Musings on Living a Life with Parkinson’s

“When you arise in the morning, think of what a precious privilege it is to be alive – to breathe, to think, to enjoy, to love.”   — Marcus Aurelius

Where has the time gone?  I was answering a questionaire today for a research study, and one of the questions was to rate my Parkinson’s.  Is it Mild, Moderate, Severe, etc.?  I had to stop and think about it.  Most of the time, my symptoms are very mild because of medication.  I am very fortunate and thankful that that is the case.  But here it is, 9+ years since my symptoms became noticeable and almost 8 years since my diagnosis.  Where do I put myself along the PD spectrum?  I opted for moderate because of the length of time that I have been living with PD.

It seems like forever.  It is hard to remember what life was like before PD.  I also don’t remember life BK (before kids).  Funny how our minds work.  The first few years, I was in denial.   But that gradually shifted into acceptance,  and my life changed.  It took a long time before I could tell anyone, and it is still not easy.  At first, I didn’t know much about Parkinsons. My kids used to call themselves “The experts who know everything” in videotaped skits.  Because of the compulsiveness that comes with having PD, therefore reading waaaaaaaay too much on the internet, I became “The expert who knows everything about PD”.  I imagine that became the case for many of you living with Parkinson’s.  The more I learned, the more I appreciated the researchers who are working to find a cure for us and how important it is for all of us to participate in studies such as the one I mentioned above.   More importantly, I learned what “magic cures” to stay away from.  Yes, there are still people out there trying to sell us snake oil.

I BECAME “THE EXPERT WHO KNOWS EVERYTHING ABOUT PD”

We say to others that we have PD, but we are not controlled by it.  Wrong!!!!!!!  Of course we are.  As much as we try to believe otherwise, somehow our daily lives are controlled by Parkinson’s.  Think about all of the pills you have to take, the daily exercise classes so you can keep moving, lack of sleep, forgetfulness.

But that doesn’t mean you can’t live well with Parkinson’s.  After all, with medication, many of us live relatively “normal” lives, raising our children, working, traveling and enjoying life.  And a bonus is getting to meet wonderful people in the PD community who have become close friends, because of our common bond.

So yes,  I have had Parkinson’s for more years than I care to think about.  It reminds me every day that it is there.  However,  I can still look forward to all of the joys that life has to offer – my husband and family, friends, travel, and most importantly, my 3 wonderful, amazing grandchildren.  Isn’t that what life is all about?

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