An interview with Susha Thomas, Physical Therapist: Spreading Hope and Awareness for Parkinson’s on December 27, 2023 by George Ackerman, Ph.D, J.D.
Biography
I am a Physical Therapist with specializations in Parkinson’s Rehabilitation. I have my Doctor of Physical Therapy from Wayne State University and I am the chair of the Parkinson’s program at an Inpatient Rehabilitation Hospital. I wrote a book on Parkinson’s with my tips to help manage symptoms to spread hope to this much needed population.
Can you tell me more about your organization?
I work as the Director of Therapy at an inpatient rehabilitation hospital in Houston, Texas. I am actively involved as a volunteer with the Houston Area Parkinson’s Society. My book, “Parkinson’s Disease- Reclaim your Life- Tips to help manage your symptoms” is dedicated to my mom, Saramma Zacharia, who passed away with colon cancer at the young age of 53. She was a nurse, and it was her daily mission to make sure she helped those who couldn’t help themselves. She taught me the value of helping the ones who are overlooked and showing compassion and kindness to everyone. In my experience working with a variety of diagnoses, the Parkinson’s population always seemed to be the overlooked population. People would tell them, “Parkinson’s is a progressive disorder, you’ll just keep getting worse.” However, when I started working with them and providing them tips to manage their symptoms, they saw the improvement and realized with the right strategies their symptoms could be managed. They were amazed at their progress after I started working with them. I saw this time and time again, and this inspired me to jot down my suggestions and tips into a book so it could spread hope to this population and remove the stigma that progress cannot be made with this diagnosis. My book was selected to be displayed at the World Parkinson’s conference which was held in Barcelona, Spain in July 2023.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Parkinson’s is my passion. There is so much that can be done to help manage the symptoms of Parkinson’s, but once the patient and families hear this is a progressive disease, they are not aware of this, and they give up. We need to spread awareness and hope that symptoms can be managed with the right tips!
Parkinson’s Disease happens because the brain is giving the muscles the wrong message, it’s telling the muscles to do things much smaller. This is because of a decrease in a chemical in their brain called dopamine- less dopamine means smaller movements. This translates to smaller steps, small handwriting, lower soft voice, freezing episodes, etc.
The brain is an amazing organ- it can create new pathways and be retrained! With proper training and using the right strategies this new pathway can be created and the patient will learn to do things bigger! This will help manage a majority of their symptoms. My book focuses on a bunch of symptoms and what patients can do to overcome those symptoms.
What type of goals do individuals with Parkinson’s have when working with you?
The main goal a lot of my patients with Parkinson’s have been to not be a burden to their spouse or caregiver and to get more independent to improve their quality of life. I had a patient several years ago, his wife’s main goal was for him to be able to write checks again as he used to be the one managing the finances and bills. With Parkinson’s his handwriting had become progressively worse, and it was so small that it became illegible. This made him depressed too because he didn’t want his wife to be burdened with writing all the checks. I worked with him on therapy, and we worked on writing bigger. I made a check template, and we practiced writing sample checks every day in therapy, emphasizing writing bigger every day. The next week, his wife came up to me with tears of joy, gave me a big hug and said, “He’s able to write checks again and I can read them! I never thought he’d be able to do this again!” It’s moments like this that inspired me to jot down my suggestions into a book.
What type of training and how long are the programs?
Physical Therapist programs are doctorate programs which are around 7 years of training. There are different trainings available for Physical Therapists for specializations in Parkinson’s Rehabilitation. LSVT BIG and PWR are just a few of these training courses. For LSVT BIG, patients are trained for 4 sessions a week for 4 weeks, and they continue these exercises for the rest of their lives. Exercise is as important as taking the medications needed for Parkinson’s.
What effect can it have on an individual with Parkinson’s?
I have seen amazing results in my patients by just doing things bigger, anytime they get stuck I tell them to stop what they are doing, and then to do the motion bigger. It works every time.
What would you like to see as a future goal for your programs?
I would like the word to get out, do not let the stigma of the disease get to you. If you do things bigger, your brain can rewire itself and give your muscles the right message. I would love to be able to spread awareness through media coverage or be picked up by a talk show to get the awareness out to millions who need it.
What events do you participate in?
I am a volunteer at the Houston Area Parkinson’s Society. I also conduct several continuing education events for clinicians including therapists, nurses, case managers, etc. on Parkinson’s Disease and Rehabilitation. I was featured in the Houston Daily in April 2023 for spreading awareness of this disease. I speak at Church events and at Parkinson’s support groups to spread awareness of this disease and tips to manage symptoms.
How does this also assist the caregivers?
My book covers information for caregivers as well as they play a vital role in a patient’s recovery and journey with Parkinson’s. It goes over how to arrange your home and furniture to improve safety, how it’s ok to remind loved ones with Parkinson’s to do things bigger anytime they are stuck as their internal cueing system is affected with Parkinson’s and they depend a lot on external reminders. It also goes over memory strategies to use if their loved ones start experiencing forgetfulness.
How can someone get in touch? What is your website?
My book, “Parkinson’s Disease- Reclaim your life, Tips to help manage your Symptoms” is available on Amazon. I am also available on Instagram at #parkinsonstipsbysusha
How can others also become advocates for awareness?
Every little bit helps. Even if you think your little contribution won’t help, you’ll be amazed at the difference it makes in a person’s life. I’ve had patients come up to me crying with joy at being able to accomplish things they never thought possible using the tips I provided them. I never thought I could publish a book, but I knew I needed to spread awareness beyond my clinic and I’m glad I did. People from around the globe have contacted me letting me know that my book made a difference in their lives, and that makes all my efforts worth it.
What progress have you seen in the scientific world over your professional life that has helped Parkinson’s patients?
So much progress! There is so much technology out there right now that helps patients with Parkinson’s. There are apps that are available to help with improving voice quality, there are metronomes available that assist with walking to a beat to help combat some of the freezing episodes commonly seen in Parkinson’s and much more. Boxing is a great exercise for Parkinson’s patients. Exercise is the only proven thing that helps manage symptoms- so get out there and get active!
In your opinion what is the key to effective advocacy?
Persistence. Keep reaching out to organizations, media- whoever you can spread awareness and hope for this disease. Don’t give up, keep trying and one day we will find a cure.
How can we better fundraise to support a cure for Parkinson’s?
Get media involvement and involvement of political leaders.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
My family is a huge supporter of my advocacy for Parkinson’s awareness. My husband is also a PT and spreads hope, and my 2 children illustrated my book on Parkinson’s.
Why should people who don’t have Parkinson’s care about this?
Parkinson’s can happen to anyone. It is a disease that is usually diagnosed late after symptoms have been presented for a while. By getting community awareness early on- they can identify symptoms of loved ones early and see a neurologist to confirm diagnosis earlier. The earlier this diagnosis is identified and treated, the better chances for recovery with this population.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes, I’ve had friends of family members affected by Parkinson’s Disease, not any immediate family members.
If you had one song that would tell us more about you or represent your life which song would it be?
“You are my sunshine”. My mom used to sing this to her patients when they started to lose hope, it always brought a smile back on their faces, as they knew she cared for them. I care so much for the Parkinson’s population, and this song reminds me that even when skies are gray, their progress makes me so happy, and the sun keeps shining on them as we spread hope of this disease!
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
I hope I can continue to spread awareness of this disease globally! Everyone needs to know that with the right tips and strategies symptoms can be managed, quality of life can be improved and ultimately caregiver burden will be decreased! Together let’s remove the stigma of this disease and bring back hope to this community!