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Everyone’s experience with Parkinson’s disease is different. Symptoms and disease progressions vary greatly among individuals with PD. Here is an interview with Cathy Clark. From competitive swimming to being diagnosed with early onset PD, here is one woman’s journey through PD and how she returned to exercise later in life.
Balance Therapy: Hi Cathy, thank you for sharing your insight and experience with us. Let’s dive right in. Tell us a little bit about your background.
am 65 years old, and have had Parkinson’s Disease for 21 years.
Growing up in Fort Worth, Texas, I had an
active lifestyle and began swimming competitively at age 9. I continued swimming while attending High
School and College. In 1977, I began teaching Kindergarten in Ft.Worth and went
on to received a Master’s degree from Texas Christian University, specializing
in Early Childhood Education. I am a proud Mother of one son, Scott, born in
1984, a constant blessing in my life. I continued teaching until retiring in
2008. (33 years)
I enjoyed working in the yard, mowing and gardening,
water sports, sail boarding, and skiing. In the summer months I taught private
water safety and swimming lessons. I also joined the Granbury Seals Swimming Team,
in 1999. I continued swimming and coaching until 2012.
Balance Therapy: How has your life changed since your diagnosis?
Cathy: I believe my active early life, has had a
positive impact on living with Parkinson’s Disease. In 1997, age 44, I was
strong, and in excellent health, when I noticed the tremor in my left hand. Two
years later. I was diagnosed with Parkinson’s Disease and began taking a
dopamine agonist, Permax. Various medications were successful in controlling my
symptoms. Over the years, through trial and error, I tried most of the common
drugs at one time or another.
Balance Therapy: How has your lifestyle changed to improve your PD symptoms?
Cathy: In 2006, I learned that too much protein sabotaged
my medicine, resulting in “OFF”spells.
These “OFF” times produce severe body pain and hinder movement. I began a limited
protein diet, cautiously monitoring protein amounts. Servings of 4-5 grams of protein,
spacing adequate amounts throughout the day, scheduling meds, carbidopa /
levodopa 1 hour before protein or 2
Balance Therapy: What treatments have you tried besides medication?
Cathy: In 2013, after dyskinsia (a side effect of
carbidopa/levodopa for some patients) became debilitating, I had successful
Deep Brain Stimulation, ridding me totally of dyskinsia, allowing for a much better
quality of life. PD continues to advance, and medication is becoming less effective.
Symptoms that are not helped by DBS are “ freezing”, impaired speech, illegible
handwriting and balance problems. In spite of recovering from several serious
falls, I try to have a positive attitude, remembering all of the things that I
still can do.
Balance Therapy: How did you discover physical therapy for treating Parkinson’s?
Cathy: I met Dr. Valerie Johnson in October,
2018, at the Parkinson’s Foundation Moving Day. Dr. Valerie was in her booth,
in person, greeting everyone with her memorable smile. She displayed confidence
and self assurance as she took time with those that stopped by, answering
questions with certainty and encouragement.
I was having difficulty speaking and she listened
patiently, expressing support, as well as a sincere interest in understanding
my concerns. Dr. Valerie instilled in me knowledge and thoughts of another way.
I experienced renewal in faith, hope, and spirit from her motivational energy.
Dr. Valerie Johnson, a Physical Therapist,
specializes in Balance therapy and works with Parkinson patients. She is aware,
and understands, the multifaceted symptoms and complications of Parkinson’s
disease, effecting patients in different ways. Her perspective is that over
time, a Parkinson’s brain looses connection with the body, causing progressive
symptoms. She believes that with time and work, we can “wake -up” the brain and
re-learn to do things that we haven’t been able to do, or that have gotten hard
Balance Therapy: Thank you Cathy! What role has exercise played in managing your Parkinson’s disease?
Cathy: The reality
of the brain- loss connection became very apparent to me, as the new exercises
were introduced . A rather simple stepping
exercise left me totally LOST! I just
did not / could not understand and I could not make my legs, feet, (or brain) do
it! Dr. Valerie, poised and graceful, is very deliberate demonstrating her
expectations. I try to watch and listen carefully and to follow directions, remembering
the proper movement, to hold my posture, to widen my steps. But this time, I
did not get it. Feeling extremely confused, I ask her to show me and tell me again…
Slowly… and again, and a third time. She patiently demonstrated, stood beside
me, doing it with me, talking me through the steps, slowly, praising my effort
and encouraging me with comfort in her voice, In her patient and gentle manner,
she helped me work through the twisted reality going on in my blank mind. I worked
on it at home, and finally did it, correctly, and several sessions later
I was swimming
again. I appreciate Dr. Valerie and her commitment to the community and I
benefit greatly for her positive energy!!!
In addition to private physical therapy, Dr.
Valerie brings the same confidence, support and enthusiasm to group exercise
classes. Now I participate in weekly PWR!
MOVES, (Parkinson’s Wellness Recovery MOVES). Valerie teaches PD
community-based exercise classes that and are funded by a grant from the
Parkinson’s Foundation of DFW. This program is for those affected by PD. It is a
specific skill-training program to maintain or restore skills that deteriorate,
interfering with everyday movement. Dr.Valerie
Johnson is nurturing, and encouraging to each class participant.
I also recently started attending a weekly
boxing class led by Scott Morris, Round 9 Kickboxing Fitness . This is a
similar format to improve balance eye-hand coordination, endurance and
“Keep up the great work, Val! I went to you for about two years for chronic vestibular balance and dizziness issues, and now I am so much better and these issues do not hinder my lifestyle. I think your optimism and energy were as important as the vestibular rehab exercises. You were more than just a physical therapist, but a PT/Life Coach! Thanks again for everything!”
“Valerie, you are the best! You put up with my whining and encouraged me every time. I did my homework because you care so much! I’m still balancing -it’s become a natural routine for me-thanks to every there (360 Balance, Austin, TX). I’ll be back if I need fine tuning.”
“When the world around you is in a spin… It’s nice to know that someone’s got your back! Thanks for being that someone!”
It was an hour session that enabled me to use my limbs that were going dormant. I shouted out YES!
“Valerie, you are doing great things!!! I wish my dad was your patient. He does not have Parkinson’s, but he has significant balance issues. PT has helped him immensely. I wish that you could evaluate him someday. You are one of the best!!!! I miss working with you!”
But the most important gift she gave me was a different understanding, on an emotional level, of the value and importance of the exercise in which she was training me. For instance, she summarized that she was ‘retraining my brain’
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