“Parkinson’s Disease - A Story of Not Letting your Diagnosis Define You”

By Marc Phillips - PT, DPT, OCS, CSCS  

Parkinson’s Disease (PD) affects many people including friends and families of those diagnosed with this progressive disease. According to parkinson.org, over one million people in the United States are affected directly by the disease as they live with it.  Also, 60,000 people are newly diagnosed each year.  Men are 1.5 times more likely to have Parkinson’s disease than women. As we are in Parkinson’s Awareness Month, we decided to write a blog about some of the signs and symptoms that go along with the disease as well as some helpful hints and ideas to slow the progress of symptoms.   

Signs and Symptoms of Parkinson's Disease:

• Tremor – shaking in your hand or chin may be a sign of PD; be aware shaking can also be caused by stress, medication side effects or after exercise 
• Poor Balance – due to shuffling gait pattern that comes with PD, balance can be significantly affected due to lack of coordination in the leg muscles 
• Stooping – leaning over or hunching more than normal could be a sign of PD and can lead to a higher risk of falling due to changing your balance 
• Small Handwriting – micrographia can be a sign of PD and usually occurs gradually and is difficult to detect in early stages 
• Loss of sense of smell – this is an interesting one especially in the time of COVID-19, but losing your sense of smell can be a sign of PD 
• Difficulty sleeping – difficult to determine if this is caused by PD, but can be an early sign of PD 
• Dyskinesia – poor coordination and movement patterns; commonly noted in using a computer or other fine motor activities including eating and writing 

It isn’t always easy to admit that something may be wrong, but if you have more than one of the symptoms listed, you may want to be evaluated by your doctor to determine if you may have PD.  If PD is detected early, the outcomes and prognosis tend to be much better.  As I alluded to earlier, PD is a progressive disease and affects everyone differently and at a different rate.  In order to slow the progress of the disease, there are several steps any individual can take.   

Activities and Treatments That Can Help Reduce the Effects of Parkinson's Disease:

• Balance Therapy – physical therapists who are trained can prescribe and carry out exercises to help maintain or improve individual’s balance to reduce the risk of a fall that could lead to a hospitalization 
• Exercise – find what works best for you and then DO IT!  Regular exercise has been scientifically proven to slow the rate of progression of PD, specifically forced exercise on a bicycle.  Check out this link to a video that shows the changes that occur in the brain with cycling 3 times a week for 45 minutes at 80-90 RPM. (https://www.theracycle.com/news/pd-patients-use-forced-exercise-to-slow-diagnosis/) 
• Medication – there are medications out there that can help to reduce the symptoms of PD, however there is no cure at this time. 
• Deep Brain Stimulation (DBS) - a recent treatment improving the ability to control symptoms; first approved in the late 1990s, this treatment is now more widely used and can help to decrease medication usage as well as tremors and other movement disorders. 
• Physical Therapy - According to parkinson.org, “Physical therapists help people living with PD maintain or regain mobility. They develop customized exercises to address walking, balance, posture, flexibility and strength challenges associated with Parkinson's. A physical therapist can also provide ways to prevent freezing and falls.” 

A Patient's Journey With Parkinson's Disease:

Parkinson’s Disease can significantly change the trajectory of one’s life, but it does not necessarily need to define any individual.  I would like to share the story of a friend of mine (with his permission) and his journey over the past dozen years since he was diagnosed with PD. 

He originally showed up at the clinic to receive physical therapy for low back pain and general stiffness.  As he began to attend regular visits at the clinic, it became apparent that there was more going on than just low back pain and stiffness.  After a few weeks he was referred back to his doctor, much to his chagrin to be reassessed and referred to a neurologist for further testing.  Ultimately, he was diagnosed with early onset PD and his path with PD began.  He was a fighter and was not going to take this diagnosis sitting down.  He asked me if I could still be his physical therapist to which I said, of course.  I was still a young physical therapist only having a year and a half of experience in orthopedics so I had some studying to do.  I dedicated myself to learning everything I could to help my patient.   

I began by studying my school notes and textbooks as I was a new graduate.  I looked to find out if there was any current research and found that exercise, specifically cycling, was highly effective in slowing the progression of PD and its effects.  Then we started in with physical therapy.  My patient was struggling to cope with his new diagnosis, but was determined to continue doing the things he loved to do including building anything he could put his hands on.  Ironically, he owned a business that helped people with mobility needs by building ramps, decks and modifying construction to make it more accessible to those with disabilities.   

He went to every exercise class, support group, and informational meeting about PD and learned everything he could.  I joined him for many of these activities and we even traveled to Kansas City together as I lectured about the positive impact exercise has on decreasing the progression of PD.  Over the past decade, my patient has become a good friend and he has endured many other health issues including multiple surgeries, a bad car accident and a stroke.  Despite all these challenges, he has continued to exercise, engage in his hobby of building and build his relationships with family and friends. 

He has been a wonderful example of perseverance and hard work.  He has not let a diagnosis define him.  He has done everything in his power to continue on in his life with adaptations as necessary.  His dedication to beating the odds has been an inspiration to me.   

It is my hope that during this month as we recognize Parkinson’s Disease Awareness, that people will understand PD is not a defining disease.  With more information about PD, new treatments are being developed and old treatments are being improved allowing for a significant increase in quality of life for those struggling with the symptoms of this disease.  I encourage you to reach out and seek help so that you can continue doing what you love and spending time with family, friends and those that mean so much to you. Please reach out to me or one of our wonderful physical therapists for help at Fyzical Therapy and Balance Centers.