A Parkinson’s disease story – My Grandmother’s Essence
Guest article by Lynette Juul
In a waiting room recently, I picked up the latest issue of Neurology Now. After reading the cover story about Glen Campbell’s battle with Alzheimer’s disease, I became captivated by Susannah Gora’s article, “Showing Up as Michael J. Fox,” about the actor’s life with Parkinson’s disease.
What impressed me most was a quote by Mr. Fox, describing how he wants his character to be portrayed in his new TV series. “Whatever you do, write me joy, because I play joy well. Not that I can’t experience sadness or desire, or whatever. I’m just most at home in joy.”
Wow! The positivity of his attitude in dealing with a cognitively impairing disease is inspiring indeed!
My own experience with Parkinson’s disease (PD) deals with my Grandmother, Rose Ancillotti. An outspoken woman with a vibrant personality, Grandma was initially diagnosed with PD in her early seventies. Her symptoms developed gradually, and for a while, Grandma was as outspoken and vibrant as always! Except that her hands and head began to slightly shake all the time. And her handwriting grew increasingly difficult to decipher.
By the time Grandma was eighty-five, her Parkinson’s symptoms had become a safety concern, so she hired a part-time aide to accompany her wherever she went. Happily, one of those places was my wedding, where Grandma, dressed in her finest, garnered far more attention than I!
Perhaps the most beautiful part of the day was our dance together. I chose the song, “The Rose,” not only because it is Grandma’s name, but also because she had always been my best friend, often the only light at the end of a very dark tunnel.
Five years later, my mother planned a ninetieth birthday party for Grandma. At this point, she was still living in her own apartment, only now with a full-time aide to ensure her safety. Although Grandma’s PD had reached a much more severe level, her charismatic essence remained quite strong.
The celebration was wonderful, and Grandma beamed among relatives and friends, many of whom she hadn’t seen in years (probably since my wedding!). She was definitely the belle of the ball, her smile lighting up the room. I will never forget the site of my nephew, Patrick, and my son, Peter, both three years old, sitting beside Grandma eagerly waiting for her to cut the cake!
Watching the children interact with Grandma was an absolute delight! At their age, they could care less that Granny shook all the time, forgot simple things, and needed help walking everywhere. They simply enjoyed having her around! The feeling was quite mutual.
When Grandma was ninety-one, another great-grandchild entered her life when my niece, Jaclyn, was born. Although her PD symptoms had become quite debilitating by this time, holding a new life seemed to bring a renewed joy to Grandma’s own life. Here essence was very clearly visible.
All that changed a year later when my family faced an excruciatingly painful decision. Now a constant fall risk, even WITH a full-time aide to assist her in ambulating, Grandma’s safety could not be ensured at home any longer. My mother, sister, and I visited several nearby skilled nursing facilities, and chose one that we thought would provide the best overall care for Grandma.
My grandmother was then permanently placed in a nursing home.
The next two years were truly tragic, as my once vibrant and outspoken grandmother turned into a mere shell of a human being. She couldn’t talk, walk, or even eat. During our visits, she didn’t seem to know we were even there. And the children didn’t want to visit their granny that way.
Finally, at the age of ninety-four, Grandma’s strong heart stopped beating. She was at peace, her long battle with Parkinson’s disease over.
Ten years later, my family continues to take great comfort in Grandma’s essence, which is quite clearly present at every holiday or family function. I treasure every single crooked card and note that she ever wrote me and find great joy in the many photographs of her and the children that she so adored.
As a family, we choose to embrace the wonderful times we had with our ever-blooming Rose, remembering her true essence rather than her illness.
For a helpful and comprehensive listing of websites that provide additional information about various cognitive impairments, including Alzheimer’s and Parkinson’s diseases, please go to the Resource Central section of Neurology Now. [TCV Update 11/5/2020 URL to article no longer available.]
Lynette Wilson Juul, MS is both a family and professional caregiver. For twenty-five years, she assisted people with disabilities. During the last decade, she has helped families who have a memory impaired loved one, including her own father-in-law, Ole Juul, who has dementia. Although Lynette lives in New York with her teenage son, Peter, they often travel to the Bay Area of California, where Ole and Peter’s Dad reside, to help with his care.
Lynette and her son Peter were featured on The Caregiver’s Voice.
Thank you for sharing your love story. My father has PD and is sure he is going to beat it. I love and admire his attitude. My step-mother tries to let him know that is not going to happen because she wants him to be prepared and not disappointed. I told her that the human spirit can overcome all kinds of adversity and you never know what complete belief in recovery can do! Look at Michael J Fox…hasn’t he beaten so many odds already? No one can say the highest and best will not happen. The cure could be tomorrow.
I agree. We never know what miracles reside inside the human psyche, combined with a willing spirit. At the same time, your step-mother is living with her husband (your father) day-to-day and maybe this is the way she’s coping with accepting loss. Still, KUDOS to your father…I know another man in the UK who insists he will fight it. It’s people’s spirits like these that uplift us all with hope.
I truly enjoyed this story it really inspired me.
A beautiful article. I live through this story with what I have experienced for the last 9 years with Parkinson’s in my loved one of 50 years. I have slowly seen my love one go from just having movement problems to 4 years into it started having cognition and dementia. Now after a hospital stay she can not walk without assistance and very rearely makes sense with what she is saying. Now she has a broken ankle and foot is in a boot. But, she still smiles and laughs a little. She still tells me she loves me before going to bed but I’m never sure she knows who I am. i pray and pretend thst she does. Like I said, I’m living this journey Lynette has already been through and it breaks my heart. I stick to our marriage vows and will always be by her side through the good and bad.
I love Her so much
WOW, thank YOU for sharing this. Your commitment and love for your beloved Marie is truly an inspiration, Don.
Your beautiful tribute to your wonderful Grandmother helps us all feel her “essence”. Thank you for sharing your memories and putting additional light on PD.
Thank you so much, Brenda. The article is a beautiful remembrance of a wonderful woman, my Grandmother. I hope it brings some hope, comfort, and a smile to others who live with Parkinson’s Disease.