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Jessie

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Hello,
My husband,Vic was diagnosed wIth ALS last April having had symptoms since the summer of 2003. It started in his right leg and has progressed to the point where he is in a wheelchair and is losing the use of his arms and hands.
He is on many medications, some to help with the spasms. We hope they will eventually make a difference. They include Baclofen, Gabapentin, Effexor, Oxycontin and Zanaflex.
He contends with a great deal of discomfort every waking hour due to the spasms and the pain they cause. Sleep is very broken usually no more than an hour at a time and totalling about 6 hours at night. He is able to fall back to sleep after I massage his feet and legs. He is very tired during the day. He also contends with persistent constipation.
I realize this sounds like one big whine but I want to ask a rather naive question: is this amount of discomfort par for the course or is this somewhat excessive? I would be interested in hearing the 'discomfort' experience of other PALS and how they cope with it..
I get a lot of encouragement and info from reading the forums and am continually amazed and heartened by the spirit and humor contained in so many of the posts. Thank you. I read them first thing in the am.
Wishing you all a happy Mothers Day tomorrow.
Jessie
 

mannco74

Active member
Joined
May 7, 2003
Messages
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Jessie,
it is not a big whine here. usualy the constipation may be relieved by fiber such a beans, prunes (dried i like) As constipation is a normal side affect of oxycodone (percacet). To me sleep is the objective however my methods are contravercial so i wil say i us gabapentin, two mild sleeping pills and one illegal substance. Lets just say i make no major decisions at night. in my world night is for sleep day time is for activity. I can not move once in bed so need to be asleep or out of there.
call when ever you wish
chris mann
 

Al

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Joined
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Hi Jessie. I used to get terrible muscle spasms in my legs too. The doctor tried Levadopa a Parkinson's Disease Med. No luck with it. Then I tried Baclofen. It worked somewhat but I kept hearing Quinine was the best thing for the spasms. My Doc put me on 300mg at night and I've only had 2 spasms in the last 3 months and I was able to quit taking the Baclofen. I don't take any other pain meds. Just a few heart meds and the Riluzole. Hope this helps. Try the Quinine it worked for me.
 

Carol Deboer

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May 7, 2003
Messages
343
Hey Jessie,

Welcome to the gang,

Hope we can be of some help to you and your family. Henry took Quinine as wwll for the leg cramps and spasms. It seeemed to work the best, he also took 800ui of Vit.e every day too. This combination worked for a long while. We still massaged his legs for him everyday as well, and that also helped. Sleeping, as yes sleeping. I did not get much of it for the 6 months before Henry died. It was very broked sleep, and again if we both got an estimated 4 or 5 hours a night, we were lucky. He was in pain, and the pain meds and shots helped closer to the end, but they were something he hated to take because they made him feel funny in the morning. Anyway, he learned that he needed to take them anyway. I needed to get some rest too. Henry was afraid to go to sleep. He woule snooze during the day, but he hated to go to bed at night. I think that this is very common with people that are terminally ill. Everything always seemed to be a little better in the morning, but the still of the night was a scary thing. Heny also took some sleeping meds, and they also helped him out for a long time. Maybe you should look into these avenues for more ease with your hubbys condition. You will be okay. I promise. You will need lots of support and help with him, but you will be okay. I know. If you have any questions, please do not hesitate to ask me. I will help you to the best of my ability. Take care Jessie.


Stay Strong,

Love , Carol



ps. Chris, no wonder that you are so happy all the time, with that great big grin on your face, keep on doing what your doing, because it seems to all be working for you. Good stuff....
 

Jessie

Member
Joined
Nov 28, 2004
Messages
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how much discomfort

Thank you Al, Chris and Carol for replying to my query with practical advice and words of encouragement from 'farther down the road'. I guess the secret is 'one day at a time', as we seem to have our darkest moments when we start looking fearfully too far ahead or looking back with regret at what once was.
We are very blessed with so much support from family and friends. Isn't it amzing how just a simple phone call or card in the mail can cheer up a 'down' day.
The ALS forums are such a big support to so many.
Blessings to all of you today from rainy cool Calgary.
Jessie
 
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