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lisamk

New member
Joined
May 2, 2008
Messages
8
Reason
Loved one DX
Diagnosis
08/1998
Country
US
State
PA
City
Pittsburgh
I was wondering if I could get some candid information on what to expect next. My father was diagnosed 10 years ago, he has done remarkably well and progressed relatively slowly. His speech is very poor and he can no longer walk or lift his arms so he must be fed and cared for on all levels from bathing to bathroom, etc; however, his swallowing has not been affected too severely. We have had our share of choking scares and he does have a harder time eating these days. He doesn't have much control over muscles in his tongue, but he has learned to cope and can still eat pretty much all foods. Lately I have noticed his head tilted forward and he has been complaining of neck pain. I asked him to elaborate and he feels his neck muscles are starting to go. This is just so upsetting. I am assuming that once he loses control of these muscles, he will also start to have problems swallowing and with his facial muscles as well. It's so heartbreaking to watch this happen to him, but I also want to be prepared. I realize the progression is very different from individual to individual; however, can anyone relate to what is happening now and give me some feedback on what they have experienced with this? Any information would be appreciated. Thank you - Lisa
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
WOW diagnosed 10 years ago! Congratulations he is doing well! With neck muscles going it is only a matter of time till swallowing will be affected. Have you concidered a feeding tube? It is an easy procedure and will solve the swallowing issue.
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
your Dad

Hi Lisa

Wow! Your post regarding Dad having ALS 10 years is very encouraging to me, thank you.

My husband, 58, was diagnosed with PMA class of ALS. His neck is very weak and having trouble, especially, in a.m. after night sleep. He has no eating problems but his is breathing issues. Today, a PT from Hospice came for eval. His legs are very strong, and PT said due to him being in such very good physical shape prior to this horrible disease.

Check with Dad's doctor regarding the pain issue in his neck. Does he have a collar that he uses? If not, ALS clinic can provide that from ALS closet.

Keep us informed on Dad and I will pray for him tonight Lisa, promise, will also pray for you to have strength and courage from God.



Patty :)
 

gagirl

Member
Joined
Feb 9, 2008
Messages
23
Country
US
State
GA
City
Douglasville
Hey Lisa,
My husband has completely lost the muscles in his neck too. I started with the muscles in the back of his neck. If he tried to look up really high, his head would just fall backwards and he couldn't pull it back up with assistance. Then the front muscles became very weak and he looked like he was constantly looking at his feet or his belly. He complained of terrible pain in his neck and starting getting migraine type headaches because he was straining the muscles so much trying to hold his head up. I got him the soft foam neck collar from a medical supply place and the ALS Doctor put him on nortriptyline for nerve pain, and increased his morphine dose. He does fine now, no pain in the neck as long as he wears the collar. He is starting to experience some issue with swallowing, but we just give him much smaller bits and softer foods. We know it won't be long and he won't be able to eat so he had a peg tube put in last week and he is doing great from it.
Be strong, we can get through this. This site is becoming more and more of a help to me. Eveyones symptoms are completely different, but on this site you will find someone that has experienced at least one of the systems you have questions on and give some advice and/or encouragement.
 
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