It started with something small: I found it difficult to button my shirt with my right hand.  

In 2022, that small sign became a life-changing diagnosis: Parkinson’s disease. With no family history and a lifelong focus on health, the news was a shock. 

I tackled it head-on with exercise, therapy, a healthier diet and a support group for those newly diagnosed. My wife stood beside me every step of the way, connecting with care partner groups and reminding me we were in this together. 

Then, in the spring of 2024, my world collapsed. She died suddenly, just three months before the birth of our first grandchild. For months, I let grief take over—poor diet, little sleep, no exercise. But slowly, I began to climb back, knowing she’d want me to keep living, not just surviving. 

Now, I share my journey through my blog—writing about Parkinson’s, grief and hope. My grandson is one year old, and when I hold him, I see her in his eyes. 

I’m grateful for my Parkinson’s community and proud to serve as a Parkinson's Foundation Ambassador speaking at local events, fundraising and supporting others facing the same road. Parkinson’s is part of my life, but it doesn’t define me. 

I have someone who I get to share my life with, as well as friends and family who lift me up. My disease is manageable. And every day, I try to live the kind of life my wife believed I could—one filled with purpose, gratitude, and love. 

Reclaiming Restful Sleep by Unraveling How Parkinson’s Changes the Brain 

Along with the typical movement-related symptoms, many people with Parkinson’s disease (PD) also experience other non-movement health issues. These non-movement symptoms can be quite debilitating and sometimes more difficult to notice by care partners. 

One common non-movement PD symptom is difficulty sleeping, often in the form of waking up frequently throughout the night. Pamela Marcott, MD, PhD, a recipient of a Parkinson’s Foundation Postdoctoral Fellowship, is casting a spotlight on the sleep-associated circuits of the brain to understand how exactly PD impacts sleep patterns. By uncovering the mechanisms behind PD-related sleep problems, she hopes to help advance new therapies for such disturbances. 

While much of the neuroscience of sleep is still a mystery, researchers do know that staying asleep through the night requires a highly calibrated balance of different signals in the brain. These sleep signals are relayed through brain cells called neurons and can vary in frequency and intensity, depending on their purpose. If these signals become altered and imbalanced, sleep fragmentation occurs with "frequent changes between different sleep and wake states, leading to less consolidated and restful sleep,” said Dr. Marcott. 

Under the mentorship of Alexandra Nelson, MD, PhD, and Ying-Hui Fu, PhD, at the University of California, San Francisco, a Parkinson’s Foundation Center of Excellence, Dr. Marcott is investigating how PD changes the behavior of neurons in a specific sleep-regulating region of the brain called the pedunculopontine nucleus (PPN). PPN neurons act like telephone operators, relaying important signals across the brain. Using mice with and without PD-like symptoms, she will measure how the disease affects the ability of PPN neurons to transmit their important sleep signals. 

“Results of this study will improve our understanding of the circuit mechanisms that regulate sleep disturbances in PD, which will inform future therapeutic treatments.” - Dr. Marcott 

After learning more about how PD changes the sleep-related neurons’ signaling ability, Dr. Marcott will then monitor the brains of the mice as they sleep. She will keep a close eye on how the PPN neurons activate during sleep phase transitions, as she believes PD causes these neurons to be overactive and lead to fragmented sleep. Observing in real time how PD alters sleep regulation in the brain will provide a strong foundation for understanding how to treat this symptom and give restful nights back to people with PD. 

 “As a physician scientist in this space I am committed to making meaningful discoveries in the laboratory that will benefit my patients, and I am excited to have the opportunity to start this phase of my career with the support of the Parkinson's Foundation,” said Dr. Marcott. 

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers. 

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.

I was diagnosed with Parkinson’s disease (PD) in a strange way. I was at a pain clinic getting a steroid shot in my back when it was suggested that I should see a neurosurgeon. I agreed, so an appointment was made. When I met him, he kept looking at my hand. After a few minutes he stopped talking and said he wanted me to see a neurologist for an EMG (a diagnostic test that measures muscle response). Not being sure what that was I said OK, and another appointment was made. 

When the neurologist appointment came, I met her and before the EMG I was asked many questions and went through a series of tests. Not really knowing why, but knowing there must be a reason, I complied. Finally, I had the EMG, and then a cognitive test. 

She took very detailed notes the whole time and excused herself for a few minutes. When she came back, she said we had several things to talk about and proceeded to tell me that I had Parkinson’s.  

My reaction was what it might feel like if you were hit in the face with a football. I never saw it coming.

The neurologist was very kind and explained what led to the diagnosis. It turns out the neurosurgeon noticed my tremors and sent me to her thinking that she needed to look further. It took me two weeks to process this information. 

I was in complete denial but after that, I was able to take a physical therapy (PT) class designed for Parkinson’s called BIG movement. It has changed my life. It has been the best thing I could have ever done. 

My outlook is positive, I am boxing now, I walk confidently, my balance is better. I participated in my first research study, the Parkinson’s Foundation genetics study, PD GENEration, because this hits as close to home as you can get. I want to do whatever I can to help find a cure so that hopefully no one in my family or anyone else’s family ever has to go through this experience.

I wanted to participate in this study for a couple reasons. The first was for my family. I felt it was important to find out if I had a genetic link to PD they wanted to know about. Once I submitted my genetic sample, I asked each person in my family if they wanted the results and told them I would respect their answer with no judgement. The second reason was for myself because having Parkinson’s has opened my eyes to just how much I have never known or understood, and more information could only help me.

It felt great to participate in this study because I felt that I was being proactive. For me, anything that can help get answers is one step closer to hopefully finding a cure for this disease.

I will tell anyone who is newly diagnosed, don't feel bad if you get angry, or are in denial, that's a normal response. In my area there is a wonderful group that I connected with that we meet once a month and share news about research we have found, diet, PT, anything. It’s great because we all understand where we are coming from without having to explain. 

Parkinson's is hard but you don't have to travel that road alone even if you have family at home who help you.