Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Connie, Welcome to PLS Friends. You just missed a large meeting in New York about the pump. Perhaps Bob Gustafson (HSP) or Bebe Leon (PLS) (email addresses in the Copy To) can let you know of any write up of the meeting. It was just held the first of May. You can also look on our website (_www.sp-foundation.org_ (http://www.sp-foundation.org) ) and click here where it says " Search " and type in pump survey and you'll find lots of information. I just did this and this is the address that showed _http://search.atomz.com/search/?sp-q=pump+survey & sp-a=sp1002b20c & sp-advanced= 1 & sp-p=all & sp-w-control=1 & sp-w=alike & sp-d=custom & sp-date-range=-1 & sp-start-mon th=0 & sp-start-day=0 & sp-start-year= & sp-end-month=0 & sp-end-day=0 & sp-end-year= & sp -x=any & sp-c=10 & sp-m=1 & sp-s=0 & sp-f=ISO-8859-1_ (http://search.atomz.com/search/?sp-q=pump+survey & sp-a=sp1002b20c & sp-advanced=1 & \ sp-p=all & sp-w-control=1 & sp-w=a like & sp-d=custom & sp-date-range=-1 & sp-start-month=0 & sp-start-day=0 & sp-start-yea r= & sp-end-month=0 & sp-end-day=0 & sp-end-year= & sp-x=any & sp-c=10 & sp-m=1 & sp-s=0 & sp- f=ISO-8859-1) if this doesn't link, cut and paste into your browser. Any new people also like to check out other PLSers stories at _http://als-pls.org/_ (http://als-pls.org/) ---- click on PLS Data--you'll see 96 PLSers who have listed their data. Gentner sp-foundation Fremont, CA Alone we can do so little. Together we can do so much. Helen Keller (1880-1968) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Hi there Connie, Welcome to our family, You will find many ansewers hear all you need to do is ask and we will try real hard to help you out with ansewers. I was just diagnosed with PLS last year after. I was diagnosed with M.S about 7 years ago but continually got worse so they put me threw all the tests again and come to find out its not M.S after all. Atleast I dont have to give myself shots anymore. You mentioned that you can no longer work, I recommend you to file for Social Security to help with your finances if you havent already. I am on Baclofen 70mg a day, Provigil to help threw the day, Neurotin which also helps a great deal with spactisity, Trazadone for sleep, and I am also on medical marijuanna that helps me a whole lot with spacticity and puts me right to sleep. Just ask away at questions, or concerns. You will find a great deal of support here. Again welcome, Sandy in Oregon PLS Dear Fellow PLSer, I obtained your email address when you joined PLS-Friends. (I am the founder and owner of PLS-Friends.) Welcome to the group that no one wants to join--but is happy to have done so when PLS rears its ugly head. PLS-Friends is a great group of people. If you have questions, or need some support, please post a message to the group. You'll get many useful, supportive responses. Just send your email to PLS-FRIENDS . Of course, if you just want to lurk and read what others say, please do that. If you need medical info about PLS, please let me know. I can connect you to every worthwhile online source of PLS info known to man (in English). I also have copies of many PLS studies--many that I can send by email. There's no need to give me your name--just your email address. I was diagnosed with PLS eight years ago, in 1996. Currently my disorder only significantly affects my legs and trunk. There are also minor, subtle changes in my hands and arms. I have no speech difficulties. I use forearm crutches inside and outside. I also wear AFO's (custom made lower leg braces) all day long to prevent foot drop and knee strain. I recently obtained a power wheelchair that I will use for trips to the mall, and for going to lacrosse and soccer games with my two boys. I left my career six years ago, and now volunteer for the Spastic Paraplegia Foundation. (See our web site at http://www.sp-foundation.org . All of the medical info on the site has been reviewed and approved by our medical advisor--Dr. Fink of the University of Michigan Medical School.) Prior to the creation of the Spastic Paraplegia Foundation we had no organization pushing for a cure of PLS. Now we do. I hope you enjoy PLS-Friends. If you have any questions, please feel free to contact me. Mark Weber mark@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hi Connie, Welcome aboard!! Sorry you have PLS, but happy you have found us. I too was told by my neurologist that the pump would work for me but I'm not ready for such an invasive source of medication. Anyway, I know a few people on the PLS strip have tried it so I'm sure they'll tell you of their experience. I was diagnosed in 2000 but prior to that they thought I had MS. It doesn't matter because I believe this all will pass very soon for all of us. Again, welcome. Take care and... God Bless Yolanda PLS Dear Fellow PLSer, I obtained your email address when you joined PLS-Friends. (I am the founder and owner of PLS-Friends.) Welcome to the group that no one wants to join--but is happy to have done so when PLS rears its ugly head. PLS-Friends is a great group of people. If you have questions, or need some support, please post a message to the group. You'll get many useful, supportive responses. Just send your email to PLS-FRIENDS . Of course, if you just want to lurk and read what others say, please do that. If you need medical info about PLS, please let me know. I can connect you to every worthwhile online source of PLS info known to man (in English). I also have copies of many PLS studies--many that I can send by email. There's no need to give me your name--just your email address. I was diagnosed with PLS eight years ago, in 1996. Currently my disorder only significantly affects my legs and trunk. There are also minor, subtle changes in my hands and arms. I have no speech difficulties. I use forearm crutches inside and outside. I also wear AFO's (custom made lower leg braces) all day long to prevent foot drop and knee strain. I recently obtained a power wheelchair that I will use for trips to the mall, and for going to lacrosse and soccer games with my two boys. I left my career six years ago, and now volunteer for the Spastic Paraplegia Foundation. (See our web site at http://www.sp-foundation.org . All of the medical info on the site has been reviewed and approved by our medical advisor--Dr. Fink of the University of Michigan Medical School.) Prior to the creation of the Spastic Paraplegia Foundation we had no organization pushing for a cure of PLS. Now we do. I hope you enjoy PLS-Friends. If you have any questions, please feel free to contact me. Mark Weber mark@... Quote Link to comment Share on other sites More sharing options...
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