Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Hi . I am so happy to hear from you. It will be great to know others who are dealing with the same issues. Sara is not ready to communicate with fellow PLS'ers just yet. She is only 24 and is not convinced yet that she is going to have to deal with this forever. So that is why I am writing. She does go to the UCSF clinic in the city & her neurologist is Dr. Ann Poncelet. Sara is still adjusting to her body that doesn't do what she wants it to do. When she is ready I know she will want to meet you and everyone else. I am very interested in the Team Walk in September. Perhaps by then Sara will agree to join me. The website is great! Please keep me informed regarding any gatherings. Thanks, Jill _____ From: PLS-FRIENDS [mailto:PLS-FRIENDS ] On Behalf Of Lkgentner@... Sent: Thursday, April 20, 2006 10:19 AM To: PLS-FRIENDS Subject: to Jill Hello, Jill and welcome. I'm so sorry to hear that your daughter has been diagnosed with PLS; she is very young. Most of the research indicates that PLS symptoms begin around 50. I am in that category as I was diagnosed at 49 with symptoms beginning 4 years prior to an actual diagnosis -- mild speech symptoms was my beginning but usually symptoms begin in the legs and move up. There are several of us on this List who go to the UCSF ALS Center, is that where Sara goes? My neurologist is Cathy Lomen-Hoerth. I will be holding our third TeamWalk in Pleasanton on September 16 if you and Sara would like to meet others of us with PLS. We may be getting together for a small " Connection " in the summer, probably in Placerville or in Palo Alto. Please read our website as it is a wealth of information. _www.sp-foundation.org_ (http://www.sp-foundation.org) This is also an excellent website. _http://www.synapsepls.org/_ (http://www.synapsepls.org/) and also...click on PLS Data at _http://als-pls.org/_ (http://als-pls.org/) Gentner, PLS Fremont, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2006 Report Share Posted April 25, 2006 Jill, I am Sue Me and I have HSP and I was diagnosed with that when I was around 26 or 27--I have been skimming your posts but did the doctors ever mention anything about HSP? Not sure what you said was all affected but sure hope you can talk her into going and meeting some others but she needs to be the one to decide when to talk to others-- she has to be the one to accept this! It takes time especially that young! Good luck with everything! Sue Me > > Hi . I am so happy to hear from you. It will be great to know others > who are dealing with the same issues. Sara is not ready to communicate with > fellow PLS'ers just yet. She is only 24 and is not convinced yet that she > is going to have to deal with this forever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2008 Report Share Posted April 2, 2008 Jill, I'm sorry about the state of your marriage. Fibro just makes every damned thing we go through that much worse. Stress of any kind really messes with us. My marriage is just weird....it stresses me too. I have been thinking too if there is something I could do from home...some kind of computer work or billing. I don't know where to turn either. I guess I have to sit down and do some surfing this weekend and see what I can find out. Hugs, /Mi Quote Link to comment Share on other sites More sharing options...
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