Guest guest Posted August 13, 2011 Report Share Posted August 13, 2011 Hi Judy, So great to hear about your mom rallying! Yes, Lewy is a roller coaster ride. Funny you should ask about Carilevedopa. My mom was just put on that drug several weeks ago by a neurologist recommended by the LBD group I attend. The Dr said to watch her very carefully in the beginning and put her on half a pill since this drug can cause serious side effects. Well, she was right. By the fourth day she didn't know where she was and by the second week she was like a zombie almost stopped moving entirely! It was like she was gone! Very scary! I had to really push to have her taken off it. I hate having to assert myself, but immediately she started walking again. But as I keep reading in all these posts - everyone is different. I know each loved one reacts differently to each medication. You won't really know til you try it! Marcie _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Sent: Friday, August 12, 2011 7:02 PM To: LBDcaregivers Subject: Carbi-levedopa ? I was wondering if anyone has found that in the later stages of LBD - does the carbilevedopa help the patient or did anyone find That it actually makes them worse? Thanks, Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu> On Aug 11, 2011, at 8:54 AM, " Norma " <Normal@... <mailto:Normal%40nytimes.com> > wrote: > , choking does happen to many people at the later stages of the disease unfortunately. Does it happen only when being fed? Many times, choking can happen at the very late stages as the muscles in the tongue and throat are not working properly due to the Parkinsonism. Saliva can pool somewhat in the throat while sleeping as the person doesn't swallow as often during sleep. However, I believe you are speaking about it happening during a meal. My suggestion is to feed as slowly as possible and wait till each small spoonful is swallowed before putting more into the mouth. Have the spoon touch the tonque and wait till the person closes their mouth to take it and swallow each time, instead of just pushing the food in. I hope this helps, Norma > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2011 Report Share Posted August 13, 2011 Hi Marcie Isn't this strange since even the mds are playing a guessing game ! I even wonder about the exelon patch and how much that is making her so unresponsive? I have heard that some families have actually stopped all drugs in the hope that it all seems to add Complications I also wonder if the antidepressant is doing anything now? At end stage is it kinder to let the body take a natural course and maybe even help to add comfort and less complications ! The biggest disappointment for me is how very little the medical community knows for certain - it's like they are playing a guessing game at the expense of our Los and us watching these experiments ? Do others feel the same way? Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > Hi Judy, > > So great to hear about your mom rallying! Yes, Lewy is a roller coaster > ride. > > Funny you should ask about Carilevedopa. My mom was just put on that drug > several weeks ago by a neurologist recommended by the LBD group I attend. > The Dr said to watch her very carefully in the beginning and put her on half > a pill since this drug can cause serious side effects. Well, she was > right. By the fourth day she didn't know where she was and by the second > week she was like a zombie almost stopped moving entirely! It was like she > was gone! Very scary! I had to really push to have her taken off it. I > hate having to assert myself, but immediately she started walking again. > > But as I keep reading in all these posts - everyone is different. I know > each loved one reacts differently to each medication. You won't really know > til you try it! > > Marcie > > _____ > > From: LBDcaregivers [mailto:LBDcaregivers ] > On Behalf Of Judy > Sent: Friday, August 12, 2011 7:02 PM > To: LBDcaregivers > Subject: Carbi-levedopa ? > > I was wondering if anyone has found that in the later stages of LBD - does > the carbilevedopa help the patient or did anyone find > That it actually makes them worse? > > Thanks, > > Judy R. Strauss LMSW PhD > > Lead Faculty > University of Phoenix > > Jersey City Campus > 100 Town Square Place > |Jersey City, NJ 07310 > Cell- > Email- Jrstr@... <mailto:Jrstr%40email.Phoenix.edu> > > On Aug 11, 2011, at 8:54 AM, " Norma " <Normal@... > <mailto:Normal%40nytimes.com> > wrote: > > > , choking does happen to many people at the later stages of the > disease unfortunately. Does it happen only when being fed? Many times, > choking can happen at the very late stages as the muscles in the tongue and > throat are not working properly due to the Parkinsonism. Saliva can pool > somewhat in the throat while sleeping as the person doesn't swallow as often > during sleep. However, I believe you are speaking about it happening during > a meal. My suggestion is to feed as slowly as possible and wait till each > small spoonful is swallowed before putting more into the mouth. Have the > spoon touch the tonque and wait till the person closes their mouth to take > it and swallow each time, instead of just pushing the food in. I hope this > helps, Norma > > > > > > Quote Link to comment Share on other sites More sharing options...
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