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Margaret apparently PD is not enough. I thought when I survived ovarian cancer I was " home free". My friend and our "source" Diane Wyshak has both cancer and PD at the same time. this camptocormia sounds like a back problem?? due to 2 bad falls this year I have constant pain - the first fall on my tailbone was excruciating, the 2nd not as bad......I'm just trying to get back to exercising again. what really sets me off is children having horrible diseases - there is no excuse for blocking research that could help them. yes, I watch CNN all day from the sofa so I understand your desire to get your life back. I think the loss of a normal life is the worst thing about PD and we all face it. Seeing photos of my great-nephew's wedding I had to miss made me feel sorry for myself for really the first time in many years. DBS could help you but you are not going to get your life back. but I hear you and agree it stinks! I'll probably get something else. it's too bad these diseases aren't divided up. Ray Rayilyn Brown Director AZNPF Arizona Chapter National Parkinson Foundation [log in to unmask] -------------------------------------------------- From: "Margaret Baker" <[log in to unmask]> Sent: Wednesday, February 11, 2009 8:58 PM To: <[log in to unmask]> Subject: Re: Camptocormia Stinks! > Dear Murray and other bad-luck "parkies" like me with camptocormia, > > How could this happen to such nice people like us. The day before > yesterday I > learned a stinky new word (starts with a "c") and I couldn't believe this > was > happening to me. Wasn't Parkinsons bad enough? > > I am only the second person my movement disorders specialist has seen with > this condition and a roomful of neurological surgeons had never seen it > before. My neurologist is already talking DBS. What are the other > options > that are less invasive but that still work? I have an appointment with a > physical therapist - does that work? How do you deal with the > excruciating > back pain? How do you deal with the loss of a normal life - "shop 'til you > drop" > happens in about 12 and a half minutes. My husband still thinks tnat's > too > long. No more freedom to hop in the car and go where you please. Now I > have a good view of the sidewalk while I fumble with a cane and a handbag > and wait for some good-natured soul to drive me around. I would like to > stand > up straight and look at people's faces - is this possible? Is there > still life after > camptocormia? Laying on the couch all day watching CNN does not count. > > Anxiously waiting for advice, > > Margaret > > ---------------------------------------------------------------------- > 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