Guest guest Posted September 21, 2001 Report Share Posted September 21, 2001 Dear SJ: My husband experienced paralysis in both arms and legs one morning a few years ago and I called 911 as I thought it was a stroke. At that time he was experiencing a flu with a fever and seemed a little dehydrated. I did not know this, I thought he had a stroke. It took quite a while for him to recover. Now he is quite crippled from SDS but at that time it came on quickly. Pat from Framingham MA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2001 Report Share Posted September 21, 2001 you wrote: <Do you take Sinemet? This sounds like the feeling my wife has when she first wakes up and the Sinemet has worn off completely from the previous night's dose.> Yes I do...thanks for the help. It is a very weird feeling. I'm debating whether to start taking a half dose in the middle of the night or something. I usually wake-up around 3 am or so on a regular basis even if I stay up all day without napping. SJ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2001 Report Share Posted September 21, 2001 SJ, Rather than taking a dose in the middle of the night, you may want to look at a Sinemet CR (continueous release) at bedtime. That slowly releases medicine all night. Take care, Bill and Charlotte ======================= SJ Staub wrote: > you wrote: > > <Do you take Sinemet? This sounds like the feeling my > wife has when she first wakes up and the Sinemet has > worn off completely from the previous night's > dose.> > > Yes I do...thanks for the help. It is a very weird > feeling. I'm debating whether to start taking a half > dose in the middle of the night or something. I > usually wake-up around 3 am or so on a regular basis > even if I stay up all day without napping. > > SJ > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2001 Report Share Posted September 23, 2001 Bill and Charlotte wrote: <Rather than taking a dose in the middle of the night, you may want to look at a Sinemet CR (continueous release) at bedtime. That slowly releases medicine all night.> Thank youfor the advice. I'll talk to my internist about it. My neurologist,on the other hand, wanted me off Sinemet and Amantadine, I followed the advice and became worse. Spoke with with my internist and he put me back on Sinemet. It sure helps with the tightness in my neck strap muscles, swallowing and the burning pain in the calf muscles. Still having balance problems though. MPurcellPat@... wrote: <My husband experienced paralysis in both arms and legs one morning a few years ago and I called 911 as I thought it was a stroke. At that time he was experiencing a flu with a fever and seemed a little dehydrated. I did not know this, I thought he had a stroke. It took quite a while for him to recover. Now he is quite crippled from SDS but at that time it came on quickly.> My heart goes out to your husband. What did the doctors say about the paralysis? Was your husband's SDS a sudden onset or did it come onover a period of time (i.e. slowly progressing)? I also sleep apnea with stridor and use a CPAP when possible. At times it make s me feel like a balloon (bloated)! Some other posts mentioned BiPap(?). What is this? I sometimes wonder if the lack of oxygen is contributing to this paralysis... Thanks for all the great advice on this list! You are all wonderful people! SJ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2001 Report Share Posted September 23, 2001 Dear SJ: My husband Bob's SDS came on slowly over quite a number of years. When he had the paralysis episode he was in the Parkinson Diagnosis stage (that is what I call it- though it was not true Parkinson). It was not until he had a Pacemaker was he diagnosed with SDS. Now when I see and hear all the symptoms I can see that even when we were seeking help he had SDS all along. The beginning years we did not know what lie ahead and went right along enjoying life and traveling and I am glad we did. I can't remember exactly but I think the paralysis episode was at least 5 years or more ago. Take care, Pat Purcell from Framingham MA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2001 Report Share Posted September 23, 2001 SJ, Sorry, the balance problem can not be cured - a wheelchair will help. Take care, Bill and Charlotte ======================= SJ Staub wrote: > Bill and Charlotte wrote: > > <Rather than taking a dose in the middle of the night, > you may want to look at a Sinemet CR (continueous > release) at bedtime. That slowly releases medicine > all night.> > > Thank youfor the advice. I'll talk to my internist > about it. My neurologist,on the other hand, wanted me > off Sinemet and Amantadine, I followed the advice and > became worse. Spoke with with my internist and he put > me back on Sinemet. It sure helps with the tightness > in my neck strap muscles, swallowing and the burning > pain in the calf muscles. Still having balance > problems though. > > MPurcellPat@... wrote: > > <My husband experienced paralysis in both arms and > legs one morning a few years ago and I called 911 as I > thought it was a stroke. At that time he was > experiencing a flu with a fever and seemed a little > dehydrated. I did not know this, I thought he had a > stroke. It took quite a while for him to recover. > Now he is quite crippled from SDS but at that time it > came on quickly.> > > My heart goes out to your husband. What did the > doctors say about the paralysis? Was your husband's > SDS a sudden onset or did it come onover a period of > time (i.e. slowly progressing)? > > I also sleep apnea with stridor and use a CPAP when > possible. At times it make s me feel like a balloon > (bloated)! Some other posts mentioned BiPap(?). What > is this? I sometimes wonder if the lack of oxygen is > contributing to this paralysis... > > Thanks for all the great advice on this list! You are > all wonderful people! > > SJ > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2001 Report Share Posted September 23, 2001 , Charlotte went through that stage also. Crowds made her extremely nervous. The wheelchair does make most people give you a little room (a nudge with the w/c will move them if they don't give you room ) The w/c will also give you mobility. It's not that bad - I keep telling you - it gets you to the front of the line at Disney World ) Take care, Bill and Charlotte ========================== " B. Fisher " wrote: > Greetings Bill! > > You noted to SJ: > > > Sorry, the balance problem can not be > > cured - a wheelchair will help. > > I remember your telling me how the balance problems so badly impacted > Charolotte. And I thought " How bad can it be? " > > Stupid me! I should know by now that God wants us to learn! I should know > not to ask for insight! ;-) [bTW - I don't actually think God visits bad > things on people - rather God provides tools to bring order from chaos.] > > As my cerebellum problems have increased, it amazes me how very bad my > balance becomes. All it takes is a crowd with lots of motion and sound. > WOW! I suddenly am not sure which end is up and which end is down. This is > not a panic attack. No panic / fear. Just complete confusion (due to > information overload). > > When it happens, I need to sit still, stuff in my ear plugs, close my eyes. > The worst of it passes after a bit, but I then need to try to get out as > quick as possible. > > Yup. I'm finally starting to talk with my wife about needing a wheelchair. > At this point, I don't need it but on some occasions. But the need is > increasing. As this progresses, I will NOT be able to stay upright in those > settings. And I refuse to just sit at home. That would be giving into > this. > > Regards, > =jbf= > > B. Fisher > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
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