Yes! You Have Parkinson's

It's been 11 DAYS, since my neurologist casually said, “Yes you have Parkinson's, but I already told you that the last time” NO, YOU DIDN'T" I think in my head. You said I had some things that suggested Parkinson's but not others that you would have expected. Do you hear the anger? I think I'm in that stage. Yep, Denial, been there done that, Anger, and then something like negotiating, and acceptance.  Some days I spin through 3 or 4 stages one after the other.

“Let's do a DatSCAN.” She says. “It can tell us for sure.”

Do you know your exact diagnosis date?  I have read that many people with Parkinson's do.  It wasn't a surprise, I knew beforehand, for 2 years I had struggled with a growing rigidity, fatigue, weakening hands and a strange soft voice.  I had even practiced, in the middle of the night,  hearing the diagnosis in my head so I wouldn't be too shocked.  But I hoped. I had a stiff neck and shoulder problem for years so I could be stiff from that and I had a mild heart attack 2 months before my Parkinson's diagnosis so the weakness and fatigue could be from that......

Hello welcome to my blog! I'm thinking if you have found yourself here it is either you are my friend already or part of the Parkinson's community and will hopefully become my friend.

This blog will be coordinated and added to by my dear friend and art mischief maker Corrine Bayraktaroglu.  You will love getting to know her, she is FUN. She has blessed me with this gift, because I am totally not a computer person.  She is.  She loves me and is walking this walk with me.

 

A bit of my twisty Background: Thirty years ago, my mom was told she had Parkinson's.  There was no DatSCAN to prove it but she struggled with it and the increasing medications for 10 years.  Her last 3 years we lived together and I was her care partner. I was a homeschooling mom, living with my rocket science husband and our 2 little boys in California.  My elfin dad had died of a heart attack when I was 16 and mom had been on her own in Illinois for many years. She loved her home town, writing, cooking, and interviewing people.  She had been the first woman editor of the local paper and knew many people.  But it had got to the point when she needed to be with us.  We had tried helpers to live with her and going back and forth as much as I could, but it was time.  It was a hard time for all of us. So, I came to Parkinson's with an image of my mom with Parkinson's. It scares me. I have taken to telling myself “I am not my mom; we are all different.”  I have an amazing, supportive husband- “Steven, I adore you and appreciate you immensely” and 2 grown up sons, Kelsey and Brendon, a daughter-in-law who smiles at me, Zyn, and 2 darling little perpetual motion, granddaughters, Shiloh and Emberlee. We are all living together in a Shoe. Well not really though sometimes it feels like it.

So welcome to my world as I try to make sense of this new time in my life.

​Footnotes from Corrine: I kept hoping that all the symptoms were because of strokes and heart attack which were bad enough BUT when Nancy told me it was official  I had quite a few nasty things to say to this intruder in my friends life, things that would make yer toes curl and your milk curdle. How do I support my friend? What do I say? What do I ask?  What hell and torment can I possibly understand my dear friend is going through. So I went to the  Michael J.Fox Foundation and watched some interviews. What struck me was that he came to a point where he had to accept that Parkinson's was a part of who he is.  All I could think of was how Parkinsons was now a part of who Nancy is like an unwanted alter ego and somehow that alter ego became Snarky PARKY and a way for me to ask Nancy, "where the hell is PARKY today?"  Well some days PARKY is lurking in the background and other times PARKY is out in full force being a right pain in the arse.