My PD Story

I was diagnosed with Parkinson’s disease (PD) in October 2023, and so far, I’ve been able to manage independently. I’ve been able to do my activities of daily living independently. I manage my finances and do my own shopping. I use my computer and go on Zoom meetings. I have a dog, and the great thing about having a dog is it forces me to get out and walk, whether I want to or not. I get a little behind on mail since I was diagnosed, and my housekeeping is not the same as it used to be, but I get everything I need to done.

One of the first things I did when I was diagnosed with Parkinson’s was to call around looking for support groups. Through that process, I found the Parkinson’s Foundation. Their guides, such as the Hospital Safety Guide, have helped me tremendously. I have kept the resource books I’ve gotten from them and I still refer to them. They are reference books to me and are very valuable. The Parkinson’s Foundation Helpline is like a safety net for me, knowing if I have any questions I can call them.

I’m a member of the PD Solo Group, and I am on the PD Solo Group Steering Committee. PD Solo is a group for people who have Parkinson’s and live alone.

I think it is important for people to be aware that there are people who have Parkinson’s who choose to live alone, and are able to live alone.

Being part of PD Solo has been very helpful. We talk about living alone with Parkinson’s and as a member of the steering committee, we help determine what the agenda will be for each meeting and pick topics we think would be good to discuss.

The group does more than just that though. Two members came up with the ideas of having a show-and-tell so we could learn what people do besides coping with Parkinson’s. People shared their hobbies and what they do, including things such as photography and poetry — it was just wonderful.

I want to bring more awareness to this community of people who are living alone with Parkinson’s. I also want anyone who is new to Parkinson’s to know that they are not alone. There is a wealth of information out there, and I suggest they get in touch with the Parkinson’s Foundation.

I suggest finding ways to stay active, join a support group, try to find a neurologist who is a movement disorder specialist for your care. Take part in Parkinson’s activities near you such as Rock Steady Boxing and Dance for PD which provides Zoom classes.. These activities help physically, but I believe it really helps reduce stress levels as well. Most importantly, do not isolate. There’s a tendency to look for pity but being active will be so much better for you.

For more information on the PD Solo Network, visit Parkinson.org/PDSolo.