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