Parkinson's Disease : "Stay positive. Be your own advocate"

Hello Bev, thank you for agreeing to share your experiences with Carenity.

First of all, could you tell us more about yourself?

I was a straight A student but turned down a full scholarship to a top university because I preferred to have fun instead. I was married at 21 and widowed by age 23. I remarried at 25 to a wonderful man who had two grown children almost my age. I have no children of my own. We retired when I was 31 and spent 16 years traveling around the USA & Canada in a recreational vehicle. I enjoy seeing the beauty of nature. If we stayed somewhere long enough, I’d get a part-time job, mostly for the social aspect and some extra spending money. It was at one of these jobs where I noticed something was wrong. I’ve been married to the same wonderful man for 37 years.

You have Parkinson’s Disease. At what age were you diagnosed? What were the first manifestations of the disease? What prompted you to seek help?

I was diagnosed with Parkinson's Disease at age 47, however I had been going to see various doctors for 8 years as my strange symptoms progressed. As far back as I can remember, I had a slight tremor in my right hand whenever I was trying to do something quite intricate like threading a needle. I thought it was normal. The thing that sent me to a doctor was pain in my upper back in the area between my right shoulder blade and spine. And then one day, at work, I couldn’t double click my computer mouse with my right hand.

What symptoms did you experience at the time? How did you react?

By the time I got diagnosed, I was very advanced, mostly on my right side. I’m right-handed but did most things left-handed. I needed help cutting food into bite size pieces, I needed help getting dressed and getting up from a chair. My neck was frozen in a straight forward position. My entire right leg dragged when I walked and I moved very slowly. I did not have the typical resting tremor. My right hand only shook when I was using it. I was weeks away from being in a wheelchair. How did I react?? I HUGGED the neurologist, Dr Zonis, when it was confirmed that I had Parkinson’s! He prescribed carbi/levodopa and 5 pills later, I could move again!! I was so happy.

How did the disease evolve?

Even today, 15 years after being diagnosed, I am still doing better than I was the day before I shuffled into Dr Zonis’ office. I had DBS surgery in 2012 and now it’s 10 years later and I don’t take any Parkinson’s medications.

What is the impact of Parkinson’s on your personal and professional life?

My professional life ended years before diagnosis. Most of the work required manual dexterity and mine was gone. I couldn’t type, count money (I worked in a lot of banks) and my handwriting was illegible. However, those part-time jobs kept me eligible for Social Security Disability, without which, I’d be uninsurable. As for my personal life, other than my speech is now slurred, I don’t feel like I am affected at all. I still enjoy my life.

What are your treatments? Are you satisfied with it?

The plain carbi/levodopa worked great in the beginning but then my doctor kept adding extras like dopamine agonists (which caused OCD problems) and other formulations of carbi/levodopa (which caused cognitive impairment). That’s when I had enough of the medication side effects and had Bilateral subthalamic nucleus deep brain stimulation (STN DBS). I am thrilled with MY results and would do it again if needed.

What were the reactions of your family and friends when you were diagnosed? How did they react to it and were they supportive of you all the way?

No one seemed surprised at my diagnosis, heck even I really wasn’t surprised. My Dad had Parkinson’s and I saw similar symptoms in his short journey with it (he was diagnosed at age 82 and died 3 years later.) But since I’d already been told by several neurologists (including my Dad’s) that my symptoms were NOT Parkinson’s, I was looking for something else. My friends have always been supportive, but most are 20+ years older than me.

You are the creator of the blog – “Parkinson’s Humor”. What were your reasons for starting this blog? How did people respond to it?

Several years after being diagnosed, I attended a large 2-day PD seminar. Someone mentioned Parkinson’s chat rooms, where us Parkies could interact online 24-hours a day, worldwide. I joined one and would make others laugh at my “life with PD” stories and my ability to decipher medical jargon into words a five-year-old could understand. Karyn from Australia suggested I start a blog of my stories and with her help, I created "Parkinson's Humor". Within a few weeks, I had readers from around the world. Now I’m getting close to a million page views! Later I self-published a paperback book of some of the blog stories for people who didn’t use computers.  

As an ambassador for the national Parkinson’s disease support group – “Parkinson’s & Movement Disorder Alliance”, what are your thoughts on the ability of support groups (online and offline) to help survivors elevate their quality of life?

Before COVID-19 ended the in-person support group meetings, we had a local thriving support group that met once a month. Then online became the only choice people had, and for those who weren’t computer savvy, they were lost. I no longer have a Zoom compatible computer, so I can’t do the Zoom meetings either. (I’m filling this questionnaire out at the local library) I know that people prefer meeting in person.

How important is patient feedback for the development of medicine considering your role on the “Pharmaceutical Patient Advisory Boards”? Has it gotten more difficult for you to enjoy public speaking after the early onset of Parkinson’s?

I was part of an Advisory Board for one year, and that was four years ago. And to be honest, they were looking for marketing help, not what we as patients want. I no longer speak in public, with my speech problems, it’s just too exhausting to try to project my voice and speak clearly. However, I’m always available to text, chat on social media or via email. I can still type! 

What are your plans for the future?

Enjoy life! I laugh every day. I’m active. I try not to worry about next week, month or year because I could get run over by a truck walking to my mailbox today.

What advice would you give to members who are also affected by Parkinson’s Disease? 

Stay positive. Be your own advocate. Seek out others with PD, they have great ideas. And don’t be afraid to change doctors if the one you have isn’t listening to YOU.

Any last words? 

My stepson died of a heart attack in 2009. My stepdaughter is fighting lung cancer. My grandson has two autoimmune diseases. EVERYONE is battling something, so enjoy every day and be nice to each other. Keep laughing and have a Happy Parky Day! 

A big thank you to Bev for her testimony!  

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Take care of yourself!