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Ray Dad is 71 this year. Peter -----Original Message----- From: Parkinson's Information Exchange Network [mailto:[log in to unmask]] On Behalf Of rayilynlee Sent: Friday, 3 October 2008 2:54 PM To: [log in to unmask] Subject: Re: DBS/Peter's Dad Absolutely, Peter. No tremors for the past 5 years. However, as you know, we are all different. How old is Dad? Ray Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] ----- Original Message ----- From: "Swinburn, Peter" <[log in to unmask]> To: <[log in to unmask]> Sent: Wednesday, October 01, 2008 11:03 PM Subject: Re: Newbies/Exercise > Ray, > > Thanks again for this information. Do you think DBS is worth the effort? > I would like to explore it for my father. > > Regards > > Peter > > -----Original Message----- > From: Parkinson's Information Exchange Network > [mailto:[log in to unmask]] On Behalf Of rayilynlee > Sent: Thursday, 2 October 2008 5:57 AM > To: [log in to unmask] > Subject: Newbies/Exercise > > I am passing on my response to Nihal's email because it contains a > call for early and sustained exercise: > Ray > > Dear Nihal > > Thank you for emailing me and putting such confidence in me. I must > tell you I did not write the exercise article, although I agree with it. > I labeled it "Source unknown" because I got it from a blog with no > author. > > I have had PD 12 years now, was diagnosed at age 60. In those first > early years I did well, treadmilling an hour a day. I liked to > listen to Dixieland Jazz music when I walked, it helped pass the time. > Although I tried Sinemet (which worked only once) and other PD meds, > they didn't help so I don't take any PD meds. > > In 1997 I went to Australia-New Zealand without a cane and walked from > the hotel to the Sydney Opera House. In 1999 my niece and I went to > Egypt. > Although I had a cane I zipped around the tombs and pyramids. I am a > retired history teacher who always loved to travel. If I could > improve to my 1999 status I would go see all the great people I have met online. > I cannot travel now. > > In summer of 2003 I had two DBS brain surgeries which control my > tremors. > In April 2008 I fell on my tailbone and cannot treadmill or walk in > my swimming pool as it makes my back worse. I can't even stand for a > few minutes to use the 2 putting greens in my backyard. > > MY ADVICE TO ALL NEWLY DIAGNOSED PWP: IF YOU CAN, KEEP UP THAT > INITIAL EXERCISE PROGRAM AND BY ALL MEANS DON'T FALL - YOU CAN REALLY > HURT YOURSELF. > > Sometime around 2001 I got an electric "Jazzy" wheelchair because my > doc was afraid I would fall. This may have been a mistake as I can > barely walk now. > > Nihal, one of the many nasty things about PD is the "unknowns" we face. > > Every one of us is different with respect to reaction to meds and > progress of the disease. Although that is a negative, it may also be > a positive. > For example, just because I am losing my voice, it doesn't mean you > will. > I do think we have a window of opportunity at the beginning to use > exercise as much as we can. I wish I had maintained it no matter what. > So be good to yourself. Select what you "like" best and what you > think you can stick to. It is good you have family support. > > I just ask myself, what can I still do? One thing is posting PD info > with Diane Wyshak's help. This was not the retirement I had planned > on, but I do have enough to do. > > You are not alone and I'm sure you will make many online friends. I > will still hold onto the hope I will meet you someday in Sri Lanka. > Thank you for your kind invitation. In the meantime, don't hesitate > to contact me and keep the List up to date on how you are doing. > > Ray > > Rayilyn Brown > Director AZNPF > Arizona Chapter National Parkinson Foundation [log in to unmask] > > ---------------------------------------------------------------------- > 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