An interview with Linda and Keith Hall from Parkinson’s Fitness on August 1, /2023 by George Ackerman, Ph.D, J.D.
Biography
Keith and I met in the early 70s in college. So, we have been together over 50 years. We had a lot of travel experiences and adventures from touring England many times, to rock climbing and skiing. We continued traveling, enjoying many trips with our son as well. He shares the love of history and hearing stories of his grandfather in WW11. Hence, we have been too Normandy, Belgium, Luxembourg, and a reenactment of the Battle of the Bulge. All places Keith’s father was a part. Keith was diagnosed when our son was still playing little league baseball.
Please tell me a little about your background.
Parkinson’s had little effect on our lives initially. Keith continued being that “gym rat” he always was, meeting at the gym with his cronies at 5 am. On our trip to Normandy, Max and I noticed that Keith seemed to have tripped a few times and was having some difficulty going up stairs. Never an issue. Forgot to mention Keith continued jump roping and boxing all along.
Keith was diagnosed in 2007. Nothing changed for a while. We both got involved in as many clinical trials as possible. Loved being part of this incredible medical world in Boston.
A lot was happening in Boston but no real exercise programs, etc. North of Boston of what we call the North Shore. Hence, we started Parkinson’s Fitness in 2013!!! We grew from 2 classes a week to 10 in several different communities. When Covid hit one of our instructors went virtual the following week. Everyone had a steep learning curve, but we were so proud of them. The website shows the You tube videos and our weekly newsletter not just with our information and class schedules but lots of other things happening in the Parkinson’s world.
Can you tell me more about Parkinson’s Fitness?
At age 55, Keith walked down a neurologist’s hallway, touched each of his fingers to his thumbs in quick succession, held his arms outstretched at shoulder height as the doctor watched for tremor, and resisted the force of the doctor’s hand pressing on his leg as he tested Keith’s strength level.
In less than a half hour, Keith – the experienced Navy flight instructor, military reconnaissance and commercial airlines pilot, staunch fitness enthusiast and personal trainer, wage-earner husband and father of a then young baseball-playing son – struggled to comprehend what the doctor meant when he told him, “You have Parkinson’s.”
Following the initial diagnosis, as a husband-wife team knowing that their lives were forever changed, Keith and Linda Hall faced questions about future physical and emotional challenges. They joined the hundreds of thousands of other “PWPs” (people with Parkinson’s) who have:
learned to seek out physicians who will best listen and guide,
joined clinical trials,
researched the latest information,
considered the benefits of a support group,
participated in Parkinson’s assessment programs.
As a former pilot, Keith has always been an exercise enthusiast, whether at the gym, instructing young baseball players, or perfecting workouts at home. His determination to not allow his Parkinson’s diagnosis to define who he is and what he does is a beacon for everyone who knows him. His fitness training experience and knowledge reinforces all aspects of the Parkinson’s Fitness concept.
Linda is trained in seniors’ group exercise, as well as yoga and Dance for PD. She tirelessly oversees the administrative functions of the organization and participates in clinical trials and specialized Parkinson’s physical therapy, exercise, and cognitive programs alongside Keith. Her ever-present smile, compassion and welcoming personality make her a special favorite with class members whenever she assists in program locations when needed.
Whether they are scheduling educational seminars for the local Parkinson’s community, interacting as class members, assisting as instructors, sharing their experiences as clinical trial participants, or creating innovative programming, Linda and Keith have turned what began as a vision for an underrepresented Parkinson’s population on the Massachusetts North Shore area into an expanding reality.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion I think is mainly shown in our nonprofit and the dozens of clinical trials that we both have shown in all we do.
Max said when he was training for his 1st marathon (he was a college baseball player) and hated to run!! I said if my dad can deal with Parkinson’s I can run a marathon.
What type of goals do individuals with Parkinson’s have when working with you?
People’s goals are many with working with us. We see that we are building a community. Many come who have never exercised and realize I must start somewhere. They meet friends, they have fun, they begin to move. They come to class or go bowling every Monday. They come together and they take to their own levels. We just help a little. The instructors are the best.
They have fun, they support, they direct, they introduce to others, they encourage and at times cheer lead with compassion and respect. Never want to make anyone feel uneasy.
Everyone is an individual. Some don’t want others to know they have Parkinson’s. We also have created a Welcome Folder which is filled with local and national resources. Pamphlets and rack cards. Articles that we have found to be helpful and many other things.
What type of training and how long are the programs?
We focus on creating exercise goals that improve balance and stability, endurance and agility, cognitive awareness, and strength training by ability levels.
Participants “compete” against their Parkinson’s symptoms similarly to an athlete in training. They challenge themselves and one another to consistently increase their coordination and mobility goals through:
- boxing
- step hurdles
- hand weights
- agility ladders
- Parkinson’s dance and yoga instruction
- resistance bands
- gymnasium ball throwing, kicking, passing
- limb stretches
- marching
- rhythm walking
- chair exercises
- proper posture and body alignment
- obstacle courses
See https://parkinsonsfitness.org/our-program/
What would you like to see as a future goal for your programs?
Some of my future goals are to keep reaching out for support and sponsorship to keep our classes at no charge. Continue to have yearly symposiums. We haven’t had one since Covid but prior would have about 150 attendees.
We have had smaller get togethers. Had 2 care partner luncheons which were very widely received. Hope to do 4 a year. Most everyone wants to meet once a month.
What events do you participate in?
We have participated in APDA Optimism walks. Parkinson Foundation Moving Days. MJ Fox Parkinson’s and IQ Boston events. Support group facilitator training with the APDA.
Several programs through the APDA-seminars etc.
Team FoxTrots in Swampscott, MA. MJ Fox has reached out a bit more to have us (Parkinson’s Fitness) to partner with them which is great.
How can someone get in touch? What is your website?
parkinsonsfitness@gmail.com or parkinsonsfitness.org
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I think my one statement would be to reach out to your community. See what is out there, talk to people. Find a support group that suits you.
How can others also become advocates for awareness?
Sometimes you must try several things. One size does not fit all. Each year so much more is discovered. Try to stay positive. It is all not doom and gloom.
Surround yourself with positive people. Negative will bring you down. And always find the humor.
More on Parkinson’s Fitness
“Whether you are diagnosed with Parkinson’s or someone who is curious about its effects on a person’s.
life, the following strategies are from my own experience living with the condition and are offered as a
guide for how to go on actively living.”
~ Keith Hall, Co-founder, Parkinson’s Fitness
- Learn to understand that your diagnosis is NOT a death sentence. However, it is the starting point.
for educating yourself through remarkable available research about how to live a long and productive life, albeit differently than how you had planned.
- Trepidation about the future is completely normal. Arm yourself with sufficient knowledge to
understand PD and its effects on you personally. You CAN build confidence that you are in charge!
- There are multiple pathways to explore for quality living.
- Build your team – general practitioners, neurologists, movement specialists, physical, occupational
and speech therapists, cognitive physicians, holistic therapists (i.e. massage, acupuncture, etc.) and, equally important, family members and friends. Leave no question unasked! Be your own advocate with all of these team members!
- Once your team “knows” you, things will seem to be pretty much in order. Continue to regularlyarrange appointments with a physical therapist, neurologist, physician’s assistant or clinical nurse.
- Whether you decide to “go public” about your condition or privately entrust that knowledge to
someone, becomes one of your choices. Example: Find someone who can assure others that you are not
drunk when your PD gives that impression due to unclear speech, slowed body movements or unsteadiness of gait. It is far easier to manage discussions when someone can help explain the characteristics of PD.
- Volunteer for clinical research tests. This gives you an opportunity to be on the “inside track” with
what the medical people are urging. PD is unique from person to person. Drug trials are important because much of your therapy, types of exercise and lifestyle disciplines will depend on how your body reacts to various drugs. It’s trial and error, but of extreme importance to research.
- Develop a medical strategy. Know what you are going to do or how to approach potential conflict.
For example, anesthesia can be difficult for a hospitalized PD patient. Cough and cold remedies affect medications: learn the importance of reading labels!
- Keep working with your physicians to find the correct medication combination.
- Take advantage of good physical therapy programs.
- FIGHTING BACK! Be more aggressive with exercise. Learn what is best for you and how to getstarted, especially if you have never exercised. Exercise is the critical component of quality living,and you need to train like an athlete! Do all that you can!
- The first level of involvement in an exercise program is to reach out to the neurologist, mobility
specialist, and/or physical therapist who will be monitoring your progress.
- Participating in a vigorous exercise program at a YMCA, Council on Aging, or with a personal
trainer, etc. may mean making lifestyle changes. Once you begin, you must stick with it! It is often a tiring and daunting task, but it pays handsome dividends! The facility of choice needs to meet your needs. The staff should have some knowledge of PD. Be prepared to feel somewhat isolated.
- Training like an athlete means consistency, focus, a sense of purpose, and a healthy dose of
competitiveness – even though you are competing against yourself. Athletes are disciplined and capable of meeting challenges straight on!
- Your ability to maintain your physical health and strength can be as simple as working with a few
resistance bands. There is a way for everyone.
- Plyometrics are specialized, high intensity training techniques that are used to develop athletic
strength and speed, and to import a brain and body connection.
- While getting used to your changing physical condition, be careful while moving around. Balance
is the key to safe living.
- Naps are approved and encouraged!
- Deal straight on with symptoms as they appear.
- Maintain your voice and swallowing levels as you would any other muscle use in the body – with
consistent, daily, focused practice.
- While adjusting to Parkinson’s, you may spend a lot of time alone. If you eventually become a safety
risk on the road, you must work out how to find drivers, so that you don’t allow yourself to become isolated.
- Depression can creep into your life. It is hard to overcome, but you can choose to do something about it!
- Keep your mind active.
- Stay involved in living life! As time passes, not staying active and engaged can lead to isolationwhich, in turn, leaves you uninformed about changes and improvements. Reach out to others. You may helpsomeone the way others have helped you.
- Seek out a PD support group with a good cross section of people. This is a good way to meet otherswho are sympathetic to your challenges. Don’t be afraid if you don’t want to acknowledge theuncertainty of your future. There is a lot of missing information about not finding the right support group.
Stay goal oriented!
Keith Hall