I have written a few articles of my diagnosis of Parkinson’s disease (PD), and the politics involved. I would like to write more, but I keep pretty busy and my hands just don’t work well enough anymore to do much typing. This story written about a special lady, Mrs. Shaky, my wife who also has PD. No it is not coincidence; we met two years ago at a PD Conference in Washington DC.

 

Anyone who known’s her and her story has to wonder how she gets out of bed every morning and goes out into the world and functions at any level. I am amazed at this wonderful person, how she has handled the adversity, and I want to share it with others.

 

Her PD is a rare kind of genetic disease, which is only found in approx 5% of all PD patients. Her Mother, Brother, Grandmother, and Aunt all had PD and have since passed on, not from the PD, but with it. At least on of her three children will likely to be affected as well. Her only other sibling, a brother died at 28 of testicular cancer caused by exposure to Agent Orange from Viet Nam. Her father died in his fifties of Heart disease. She has said that the hardest thing that she has ever had to do is tell her mother that her second son had died.

 

When I met her she was tending to her mothers affairs, who was in Hospice living out her final days, in April 2005. Her mother had PD and Alzheimer’s.

 

I never met Rosemary, her mother, but I know of the love her daughter had for her, and the kind, thoughtful lady Rosemary was. I could only laugh when she told me her mothers’ final wish was to be cremated, and her ashes spread at an Este Lauder counter when they were giving a free gift. Her ashes remain in our closet, but one day she will get her final wish.

 

When her first birthday came after she had passed on, my wife, teary eyed, told me how on her final birthday at the nursing home, she celebrated with Mogan David wine and chocolate cake, with the other residents, using tippy cups. That night I came home with Mogan David wine, chocolate cake, and tippy cups. And we celebrated Rosemary’s birthday.

 

A few weeks ago, on her mothers second birthday since her passing, and my wife and I on a cruise, I told the materdee in the dinning room, the story, and asked if he could do something. Soon several of the wait staff came to the table with a piece of cheesecake and a candle and sang happy birthday to Rosemary.

 

She talks fondly of her mother, and when ever mothers day comes around, or she sees a mother and daughter holding hand and laughing, is all I can do is hold her until the tears go away.

 

Below is an exert from a story she recently about the people who had influenced her.

 

I Love my wife more than she will ever know.

 

 

Without a doubt the most influential person in my life was my mother who passed away in April of 2005 with Alzheimer’s and Parkinson disease. She never wavered in her love for me.  My extended family has several individuals with Parkinson’s (it is as if the lifeguard took a lunch break when our gene pool was assembled) Mom lost both of her other children to disease.  Watching her endure the unspeakable heartbreak of losing two children was almost more than I could bear.

I had the honor to be with her as she left this world I wrote the following in a journal the night before she died:

 

"I sit in the quiet of the Hospice room, my mother dying of the disease that is also robbing me of my independence, clarity of thought and physical abilities. To see her struggle with every breath, muscles paralyzed while her limbs shake uncontrollably seems too cruel a way to die.

        I look into the very first set of eyes that met me as I entered this world. The very eyes that have never made me feel a failure or shame but have only encouraged me and loved me. The very same eyes that have seen both her sons laid to rest.  

I am planning to donate her brain to study of Parkinson's disease.  To discuss the details at this time seem cruel and morbid.  Yet we both would stop at nothing to find the cure to this insidious curse.   I touch her head and hope that science appreciates the gift that she is giving them. 

My blessing is she has never known of my diagnosis. I could spare her that. 

 

 

 

Mom I miss you more than I can say, I love you more than you will ever know, and I still admire you more each day.