My new neurologist’s hands are amazingly soft. I feel immediately at ease. Her caring and kindness are apparent through her gentle touch. I know she is accomplished: a professor and a clinic director. I feel hopeful she will solve the mystery of my perplexing symptoms that have been accumulating for almost 20 years. She holds my rough hand gently in hers and slowly rotates my wrist back and forth. She asks me to open and close my hands, tap my feet, touch my nose.
“I suspect that you have juvenile Parkinson’s disease,” she says.
Take our survey to share your Parkinson’s experience and what’s worked for you. Click here to take the survey.
I look at my husband. He clutches my hand in his. Tears form in my eyes. The room spins and seems foggy. I had known for some time my previous diagnosis of dystonia was incorrect. I had not dreamed it would end up being something like this.
“There is genetic testing to confirm it. The testing is expensive and it may not be covered,” she explains.
Her voice reaches me in bits and pieces.
“Progression is slow.”
“May be able to work until my early 50s.”
“It is very individual.”
I feel encouraged by her compassion and her reassurance. Curled up in the passenger seat as my husband drives home, I do some googling on my phone on “juvenile Parkinson’s disease.” I glance at a few pages, then close the browser. Someone else’s experience with juvenile Parkinson’s disease does not have to be my own. I will chart my own course.
There is not much more I wish I knew that day when I was diagnosed with Parkinson’s disease in 2012. I was 33 and had already experienced 19 years of unexplained chronic pain and illness. I have learned so much in that journey. However, I spent most of those years feeling really bad about myself because I couldn’t figure out how to feel better. If I were able to go back in time and I could give my younger self a message, this is what I would say:
1. You are not broken.
Having an illness does not mean you are broken and need to be fixed.
2. Healing is a journey.
Healing can happen even within the experience of having an illness. It is an individual journey.
3. Trust your intuition.
There is so much out there that promises relief: diets, programs, supplements, procedures. Trust your intuition to guide you to what is right for you. This may take some practice to develop this skill.
4. Trying something that doesn’t help is not a failure.
Not everything you try to take care for your body will be right for you. This is not a failure, just an experience on the journey.
5. You do not have to be ashamed of your illness.
There is nothing that you have to be ashamed of. You don’t have to hide from your friends or colleagues.
6. Love yourself.
Self-love is not something that you do, it is an attitude. See yourself in a positive light and try to make your inner dialogue loving instead of critical.
7. There is light in this tunnel.
This is not the experience you wanted for your life. There will be a lot of pain, frustration, sadness and grief. This experience will also give you the opportunity to change, grow and learn.
8. You are amazing.
For every time you get up despite feeling unwell and every time you decide to stay in bed; for every time you laugh and every time you cry, remember that no matter what you are amazing. You are a unique and beautiful individual and you matter.