My adventure with Parkinson’s disease (PD) started 19 years ago when my primary care physician noticed a slight tremor in my hand and sent me to a neurologist for tests. One year later, I was diagnosed with Parkinson’s. I have been pleased under his care, as he has been cautious  increasing dosages, and has not been too quick to introduce new PD medications. Now that my needs are increasing, I am thankful he didn't prescribe too much too soon.

A few years ago, I started a PD support group at my church. I reached out to the Parkinson's Foundation Helpline — at 1-800-4PD-INFO (1-800-473-4636) — for information and was grateful for their provision of both basic and more advanced information. The support group was successful, with a monthly attendance of about 15 people, including caregivers. As time passed, I became overwhelmed with preparation and leading the meetings, so the group disbanded.

Sharing some of my bumps in the road... have you ever hallucinated? One day I saw a cute mouse, dressed in a tuxedo. He ran from the kitchen to where I was sitting at my computer, he saw me and ran back. I set mouse traps. Days later, when he neither reappeared nor got caught, I realized he did not exist.  

I take three pills during the night (2 a.m. and 4 a.m.). This has been the answer to help me wake in the morning and take PD medications with breakfast, then waiting until noon before I have the energy or balance to do anything other than sit. It took about two weeks to fine-tune the timing. I hadn't told my neurologist what I was trying. I called the Parkinson's Foundation Helpline for their opinion of my unusual scheduling and was advised to discuss it with my doctor. He gave me a green light.

My physician and neurologist are both retiring. I am not happy. So, I called the Parkinson's Foundation Helpline for recommendations of PD specialists in my area. Although they provided some, they were too far for me to drive. I am exploring local neurologists, and trusting God to lead where He thinks best for me. I am in good spirits and try to give a listening ear and TLC to homebound friends. My hubby of 62 good years and I laughed a lot, and I continue (he passed six years ago) to.

I connected with the Parkinson's Foundation Helpline several years ago, and I view it as an always open door for help. I have appreciated them from day one. Without my hubby and my retiring doctors, I have almost found a "second home" with the Parkinson’s Foundation information specialists.

With every phone call to the Parkinson's Foundation Helpline, I ask for advice, information or opinion on minor and major issues connected to PD. I have always been connected to a patient, pleasant, interested, caring and knowledgeable Parkinson’s information specialist... who becomes more like a friend by the time I hang up.

Parkinson’s is not the end of my story. I believe that with God's guidance, family, friends and the Parkinson's Foundation, I may have a few more years to enjoy life.

Call the Parkinson's Foundation Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

I was diagnosed with Parkinson’s disease (PD) in 2014, at age 75. I am ashamed to say that upon receiving my diagnosis, I yelled at the doctor, “I’m not going to change my lifestyle!” He tilted back in his chair. “You don’t have to,” was his quiet reply. So, this independent, stubborn woman began her journey with PD. What to do?

I ran away! In 2005, I was living a unique retirement lifestyle, volunteering at organizations in the United States that offered free room and board. I had promised to go to the Menaul School in Albuquerque, New Mexico, for a semester. Getting diagnosed with Parkinson’s brought on an entirely new set of questions: Do I stay or go? Should I share my diagnosis with anyone? How am I going to tell my children? I could not say the word “Parkinson’s” without crying.

Now, 9 years into this degenerative disease, I fight back. I have grown past denial, anger and crying, and I have sprung into advocacy. I search for ways to promote awareness for Parkinson’s and to inform the world about the realities of the disease. I am eager to communicate with others living with PD, not to evoke pity, but simply to find understanding and community. By doing so, I have evolved into a Parkinson’s Ambassador.

April is Parkinson’s Awareness Month. I am always searching for new ways to raise awareness for Parkinson’s disease throughout the month. My local library in Ridgefield, Connecticut has been my biggest ally. They have updated their collection of Parkinson’s-related materials and they notify me of each new arrival. The Ridgefield Library is also offering an informational display table with Parkinson’s resources, which will be available all month.

Due to my limited mobility, most of my activism for Parkinson’s Awareness Month has been managed via technology. I reached out to the Ridgefield 1^st Selectman, who plans to issue a Proclamation acknowledging Parkinson’s Awareness Month in my town. I am also submitting letters to the editor to local newspapers to further raise PD awareness throughout the month. Awareness is so important for research. I am so pleased and proud of the results.

Psychologically and physically, managing my Parkinson’s is my full-time occupation. However, by participating in volunteer and social activities like being a Parkinson’s Ambassador, interacting with friends, and daily exercise, my attitude becomes energized. After all, motion is lotion.

Take 6 minutes to help create a world without Parkinson’s this Parkinson’s Awareness Month.

I was diagnosed with Parkinson's disease (PD) in 2013, after over a year of my symptoms being misdiagnosed. My husband and I were dumbfounded. Neither of us had anyone with Parkinson's in our families, and we knew nothing about the disease. While searching online for information about PD, I found the Parkinson's Foundation and decided to call the Helpline.

I talked to a Helpline specialist, who guided me through the Foundation’s resources and told me about a five-day workshop taking place not far from my home in Pennsylvania. My husband and I attended the workshop, and we were submerged in education, exercise, support groups and comradery. It was the best thing we could have done. I sat in on seminars led by doctors who stayed long after they were scheduled to speak, just to answer questions from attendees.

The workshop took place three months after my diagnosis. Up until this point, I had not cried. For days, tears poured out of me during these sessions — I felt this was expected, because there were boxes of tissues throughout the room. I left after five days feeling empowered by a better understanding my disease. I no longer felt alone.

My husband understood what I was going through. We came home from the workshop knowing others in our area living with Parkinson's. This was just the beginning of our journey in bringing Parkinson's awareness and resources to this corner of Pennsylvania. We started an annual 5k race that took place five years in a row, raising over $200,000 for Parkinson's research.

I became involved in clinical studies for Parkinson's research. One of these studies, which is being conducted in research centers around the world, is looking for biomarkers to diagnose and prevent PD. In 2020, I had deep brain stimulation (DBS) surgery. I continue to share my experience with DBS and serve as a resource for others considering the surgery. I also make a difference by volunteering with the Parkinson's Foundation.

My continued involvement with the PD community has helped me feel like my experience with Parkinson's happened for a reason. My journey has been made easier by my family. My husband has been by my side since we attended the workshop together. He understands my challenges. My husband, along with our three children and their spouses, were tremendously involved in the success of the 5k. The support I have been given by my family has made this journey easier.

Learn how to get involved as a Parkinson’s Foundation Ambassador.