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. 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 diagnosis of Parkinson’s disease 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 it ever cross your mind that 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 how life would go beyond your diagnosis? Was there any depression or anxiety around your diagnosis?
(Lou Eisenbrandt, Army) “Yes, I remember spending two days on the couch curled up in a fetal position. It that 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 a half court 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?
(Jay Phillips, Army) “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.”
(Eric Arrington, 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.
(Lou Eisenbrandt, 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.”
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, plans to 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 (473-4636) for information about veterans’-specific programming.