It has affected his right arm and hand, and starting to affect his right leg and he sleeps all the time. We are bound and determined to have Good Days and we do. Unfortunately, watching my energetic, full of life husband deteriorate is heart wrenching. Sorry, I just had to vent to people who understand. Thanks for listening![/QUOTE]
Welcome, but sorry we couldn't be chatting about something pleasant. My husband and I have 6 kids between us, the youngest two are 21 & 15, and I know it is very hard for the 15 year old. But we have been blessed with a good sense of humour and an amazing support group. My husband is now a partial quadriplegic, but thankfully has maintained his speech and swallowing. We were only married in 2011 and he immigrated to Canada just over 1 year ago from Texas. He absolutely loves the mountains and the wildlife and has reacquainted me with the beauty that surrounds us. He loves watching the kids sledding or attempting to sled across the street, or play basketball in the summer. The kids all know him, and look to see if he is watching, giving him a big wave. The kids next door come over once a week to read to him for practise, and then listen to him read a Louis L'Amour novel. He has such a great western drawl, and has always had a passion for reading, and being with kids.
That is not to say that he wasn't athletic, because he moved like a cat, and played too many sports to mention. But his faith was always his priority, and it has held him up through this difficult time.
Now I noticed that you mentioned that he is sleeping all the time, and I think it is something that may be helped. Two reasons this may be happening is, depression, and sleep apnea, which is extremely common with this disease. A person does not have to snore to have sleep apnea as it could be caused by the central nervous system rather than an obstruction of their airway. When we don't get enough oxygen while we sleep because of sleep apnea a person will wake up tired, and or with a headache. It would be worth looking into, and your doctor can set you up with a sleep lab.
The more that you read on this forum the more that you will see that both PALS & CALS are dealing with situational depression and have found medication helps. Others deal with it through meditation, and other means, but it is something that can be helped.
Feel free to vent, or ask questions, or just post something good or bad that you need to talk about.
Paulette