We offer our gratitude to the brave individuals who served in the U.S. military and are now facing a different kind of path – Parkinson’s disease.
In the U.S., an estimated 60,000 individuals are diagnosed with Parkinson’s disease (PD) each year. Of the nearly 1 million Americans believed to be living with the disease, an estimated 110,000 of them are veterans.
We have an obligation as a nation to honor and take care of the brave individuals who served in the U.S. military. This is why America has the most comprehensive system of assistance for veterans with Parkinson’s than any other nation in the world.
The U.S. Department of Veterans Affairs (VA) provides healthcare, home loans, insurance, disability compensation and other services to veterans.
To better address the needs of veterans with Parkinson’s disease, in 2000, the VHA established six Parkinson’s Disease Research, Education and Clinical Centers (PADRECCs) for clinical care, education and research in 2001.
The six PADRECCs are located in:
Los Angeles, California
San Francisco, California
Seattle, Washington
Portland, Oregon
Richmond, Virginia
Houston, Texas
Veterans who have been diagnosed with Parkinson’s disease and those who have just started to notice Parkinson’s-like symptoms are eligible for treatment at the PADRECCs. Typically, veterans are referred to a PADRECC or a Consortium Center by a consult from their VA primary care provider or general neurologist.
The PADRECCs also treat veterans with other types of movement disorders including dystonia, essential tremor, restless leg syndrome and atypical Parkinsonian disorders such as Lewy body disease, progressive supranuclear palsy and multiple system atrophy.
Veterans living with Parkinson’s disease or other movement disorders who are unable to travel to a PADRECC have the option of visiting one of 51 consortium centers, which are VA clinics staffed by movement disorder specialists or clinicians with vast experience and/or interest in the field of movement disorders. Click here for a full list of centers.
Pension extras and caregiver services
Did you know that if you receive a military pension and have Parkinson’s disease, you may be able to receive extra pension money? The two types of extra payment are Aid and Attendance (A&A) and Housebound. You can receive one or the other, but not both at the same time.
Housebound is when a permanent disability keeps you essentially limited to one place. A&A is when you need assistance with daily living activities such as getting dressed, if you are bedridden, living in a nursing home or if you have limited vision.
Veterans with PD may be able to receive a disability benefit, which is a monthly tax-free payment. The amount may vary if you have dependents or if you receive other military payments.
The VA also offers benefits for special events or situations, such as a temporary 100% disability compensation for hospitalization, recovering from a surgery or unemployment; allowance to buy a vehicle that could accommodate a disability; or even an annual clothing allowance for those who require a wheelchair, prosthetics or other assisted living devices.
Caregivers for veterans with PD also have access to help through the VA, including respite care for when caregivers need to take a break, adult day healthcare and long-term care in a veterans’ facility or a medical foster home, which is a private home with trained caregiver services.
In some cases, veterans with Parkinson’s may have developed the disease as a result of their service.
Evidence shows that one cause of Parkinson’s disease may be exposure to pesticides or herbicides. During the Vietnam War, many veterans were exposed to Agent Orange, a mix of herbicides that was used by the U.S. military to defoliate trees and remove concealment for the enemy.
Veterans exposed to Agent Orange during military service may be eligible for a free Agent Orange Health Registry Exam along with healthcare benefits and disability compensation. Vietnam veterans with Parkinson’s disease may claim benefits without having to prove that their conditions are due to Agent Orange exposure.
In January 2017, the VA issued a ruling making it easier for certain former service members with Parkinson’s disease (PD) to receive disability benefits. The decision applies to individuals who were exposed to contaminants at U.S. Marine Corps Base Camp Lejeune, North Carolina, from Aug. 1, 1953 to Dec. 31, 1987, and were later diagnosed with PD.
It should be noted that there are other causes of Parkinson’s disease, and many people who develop PD were never exposed to high levels of pesticides or herbicides. And there are many people currently living with Parkinson’s who have never served in the U.S. military.
For more information about healthcare, pension and other services for veterans with Parkinson’s, visit https://www.parkinsons.va.gov/.
Watch the recording of our Expert Q&A: Being a Caregiver with Maura Horton from November 9, 2021.
Thank you to our sponsors, Amneal and Kyowa Kirin, and to all of the generous donations that help support BGF programs.
I have experienced a lot of things throughout my years, but nothing like the uncertainty of 2020. Knowing that we’re all in this together has helped me remain focused on the things I can control, like continuing our work to improve the well-being of people with Parkinson’s. As we countdown the final days of 2020, I’m writing to express my gratitude for your support. Thanks to you, we’ve been able to keep our community connected and engaged during this difficult time through our online programs for people with Parkinson’s and their loved ones.
This year we celebrated 10 years of service to the Parkinson’s community. It’s a milestone I couldn’t have imagined when I started the Brian Grant Foundation in 2010, two years after my Parkinson’s diagnosis. While we weren’t able to celebrate our anniversary the way we had planned, I hope you know that I’m grateful to everyone who has supported us over the years. We’ve grown into a world class organization and a community that’s living better, together.
As we head into a new year, I hope we can count on you to be on our team. Please consider making a year-end gift to the Brian Grant Foundation today.
Have a safe and happy new year!
Advocate for people with Parkinson’s and their families.
The Brian Grant Foundation is actively engaging with national organizations to advocate for policies, research, funding and medical therapies that help people with Parkinson’s and their families. BGF works closely with Michael J. Fox Foundation’s Unified Parkinson’s Advocacy Council (UPAC) and PD Avengers on advocacy initiatives. Both organizations are involved in a wide variety of initiatives to make change and unite Parkinson’s efforts. We’re asking you to help advocate for people with Parkinson’s and their families by taking action today.
Here is a list of current action steps that you can take to advocate for people with Parkinson’s and their families:
Become a PD Avenger and support global efforts to end Parkinson’s disease
Help ban paraquat, a toxic chemical linked to Parkinson’s disease
Tell Congress we need more dollars for Parkinson’s research at the Department of Defense
Tell Policymakers about the importance of telehealth for people with Parkinson’s
PREVENTING PARKINSON’S AND ENSURING PEOPLE WITH THE DISEASE HAVE ACCESS TO CARE IS URGENT.
Parkinson’s Disease is the fastest growing neurological condition in the world. The costs associated with Parkinson’s are also increasing at a rapid pace.
According to Michael J. Fox Foundation, more than one million Americans, including over 110,000 military veterans, live with Parkinson’s and it costs the federal government and American families an estimated $58 billion each year. It’s estimated that more than 1.6 million Americans will live with PD by 2037 at an estimated cost of nearly $80 billion.
Through advocacy efforts, we can help prevent Parkinson’s, develop better treatments and ensure people with the disease have access to essential care. Together we can end Parkinson’s and help people with the disease live well today.
Motivation is a two-way street for people with Parkinson’s and their care partners. Help each other live happily and healthily ever after by seeking opportunities to exercise together.
We already know that exercise is an important tool to help with the cognitive decline that people with Parkinson’s experience as the disease progresses.
But it’s also important to remember that those with Parkinson’s disease aren’t the only people whose brains benefit from a consistent fitness routine.
Research has found that everyone’s cognition starts to decline after the age of 40. That’s why engaging in an exercise program isn’t just good for people with Parkinson’s – it’s good for their spouse, partner, children and basically anyone else serving the role of care partner.
Exercise doesn’t just keep the body healthy – it keeps the brain healthy. When you work out, you’re constantly challenging your brain to communicate with other body parts to complete various physical tasks, whether it’s navigating around obstacles while jogging or throwing and catching a ball.
Completing physical activities that challenge cognition is very important for people with Parkinson’s because it helps sharpen their mental acuity and prolong their independence. Staying active helps us stay self-sufficient, which is something everyone wants to hold onto for as long as possible.
That’s why it’s so important for care partners to keep motivating their loved one with Parkinson’s to exercise.
There is strength in numbers
What’s the easiest way to motivate someone to exercise? It’s simple. You exercise with them.
Think of the care partner as a personal trainer whose job is to help their client find a physical activity they enjoy doing – whether it’s walking, dancing, playing racquet sports or bowling – and then join them in that activity.
Exercise is more fun when you have a buddy working out beside you – and it’s even more effective when you think of that buddy as a competitor. Don’t believe us? Just ask science!
Researchers at Kansas State University found that people who exercised with someone they thought was better than them increased their workout time and intensity by 200%.
We have the Köhler Effect to thank for this, which is the idea that a person works harder as a member of a group than when working alone. In fitness terms, this means we’re likely to push ourselves harder when working out with people we perceive to be in better physical shape.
Let’s say you’re gearing the family up for some friendly competition. When you announce, “Last one to finish carrying in the groceries is a rotten egg!” everyone is going to try their hardest not to be that rotten egg.
Had you simply asked, “Will you please carry in the groceries?” they still would have carried in the groceries, but they wouldn’t have been motivated to do it as quickly and effectively had you not challenged them to a competition. That’s the Köhler Effect kicking in.
The point is, when we work out together, we motivate ourselves to meet our fitness goals, while also motivating our loved one to meet theirs.
“Not today Parkinson’s” was the mantra of Team Rebounders as they finished 47 miles as a team in the High Desert Relay in Bend, Oregon on October 2, 2021. This mantra gave the 6-person team the power to finish, and finish with a vengeance.
High Desert Relay isn’t like any other 5k event; it’s a relay race with teams of four to six people covering 47 majestic miles in Central Oregon. It requires training, planning and teamwork from every team.
Team Rebounders isn’t like any other team; three members of their crew – Michelle Garrett, Cathie Baker and Kat Hill are also living with Parkinson’s. They were accompanied by their husbands and Michelle’s son, Hayden, to round out the team.
So “not today Parkinson’s” was just that. On race day the focus for this team was on teamwork and communication. It was proving that you can set a goal and absolutely crush it.
But the team wasn’t always so confident that they’d be able to participate in a 47-mile race.
“So many times, people with Parkinson’s think or say they can’t do something because of their disease,” says Kat.
That was true for Michelle, who had stopped participating in races because of her beginning stages, undiagnosed Parkinson’s symptoms. Though Michelle had been an avid runner and participated in many races, she retired her running shoes around 2014 because of intense pain and discomfort in her foot, caused by dystonia, which hadn’t been identified yet.
But Michelle decided to give the relay a shot, to help support the Brian Grant Foundation and get back to an activity that she loves. She formed Team Rebounders and recruited her friends, Cathie and Kat. They trained together and with the support of their husbands, participated in a once-in-a-lifetime 12-hour adventure.
Michelle had the 5am starting leg of the relay, in the darkness of the early morning. Michelle said, “the relay gave me a chance to face the demon of dystonia out there.” With her best friend and husband by her side, telling silly stories, she was reminded to “take in the moment.” She said, “it’s so rewarding knowing no matter how I was going to get there, I knew I was going to get there, even if I was crawling. Every day is an opportunity to win.”
Picture below is the team at the finish line. Left to right: Ken, Kat, Michelle, Hayden, Cathie, and Dan.
