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.
I met Rose when she joined our Parkinson’s support group a few years ago. I liked her immediately. She moved from New Orleans, LA after losing everything during hurricane Katrina. She had a strong “whiskey tenor” voice, was a long-term smoker and had a fabulous, loud laugh. Somehow, we had the same sense of humor and really hit it off.
Rose and I started meeting for lunch occasionally and I discovered that Parkinson’s was really hard for her. I remember her telling me once that she could no longer put on her “full face,” meaning her makeup, and because of this she just didn’t feel like herself anymore. It didn’t stop her from wearing cute outfits, like distressed jeans with a T-shirt or bright shirts, scarves and of course, a hat with everything! She also colored her hair a brilliant hue of red, which just suited her personality perfectly. She was an outrageous, fun-loving spirit!
As time went on, I noticed that Rose was becoming more depressed about her Parkinson’s. She dwelled on the things she could no longer do in life, things that were important to her. Then she had a heart attack in June 2018 and her health deteriorated further. She was on even more medications, now for her heart. She continued to struggle but wouldn’t accept help. She was very independent! I suggested getting different depression meds, but trying not to be intrusive, I never checked to see if she had done this. Rose was also a very private person.
Then the devastating news came. Rose committed suicide! All of us in our Parkinson’s support group and her Rock Steady Boxing group were shocked. How had we failed to see that she was “drowning,” and that she needed more support? Rose lived alone and had no care partner, although her daughter and grandchildren checked in on her frequently. But they all had their own lives, as did all of us in the PD community.
So, Rose left us. We no longer hear her loud laugh or get so see her sweet, lovely smile. She is gone and we are left wondering “what could we have done?” How could we have not seen that she needed more help? What would have made a difference?
During September, the Parkinson’s Foundation is shining a spotlight on Parkinson’s and suicide. More needs to be done, especially for those living alone with Parkinson’s! I hope we find ways to help so others don’t have to feel the loss, the pain and the constant questioning that a suicide leaves behind.
Please, if you are reading this and are feeling like Parkinson’s is more than you can bear, that it’s not worth living, and that you have nothing left to live for, PLEASE tell someone NOW, get help NOW, call a suicide prevention number NOW, because life is too precious and you will leave a HUGE HOLE in the lives of all those who know and love you!
My husband and I believe that one of the great “perks” of having Parkinson’s in our lives is that we have had the opportunity to get to know so many amazing people, like Rose, who live with the daily struggle of this disease. They are some of the nicest, friendliest, sweetest folks you can ever meet. We really feel blessed to have our Parkinson’s community!
On March 20, the Parkinson’s Foundation in collaboration with the U.S. Department of Veterans Affairs Ralph H. Johnson VA Medical Center, hosted a live online event, “Veterans and Parkinson’s: What You Need to Know.” More than 1,100 veterans and family members from all 50 states and several countries registered to learn more about managing PD. Four panels of experts from the VA and the Parkinson’s Foundation addressed key issues in treatment, care, mental health and available resources and benefits.
These experts discussed how Parkinson’s is treated in the veteran community and highlighted some of the unique factors that make veterans more at risk of not only developing Parkinson’s, but also of receiving later diagnoses and dealing with more complicated mental health challenges.
“A number of conditions that veterans are more likely to experience such as traumatic events, significant head injury, combat deployment and Agent Orange exposure placed them at greater risk of developing Parkinson’s,” said Dr. Travis Turner from the Medical University of South Carolina – a Parkinson’s Foundation Center of Excellence.
“Having spent a number of years working as a neuropsychologist in the VA health care system, I have observed some unique characteristics in the way that PD presents in veterans," said Dr. Turner. "For example, veterans are often less likely to seek medical help for subtle changes in their health. This means that when we see them the disease is often a bit more progressed before it is formally diagnosed and treated. Unfortunately, this means that there will be an extended period of diminished quality of life before we can get them the help that they need. However, with improving quality of care through the VA, access to specialized medical treatment and building patient trust, this is becoming less of an issue.”
Throughout the program, participants heard from experts and had an opportunity to ask questions about PD progression, treatment, as well as accessing specialized care. In addition to hearing from experts, we also heard from three veterans who are currently living with PD. Here’s what they had to say:
How did you manage your Parkinson's diagnosis as a husband and a father on active duty?
Eric Arrington, Army
“I just found out as much as I could about Parkinson’s and dug deep. I started preparing myself for the medical board and, believe it or not, I passed the medical board for the second time in my military career. A year later, I dropped my paperwork. I made sure my wife had everything that she needed and that she understood more about PD. Toward the end of his high school career, I made sure my son had opportunities to participate in different things he wanted to do and made sure my disease didn’t have a negative impact on my family.”
Why was it so important to you to move quickly and to make sure that you see a Parkinson’s specialist?
Jay Phillips, Army
“My first diagnosis came from a regular neurologist, not a movement disorder specialist, who immediately started me on carbidopa/levodopa. As a treatment, that's what we call the gold standard drug. But I learned about three months after that, when I got a second opinion, that it perhaps wasn't the best thing to have started me off on right away because my tremors were minimal and because of the possibility of long-term side effects. So, I decided to join a support group early on where I was exposed to a lot of other patients and I could see how complicated PD is and how everyone is taking different medications for different symptoms. At that point, I decided to seek out expert care.”
As a field hospital nurse in Vietnam, you had many exposures to Agent Orange. When your hand started shaking decades later, did you think it was related to your military service?
Lou Eisenbrandt, Army
“Absolutely not. As a matter of fact, with my nursing background, I suppose I should have been aware that something was going on. But when you go to nursing school, you really don't talk about Parkinson’s very much. Years later when I was looking for information online a lightbulb went off as I read about military exposure to Agent Orange and Parkinson’s. Most of my time in the field was spent in an emergency room where we got guys straight from field. The first thing we did was cut off their fatigues to assess the injuries. Lots of them were in the path of spraying for Agent Orange.”
What went through your mind thinking about life beyond diagnosis? Did you experience depression or anxiety?
Lou Eisenbrandt, Army
“Yes, I remember spending two days on the couch curled up in a fetal position. It caught me by surprise when I finally worked my way out of the depression because I had never experienced it before. Once I started reading more about Parkinson’s, I realized that many of us are not depressed because of our diagnosis but because we don’t have enough dopamine. I usually say I’m running at half-quart low. I learned that you shouldn’t be ashamed of taking antidepressants. I’ve really been on them since day one, and I’ve been living with this for 19 years.”
There is a category of veterans who suffer from post-traumatic stress disorder (about 20 to 30% that we know of). Do you think the Parkinson’s and PTSD influenced one another?
Eric Arrington, Army
“For a while, I thought I was going crazy. I didn’t put it together until I finally got the courage to see a psychologist. You’ve got to get the help that you need, take the medication and see the doctors. Taking the medication is not going to make you less of a warrior. It will enhance your abilities and make you stronger. It also takes the burden off the care partners when they are not the only ones watching out for you.”
What are some final words of advice for other veterans living with Parkinson’s disease?
“Find expert care, get the right medications and remember to take them on time. EXERCISE – it’s so important. Get involved with a supportive community of people. Take care of your care partner, especially as the disease progresses and things become more burdensome for them. The VA has some fantastic programs.” - Jay Phillips, Army
“Make sure you do your own research. What helped me was the Parkinson’s Foundation and the VA websites. Make sure you request books from the Parkinson’s Foundation and use their hospital safety resources so you know what you need to ask and have all your medication information handy. - Eric Arrington, Army
“I want to reinforce the caregiver aspect for caregivers are just indispensable patients. Remember that we cannot hurry anymore so be kind when you’re getting ready to go somewhere. And finally, what I tell everybody at least once when I talk to them, each Parkinson’s patient is just like each soldier. No two are alike. Get help if you need it and do not compare your symptoms to anyone else.” - Lou Eisenbrandt, Army
In 2020, the U.S. Department of Veterans Affairs (VA) and the Parkinson’s Foundation announced a partnership to improve the health, well-being and quality of life of veterans living with PD. This partnership will help expand awareness of VA and Parkinson’s Foundation resources provided to veterans with PD.
The Parkinson’s Foundation, in partnership with the VA, will continue offering educational events focused on the needs of veterans with PD. For more information about upcoming events, please visit Parkinson.org/Events or call 1-800-4PD-INFO (1-800-473-4636) for information about veterans’-specific programming.
