Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Diane, There is one person who just recently starting riding. She indicated that yes it has helped her. Like you stated it helps stimulate those muscles that have forgotten how to react. Jean Ann King in Georgia is using the riding therapy. I'm sure she will pop in to fill you in on her venture..........................Talking about how other people treat you having a illness, I've found having these broken toes and wearing this confounded boot people look at me as only having a bad accident. I still use my walker but I guess they think its all in getting around. People ask me Oh my how did you do that. If they only knew the true. I lost my balance and got caught in between my walker and the bedroom dresser. I' just say I wasn't paying attention and lost my balance. It just easier. When I didn't wear this boot people will just smile and never ask why,,,,,,,,,,,,,,,,Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Well you just joined a family of about 400 people who know one or two things about PLS. We are a scary lot, some more than others, but like family, they are like weird uncle Harry. Or were you talking about the disease? ;-) Welcome! dale Re: PLS > > Just diagnosed....and trying to figure this site out. NEED support, as > NEVER heard of anyone with PLS. Scary stuff. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Dale, So can we call you weird Uncle Dale?? LOL Your niece, Sue Me > Well you just joined a family of about 400 people who know one or two things > about PLS. We are a scary lot, some more than others, but like family, they > are like weird uncle Harry. Or were you talking about the disease? ;-) > > Welcome! > > dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2005 Report Share Posted August 25, 2005 Hi I am from Tn an I hope you all can give me some insight . I am dating a wonderful man that has this spastic perplagia(sp?). But I do not know much about it. He answers any question I have sometimes I am just not sure what to ask. I cannot stress how wonderful he is... he has become the father my children did not have. I just wonder what the prognosis is. However I cant really find any info..but I want everyone to realize it does not matter to me I love him anyways. I would just like to have an idea of what we will face in the future...but I guess only god knows what is instore for us. I guess I am rambling i am not really sure what to say. lkgentner@... wrote:Welcome -- tell us more about yourself. Where do you live, etc. We are scattered all over the country (and out of the US too) so we may be close by you. We're here to offer support if we know what you're asking. If you haven't found our website, please go to www.sp-foundation.org and you will find a wealth of information. On the website you'll see that we're entering our major Fundraising season and there are several local TeamWalks as well as our national conference in Coumbus, Ohio. Gentner, PLS Fremont, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 Good questions : A few neuros say they can tell PLS by a minute change in the EMG. Most say the EMG is normal in PLS and only use repeated EMGs to see if you are developing LMN involvement ( ALS). My many neuros realize how traumatic the full ALS EMG is and only do it if they have to. I had the full one in 2001 - needles even in toungue, lips and eyelids. I have not had one since. A much easier thing to do is to run a CPK blood test which increases if there is muscles breakdown or atrohy. Now sometimes if you are taking Lipitor or another statin drug your CPK will increase do to the drug or if you exercise hard and then have blood drawn, CPK will also be increased I have a BS in Laboratory Sciences....I didn't just sleep at a Holiday Express. LOL Hope that helps Eva -- In PLS-FRIENDS , " CYNTHIA THOMAS " <cmthomas@p...> wrote: > Thank you so much Eva. May I ask something else, I suppose that negative test results do not mean that you do not have this disease? such as EMG's? Also, how often should an EMG be performed? I have heard that an EMG is very sensitive as to time, & yet, I have read that in the case of PLS. one should be done every few months, to aid in diagnosis, as it could show muscular changes? Hope I haven't confused you as much as myself!! LOL Thanks again > > Re: pls > > > No test comfirms PLS. It is the elimination of everything else. > Sorry, Eva > > > > > i have been tentatively diagnosed with pls or maybe sma, but > the > > > neurologists don't seem sure. any information will be welcome. > when i > > > describe how i am growing weaker, they just stare and murmer. i > > > describe what is happening to me as dissolving. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 Thanks again Eva, your email was very informative. & helpful Re: pls Good questions : A few neuros say they can tell PLS by a minute change in the EMG. Most say the EMG is normal in PLS and only use repeated EMGs to see if you are developing LMN involvement ( ALS). My many neuros realize how traumatic the full ALS EMG is and only do it if they have to. I had the full one in 2001 - needles even in toungue, lips and eyelids. I have not had one since. A much easier thing to do is to run a CPK blood test which increases if there is muscles breakdown or atrohy. Now sometimes if you are taking Lipitor or another statin drug your CPK will increase do to the drug or if you exercise hard and then have blood drawn, CPK will also be increased I have a BS in Laboratory Sciences....I didn't just sleep at a Holiday Express. LOL Hope that helps Eva -- In PLS-FRIENDS , " CYNTHIA THOMAS " <cmthomas@p...> wrote: > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 hi! my name is miki. i am 49 yrs. old. i live in corry pa. my doctor tells me he thinks i have pls. he said it takes time to rule out everything else. if it remains an upper motor neuron disturbance only it is called pls. if it is both upper and lower motor neuron disturbance then it is als. he said usually after 5 years they assume the disease is pls. i am going back to the neurology clinic right after christmas and to johns hopkins for a second opinion after the first of the year. i am losing some mobility in my legs. i am a skier, a swimmer. a runner and a ballet dancer. not being able to move freely and without pain is terrifying to me. it is becoming difficult to be at work all day. any suggestions on doctors or clinics or even alternative healing programs? miki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 Miki, I know how you feel. I was a hiker, dancer, golfer, and did aerobics and tai chi. But life does go and it can still be good. I found other activites to occupy by time and try not to dwell on what I can no longer do. It's hard I know. Hang in there - Susieq mjkhammond wrote: hi! my name is miki. i am 49 yrs. old. i live in corry pa. my doctor tells me he thinks i have pls. he said it takes time to rule out everything else. if it remains an upper motor neuron disturbance only it is called pls. if it is both upper and lower motor neuron disturbance then it is als. he said usually after 5 years they assume the disease is pls. i am going back to the neurology clinic right after christmas and to johns hopkins for a second opinion after the first of the year. i am losing some mobility in my legs. i am a skier, a swimmer. a runner and a ballet dancer. not being able to move freely and without pain is terrifying to me. it is becoming difficult to be at work all day. any suggestions on doctors or clinics or even alternative healing programs? miki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2005 Report Share Posted December 5, 2005 Dear Miki, I'm so sorry about your problems, and the possible PLS diagnosis. It can be frightening. I was diagnosed at the Mayo Clinic in Rochester, Minnesota in late 1999. I'm very fortunate to be mildly affected, only in my legs, and very little in my arms & hands. My balance is poor, I limp, and have daily pain, and am bothered with fatigue, but I still work full-time. I too have given up my cross-country and water skiing, dancing, running, and bicycling, but I do as much for myself as I can. I hope your Pls, or whatever it is, is also mild, and very slow to progress! YOu've come to the right place though, for information & support. This is a great group! Hugs, Laurel pls hi! my name is miki. i am 49 yrs. old. i live in corry pa. my doctor tells me he thinks i have pls. he said it takes time to rule out everything else. if it remains an upper motor neuron disturbance only it is called pls. if it is both upper and lower motor neuron disturbance then it is als. he said usually after 5 years they assume the disease is pls. i am going back to the neurology clinic right after christmas and to johns hopkins for a second opinion after the first of the year. i am losing some mobility in my legs. i am a skier, a swimmer. a runner and a ballet dancer. not being able to move freely and without pain is terrifying to me. it is becoming difficult to be at work all day. any suggestions on doctors or clinics or even alternative healing programs? miki Quote Link to comment Share on other sites More sharing options...
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