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Linda, I'm not sure what is available to you in planet Alaska :-).  The 
medical expertise easily available in the states might not be so available 
to  you.  I'd check out the web to see which doctors specialize in movement 
disorders in your state.  I live in Michigan - and it wasn't until Jamie was 
well into his disease that we finally did connect with a movement disorder 
neurologist - medical doctors are not always aware of the difference between 
neurologists and movement disorder specialists.  Also, please consider 
joining a support PD group - people who participate in such groups have a 
better understanding of what is out there for you.
-----------
Mary Ann (CG Jamie 68/28 years with PD, died 11/20/07)


> She lives on planet Alaska. lol.  So far she is being very conscientious 
> about getting lots of input from me as she is working with adjustments to 
> my medications.  I'm hoping she finds a combo that helps more than meds 
> have, thus far.
>
> Speaking of a movement disorders specialist, do you or anyone else on the 
> list have one who is particularly good at working out exercise that 
> improves rather than worsens my situation?  I know exercise is apowerful 
> tool but it seems to backfire on me all too frequently.
>
> Linda
> ----- Original Message ----- 
> From: "Mary Ann Ryan" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Friday, October 05, 2012 5:26 AM
> Subject: Re: back, neck and leg pain
>
>
>> Linda, I don't know what planet your neurologist lives on, but pain is 
>> definitely part of the Parkinson's Disease profile.  My husband suffered 
>> from terrible body aches long before his disease became advanced.  My 
>> cousin also has PD and told me, "No one ever prepares you for the amount 
>> of pain you will have to suffer with PD."  Over and over again on this 
>> list and the CARE list, a list for PD caregivers, the challenges involved 
>> in pain management have been discussed.
>>
>> I hope that you are seeing a movement disorder specialist.  Not all 
>> neurologists can deal effectively with PD.
>> ------------
>> Mary Ann (CG Jamie 68/28 with PD, died 11/20/07)
>>
>>
>>
>>
>>>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
>>>
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