Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 > Welcome I'm glad you found us and sorry you were in the > position to be looking for us. I'm just not one for the sit back and > get worse approach regardless of the phase you are in. I guess I'm > the Pollyanna of the group. Everyone needs dreams and goals including > us...though we might have to alter them slightly. > Tell us more about your situation and ask any questions you might > have. This group has a lot more factual information than most > general neurologist on PLS. > Eva > > > > Hello everyone, > > I am completely new to this chat room, so i hope i'm in the right > one. > > I am looking for people who suffer from Primary Lateral Sclerosis > as I > > have just been diagnosed with it and am really eager to learn > more. > > Obviously I have been told by the doctor all he knows (which isn't > > much). I am currently on Baclofen and it takes some of the pain > away, > > but I feel at this stage theres nothing else I can do other than > sit > > back and progressively get worse. > > > > Is there anyone that can tell me their stories or tips? > > Thank you very much > > > > UK > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 , I was only diagnosed with PLS in August, 2005. What I have found is that falling exacerbates symptoms so you must take all precautions not to fall, even to the point of " walking like a snail " . Also, you must not " sit back and wait for the progression. " Find ways to exercise so that you can keep the muscles working that are still working. I swim 3 times a week and do exercises in the water. Had I given up while things seemed like they were moving like a roller coaster I am sure I would be in a chair and unable to do anything for myself. As it is, I do the things that I can, which include cooking and reading and swimming and very short store trips. Since walking it so difficult and dragging the walker in and out of the car is also difficult I usually go to stores with very small parameters (Walgreen's) or Ukrop's where they have riding carts. I still enjoy listening to music and working on music. I have sung in my church choir for 20 years and so far I can still sing though sometimes I lose my voice when I am tired. I also move up and down on the depression scale so you really need to get medication for this as I was told that if you have medication to keep you calmer then you will be less likely to fall or hurt yourself. Most days I try to remember " the cup is half full " although there are some days it just seems impossible to ignore the part that is empty especially when dancing was once a career idea and I have always found solace in dance and entertainment. Now I watch dancing shows on TV but sometimes that even makes me feel worse. Wishing you a slow progression so that you can enjoy all the fullness in your cup as long as possible Sharon Chesterfield, Va. briteeyestwo briteeyestwo@...> wrote: Welcome I'm glad you found us and sorry you were in the position to be looking for us. I'm just not one for the sit back and get worse approach regardless of the phase you are in. I guess I'm the Pollyanna of the group. Everyone needs dreams and goals including us...though we might have to alter them slightly. Tell us more about your situation and ask any questions you might have. This group has a lot more factual information than most general neurologist on PLS. Eva > Hello everyone, > I am completely new to this chat room, so i hope i'm in the right one. > I am looking for people who suffer from Primary Lateral Sclerosis as I > have just been diagnosed with it and am really eager to learn more. > Obviously I have been told by the doctor all he knows (which isn't > much). I am currently on Baclofen and it takes some of the pain away, > but I feel at this stage theres nothing else I can do other than sit > back and progressively get worse. > > Is there anyone that can tell me their stories or tips? > Thank you very much > > UK > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Hi You have come to the right place .You can post everyday if you'd like ive had this now for 6years ,i was told all kinds of rubbish by the Idiots that call their selves Docotrs . Only 2 out of 11 Neuros had anything of inteligence to say ,others dont want us around as we have questions they cant answer .what tests have you had ? MRIs,EMGS Blood ETC ETC .I was 55 when one morning i woke up with slurred speech ,Psoriasis which i had not before .I have Slow progression as im now aftyer 6 yrs. just starting to use the quad cane somewhat Baclofen i cant have it stopped my diaphrram from opening my lungs I took Tizanadine for a while but makes me likle rubber ,cant function ,I have no pain just stiffness and incoordination ,Dysarthria ,Dysphagia ,Hyper Reflexia .Ive looked into the possibility of Herbicides or Organophosphates insecticides as i was healthy just the day before this came on . I lived in a Farm area and worked in alot of farm Houses and Rural . Well were here GEO > > Hello everyone, > I am completely new to this chat room, so i hope i'm in the right one. > I am looking for people who suffer from Primary Lateral Sclerosis as I > have just been diagnosed with it and am really eager to learn more. > Obviously I have been told by the doctor all he knows (which isn't > much). I am currently on Baclofen and it takes some of the pain away, > but I feel at this stage theres nothing else I can do other than sit > back and progressively get worse. > > Is there anyone that can tell me their stories or tips? > Thank you very much > > UK > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 HI I dont have a firm diagnosis as yet but have had symptoms for nearly 11 years. I am at the stage of using a walker outside the home and " wall walking " (as we call it here) inside the home. My speech is slightly affected. As others have told you, PLS progression varies from person to person but generally it is slow and you can plateau for quite some time. My progression was very slow at first and then over 2 years it moved quickly and I have been at the same level for about 6 years. I say that I am in remission. I believe that I went downhill fast in those 2 years as I was a call centre operator who was chained to the chair 5 days a week and thats like being in a wheelchair. Plus there was stress involved. When I left work, my progression stopped. So as Sharon has told you, dont sit back and watch your progression. Its a case of move it or lose it. Keep moving and avoid stress if possible. I believe thats the key to a slow progression. You have come to the right place for questions and answers. I wouldnt be without this site and I have made many wonderful friendships. Aussie Maureen > > Hello everyone, > I am completely new to this chat room, so i hope i'm in the right one. > I am looking for people who suffer from Primary Lateral Sclerosis as I > have just been diagnosed with it and am really eager to learn more. > Obviously I have been told by the doctor all he knows (which isn't > much). I am currently on Baclofen and it takes some of the pain away, > but I feel at this stage theres nothing else I can do other than sit > back and progressively get worse. > > Is there anyone that can tell me their stories or tips? > Thank you very much > > UK > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Welcome ! Well I sure find this group a wonderful source of help and support. It has likely helped me more than my doctors have. Really! There are lots of things a person can do to make life a bit easier....and you will find them in this website.....but I find that keeping an attitude than focuses on what I CAN still do helps me the most. Where are you with the PLS? Are you using any mobility aids...walker, cane, wheelchair etc? Stick with this site .....it really does help! Take care Di............Canada > > Hello everyone, > I am completely new to this chat room, so i hope i'm in the right one. > I am looking for people who suffer from Primary Lateral Sclerosis as I > have just been diagnosed with it and am really eager to learn more. > Obviously I have been told by the doctor all he knows (which isn't > much). I am currently on Baclofen and it takes some of the pain away, > but I feel at this stage theres nothing else I can do other than sit > back and progressively get worse. > > Is there anyone that can tell me their stories or tips? > Thank you very much > > UK > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 , You went to the va in Dayton Ohio ? Now if you find out who this man is let me know, I live just a few miles from there, Tipp City. Where do you live? from Ohio. bore56123z bore56123z@...> wrote: Went to Neuro yesterday at Dayton, OH VA. She said that thier was a man in there yesterday morning with PLS. That he usualy goes to the Cinn., OH VA. I just wonder if he was on PLS-FRIENDS. , OH __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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