Written by Mariel C. Kraus. OTR/L, LSVT-Big Certified for Movement Disorders
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. (1)
Almost everyone knows an older person with Parkinson’s Disease (PD). According to the NIH(2), Parkinson disease affects more than 1 million people in North America and more than 4 million people worldwide. In the United States, Parkinson disease occurs in approximately 13 per 100,000 people, and about 60,000 new cases are identified each year. According to Parkinson’s.Org, “YOPD affects about 10% of the people with PD in the United States. Young Onset Parkinson’s Disease (YOPD) is diagnosed before the age of 50. (3)
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 PD. 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 SPECIFIC 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 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 and 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 he 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 6-7 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 decongestion 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 2-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 that will. Therapy is most effective the earlier you begin. Finding a therapist that 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!
This story was written for Gig Harbor Living Local magazine, Volume V, No.4 and expanded on this blog for more details - read below.
There are about 10 common early onset signs of PD but only five of them are motor-function related. Some of the early signs of PD may be: 1. Hoarse voice that does not go away
2. LOSS OF SMELL
3. A mild twitch in a finger (like Michael J. Fox)
4. Difficulty focusing or controlling visual tracking
5. Sleep disturbance and waking nightmares which may even be violent
7. Overactive bladder
10. Daytime sleepiness
#9 and 10 coincidentally, are signs of depression too and often get diagnosed as depression first. There are more signs but if ANY of these are new to you or someone you know, please recommend medical consultation and examination by a neurologist specialized in PD.
Patients with Parkinson's disease are known to have a deficiency of dopamine in the brain. This deficiency causes the hallmark symptoms of the disease:
Sleep Disturbance: wild dreams, waking up throughout the night
Olfactory Disturbance: – sense of smell is lost or impaired.
Constipation: may occur due to the improper functioning of the autonomic nervous system much like bradykinesia affects the rest of the body
Mood Disorder: Depression and/or anxiety.
Tremors, Shaking, or Pill-Rolling gesture: usually begins on one side of the body, primarily the hand or fingers but in some it can be a leg. It may be experienced while at rest or when performing a task (Intention tremor)
Restless Leg Syndrome: Usually at night when trying to sleep.
Vertigo/Dizziness: may be due to ortho-static low blood pressure from quick positional changes
Fainting or light-headedness: low blood pressure is common with PD
Slowed movement (bradykinesia). Over time, Parkinson's disease may reduce your ability to move and slow your movement, making simple tasks difficult and time-consuming. Foot-steps may become shorter, you may find it difficult to get out of a chair.
Diminished Movement: Shuffling gait is the most commonly noticed diminished movement. Leg strides become smaller until one or both feet do not fully step in front of the other. Dragging your feet as you try to walk or freezing, the inability to lift your foot to take a step.
Voice volume: a decrease in volume including hoarseness and throat clearing.
Speech changes: Stammering, quickness and slurred speech, more monotoned.
Writing changes: your writing may become small (micrographia), also illegible due to an Intention Tremor.
Muscle stiffness: This may occur in any part of your body, it can be painful and limit your range of motion for reaching over your head.
Facial Masking: Inability to show expression, having a worried appearance. This affects smiling, eye/brow expression and blinking. It is a form of muscle stiffness.
Dystonia (Parkinson’s- related): This secondary dystonia may arise as a result of treatment with Levodopa in PD patients when the medication effect wears off, is too weak, or even too strong a dose. When Levodopa wears off (“Off” period), the most intense pain may be experienced, along with postural changes, cramping and twisting of the neck, hands, and lower extremities, mostly at the joints. Parkinson’s related Dystonia is the leading cause of pain and reduced quality of life for a patient. (4)
Stooped posture: Parkinson’s posture is stooped, head forward and down, may include rounded shoulders, which affects arm swing when walking.
Impaired balance and falls: mis-stepping by crossing over to the other side of the standing foot or retropulsion (shuffling backward)
Impaired Reflexes: Automatic response and reflexes are slower and automatic winging of your arms when you walk can be diminished or absent.
Living with Parkinson’s and the Emerging Role of Occupational Therapy, Jelka Jansa and Ana Aragon https://www.hindawi.com/journals/pd/2015/196303/
Mike Willett of Unique Moments Photography in Gig Harbor
Paul Burgess Selfie
Lion and Gazelle available online from Runninglibrarian.com