When one is blindsided with a diagnosis of Parkinson’s disease, it is so easy to feel shocked, overwhelmed, in denial, numb, or a combination of them all. For me, it took me days to make any sense of the diagnosis. While I was relieved that my Parkinson’s-like symptoms were not due to a brain tumor, as I had predicted (with my very limited and non-existent medical training), I still remember the fright of hearing, “You have been diagnosed with Parkinson’s disease.”
Before I had a better understanding of Parkinson’s, I used to think that my symptoms began at the age of 17, but now, I am pretty certain that my early childhood eye and ear problems must have been connected, somehow. At the age of 17, I was the most athletic I had ever been, as a member of my high school tennis team. I was in tiptop shape, or so I thought.
My first really noticeable symptom made an appearance as a resting tremor in my left foot. I attributed the tremor to stress or tension that any 17 year old goes through. Slowly, over time, other symptoms like my stooped posture, dragging my foot, speaking softly, and not blinking as often as usual, all came about.
It took 6 years and at least 9 different doctors to get my diagnosis. I was so relieved to be able to put a name with my condition. So much of my life, by the age of 23, was undetermined, because I was unable to focus on my future, without knowing what I was facing and how it might progress. With a non-fatal diagnosis, I could create a plan of how I was going to get better and move on with my life.
I turned 50 last year. I have had Parkinson’s for over 30 years and it has taught me so much. This disease has led me in many directions that I would have never imagined, most of it good. The community of people with this illness is a very special one, and one that has brought me many friends. I have met so many amazing and inspirational people from around the world. I encourage you to do the same.
Don’t stop learning
Here are a few things that I would suggest a newly diagnosed patient consider:
- Information and knowledge will add to your confidence level as you understand more about your illness.
- Create a strong footing with a plan to remain active, healthy, and positive.
- Don’t go down the path of negativity, for that can only lead to bringing you and those around you to an unproductive place.
- Keep moving forward in your life.
- As your illness changes, so might other aspects of your life.
- You will have to learn to be flexible and to compromise.
- Build a network.
- Build a care and wellness team.
- Know your limits—but keep pushing them as long as you remain safe.
- Keep building relationships and staying social.
- Don’t stop learning.