Guest guest Posted June 14, 2006 Report Share Posted June 14, 2006 Sorry for the belated welcome....but welcome nonetheless!! I don't have the voice issues but progressed quickly in other ways and am in a wheelchair full time (unless walking in the pool!!!!). I actually only had about 6 months after significant onset of the symptoms where i could walk and then try a cane, then a walker. Arms and hands actually started the whole thing, but quickly moved to legs! Am working on getting some torso strength and leg strength back after 2 years in chair by doing my version of pool therapy, after pool therapy was over. Was like a whirlwind going to see all these doctors to try to figure out what was going on.....think they ruled out everything and altho i am still on notice for als, it doesn't really appear to me that is going to be the case----or i will it to be so anyway!!! There is an enormous amount of support here and an enormous amount of information that each of us hold. Altho we are all different and have our own quirks (both within and outside the illness---LOL!) we are all here sharing the same basic journey and the same basic emotions that come with having a progressive, chronic disease over which we have no control! Take care and i see other posts i have yet to read so far (either I got very behind or we have been extra chatty lately---i think it is me tho). Is fun to see posts when there are successes and posts when there is not, so do keep sharing. By the way, we are having the first women's retreat here in tampa fl in oct if you are interested please let me or kathi geisler know. There is a survey and all the information on the sp-foundation.org website. Tawny email from Tawny H. Swain Castle, MA Re: welcome from Delores Thank you Delores for the warm welcome. Like you, I starting wall walking, progressed to one cane and now use two forearm crutches. You are fortunate that your voice is unaffected. Some days I never know what is going to come out when I try to speak. Some days my voice is hoarse, some days a whisper, but mostly it is just slow and halted. I had to go to google to look up what NORD is (National Organizations for Rare Disorders). Thank you I learned something new today. Jen Dolores Carron wrote: > Welcome to you both. I'm sure you will find the members of the list to > be a great source of experiential information and support. I have had > symptoms of PLS since 1985 or so. My diagnosis did not come for almost > 10 years after that. Over the years, I progressed from " wall walking " > to a cane and for the past 10 years, I've been using a walker. My > voice is unaffected. Most of my weakness, spasticity and pain are on > my right side. In response to your questions, I do have lower back > pain, burning in the soles of my feet, and an ache in the back of my > left thigh. > > I am a Registered Dietitian. I had to stop working in 1995 because of > difficulty walking. My work area (in the dialysis unit) was 76 degrees > in both winter and summer. I am very heat intolerant and am > significantly weaker when I am in those temperatures. I feel the > strongest when it's 65-68 degrees and not humid. > > Another PLS Friend, C., and I organized the first large > gathering of PLSers in October 2000. A photo of the attendees is on > the inside cover of the NORD booklet about PLS. I live in CT and am > the organizer of the CT Connection. We'll be having another get > together soon. Our " big " meeting is usually in June but I'm running a > little late due to some non-PLS medical issues. I hope you'll both > have the opportunity to attend a connection in your area or elsewhere. > Meeting people who share the same challenges is very reassuring and > uplifting. Yes, we share our concerns, but mostly we have a great time. > > Dolores > > Quote Link to comment Share on other sites More sharing options...
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