Roberta Crooks’ hands were shaking so badly she could barely use the keyboard while at her job as a business analyst one summer day in 2011. Her doctor quickly referred her to a neurologist who diagnosed her with Parkinson’s disease (PD). Roberta lives in a small, rural Kansas town with a population of 2,000 people, but the passion and perseverance she shows when serving the Parkinson’s community is anything but small. 

Roberta’s neurologist referred her to the nearest Parkinson’s Foundation Center of Excellence at the University of Kansas Medical Center. From there, she continued to educate herself on the benefits of exercise and knew that movement was going to be an important part of her toolkit to fight PD.  

She continued to work out, but with no specific Parkinson’s focus. She happened to see a local news program on Rock Steady Boxing in the Kansas City area and decided to try it. The class was nearly 40 miles from home, but worth the drive. On day one she found camaraderie with others in the Parkinson’s community. Class by class they would gradually open up and share stories about their disease, treatment and coping strategies. Roberta had no experience with support groups but suddenly knew she needed to start one in her own community. 

Roberta launched a support group in January 2018, targeting a four-county area, through a true grassroots awareness effort of posting flyers in libraries, senior communities, doctors’ offices and post offices. The local library offered a monthly meeting space and some members to assist with planning. 

Roberta is passionate about securing speakers on relevant topics to ensure her community has the knowledge and resources they need. The Wellsville KS Parkinson’s Support Group continues to grow, drawing from this rural community with significant interest in learning how to live a better life with Parkinson’s.

In addition to providing a support group facilitator guide and educational resources, the Parkinson’s Foundation Heartland Chapter also recently presented to the group. “In the Parkinson’s Foundation support group guide I read that some support groups will vary their program and instead meet for coffee or to exercise. That gave me the original idea to get our group exercising together weekly,” Roberta said.   

With the seed planted, Roberta embarked on an effort to help her fellow support group members find feasible options for Parkinson’s friendly exercises, in a nearby area for those who can’t travel long distances. Roberta reached out to local recreation centers and secured a community facility for members of her group to work on their balance and mobility through exercise. She also connected with the local community college to engage the occupational therapy instructor and students to help support exercise classes this summer.

Roberta’s primary goal is to establish regular exercise classes for her local PD community and ensure that the classes are sustained past the day she no longer helps lead them, but she doesn’t see that day happening soon. Her resourcefulness and commitment to her Parkinson’s community is truly an inspiration.

Interested in starting a support group in your community?
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My name is Ideliza Hernandez and I am a caregiver for my dad Rey Gonzalez. Dad has had Parkinson's disease for more than 25 years.

What we thought was a simple leg movement as he enjoyed his music, resulted in a Parkinson’s diagnosis. The tremors were getting worse, but my mother, Idali Gonzalez, had to keep going to work. It came to a point when he could not be left alone.

It is not easy to watch the changes he's gone through and continues to go through. To help him walk, to see his pain, for him not to be able to do much on his own is a reality he had to accept. The disease changed his life, as well as ours.

Dad had deep brain stimulation (DBS) surgery with hopes that most of the tremors would be controlled. Sadly, there were setbacks. He caught a bacterium that was treated at home via IV three times a day for a year. Then, he had to go through part of the surgery again. The tremors persisted.

A few years later, he tried DBS again, but not much luck. Today, he takes medications every two to three hours.

For the past eight years, I've fundraised in his honor, for my godmother, Maggie Gonzalez, and in honor of our dear friends who have Parkinson's. The goal is to help find a cure and the support we have received throughout the past eight years has been incredible.

I host a Facebook page titled "Caregivers Strength,” where I post daily inspirational quotes to show others that we are not alone — that together we can continue strong for those we care for.

My daughter, Netanya Hernandez, has her own Parkinson's page on Facebook titled, "My Grandpa Rey has Parkinson's Disease." She's his mini caregiver that has seen his changes in her 13 years.

Here at home, we are a team. We help dad move forward and let him know that he's not alone. As a caregiver, it's not easy to face Parkinson's disease. I have to keep myself strong and maintain my faith. No one wants to see the ones we love hurt. I make sacrifices, but it's to make sure he's well taken care of. I have my melt downs, but I continue moving forward with him, and for him. I'll treasure his good days and reassure him that if he continues to be strong he will get more of those good days.

Dad will always be my super dad, my hero, and my mentor. I will not stop my mission to help find a cure and to help all those fighting this disease to stay strong.

I want to be able to see Dad smile again and have him say, “WE DID IT!”

For caregiver resources visit Parkinson.org/Caregivers

I was first diagnosed with Parkinson’s in 2006 at the age of 44.  At the time, I had several undiagnosed health issues, but was somehow able to “power through” it all to a keep alive a rapidly rising career—and no matter what I said, career is really what was most important to me.

I don’t mean to minimize my family, but when I got the diagnosis of Parkinson’s, I had to look myself in the mirror and answer one key question:  “What was really the most important thing in my life?”  I came to find out that my heavy focus on “career” had been way off target—what was most important was “family” and “relationships.”  I went into a period of reassessing all aspects of my life to refocus on these key areas of my life.

I had to take disability retirement from my career toward the end of 2006, given my growing inability to multi-task, make decisions, attend meetings without getting up every five minutes to stretch or relieve my painful spasms, and basically just not being able to do all that was required of me. THAT was a very tough decision for someone with my focus at the time.

But once I looked myself in the mirror, and put my career on the back burner, I decided to focus on my family, friends, health, and hobbies.  In 2008, we went on a long awaited vacation to New York City (see picture—I am the one male in the picture, and my wife Renee and daughters Alyssa (17) and Niki (14) represent the rest of my family).  It was a great, albeit active and tiring, vacation.

And as of 2009, I took the next step of my journey with Parkinson’s by undertaking Deep Brain Stimulation Surgery.  It was a tough decision to make, but I really had no choice—the amount of medication I had to take to control my symptoms was getting higher than my doctors were comfortable with. 

Bottom line, the surgery was successful, and my first programming session (which is all I have had as of the time of this note) was very successful as well.  The procedure has allowed me to virtually eliminate my tremor, and greatly reduce my muscle rigidity.  And who was there to support me through this part of my journey—family and friends, the most important part of my life.

The key things I would tell anyone with Parkinson’s are as follows:

1. Try to find the “gift” hidden in the fact you have this horrible disease—for me, it was a refocusing of my life on what was most important
2. Understand that Parkinson’s is not a “death sentence”, even though it is chronically progressive—there are lots of things to accomplish on your journey, and the symptoms and problems of Parkinson’s are just things to manage through
3. Parkinson’s is in fact a “journey”—a path you start down with your initial diagnosis, but one that continues as you evaluate the various alternatives available to you, and one that further continues based on the decisions you make….. “decisions YOU make”…… the disease doesn’t have to make your decisions for you.

(In a Sopia Patrillo voice) Picture it. Park Ridge, IL. 2011. A young, skinny, attractive gay man notices some odd shaking happening while holding the church bulletin one Sunday morning. He whispers to his husband, “check out my thumb,” as it shakes ever so slightly. He doesn’t make too much out of it, but deep down he knew what it was because both his paternal grandparents and great uncle had the same issue. That young, very good-looking man in this story is me. 

When I first started to notice the shaking in my thumb, it was sporadic. I didn’t worry about it too much. Then, it started to affect my whole hand. What was an every-once-in-a-while thing became constant. I started meeting with a neurologist by my house trying various forms of medication. Eventually normal tasks like buttoning my shirt and pants became a frustrating ordeal. By the time I was diagnosed at 37, I was trying to plan for the future with long term care insurance and life insurance – both were ultimately denied. 

By 40, the tremors spread to my whole arm and down to my right foot – my driving foot. I thought that if I didn’t do something more drastic soon, I would end up on disability within five years.

I found out I was a good candidate for Deep Brain Stimulation (DBS) surgery. I signed up and didn’t want to know any details. My eyes were on the prize.

My device was turned on four weeks following surgery. Within two months, I was 90% better. Most things became easier. I can now button my sleeves with ease. Playing the piano and writing remain a struggle but are still better than before. 

My support system is amazing. I have incredible family, friends, and coworkers, and have gained a new group of friends through Parkinson's support groups.

I try not to take life too seriously. I’ll be the first to make fun of myself for spilling food on my shirt or soup on the person next to me.

My advice for anyone newly diagnosed is to stay active and involved with your hobbies and friends.

Tell everyone you meet about your Parkinson’s. At first, I didn’t want people to think I was shaking because I was one drugs. Then, I found that many people are going through similar struggles.

Because I told the reading specialist at the school where I teach, I found a neurologist at Rush Hospital, a Parkinson’s Foundation Center of Excellence. It’s also where I had DBS.

Sign up for the studies. The more people who volunteer for these, the sooner we’ll find a cure. If it doesn’t help us, it might help future generations. 

Try not to compare yourself to others with this disease. Everyone is so different.

And, look for the good. If you can’t, find the people who do. 

My journey with Parkinson’s disease (PD) started when I was a young combat Marine in the dense jungles of Vietnam. We could hear the hum of the low flying planes above the insect drone and see the long vapor trails that followed them. The planes were delivering death and illness by dispensing the herbicidal poison innocuously code named Agent Orange.

Agent Orange is one of the most toxic substances on earth because it contains dioxin toxin made by Monsanto; remember their ironic, iconic slogan: ‘better living through chemistry?’ The results of my exposure to this toxin would become apparent decades later. 

Agent Orange initiated a progression of brain-cell death that took 40 years to manifest as PD starting with tremors in my left hand and foot. By the time I climbed out of denial, I had more symptoms.

I finally went to the neurologist who observed me shuffling down the hall and said, “You have Parkinson’s.” Because my exposure to Agent Orange was service connected and presumably the cause of my PD, I was able to get care from the VA. I was very down about the diagnosis. Life was gray and great chunks of time went missing.

After a couple years of depression the colors squeezed out of every moment, I picked myself up and started to move. I took charge of my PD and, in addition to my medication, I started a regimen of alternative treatments: Tai Chi for balance, yoga and acupuncture for stiffness, and biking and walking for general health. Meditation put me back in touch with the colors and music of the world. My intention was to slow the inevitable symptom progression of PD, a chronic, degenerative, and brutal disease. I just wanted to feel normal. To do so meant even more radical action.

I went to India for a detoxifying cleanse. The protocol used there was ancient. PD-like symptoms were recognized in India more than a millennium ago. This was a very difficult trip but I desperately wanted to improve the quality of my life.

Five years later I was not improved, nor was I terribly worse and I still was not on L-Dopa. In a counterintuitive way this was progress. Admittedly this is an unscientific conclusion, but I did have enough energy to write a book about my war experience: “A Hellish Place of Angels.” With the medicine and the alternative treatments, my health seemed to degenerate at a slower rate. Now I have more good days than bad days.

The PD prevents me from ever returning to my previously fast paced life. Perhaps this is for the best. 

In my experience the varied treatments played a big role in my quest to approach feeling normal again even if it is a new normal.

Veterans who develop Parkinson’s disease and were exposed to Agent Orange or other herbicides during military service are eligible to receive VA healthcare (including a free Agent Orange registry health exam) and disability compensation.

“I keep active so I can keep up with my son,” said Tyaisha Blount-Dillon, a dedicated mom of 8-year-old William-Wallace and wife who is living with Young-Onset Parkinson’s disease. “My husband and I enjoy going to my son’s baseball games. I have a goal that if he is playing baseball in college, I am going to attend without using any assistive devices. I don't allow myself to imagine anything else.”

In the near decade since Tyaisha was diagnosed at age 35, her determination to live a long, healthy life with Parkinson’s disease (PD) has only strengthened. Today, Tyaisha helps and listens to others living with the disease, because she knows just how difficult getting a diagnosis can be. She hopes that her appearance in “Better Lives. Together.” the Parkinson’s Foundation public service announcement (PSA) will spread critically needed awareness to the millions of people who live with or love someone with PD.

“I hope that this video really informs everybody because when I didn't have a diagnosis is when I most used the Parkinson's Foundation,” said Tyaisha. “The website offers so much information, and so many resources, like the Helpline, that are so empowering.”

When Tyaisha was officially diagnosed in 2013, she had already forged a proactive path toward better health. She had spent nearly 10 years searching in vain for the cause of her debilitating symptoms, including extreme fatigue and painful muscle cramps (which she later found out was a form of dystonia common in Young-Onset PD). Her age and gender were not considered typical of PD, and as a Black woman experiencing bias in healthcare, finding proper medical care was that much more challenging.

“I was very athletic, and I still am, so my physique did not look like someone who was ill,” said Tyaisha. “Doctors would tell me that I wasn't sick, but why would I tell them I was having trouble walking if nothing was wrong? Doctors did not believe me, and I could not find any medical support.”

Tyaisha did her best to push through her mounting pain and fatigue. Ultimately, after experiencing a heartbreaking pregnancy loss prior to her pregnancy with William-Wallace, she knew she had to be even more aggressive in finding out what was wrong.

“There was a point in 2010 where I could barely walk. I was lethargic and I didn’t know what was wrong,” said Tyaisha. “My brain was not coming together properly with my body.”

Relying on her research and what she remembered from her physical therapy courses in college, Tyaisha designed an exercise regimen for herself. She hired a personal trainer and set out to eat healthier. “I was walking better and getting stronger,” she said.

She became pregnant again, unwavering in her dream of being a healthy, active and involved mom. “I kind of had to put myself in a position to fight, because I knew this was not the end for me,” she said.

Tyaisha’s pregnancy with William Wallace also created a sense of urgency for her healthcare team to find a diagnosis. She eventually found a doctor she trusted. “He had the patience and the understanding I was looking for in a provider,” said Tyaisha.

After undergoing several neurological tests, Tyaisha’s care team finally arrived at a Parkinson’s diagnosis. With a newly prescribed course of medications, her health continued to improve.

She gave birth to a healthy son, William-Wallace, who follows his mom’s active example. “I demonstrate to him that every day is a new day,” she said. “If I had a bad day yesterday, I forget about it and start over.”

While Tyaisha’s journey with PD has included ups and downs, she has continued to find new ways to adapt. She shifted from a high-stress full time job to self-employment. She underwent deep brain stimulation (DBS) surgery to help control her movement symptoms when her son was just six years old. She continues to stay active every day, whether gardening, working out with her trainer or playing with her son.

"Parkinson’s stretches you — it can force you to do things that you never thought you would be able to do,” said Tyaisha. “You just need to develop ways to fight through it. People may feel that they cannot improve, but I am living proof that you can.”

Watch our “Better Lives. Together.” public service announcement