The Parkinson’s Foundation hosted a webinar on “Motor Symptoms Co-Management: Occupational Therapy and Neurology.” The speakers were a movement disorder specialist, occupational therapist, and a person with Parkinson’s disease (PD) The speakers reviewed the four cardinal motor symptoms of Parkinson’s (tremor, bradykinesia, rigidity and postural instability), discussed what the neurologist and occupational therapist can do to help, and how it feels to have these symptoms.
For more information and resources on Parkinson’s motor symptoms, please see Stanford Parkinson’s Community Outreach Program’s websites:
The recording will be available soon on the Parkinson’s Foundation website.
Please see below for notes on the February 9th webinar.
– Joëlle Kuehn
“Motor Symptoms Co-Management: Occupational Therapy and Neurology”
Speakers: Michael Okun, MD, movement disorder specialist, Fixel Institute, University of Florida; Lisa Warren, MHS, OTR/L, occupational therapist, Fixel Institute, University of Florida; Gretchen Rosswurm, person with Parkinson’s disease
Webinar Host: Parkinson’s Foundation
Webinar Date: February 9, 2021
Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach
Four Main/Important Motor Symptoms of Parkinson’s:
- Tremor: shakiness of hands, legs, chin
- Bradykinesia: slowness of movement
- Rigidity: muscle stiffness
- Postural Instability: balance changes (not as good as it was before)
These symptoms can help us diagnose the disease as well as the disease stage. The four symptoms are also part of the criteria for a Parkinson’s diagnosis, although there are other non-motor symptoms such as depression, anxiety or sleep deprivation that contribute to the diagnosis. It is important to also differentiate Parkinson’s symptoms from age-related changes.
- Tremors are not an age-related change, but there are multiple types of tremors.
- Parkinson’s tremors are a rest tremor seen most often when you aren’t using your hands.
- When you activate the muscle in your hand, it helps to settle or suppress the tremor, but may not take it away completely.
- People with tremors find it more irritating rather than debilitating.
Symptoms of tremor:
- Experienced mostly at rest
- Shakiness of hands, legs and chin
- Typically affects one side of the body initially, but can spread to the other side
- May fluctuate throughout the day and from day to day
What will the neurologist do to help?
- Spend a lot of time talking to patients to understand the tremor, and understand and check if it is at rest, to see if it is related to Parkinson’s.
- Tremors can be caused by medications or from previous experiences, so it is important to ensure it is a symptom of Parkinson’s
- Explore the idea of could we suppress this tremor with medication(s)
- Most common is dopamine replacement medication called Sinemet, which is a combination of carbidopa and levodopa
- Dopamine agonists can help activate receptors in the brain
- Can use these two in combination with each other
- Need to look out for side effects such as fainting or light-headedness, impulse-control
- Blocking acetylcholine receptors with mediation can also suppress tremors but it comes at the price of thinking problems
- Need to try to find a best combination of medications, but if can’t find a good medication solution, will try things such as deep brain stimulation (DBS)
What will the occupational therapist do to help manage your tremor?
- Will try to help manage stressors, as symptoms can increase with stressors
- Emotional stressors (being frustrated, anxious, nervous), and physical stressors (fatigue, pain, hunger)
- Tremor fluctuates throughout the day as these stressors change
- The occupational therapist can review strategies on how to manage stressors
- Timing an activity with when the medication is working well can help
- Occupational therapists can help with adaptive devices – weighted utensils, although if you do not have many tremors with action (in contrast to rest), the tremors may not be helpful, but if you do have tremors with action then it can be helpful. Other devices could be special pens.
What does tremor feel like to someone with Parkinson’s?
- It is one of the first symptoms Gretchen had of Parkinson’s
- It was a signal something is wrong and she felt vulnerable
- Something anyone can notice
- She has found ways to improve it every day
Tips on coping with tremors:
- Not everyone with Parkinson’s has tremors
- 20% or more of people with Parkinson’s may have medication resistant (or partially resistant) tremors, if that is the case, consider deep brain stimulation (DBS) or focus ultrasound therapy
- Tremors fluctuate, so manage emotional and physical stressors to the best of your ability
- Timing medication is also important to suppressing tremors
- Manage stress is important
- Meditation, adult coloring books, exercise, talking with friends and taking time for your hobbies can lesson tremors
- As we age, we get slower, and people without Parkinson’s can slow down
- When we get older, we choose accuracy over speed, which results in slower movements
- Bradykinesia is exaggerated and abnormal slowness
Symptoms of Bradykinesia:
- Difficulty starting movements
- Decreased facial expression
- Daily tasks take longer
How does the neurologist help you with bradykinesia?
- We focus not only on the medications and the speed, but also on the timing – when are good times of the day? We focus on when the good hours are, and when the not so good hours are
- We can optimize medicine simply by moving them closely together and using cocktails and trying to create a complimentary approach to speed people up
- Slowness can also affect eating, and other things in quality of life, so during medication optimization we send patients to the occupational therapist
What will the occupational therapist do to help manage your bradykinesia?
- Slow is not always bad. Extreme slowness can be very frustrating and affects quality of life but moving slower isn’t always bad
- Moving at the rate of speed your body is prepared to move at will make you more accurate
- A best strategy is medication timing, because it allows you to move quicker
- Make sure your medication is on before you are doing many activities during the day
- plan extra time for your task. It may take you longer to get ready so plan accordingly to avoid stress and don’t rush.
What does bradykinesia feel like to someone with Parkinson’s?
- She finds herself slower than she is used to
- It is frustrating
- There are ways to manage it fairly well
Tips on coping with bradykinesia:
- Plan to take your medication an hour before tasks that require fine dexterity
- You have to be flexible
- Allow extra time to accomplish tasks such as getting ready in the morning to avoid stress
- Exercise plans for specifically people with Parkinson’s is helpful
- Improve slowness and dexterity by tossing a ball, shuffling and dealing cards and tracing a design with a friend
- When muscles are tight it takes more effort to move, so you fatigue more quickly
- Stiffness can cause pain and muscle aches
- Stiffness can be attributed to age, usually with aging it is joint stiffness, but also in flexibility, it is sometimes difficult to determine if rigidity is related to Parkinson’s or if it is simply age-related
Symptoms of Rigidity:
- Stiffness throughout the body
- Can occur in one or both sides of the body
- May cause pain or cramping (dystonia)
How does the neurologist help you with rigidity?
- Important to remember that there are important symptoms that you can’t see, not every symptom is visual in the doctor’s office. We can’t see rigidity, we have to feel it
- Neurologists should move wrists slowly back and forth and feel for ticking, can look if the stiffness is related to the slowness
- It can be in the neck, wrists, arms, legs
- Very important for a neurologist to check for it because it can be disabling and painful
- Neurologist will optimize medications but will also make sure that the medications are taken on time, every time and not letting them wear off
- It takes a lot of back and forth
- We try to avoid using muscle relaxers
What suggestions can the occupational therapist offer to manage rigidity?
- It is harder to recognize the rigidity because you can’t see it like you can see a tremor
- It comes slowly and can become the new normal
- Exercise is important
- Stretching can be beneficial with stiff muscles
- Biggest help is medication on time. If medication gives you a benefit with muscle stiffness, taking it on time will help you move
- Occupational therapists can give tips on managing day-to-day life such as:
- When putting on a jacket or shirt, the stiffest arm needs to be the first one in and last one out, save the most mobile arm to do the reaching
- To help avoid spilling food off of utensils, exaggerate movement to help rotate arm and get the utensil level
What does rigidity feel like to someone with Parkinson’s?
- Gretchen Rosswurm: When I experience rigidity I don’t feel like myself, I walk differently and can’t present myself as I normally would
Tips for coping with rigidity:
- It is important to take medication on time every time
- Warm up and then stretch the muscles before putting them to work
- Stretch frequently
- Try seated yoga
- Focus on gait and arm swing
- Frequently practice handwriting
4. Postural Instability
- There are balance related changes due to age, so it is important to be able to differentiate if it is simply aging or postural instability due to Parkinson’s
- Want to exercise, stay active, work on core stability to help
- Stretching is incredibly important
- Being present and thinking about posture and walking can help with balance
- Arch your lower back to avoid slumping, stretch core muscles, sit up and stand straight as much as possible during the day
Symptoms of postural instability:
- Balance changes
- Can lead to falls
- Reluctance to participate in activities
What can the neurologist do to address postural instability?
- Do tests such as standing behind the person, pulling on their shoulders and ask them to try and maintain balance after the doctor quickly jerks their shoulders, will allow them to take a step backwards to prevent falling in the office
- Should be testing this at every visit
- If they are not doing these tests, be sure to request it
- Judging how many steps you have to take, and seeing if you can correct your balance can help the neurologists determine postural reflex
- The next big step is counseling and giving strategies to prevent falls
- Want to optimize medications, they can help with balance in the early and mid stages of Parkinson’s diagnoses and possibly later on
What tips does the occupational therapist have to manage postural instability?
- Start treatment early, it is never too early to see an occupational therapist because it can help prevent the problems
- It’s never too late either
- The biggest thing the occupational therapist will do is remove hazards in your home that may contribute to falls such as throw rugs or carpet lining.
- Using nightlights and other extra lighting may also be helpful
- Having grab bars around the shower and the toilet, and in places where falls are most likely to happen
- Multitasking becomes difficult, so minimizing the amount of things you are doing at once can help
- Sitting down while doing things instead of standing can help take away balance risks while doing other activities
- Dressing while sitting down, don’t stand on one foot while the other foot is in a pant leg
What does postural instability feel like to someone with Parkinson’s?
- It is something I worked on proactively over time
- I didn’t have balance issues when I was first diagnosed
- I use a balance board
- I work hard to maintain my balance because i know so much can happen and change your life when balance is off and continues to get worse
Tips to cope with postural instability?
- Do not depend solely on medications but integrate consistent, year-round therapy
- Spread out your therapy during the year, do not have bursts of therapy
- Work with the full team of doctors
- Continue to do preventative therapy to avoid it being a problem
- Use assisted devices when you need to
- Minimize multitasking when you are walking
- Focus on walking and moving safely
- Use a balance board
- Walk with big steps and with confidence
Note: The neurologist should recommend the patient to an occupational therapist for rehabilitation because from the beginning of a Parkinson’s diagnosis. It is imperative that the speech, occupational, physical therapists work together with the neurologists and are tracking the symptoms together and optimize medications and rehabilitative therapies.
For more questions, feel free to contact the two speakers from the University of Florida at:
Questions & Answers:
Question: How is Parkinson’s disease diagnosed?
Michael Okun: It is based on a clinical examination. We check for the cardinal motor symptoms that we talked about (tremor, bradykinesia/slowness, rigidity stiffness, and postural instability/balance issues), and we need to quantitate how much of those you have. We have criteria to decide whether you might have Parkinson’s or not, but we also tell people not to jump to conclusions right away. It is helpful to see how you respond to therapies (like dopamine agonists). There are symptoms that may appear 10-20 years before the diagnosis, and that might be a clue that you are headed in that direction.
There is a test called a DAT scan, which is a dopamine transporter scan which can help differentiate Parkinson’s from other disorders, and can show if something is wrong with your dopamine systems. There are also research modalities like MRI or PET scans which can also help.
Question: You mentioned taking medications ahead of a special event, how do you counsel patients in that area? Is this something they need to talk to their doctor about or is this something they can do on their own?
Michael Okun: It’s good to tackle your problems in a multi-disciplinary way, with doctors and therapists all included. Sometimes you can work out a regimen and a deal with your doctors that are a plan for how to do these things (such as if you like to go on long bike rides, or are a drummer and it is a known event). If it is more intense, sometimes taking more dopamine before will help.
Question: Are muscle relaxers the solution to rigidity, or Sinemet?
Michael Okun: By far the best way to help this is to adjust the medications, the dopamine and in some cases using botox. We don’t like to use muscle relaxants because they can be sedating and contribute to balance problems and falls. Sometimes people on muscle relaxers can’t function enough to get benefits of therapy, which makes it have more cons than pros.
Question: What is your advice for people who are hoping to maintain their exercise activity and muscle strength while still combatting difficulties from Parkinson’s?
Lisa Warren: We want to maintain these quality of life activities as long and as safely as possible. It’s important to be aware of the possibility of falling, so having a therapist that you see frequently will help you stay on top of your balance issues.
Question: How do people deal with anxiety around falls?
Gretchen Rosswurm: I try to be proactive and stretch and exercise and stay as strong as I can which will help prevent a fall. It’s good to learn how to fall safely if you can, especially if you are by yourself.
Lisa Warren: If an assisting device is recommended to keep you safe, it is important to use it and to be active than to choose not to do either.
Question: What is your handwriting program?
Gretchen Rosswurm: Paper and pen. I do it consistently and work on spacing and size. I’ve been taught through occupational therapy to do extremely large motions so that I can create legible handwriting and keep use of the hand. I also color. I’ve written things out of books, or writing exercises, you can write the alphabet, your kids names, anything that gives us the opportunity to find confidence in our handwriting.