas. Thanks for listining.
 

juliesmile

Active member
Joined
Feb 20, 2008
Messages
60
Reason
Loved one DX
Diagnosis
03/2008
Country
US
State
CA
City
Borrego Springs
Lucy,

I am so sorry to hear of what you are going through. I have to admit I have nothing to offer in terms of advise, as my husband was just diagnosed a little over a week ago. At this point he has an atrophied left leg, foot drop and wears a brace. Weakness beginning in his right foot. So I feel so fortunate to have so much of him functioning. But I look to your story to see what my life will be like.

Can I ask where your husbands problems began? I know everyone progresses differently, but I am really looking for some sort of time line. You say he was in a wheel chair at year three. Good to know. WE need to get busy doing what we can while he can still walk.

I too am always watching for UMN symptoms. The first visit the Neuro called his reflexes brisk which is UMN, but when they did the EMG/NCS, they said he reflexes were absent. So of course I'm a litle concerned.

How are you coping? With small children and all it must be overwhelming. Do you have a support group of friends and family? I sure hope so.

Best of all possible things for you and your kids.

Julie
 
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