The Lion and the Gazelle
April is Parkinson’s Awareness Month, and it is very fitting that it is also Occupational Therapy (OT) Month because it is this allied health profession that has been instrumental in improving the function, independence and quality of life for folks with not only Parkinson’s disease (PD) but all neurologic disorders.
Almost everyone knows an older person with Parkinson’s disease. According to the National Institute of Health, Parkinson’s affects more than 1 million people in North America and more than 4 million people worldwide. In the United States, PD occurs in approximately 13 per 100,000 people, and about 60,000 new cases are identified each year. According to Parkinson.org, Young-onset Parkinson’s disease is diagnosed before the age of 50 and “affects about 2 to 10 percent of the 1 million people with PD in the United States.”
YOPD is diagnosed as early as 30 years of age when most are working, trying to manage their career, starting and raising a family. This diagnosis can have a devastating effect on family finances, relationships and emotional well-being while trying to cope with the daily symptoms of Parkinson’s.
When first diagnosed, dopamine agonists are prescribed. Often, patients feel better when they start taking medications, so they don’t feel they need to make the time for therapy. Before they know it, they need to increase the dosage and soon develop dyskinesia from the increased dose of dopamine agonists. Dyskinesia is unwanted, uncontrolled, excessive movement, which happens when the dosage ceiling is met prematurely without movement therapy. The next step is a Deep Brain Stimulator—an implanted type of pacemaker, which also has a voltage ceiling.
Parkinson’s treatment should not be limited to medications (dopamine agonists) because movement is important, and special sequential movement is key such as the internationally acclaimed LSVT- Big program, which is known to slow down the progression and can reverse the disease process when performed at the highest possible intensity and range of movement.
I opened my private practice to reach out primarily to the young-onset Parkinson’s community because the current rehab models and support groups have mostly been geared toward seniors with PD. As an occupational therapist, it is an honor for me to help people with neurologic disorders, and every patient has a journey that I get to be a part of.
In this article, I am privileged to tell the story of Paul Burgess, one of my young-onset PD patients. He hopes that his experiences will help someone in our community to seek out and get the right treatment and to break the stigma of being young with Parkinson’s. Young onset PD is more intensely progressive, so it is imperative to start treatment immediately. Treatment needs to be more proactive than pharmaceutically treated alone.
Paul is a creative director at Boeing. He has been a graphic artist for 30 years and started experiencing the silent symptoms of PD years before he was diagnosed. His wife Victoria is a Gig Harbor real-estate agent and was looking for a different treatment approach for Paul’s symptoms, so she recommended occupational therapy to her husband.
Paul’s chief complaint was a resting hand tremor he could not control. In contrast, an intention tremor happens when a person initiates an action or during the use of that limb (or other body part). The hand tremor made him anxious and self-conscious around others.
During the initial evaluation he shared, “I have become anxious over little things. I have never been a bashful guy. I am used to public speaking, but now I am nervous about it. I don’t want people to be tuned in to my tremor instead of what I am saying.”
Paul first noticed the silent symptoms of PD about six to seven years ago with distorted olfactory function. “I started smelling burnt milk constantly for a week, then it would dissipate and I would latch onto another scent for yet another week, and this went on for about a year. I went to my doctor and he discounted my symptoms as age related (in my early 40s) and gave me a flush of nasal decongestant fluid. After that, I lost my scent sensitivity altogether.”
Not being able to smell impacted his love of fine cuisine, which he and Victoria enjoy at home and in their travels. Paul also presented with other classic Parkinsonian symptoms, such as restlessness, disturbed sleep and dystonia (pain and exhaustion because of the constant muscle contractions). He shared, “I can’t get comfortable, so it may take me an hour to fall asleep. It is difficult for me to turn in bed to find a comfortable position. I wake several times with arm and back pain, and I have to get up for work.”
Paul experiences other common PD symptoms such as shoulder pain and arm fatigue; neck pain and stiffness; and lumbar pain on waking. Balance was affected when he started OT, as well as asymmetrical movement and loss of arm swing when walking. Driving was difficult when trying to use the foot pedals for acceleration and breaking in stop-and-go traffic during his two-hour daily commute to Seattle. He has an occasional right restless leg at bedtime.
Paul has made great gains, learning how to control his tremor, and arm swing has returned. His story may help others to recognize the early symptoms and to learn that if your doctor is not listening, find one who will. Therapy is most effective the earlier you begin. Finding a therapist who is experienced with Parkinson’s is a better use of time and your insurance benefits.
I have adopted Christopher McDougall’s inspirational quote of the lion and the gazelle: “Every morning in Africa, a gazelle wakes up. It knows it must outrun the fastest lion or it will be killed. Every morning in Africa, a lion wakes up. It knows it must run faster than the slowest gazelle, or it will starve. It doesn't matter whether you're the lion or a gazelle—when the sun comes up, you'd better be running.”
Whatever the age of a person with Parkinson’s, movement is survival! They need to wake up every morning deciding whether they will be the lion or the gazelle. Whichever one they choose, when the sun comes up, they need to be moving to stay ahead of Parkinson’s disease!
To read the expanded article and learn about the early and silent symptoms of Parkinson’s and specialized treatments, visit IntegrativeBody.net and click on “Blog” at the top of the page.
Three Numbered Facts:
1 million: The number of people in the U.S. who have been diagnosed with Parkinson’s.
30: The age at which Young-onset Parkinson’s disease can first be diagnosed in a patient.
60,000: Approximately how many new cases of Parkinson’s are identified each year.