Reply to Worried about my 70 yo single neighbor diagnosed with Parkinson’s

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[quote=Anonymous]
I was diagnosed with Parkinsons about 4 years ago.  Here are my thoughts:

- you sound like a good person who cares about others.  As you read my comments, please keep in mind that I recognize that in you, and I'm sure your friend appreciates you for that.

- Parkinsons varies greatly in course and presentation. Don't make assumptions about her Parkinsons based on what may be seen in the media.

- she may have Parkinsons, but she is not a child. Her decisions are her own, and she almost certainly has a better understanding of the disease and her specific presentation than you do.

- based on the way Parkinsons is presented in the media and perceived in our culture, it is presumed that one is either a Parkinsons Warrior (lobbying and fundraising all the time, posting on social media everyday about all the work done to manage it and how much it sucks) or closeted and in denial.  In reality, many of us are just living our best lives. We go to rock concerts and work full time and ride our bikes with friends and travel internationally.  And we do that for many years after diagnosis.  We just have a lot of extra pills and doctors appointments and PT exercises to balance with everything else.  But we don't broadcast that - we have more interesting things to discuss.

- "she is dragging her feet in scheduling the brain scan that’s supposed to confirm the diagnosis" - that brain scan is a DAT scan.  It is expensive, takes several hours, and is not needed to confirm the diagnosis except in edge cases.  If the pills work well and immediately, that confirms the diagnosis.

- there is currently no medication that slows the progression (exercise and a high general level of activity are the only things that do).  All the pills and other options do is mitigate the symptoms, and everything has side effects.  Some Parkinsons patients prefer not to medicate at all as their quality of life is better without. Others do take medication, but it's a matter of preference as to how much time you want to spend experimenting with different things and meeting with doctors to to optimize and reoptimize your medications. She has probably chosen the balance that works for her.

- based on both my experience and my observations, those that continue to live their normal lives and don't let Parkinsons and a fear of the future dominate their lives do best and have the slowest progression.  Of course, there may be some selection bias there. But shutting one's life down and anticipating disability seems to fast track one to disability. And a societal assumption that one must shut life down and plan for imminent disability as soon as one is diagnosed doesn't help here.  
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