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YOPN insights

What would you share about your experiences with YOPN with others living with YOPD?

05/28/2025 3:20 PM | Anonymous

In April we asked our members, 'What would you share about your experiences with YOPN with others living with YOPD?'.

Here are some of the responses.

What would you share about your experience with YOPN with others living with YOPD?
In my early years after diagnosis, a gray cloud came over my head. However, reading books from M.J. Fox and my faith in God gave me hope. Almost immediately I started physical therapy and after reading the benefits of diet and exercise, I started a very strict diet and a exercise routine that works for me. I was diagnosed at 48. I'm now 53 and in a lot of medications, but I continue to push forward despite my frequent bad days. I preach on Sundays and work in a little co-op which I love. Every moment that I spend with those people, I try to be as jovial as I can. The Spirit of God that is in me makes it happen. I pray that one day a cure will be found and we can be released from this hard disease. Until then, we must continue to move forward. Lean on God, lean on your family, lean on your good friends. Make your days better by socializing with people. It's rejuvenating. May God be with you and heal you. Don't stop fighting!

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What would you share about your experience with YOPN with others living with YOPD?
"It is possible YOPD may be fundamentally different than PD. Most all of the research is based on men. most all medications are dosed for men.

We are sailing in uncharted waters. As I see it, having been diagnosed 22 years ago at the age of 47, there are two ends of Parkinson's. On one end, research is really important. On the other end, care is really important.
In between the two ends is where most of us exist. The research end has a lot of catching up to do but the care and doesn't even know we exist. 
Hospitals and rehab centers are wholly unprepared for this new generation of Parkinson's patients. I was in rehab two years ago and was the female PD patient  they had ever seen.
There is  a presumption of caregiver. Not everyone has a care partner, family member or a community member dedicated to their care. Many of us are our own caregivers. When you are young and live on your own with Parkinson's disease, it's a much higher risk disease. We need to be considered and in the conversation.
When you are still relatively young, but have advancing Parkinson's disease there is no age or stage appropriate place to live with the right amount of assistance. The goals and models of assisted living facilities and senior living facilities are not congruent with the goals of Parkinson's patients who are fighting, not supporting, going downhill. 
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What would you share about your experience with YOPN with others living with YOPD?
"I am a resident of India diagnosed with Parkinson in 2022. In my peer group YOPD used to be an alien term and Parkinson is considered as an old man disease and is genetic in nature.
With no knowledge about YOPD and seeing the condition of Parkinson people life had become very depressive.
I found out about YOPN through Instagram. Was delighted to find about YOPD communities webinars members insights. It totally changed the way I was looking at my life. I found hope and strength and inspiration through YOPN.
It helped me understand the difference between YOPD and PD and I could explain it to my family as well.
In fact YOPN is the platform which published my YOPD story in the blog section which helped me declaring to the people around me about my condition.
My advice to people with YOPD is that stay connected online or offline and share your stories diagnosis medications and spread awareness. Reach out and remember you are not alone."

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