support, perspective, & resources for
YOUNG ONSET PARKINSON'S DISEASE care partners
My name is Chaitanya Puri. My husband was diagnosed with Parkinson's disease in 2012 at the age of 38. For years, I dealt with the diagnosis on my own, in my own way, and felt basically lost the whole time. I thought at times, okay, I have it all together, I can do this, but when push came to shove, I broke down.
I looked for support, a group or social media forum to help me figure things out. I was looking for a place where I could vent if I had to, get advice if I needed it, or just show up and feel like others related to me and I didn't have to feel alone anymore.
I went to a local support group (with my husband) whose members were more of the typical age of Parkinson's. We saw our future and it wasn't pleasant. It wasn't comfortable or relatable to the stage we were in at that time.
I joined a Facebook forum for young onset PD in my area that was primarily for the folks who had the diagnosis. 99.9% of the topics were centered around the actual disease, not how young spouses are dealing with it.
I reached out to a local women's support group, knowing full well that it was older women, some of whom were widowed. I figured, well, that's the best I can find, so why not. Maybe these ladies could even take me under their wings and show me the way. No one got back to me.
Okay, I thought, this is crazy. How is there nothing for young spouses when about 10%-20% of those diagnosed with Parkinson’s disease each year are under age 50!?! I continued to search and kept reaching the same conclusion...I need people who are walking the walk and talking the talk, just as I am. People who are going through the same issues, ups and downs, in marriage and parenting. I needed a group that I can feel safe when I need to rant or lift me up when I feel like I just can't do it anymore. I needed a place that I can go to share my story and hear others so I no longer feel alone. Out of options, I decided to create one.
Professionally, I was trained and practice as a family medicine physician prior to my husband's diagnosis which came just after our third child was born. At that moment, and solidified in the following weeks of raising three small children and supporting my husband who had just been given this ominous diagnosis, I knew that returning to clinical practice was not in the cards. I felt a strong pull to turn my time and energy towards being present for my family full-time. Sacrifices were made and I never regret that decision.
Given my medical background, I believe in the power of education and staying informed about Parkinson's disease. The content and resources listed on this website are for informational purposes only and any medical advice should be obtained from your healthcare team.
Chaitanya and Vivek live in northern VA and are parents to 3 smart and funny kids.
In our spare time...wait, what spare time?