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Linda For sure we have to in the end be the 'decider' when it comes to our treatment. To that end getting as much info as possible and benefiting from the experiences of others is essential. I can almost assure you that if you have a question, someone on the List will answer you. At least being in Alaska doesn't prevent the exchange of information. Nor does being housebound. However, the doctor situation is more difficult. I didn't have a really good neurologist until two years ago. If there is anything I can do to help, don't hesitate to let me know. -----Original Message----- From: Linda Sent: Saturday, October 06, 2012 12:44 AM To: [log in to unmask] Subject: Re: back, neck and leg pain Thank you again for very pertinent articles. It is so encouraging to gain more understanding. I find I really need to have a strong sense of what is right for me so that I don't get confused by different takes on my issues from the health profession. I live in Alaska about 150 miles from Anchorage so we have far more generalists than specialists. ----- Original Message ----- From: "Rayilyn Brown" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, October 05, 2012 10:37 AM Subject: Re: back, neck and leg pain > thank you, Linda, for making my day with your kind comments. Your support > gives me the strength to carry on. > > Ray > > -----Original Message----- > From: Linda > Sent: Friday, October 05, 2012 12:18 AM > To: [log in to unmask] > Subject: Re: back, neck and leg pain > > Thanks for your input, Ray. And many, many thanks for the articles you > post. You are the best source of information on this disease I have found > anywhere. So glad I found you and this list! Linda > ----- Original Message ----- > From: "Rayilyn Brown" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Thursday, October 04, 2012 10:22 PM > Subject: Re: back, neck and leg pain > > >> Linda >> >> I have had PD 16 years and can't remember when my pain started, but it >> has >> gotten bad this last year. My right hip area hurts when I walk >> probably >> because my left leg is drawn up and I'm on my left toes. When I sit or >> don't move I'm OK, so I'm convinced it is PD; also it varies, I never >> know just what it will be like. I get leg pain when I move in bed. >> >> In my opinion, I think you are wise to be wary of invasive procedures. It >> sounds like you have a number of things going on at once. >> >> I think I'm learning what it is like to turn to stone. >> >> Ray >> >> -----Original Message----- >> From: Linda >> Sent: Thursday, October 04, 2012 3:09 PM >> To: [log in to unmask] >> Subject: back, neck and leg pain >> >> I would appreciate some input from other people with Parkinson's in >> regard >> to the issue of pain. I have been told that I have degenerative disk >> disease with a narrowing of the spinal column in the lumbar area. I was >> also told that my left knee was bone on bone in 2006 and would need a >> replacement sometime in the future. I was diagnosed with fibromyalgia in >> 1997's and diagnosed with Parkinson's disease in May of 2010. >> >> It seems like there are so many factors that I am very hesitant to do or >> have done any invasive measures such as knee replacement or back surgery >> because I feel like it will not resolve enough of the pain issues to be >> worth the risk and the attempted rehabilitation. The neurologist I have >> just been seeing recently made the statement that the pain would not be >> from Parkinson's. I'm not sure if she thinks that pain is not a part of >> the disease or that she feels that the pain I described wouldn't be from >> the disease. My current back pain appeared to become acute after swimming >> a few days in a row. It felt very good in the water to twist and turn my >> body but after that, movement became more difficult than my pain level >> increased radically. >> >> It was very helpful to be on this list and receive the information about >> briefings through the Parkinson's organization. I was able to get the >> briefing on Parkinson's and pain and found that most informative. I plan >> to be reviewing many of those articles. The recent stem cell article was >> also very interesting. >> >> I would appreciate any input from others as to their experiences and >> thoughts on the little bit of information that I have given here. >> >> Thanks, Linda >> >> ---------------------------------------------------------------------- >> 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 ---------------------------------------------------------------------- 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