Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 BeBe: CT is open to anybod who wants to come. Last year was great. Please contact Dolores and she will fill you in. and I are going and Cecere is baking me a birthday cake. Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Bebe,the next time you are in the CT. area let me or Dolores Carron know we are very close to the Avon area. Would love to meet with you,maybe have lunch? Cecere. P.S. We are planning a meeting on June 5th,at the Wethersfield C.C. Would love to have you attend! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Bebe, I take baclofen 20mg 3X/daily, Zanaflex 4 mg 4X/daily and Klonopin 7 mg with different dosages 4X/daily. I have had PLS diagnosed since May '96, but have had real problems with it since Feb '95. I was off work for 18 and 1/2 months. I have noticed some memory loss and occasionally some confusion. I don't know if it is the meds or PLS. I do know that PLS can cause "minor cognitive impairments," but can't find the source of that info again. This includes memory. If there's one thing I miss the most because of this disease, it's my mind. Mike Gray Social1997@... wrote: Everyone or Anyone: Someone wrote about a data base that had people's biography/history of PLS, is that accessible to me? I keep reading about a group in Connecticut and wonder if it is an "open" or "closed" group. My son lives in Fairfield and I am there almost every month, and in the Avon area about every two months. Attended a workshop in neuropsychology yesterday. The speaker, Honor, Ph.D., spoke of the cognitive involvement with those having neuromuscular disorders and how they are often misdiagnosed by psychiatrists and psychotherapists. He had no information about any cognitive effect on those having motor neuron disorders. I am wondering if some of my memory loss is really due to the natural deterioration of age or if it is MND related. I spoke to my neurologist about the cognitive side effect of Baclofen, as it is mentioned in the pharmaceutical blurb. He said that if I were taking 80+ mg/day it might be something to consider, but since I am only taking 10 mg 3x a day he ruled it out. Wondering if anyone else has any input on any cognitive effect of the disease or the medications. Bebe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Bebe, The CT group is most definitely open to everyone. If you'd like to become an " official " member, I can send you an application by mail. The group is called the CT Connection. Since it is the first PLS/HSP support group (in the world), people from surrounding states have become members. We will be having a day long meeting on June 5 in Wethersfield. The cost will be $25 per person. Let me know if you are interested in attending and I'll send details. We have two wonderful speakers planned. Dolores Carron d.carron@... Re: Digest Number 1156 > Everyone or Anyone: > Someone wrote about a data base that had people's biography/history of PLS, > is that accessible to me? > I keep reading about a group in Connecticut and wonder if it is an " open " or > " closed " group. My son lives in Fairfield and I am there almost every month, > and in the Avon area about every two months. > Attended a workshop in neuropsychology yesterday. The speaker, Honor, > Ph.D., spoke of the cognitive involvement with those having neuromuscular > disorders and how they are often misdiagnosed by psychiatrists and > psychotherapists. He had no information about any cognitive effect on those > having motor neuron disorders. I am wondering if some of my memory loss is > really due to the natural deterioration of age or if it is MND related. I > spoke to my neurologist about the cognitive side effect of Baclofen, as it is > mentioned in the pharmaceutical blurb. He said that if I were taking 80+ > mg/day it might be something to consider, but since I am only taking 10 mg 3x > a day he ruled it out. > Wondering if anyone else has any input on any cognitive effect of the disease > or the medications. > Bebe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Bebe, We all are different! We react to do meds in different ways! I am very sensitive to some drugs and Baclofen is one of those. One of the reasons I had the Baclofen pump in planted was because of the cognitive Baclofen effect had on me. I am also very sensitive to Baclofen pump. I am at a very low dose and can only have increases of no more than 4% at a time(normal increases are 10% to 15%). If I am given a higher dose I get spinal head aches and my body gets jelloy (no control for a few days). If I even take 1/4 of a pill now I go right to sleep and my thinking is impaired, why?, the Dr.s don't know. So yes the Baclofen dose at 10mg 3X a day can effect your cognitive skills! My neurologist under stood this and the neurologist from the MDA said he has seen this reaction many times, so my reaction and yours is not so uncommon. Maybe some of the others can give you a suggestion on how to relate this to your neurologist so you can find other meds that might work better for YOU. Take care! B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Gee ! When we left CT last year, seems to me you mentioned meeting and I for lunch, and it never came to be. Now I am worried that I won't get my cake! LOL!!! Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Bebe,the next time you are in the CT. area let me or Dolores Carron know we are very close to the Avon area. Would love to meet with you,maybe have lunch? Cecere. P.S. We are planning a meeting on June 5th,at the Wethersfield C.C. Would love to have you attend! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2002 Report Share Posted March 11, 2002 Mike Gray, Your the therapist? I have something to ask you. Would you please send me you E-mail address so I may ask you a question. Please, B. Oregon ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 Rita,that is a strong possibility! But I still love you. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 Hi Mike, What is Klonopin for? I'm sure that I told you that I take a total of 28 mg. daily. I too have noticed some brain (my husband say to have problems you have to have one - ha!) problems. Mine is about numbers. I forget house or street numbers or turn them around wrong. I have problems counting money. I used to never get lost but now I forget street & house numbers. I don't know if it is the PLS or medication or just old age. Does anyone else have problems like thsese? Or mine might be partially the result of severe staph infections that I had in 1999. they were life threatening. Take care. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2002 Report Share Posted March 12, 2002 Beth, 28 mg of Klonopin is a lot. It is an anti seizure medication that is also used as a muscle relaxer and an anti-anxiety agent. Your memory problems sound familiar. I used to be able to find my way around strange towns without assistance, but now can't even find the other side of the street without getting lost. Well, maybe it's not that bad. But there definitely is a difference in my ability to deal with directions and numbers. I used to have a photographic memory, but lost it when I had viral encephalitis in 1972. After about 1 year my memory was good, but no where near where it had been. Now I am wondering if it is just PLS or the medications or a combination. Mike HopeyS89@... wrote: Hi Mike, What is Klonopin for? I'm sure that I told you that I take a total of 28 mg. daily. I too have noticed some brain (my husband say to have problems you have to have one - ha!) problems. Mine is about numbers. I forget house or street numbers or turn them around wrong. I have problems counting money. I used to never get lost but now I forget street & house numbers. I don't know if it is the PLS or medication or just old age. Does anyone else have problems like thsese? Or mine might be partially the result of severe staph infections that I had in 1999. they were life threatening. Take care. Beth Quote Link to comment Share on other sites More sharing options...
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