Empowering Movement and Navigating Parkinson’s Disease: A Client Spotlight

What is Parkinson’s Disease?

Parkinson’s is a chronic and progressive disease, it occurs when there is a loss of brain cells that produce dopamine. Dopamine, is a chemical that coordinates movement, and Parkinson’s is often referred to as a movement disorder as it is characterized most commonly by motor symptoms: tremors (involuntary shaking or movement), bradykinesia (slowness of movement), hypokinesia (smaller, shuffling of movements), rigidity of muscles, stiffness, balance and walking problems. But Parkinson’s also has an array of non-motor symptoms some of which are: sleep problems, lightheadedness, constipation, depression, anxiety, memory loss, and fatigue. 

Our Client Alison’s Personal Story:

Diagnosis: "I was diagnosed with Parkinson’s Disease in 2015, when I was 53 years old.

I had developed a crick in my neck that wouldn’t ease up so my PCP sent me to see a spine specialist.  He looked at my neck and could see nothing wrong, he suggested I go to a Neurologist (unbeknownst to me he had noticed a tremor in my hands).

When I went to the neurologist for that first appointment I didn’t think I’d get a diagnosis. I thought he might do some blood tests or something, but wasn’t too worried.  Instead, the neurologist ran some simple tests that involved tapping my fingers and feet, and to my horror I had difficulty doing these really easy tasks.  After he’d finished running the tests, the neurologist just turned to me and said, ‘You have Parkinson’s.’  You could say his bedside manner was somewhat lacking.  His delivery was so cold.   I was by myself and had just received one of the worst diagnoses that a fit, strong 50-year old Ironman Triathlete could ever have.  I called my partner, Phil, from the neurologist office; Phil immediately made arrangements to come home from work.  I left the neurologist with a heavy heart, a prescription for some drugs that I didn’t know what they were for, and orders to go back to the neurologist in 4 months.  

When I got home I went out for a run.  I always run when I’m stressed.  I have no idea what will happen when Parkinson’s eventually takes that away.  When I got back from my run Phil was home and I have never cried so hard as he hugged me.

I was embarrassed about my diagnosis because, as far as I was concerned, it was an old man’s disease. How could I have developed this disease that makes you weak and vulnerable?  Unfortunately I will never get an answer to that question.

Initially I was angry, very angry.  But anger is not so bad for me as it makes me focus.  I needed to pick up the pieces and figure out how best to help myself.  Parkinson’s is a nasty disease because it takes away your control; I was going to do my best to maintain as much control as I could.

I took to reading as much as I could to learn about PD.  During this initial learning phase the one thing I became very aware of was the importance of exercise.  There’s no proof, but it is believed a heavy exercise load may be able to slow the disease progression.”

The Road Ahead: “I then got very lucky as a friend of mine introduced me to Brett Miller at 110Fitness in Rockland MA.  Brett has the largest facility in the US for providing boxing and other fitness classes for people with Parkinson’s. I started going to work out with Brett on a weekly basis (and still do), focusing on boxing and high intensity work outs.  Brett and the 110Fitness organization are amazing and I have learnt a lot from them.

I also engaged a friend of mine, Sunny Schettler, as a personal trainer, as I realized I need to do more weight training than I used to.

I shared my diagnosis with my niece, who lives in the UK.  She happens to be a nurse, so she did some research for me too.  It was my niece, Hannah, who told me that there had been some interesting work done in the UK and Australia around Pilates and Parkinson’s.  

My next port of call was to find a Pilates organization that would understand what I was trying to do.  I struck gold; The Pilates Rx has been absolutely wonderful, Dr. Jess Forgione in particular, devising a program that enables me to re-connect with my body, as well as isolate areas of my body that PD tends to impact to a greater extent (for example, the left side of my body is stiffer than my right).

Along with all this bodywork, I still run and cycle with my friends, although I’m not swimming at the moment.

Bottom line, I work out 7-days a week supported by a wonderful group of trainers and a fantastic group of friends.

Each exercise regimen has a different impact on my response to the disease and I have found they are all complementary.  Having Parkinson’s is hard work, but understanding I may have a slight influence over my future keeps me going.”

The Pilates Rx Treatment Plan:

Physical Therapy Treatment Intervention and Goals for Parkinson’s:

• Amplitude Training: Overexaggerated physical movements to retrain muscles and slow progression of hypokinesia.

• Reciprocal Movements: Side-to-side, left-to-right patterns, e.g., walking, swinging your arm while taking a step.

• Balance Work: Reduce postural control impairments, improve balance and gait.

• Mobility, Flexibility, and Stretching: Counteract rigidity, stiffness, improve range of motion.

• Strength Training: Building strength in each muscle group with progressive resistance training to reduce motor disease severity.

These treatment interventions and goals are woven into Alison’s Pilates sessions.

Pilates Principles and Applications to Managing Parkinson’s:

• Breathing: Cuing more efficient breathing is crucial for a patient demographic experiencing tightness, stiffness, and shallowness of breath. Good breathing habits also have mental health benefits in reducing stress and anxiety.

• Centering: Our center, or core, builds a strong, solid basis for movement and a foundation for maintaining balance.

• Concentration, Control, and Precision: These principles heavily focus on the mind-body connection and enhancing it through mindful movement. Pilates exercises, done with repetition and consistency, strengthen the way your brain communicates with your body. This ties into aforementioned reciprocal movements and patterning, aiming to enhance the automaticity of healthy movement patterns through conscious effort.

• Flow: Encouraging the body to move with ease and fluidity ties into higher amplitude, incorporating large full-body movements into our sessions to enhance proprioceptive input. Pilates cuing is another way to help enhance flow.

In addition to these guiding principles, Pilates equipment offers support and feedback during movement. The equipment can be adjusted individually to each client based on their needs, making Pilates accessible to all.

We also understand the importance of creativity,  and being able to adjust on the fly: Alison’s presentation can vary widely based on the timing of her meds, etc. Each session is catered to how she presents that day in addition to our longer term goals.

Alison’s Pilates Journey:

“I have found that Pilates in particular helps me get through my ‘off periods’.  

I take medication throughout the day to ensure that my body has the supply of dopamine it needs to function (PD symptoms are brought on by the death of dopamine producing neuro-transmitters; I have to replace that dopamine with drugs that mimic what dopamine does).  Unfortunately, this artificial dopamine is passed to the brain from the gut using the vagus nerve, and this is not a reliable mechanism.  Any food or liquid in my gut will have an impact on whether an ample amount of dopamine is transmitted or not.  If I don’t get enough dopamine then I will go through an ‘off period’ a seize up – I am literally unable to walk.

When I’m in that ‘off’ state the exercises on the Pilates reformer  somehow allow me to continue to access the muscles and tendons in my legs and my glutes, and for some reason generally makes the ‘off period’ shorter.

I’ve been lucky enough to invest in my own Pilates equipment, I can use it whenever I feel myself going into that ‘off’ state.  Having said that I recently had to travel; Dr. Forgione provided me with some floor exercises that could easily be done in hotel room, the only equipment I needed was a workout band that could be folded and stored in my pocket book.  These floor exercises mimicked isolating the different muscles as can be done on the reformer,

Throughout my Parkinson’s journey I have received excellent information from the Michael J.Fox Foundation, the Davis Phinney Foundation, and local PD support groups.

Living with PD is not a death sentence, but it certainly presents a number of challenges on a daily basis.   With assistance from my wonderful trainers and friends I can achieve something similar to an ordinary life; but it takes constant work.  Thank you to everyone who is helping me as I go on this journey.”

Conclusion:

It has been a pleasure working with Alison, collaborating with the other members of her team, and being an integral part of her wellness journey. Her unwavering determination and commitment is an inspiration. I hope this blog post, by sharing her story, can contribute to raising public awareness about the transformative power of movement, in particular through Pilates, for enhancing the quality of life for those living with Parkinson’s.