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Nancy Wow! Two inspirational notes in one day! What a way to start your morning! I was in your place about 3 years ago. I could barely sit up for 30 minutes at a time. There might be a few days that I could have enough energy for someone to take me to the store, but I usually had to spend the rest of the day in bed. The doctor was near diagnosing me with MSA, but just referred to it as "atypical Parkinson's." Then I had a miraculous thing happen. The movement disorder specialist that I had been seeing at Emory (Atlanta) called to see if I might be interested in being screened as a candidate in a clinical trail. I asked more questions. It was the first-time ever (phase I - Safety) to recruit participants for experimental brain surgery. What did I have to lose? I said "yes." To make a long story short, I passed the screening, was operated on within 6 weeks - and although I am not cured, 3 years post-op I am quite functional and improved by at least 50%. I still have flare-ups with autoimmune difficulties like fibromyalgia and Sjogren's, but I am so much better! The surgery was known as Spheramine (retinal dopamine-producing cells from a donor eye). It is one of the few transplantation surgeries that does not require immunosuppresent therapy. My local neurologist recently sent me this little note via email after I reported to him all that was going on in my life: "Things really sound exciting for you. I remember when you first were comtemplating retirement how down and helpless you felt and that you felt your 'usefullness' was over. It it amazing all the things that you have accomplished since that time. Perhaps some things that you may never have dreamed possible. Remember don't ever give up. Dr. John D." I may crash tomorrow, but I have had 3 years of my life given back to me. This may sound like a recruitment letter, and in a way it is. I (along with some people you know like Linda Herman and newly drafted Murray Charters) are helping with an effort known as the Parkinson Pipeline Project. This is a voluntary effort to help speed up the FDA process of approving drugs and treatments for PD and some other neurological illnesses. Right now we are looking for people - especially PWP's - to "track" or locate online information on current therapies. This is step one of what we foresee to be a major move by the PD community. If any of you would like to help, visit the website www.pdpipeline.org and sign up as a volunteer today! As my neurologist said, "Remember don't ever give up!" ----- Original Message ----- From: "nm" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, August 29, 2003 8:31 AM Subject: Re: No reply > u might want to write to the shy drager/msa list. we have more of a pd + > group there. I am 45 and been dealing with this unexpected array of > noticable neuro/autonomic medical problems that can't be fixed. Some > there are no meds. I can't dwell on everything that is wrong with my > organs, i just have to keep trying. i can accept, but FEAR is a terrible > thing. Don't let FEAR over take u. I know it is very hard. I understand. > Keep writing. IF no replys comes, then at least u wrote ur feelings. > Doing that is a big relief. > olga i can't reply hardly, but i do read. I can't help people like i use > to and i am not use to that. If the problem is quick to fix with a phone > number for referance for that person in dispair I do it, otherwise I > have been learning to let go. That is really hard because my ethics > dictate otherwise. I took my professional ethics very seriously, but > have to accept that I don't have the energy to solve the problem for > others. HOWEVER, it isn't that I don't care. > > Someone will always care about you. Someone will always being ur hand. > It is just sometime u may not feel the physical hand. > don't give up. > > > nancy m > > Chandrashekhar Nagarkar wrote: > > Dear Olga, > > > > I was so overwhelmed by your heart felt plea for help. Your original Email, listed a huge list of problems in kidneys, liver, heart, blood pressure, pain, PD, pneumonia etc I found it frightening the number of things which you are having to cope with. My admiration of your strength and resilience, and your concern to help others with. As if that was enough you were actually writing about helping someone else. Olga you are truly an example of courage and determination. I don't know if when the time comes for me to cope with similar suffering I will have the same grit. > > > > You might feel lonely but you are not alone, like me there is a large mass of PIEN members who are with you and are thinking of you. Over the last few days since I read and printed your email for my wife to read we have been talking about you and about what we could suggest as a solution. So far we have drawn a blank, but don't despair someone is bound to come up with the right ideas. Most likely the ideas and suggestionsare already in your own head waiting to be nudged forward and brought to life. Until then please hang on > > > > Shekhar > > > > > > ---- Original Message ----- > > From: Ronaky Olga > > To: [log in to unmask] > > Sent: 24 August 2003 00:36 > > Subject: No reply > > > > > > "Into your hands I command my spirit" > > That's what He said. > > > > And so did I. > > No reply. > > Don't know why. > > > > Hoped somebody would help me. It was a big mistake - me and my PD +? stayed > > lonely. > > > > God bless you all, > > > > Olga > > > > > > ----- Original Message ----- > > From: "Ronaky Olga" <[log in to unmask]> > > To: "Parkinson's Information Exchange Network" > > <[log in to unmask]> > > Sent: Thursday, August 21, 2003 6:04 PM > > Subject: 1. Papaya extract 2. PD and/or hypothyroidism? > > > > > > > Hi Friends, > > > > > > I have some important questions, hope some one can help me. > > > > > > 1. SNIPPED > > > > > > 2. This part is about me... > > > > > > There is nothing positive change in my state, moreover, I am not at all > > > doing well. > > > > > - SNIPPED > > > > > Ideas? Opinions? Suggestions? Similar experiments? > > > > > > I meant here experiences, not experiments. Sorry. Now I am seeing to have > > problems in finding right words not only when speaking but also in written > > texts. > > > > > > > Love, > > > > > > Olga > > > 51/47/40 PWP and CG for my own > > > > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > > > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn