At what age were you diagnosed and what was the diagnosis process like?
I was diagnosed with young onset Parkinson’s Disease (YOPD) at age 47. I would describe the process as very confusing, difficult and time-consuming.
I knew something wasn’t right, but the answers were a long time coming.
As my body subtly changed, my movements slowed. Also, my anxiety, fatigue and ability to walk with ease worsened.
My doctor would say, “take a vacation or find a different hobby or interest.”
He prescribed medication but that only made my bad situation worse.
Trying to articulate what was happening to me was a constant challenge, and I kept hearing the same thing: “We can’t find anything wrong.”
My general neurologist diagnosed me with depression.
I felt like I was getting nowhere.
The breakthrough came when I was in the midst of another hospital visit. A doctor visiting a patient in the bed next to mine stopped as they were leaving and asked, “how long have you had that resting tremor?” By that point, it had been a few years. Through that encounter, I learned what a movement disorder specialist is. That chance meeting was a miracle, and after that, I was finally able to get answers.
What has your life been like since your diagnosis?
Life has been a roller coaster of emotional and physical changes, both positive and negative.
What have been some of the most significant challenges you’ve faced living with Parkinson’s?
Some of the most significant challenges I’ve faced are the physical and psychological changes and trying to communicate how I feel to family and friends.
What are some specific actions you’ve taken to overcome these challenges?
To overcome some of the Parkinson’s challenges, I’ve had to learn my limits and then use them as learning tools. For example, because of my tremor, my food regularly shakes off my spoon. I tried using weighted utensils to help control the tremors and that helps. I’ve learned to rest when my body tells me. And I exercise and move even when it takes every bit of energy I have because it helps to relieve pain, anxiety and the stress that being in pain brings. Finally, I’ve learned to ask for help. Some people think asking for help makes you weak. I believe it makes me stronger.
What are some of the most surprising things you’ve learned from living with Parkinson’s?
The biggest surprise is that people don’t understand Parkinson’s. There are so many misconceptions about the disease, and many doctors don’t even understand the struggles or identifiers that come with Parkinson’s. That can make the diagnosis process longer than it should be and much more stressful.
What or who has been your greatest support throughout your journey and why?
The greatest support throughout my journey is the ten million people who live with Parkinson’s on a day to day basis. They have supported and motivated me by allowing me to be their voice, lobbyist and most prominent advocate.
If you could offer advice to others living with Parkinson’s, what would it be?
- Approve of yourself. Love yourself. Remind yourself that you are still smart and can do anything you want within reason. Don’t pay attention to the people who tell you what you can’t do or what would be impossible for you to do now that you have Parkinson’s. Think of the word impossible as – I – M – POSSIBLE. You are. Don’t ever forget it.
- You get to create your reality. Don’t let others shatter your confidence or drive you into isolation – they just don’t understand what you’re going through.
- Practice smiling – it demonstrates confidence and also invites people into your world to ask you about Parkinson’s. Think of it as an opportunity. Use your life with Parkinson’s as a topic of conversation. Not so that you can moan and groan, but so that you can educate others.
- Never give up and always fight back.
What are you most looking forward to now?
I am looking forward to another day of laughing at myself, bridging the gap that exists between those who understand Parkinson’s and those who don’t and living life to the fullest by focusing on the positive.
Where can people find you online?
I am just a message away.
Share Your Challenges and Victories
Each month, we spotlight individuals from our Parkinson’s community who embody living well today – what we call Moments of Victory®.