One Woman’s Journey with Parkinson’s Disease

Archive for April, 2019

One Woman’s Journey with Parkinson’s Disease

Posted on: April 17th, 2019

This post was written by Valerie Johnson

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.

Brain changing PWR!Moves classes for Parkinson’s disease at TCU

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.

Cathy:  I 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 hours after. 

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 to do.

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 self-confidence.