PD Avengers Member Spotlight
Ellen Bookman
When were you/loved one first diagnosed?
The journey began January 29, 2018. I was 52. .
Can you tell the story of your path to diagnosis?
Lee, my husband of 33 years, and I had just started to kayak. We both loved everything about the experience and would try to as often as possible. I started to notice that my left foot was bothering me. If asked, I would have said that “it felt crampy. My doctor told me to cut down on Splenda.”
I walked out and thought nothing of it - for three years.
What I thought was nothing turned out to be dystonia. I also had other issues all emanating on my left side. Nobody put two and two together until a random yearly physical exam with my GP. I, once again, tried to explain my foot issue. He asked me to make an appointment with the neurologist in the practice. .
I made the appointment and met a young, smart and empathetic doctor who delicately told us that I had Parkinson’s. She wanted me to get a second opinion. I ended up at one of the country’s top Neurology Centers. It didn’t matter because this doctor did not have a shred of empathy. Lee and I knew we had made a big mistake.
Why did you want to become a PD Avenger?
Larry Gifford and I met officially when I was a guest on “When Life Gives You Parkinson’s.” He asked thought provoking questions about my YOPD diagnosis. Because of Larry, I was able to speak about the diagnosis. I got my voice back. When Larry told me about PD Avengers, I jumped in with both feet. I knew this was going to be big,
What do you see is your superpower as a PD Avenger?
I am a writer by trade and always use definitions to make a point. The definition states - your unique force or contribution – something that gets the best out of you.
My superpower is the ability to put people at ease, so they, too, can get their voice back.
What is something you wish people knew about Parkinson’s Disease?
Mental wellness is as important as the medical management of the disease. It was never mentioned to me nor did she tell me that stress and anxiety exacerbate symptoms. Had the doctor told me this, I would have immediately sought treatment. Instead, I sat on the couch anxious and depressed for three months.
What do you like to do for fun?
I decided that I was going to only do those things that give me joy. My dogs. I am training for my 2nd horse show - number one on my bucket list. I started playing pickleball. I box in a Parkinson’s group with people who get me. Travel. Concerts. The outdoors.
What advice would you give to someone who is newly diagnosed?
Only go to reputable Parkinson’s websites.
Advocate for yourself.
If you don’t click with your doctor, find a new one.
Ask questions.
Take your Mental Wellness seriously.
What do you wish you were told when you were diagnosed?
I wish she would have given me more than a pamphlet
I wish she would have told me about the importance of taking care of my mental wellness.
I wish I was told it will be alright. We will work through this together.
Is there anything else you would like to share with our community?
Learn about the disease but know that you will not have all of the symptoms. Let knowledge guide you and only from reputable resources. Don’t freak out. Get involved. Help others. Advocate for yourself. Become a mentor.
Do you have any PD hacks to share?
Allow yourself to have a bad day, Then, get up.
Exercise. Exercise. Exercise.
Do things you love.
Understand and acknowledge the role your care partner plays in your life.
