Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 We come in all different ages but I would say most of us it started in our 40's to 50's. I believe that is a common age but there are a few that started earlier with symptoms. I was never clumsy just the opposite I had good balance. I took several years of yoga and that has a lot of balance positions in it, it was very easy for me. My symptoms started with my voice and that was my only sign for five years. I fell one day on a wet floor and broke my wrist and during physical therapy my right leg would freeze up. After that my balance started to worsen. My voice began in 1991 so I was 45 and then the PLS really showed up at age 49. I'm 58 now and my progression is slow (knock on wood). Your life doesn't end it just has changes and you will go up some steep roads but keeping a positive attitude is in my opinion a key ingredient to coping with PLS. Avoiding stress and having positive people around you helps a great deal........................Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Yes, the best thing to do is look at 's website...last I looked there were 107 of us. I'm totally the average age when my symtpms began 51. We've had several new people lately sign on and seems that most have been younger. Take what Ronnie said to heart...couldn't have said it better. Gentner Fremont, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 Dear Friend It's certainly a struggle to have PLS. When I look back I probably had symptoms in my late 30's. You can see my progression on my website. My goals for my life totally changed. Now I look forward to much simpler goals. But my most important forward looking goal: To help my doctor's document and try to find the best ways to treat the symptoms of PLS. Lynn http://spoilingaunty.tripod.com Ages Dear Friends. Please don't feel this rude I don't mean it to be. How old are you? How old were you when your symthoms came about? My symthoms first came about when I was in my 20's. After arobics people would ask if I hurt myself. I would fall in the middle of the street for no reason. I would run in marathons and for exorcise, I started to fall. I went to a doctor who x-rayed my ancles, of course he didn't find any thing. At work they would tease me and say that I was putting ruts in the carpet. Than some one asked if my feet hurt.? so I went to a chiropractor, who in turn refered me to my first Neurologist he thought I had a brain tumor we even scheduled surgery. Then he screened me for M.S. when this turned out negative he refered me to another Neuroligst who refered to another, so and so on. which brings me to now 43 with nothing to look forward to. ---------------------------------------------------------------------------- -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2005 Report Share Posted April 7, 2005 and for exercise, I started to fall. That sounds dangerous! Just kidding, I know what you meant, anyway, I hope I do. I have a website that has a bunch of PLSers and their data. I'm behind on updating it right now, but I promise I'll get to it any day now. http://www.als-pls.org/PLSdata.htm You'll see how old most were when they started to get symptoms. Not too many as early as you. But there are some. Thomson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Dear Tmmy, We all read your post and feel the despair you are in at this time because all or most of us have experienced it and with reaching out as you have done now will bring about encouragement from Friends that will alleviate those deep feelings if you allow us to by telling you of the hopes and thoughts and prayers that are being sent to you. It was heart breaking to hear of how you feel now. I hope you tell us more about yourself. Where do you live? What stage is the disease in now? Sometimes it is useless to hear that others are suffering too because there is no way to know exactly how you feel and hearing others are worse off is the last thing you need to hear right now. So write often and a lot!! As you touched our hearts, let us touch yours.....Blessings Jeanette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2005 Report Share Posted April 8, 2005 Hi There I didn't catch your name and since I've been absent for Friends for a while I missed alot of newcomers...and it does seem that more and more are joining our ranks. I'm female and 51 now. Undeniable bulbar symptoms began in June of 1999. I mention sex because we hardly ever address it but seems that there are more females than males in our group. I'll not assume though...maybe its because females are 'the communicators' of the sexes. Eva Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2005 Report Share Posted April 10, 2005 Tammy, My name is Dean. I was diagnosed at 35. I turned 37 yesterday. I have had symptoms since I was 29. I know what you are going through. I played college basketball and have always been a very active person. Dealing with this crazy disease is tough. However, over the last three weeks, I have felt the best I have felt in about 4 years! Are you still walking? How far has your's progressed? Dean, California > > Dear Friends. > > Please don't feel this rude I don't mean it to be. How old are you? > How old were you when your symthoms came about? > > My symthoms first came about when I was in my 20's. After arobics > people would ask if I hurt myself. I would fall in the middle of the > street for no reason. I would run in marathons and for exorcise, I > started to fall. I went to a doctor who x-rayed my ancles, of course > he didn't find any thing. At work they would tease me and say that I > was putting ruts in the carpet. Than some one asked if my feet hurt.? > so I went to a chiropractor, who in turn refered me to my first > Neurologist he thought I had a brain tumor we even scheduled surgery. > Then he screened me for M.S. when this turned out negative he refered > me to another Neuroligst who refered to another, so and so on. which > brings me to now 43 with nothing to look forward to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Tammy, I was wondering if you have had any physical therapy. I do not know if it would help you. I was having trouble like you are prior to the baclofen pump. The UU Hospital had me in physical therapy working on my balance. What they zoned in on was my regaining some confidence and what to do if I felt I would fall. What a great help! I use a wheelchair when we travel by plane. I would be so slow in trying to get anywhere. Too, I know how you feel about not finding a handicapped spot. One thing, Tammy, is it sounds like your husband is like mine in that he helps make you laugh about your illness. You and I are lucky we have someone who is there to help us. One can laugh or cry about our illness and I REFUSE to cry. Diane TAMMY NOLAN wrote: Hi Dean, You asked if I use a wheelchair and if how far have I progressed? Yes I use my wheelchair if I have a distance to walk. I get tired fast. I used my wheelchair once to go to the beach and once at the zoo. I get so worn out if I can't find a handicap parking place and have to walk a distance. I use a 3 legged cane for the most part, because I find the walker so cumbersome and it makes me feel like I am 80. My husband jokes w/ me that he is going to put me in a big open space and take away my cane. I cant't walk in the grass (I guess because it is so uneven). I have very poor balance, I fall alot. Now do you understand why I feel so down? Thanks for listening, Tammy westernpanic wrote: Tammy, My name is Dean. I was diagnosed at 35. I turned 37 yesterday. I have had symptoms since I was 29. I know what you are going through. I played college basketball and have always been a very active person. Dealing with this crazy disease is tough. However, over the last three weeks, I have felt the best I have felt in about 4 years! Are you still walking? How far has your's progressed? Dean, California > > Dear Friends. > > Please don't feel this rude I don't mean it to be. How old are you? > How old were you when your symthoms came about? > > My symthoms first came about when I was in my 20's. After arobics > people would ask if I hurt myself. I would fall in the middle of the > street for no reason. I would run in marathons and for exorcise, I > started to fall. I went to a doctor who x-rayed my ancles, of course > he didn't find any thing. At work they would tease me and say that I > was putting ruts in the carpet. Than some one asked if my feet hurt.? > so I went to a chiropractor, who in turn refered me to my first > Neurologist he thought I had a brain tumor we even scheduled surgery. > Then he screened me for M.S. when this turned out negative he refered > me to another Neuroligst who refered to another, so and so on. which > brings me to now 43 with nothing to look forward to. --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 In a message dated 4/12/2005 10:22:23 PM Eastern Standard Time, tmmynolan@... writes: > Now do you understand why I feel so down Quote Link to comment Share on other sites More sharing options...
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