Tips For Better Living with Parkinson’s – Webinar notes

Tips For Better Living with Parkinson’s – Webinar notes

On June 24, the Davis Phinney Foundation offered a webinar on tips for better living with Parkinson’s disease (PD).  In a question and answer format, Dr. Michael Okun, a movement disorder specialist, discussed topics covered in his new book “Living with Parkinson’s Disease: A Complete Guide for Patients and Caregivers.”

The moderator was Dr. Soania Mathur, an internal medicine physician.  The speaker, Dr. Okun, is a neurologist at the University of Florida in Gainesville.  Although there is much more included in this new book, in just one hour Dr. Mathur and Dr. Okun covered:

  • How to get a confirmed diagnosis.
  • Is it Parkinson’s or parkinsonism?
  • Non-motor symptoms impact on quality of life.
  • Exercise is as impactful as DBS surgery.
  • Importance of physical and occupational therapy.
  • Signs of swallowing difficulty and prevention of aspiration, including a new device available on Amazon.
  • Be persistent when treating constipation.  It can take years, but it is worth it.
  • Decision tool for when to start medication.
  • Adjusting medication is an individual and continuous process.

This webinar was recorded and can be viewed here.

If you have questions about the webinar, you can contact the Davis Phinney Foundation at 866-358-0285 or via their online form.

These topics were discussed in this webinar.  For additional information on them – including downloadable guides, links to online resources, webinars and podcasts – see these pages on the Stanford Parkinson’s Community Outreach website

Now… on to our notes from the webinar.

– Denise


Tips for Better Living with Parkinson’s

Presented by the Davis Phinney Foundation

June 24, 2020

Summary by Denise Dagan, Stanford Parkinson’s Community Outreach

When people hear the words “you have Parkinson’s disease,” most begin imagining the end. But that’s not how the story usually goes. Many people with Parkinson’s can and do live well with it for decades. In fact, some find they live even better with Parkinson’s than they did before their diagnosis. The key to doing that is to take actions every day to live a healthier, more connected, and more meaningful life.

Dr. Mathur:  Please explain why people with PD need a guide like your book, “Living with Parkinson’s Disease: A Complete Guide for Patients and Families.”
Dr. Okun:  Now that I’m older I find the things I’ve written for patients have been more widely read than any research paper written during his career.  His previous book, “Parkinson’s Treatment: 10 Secrets to a Happier Life” turned into a best seller, much to his surprise.  Following its success people asked him what’s new in PD research so he wrote a book about that.  He heard from people they had expected more guidance from their neurologists how to live well with PD, but that wasn’t happening.  So, Living with Parkinson’s Disease is sort of the third of a series about living well with PD.

Dr. Mathur:  In the first chapter you talk about the importance of a correct diagnosis.  Being involved in the PD community for so many years I have heard many stories about the difficulty of getting a diagnosis.  Why does this happen?
Dr. Okun:  It seems like we should be much further down the road, but there is a huge shortage of movement disorders specialists.  We only train about 40 new movement disorder specialists annually for the most rapidly expanding neurological disorder on the planet.  There is no mechanism or funding to manufacture these specialists – worldwide.  It is not just a US problem.  There is a shortage of specialists in many fields.  
General practitioners and general neurologists are often not educated in Parkinson’s and all the various parkinsonisms so they get the diagnosis wrong.  Or, if they get the diagnosis right, they convey to the patient that is it not a livable disorder, which is devastating for families.

Dr. Mathur:  If someone suspects they have Parkinson’s or have vague neurological symptoms, is it important for them to see a specific type of physician?
Dr. Okun:  Start with seeing a specialist, like a neurologist.  If you have the opportunity, see a fellow who has had further training in movement disorders.  If not, try to see a neurologist who spends at least half their practice seeing those with Parkinson’s patients and other movement disorders. 
There is a lot of talk about changing the way we train general practitioners so they can recognize what they’re looking at when they see neurological symptoms associated with PD and be able to guide families in the right direction.

Dr. Mathur:  You describe the motor symptoms of the disease.  Please discuss the non-motor symptoms associated with PD.
Dr. Okun:  If you go to a movement disorders specialist, they will look at your movement, but they should look beyond that.  Parkinson’s disease is the most complex disease in clinical medicine because it has the largest number of motor and non-motor symptoms as a response to the lack of dopamine.  There are all sorts of symptoms that turn on and off over time.  That doesn’t happen in other diseases.  To treat PD we put electrodes in brains and pumps in stomachs – not to mention the cocktails of medications.  
The non-motor symptoms (not the greatest name) include over 20 symptoms, including most prominently depression, apathy, anxiety, sexual dysfunction, and urinary dysfunction.  Studies show depression, anxiety and apathy are the most impacting on quality of life in living with PD.  Neurologists are focused on treating the motor symptoms and sometimes need to be pushed to treat these non-motor symptoms to improve quality of life for their patients.

Dr. Mathur:  What other conditions look like PD, but are actually quite different (parkinsonisms)?
Dr. Okun:  Not everything that looks like a duck and quacks like a duck…  There are some clues, and this is why you don’t want to spend just 5 minutes with your doctor.  It takes some time to recognize these clues.  For example, 

  • If you have trouble moving your eyes, particularly up and down, you may have progressive supranuclear palsy (PSP).  If you have problems falling early on you may have PSP.  
  • If you have hallucinations in early years of PD you may have Lewy Body disease (LBD).  
  • If you have difficulty with skilled movements (apraxia) or your arm is moving in a way you don’t want it to, like elevating on its own while you’re seated (alien limb), you may have corticobasal degeneration (CBD).  
  • If you have dizziness when standing you may have multiple system atrophy (MSA).  This is the most common one we see confused with PD.

In fact you can get any of these symptoms when you have Parkinson’s and that’s why it gets tricky to separate.  If you have early and prominent problems with your blood pressure, like dizziness when you stand up, unsteadiness walking, problems digesting, absorbing medication, urination, etc. you may have parkinsonian symptoms or a parkinsonism.  Doctors use other terms, like secondary Parkinson’s, parkinsonian disorder, and Parkinson’s Plus.  These multiple terms is confusing to patients and families.  
We don’t see those clues/red flags early on in Parkinson’s disease.  Garden variety Parkinson’s disease had classic symptoms of:

  • Tremor (not in all cases)
  • Stiffness
  • Slowness
  • Gait / balance issues (but not falling until later stages)
  • Response to dopamine

Dr. Mathur:  Is the treatment approach different for these parkinsonisms?
Dr. Okun:  Treatment can be very different, although there are some commonalities to treating slowness.  For example,

  • Levels of depression, anxiety and apathy can be much higher in some of those parkinsonian disorders.  
  • In PSP people may laugh or cry at inappropriate times, which can be completely disabling.  
  • If you have PSP and you fall and fracture a hip because your doctor didn’t pick up on that diagnosis, your treatment course can change dramatically.  

People assume incorrectly that people with these parkinsonisms don’t respond to dopamine.  Many people with MSA, LBD, and PSP who do have dopamine responses.  Doctors need to try various cocktails of medications to see what works for each individual.  We also need to bring in a whole team of PT, OT speech therapists to best treat these people.

Dr. Mathur:  Once you have your diagnosis and have accepted your situation you must become an active participant in your treatment for your best quality of life.  Please talk about lifestyle changes, like exercise/rehab and nutritional issues.  What disease specific benefits are there for those with PD?
Dr. Okun:  Starting with exercise, it has general health benefits but historically speaking there was no dopamine treatment.  Dopamine is only about 50 years old.  Before dopamine, people with PD would be institutionalized and doctors would bring the PD patients on rounds because they found the walking was good for them.  Now we know that exercise has benefits to both motor and non-motor symptoms.  Exercise is as impactful as deep brain stimulation (DBS).  
People ask what exercises to do.  Studies show how much and which exercises are best, like tai chi, treadmill, stretching, weight lifting.  Studies show forced exercise, that is just beyond what is comfortable exertion, improves cognitive function.  Even seated exercise is of benefit.  30-40 mins daily is good, but don’t over do it or you will be sore, stiff and tired.  Get your heart rate up, but be safe if you have balance issues.  The best kind of exercise is the kind you’re willing to do.

Dr. Mathur:  We need to build a healthcare team.  One of those team members is a physiotherapist / physical therapist (PT), especially when talking about exercise.  Should everyone consult a PT?  Of what benefit are they?
Dr. Okun:  We have tremendously underestimated the role of physiotherapy/physical therapy (PT).  In some cases they are more powerful than medications.  In the past we have fallen down by assuming:

  • Referral to any PT is equal.  It is not.   
  • Any PT is good for those with PT.  It is not.  
    • The wrong PT can cause a person with PD to fall.
  • A generalized plan for patient care is as good as a specialized plan for an individual patient.  That is false.

The role of a PT in Parkinson’s disease is to set an individualized plan for the person with PD.  In the U.S. insurances pay for a limited number of weeks (like after a stroke) and that is insufficient for PD.  What we need is more interval therapy over time and continuously.  There are systems in the brain (basal ganglia) which respond to cuing.  Just like your neurologist does an exam, your PT does their own exam and spends time with the patient, seeing them on and off their meds, their dyskinesias, and how their balance is over time, so they can create and adjust their individual plan.  
The idea of a PT only staying involved for 6-8 weeks is old school.  New school is returning to the PT at intervals to review and revise each patient’s plan.  Because insurance isn’t new school, you can get the plan from your PT and have a personal trainer help you implement the plan.

Dr. Mathur:  What role does occupational therapist (OT) play?
Dr. Okun:  When we first started the Norman Fixel Institute our dream was an interdisciplinary team that revolved around the patient.  At that time I didn’t understand the role of OT on the team.  If I didn’t understand it, how can families understand the value.  
The OT is probably the most important member of the team.  That’s because the patient has to be able to do the activities of daily living (ADLs), including instructions from the neurologist, PT, etc.  The OT is the person who assesses dexterity, in-home risks for falling, what activities are important to you, etc.  Where neurologists fail the most is to evaluate symptoms, write a prescription, congratulate ourselves, and send the patient and their caregiver home to fail.  The OT is determined not to let the patient fail.

Dr. Mathur:  How do you find a PT and OT.  Is it best to get a referral from your neurologist?
Dr. Okun:  Our healthcare system hasn’t evolved universally to understand an interdisciplinary approach to Parkinson’s care.  Because of that it is important patients and family members are aware of what the different medical team members do.  Sometimes doctors take too many steps forward without explaining to families the impact what each team member will do for you.  
The Davis Phinney Foundation and the Parkinson’s Foundation are fabulous resources to help patients and families understand.  Those foundation staff members can tell you if there are specialized PT and OT resources near you.  If there are not specialized services available where you live they can help you be creative in finding alternatives.  
With the rapid response to covid-19, we in the medical community have learned to adapt and use telemedicine to continue to see patients even for PT, OT and speech therapy.

Dr. Mathur:  PD can affect how we move food from our mouth and through our digestive system.  It can result in swallowing difficulties, heart burn, bloating and constipation.  How do we know when we are having trouble swallowing?  What are the signs we should look for and how common is it?
Dr. Okun:  This is another under appreciated area in PD.  Difficulty swallowing (dysphagia) is a leading cause of death in PD and aging in general.  That is aspiration of food into lungs, rather than the stomach.  In PD we often see silent aspiration, which is not knowing that food is going into the lungs.  Aspiration leads to pneumonia and can lead to death.  You are at risk for aspiration if:

  • you can’t cough vigorously.  Neurologists should ask PD patients to cough during regular examinations.  
  • you cough, choke, or clear your throat frequently while eating.

For some people getting a swallowing study every year or two is very important.  There is a device available with evidence showing blowing into this device will decrease your aspiration risk in PD.

Davis Phinney Foundation provides a great animated YouTube video explaining aspiration. It is called, “What is aspiration?”  You can watch it here.

Dr. Mathur:  Where can someone get that device?
Dr. Okun:  They are relatively cheap, but you should use it under the care of a neurologist or speech-language pathologist (SLP) to make sure you are using it correctly.  
Everything’s on Amazon!  You can purchase it here

Dr. Mathur:  Constipation affects quality of life.  Please discuss things patients can do to relieve constipation.
Dr. Okun:  Over the years we have developed a strategy to address constipation.  Patients and families need to get on a good regimen to address constipation.  Constipation is a non-motor symptom.  It is a #1 or #2 web search among those researching Parkinson’s symptoms and treatment.  
Dietary changes (increase fiber), exercise and sufficient hydration in addition to some medications can all help with this.  Like Amitiza (lubiprostone), which can treat constipation or irritable bowel syndrome (IBS).  
Don’t give up!  Keep talking to your doctor and keep trying various methods.  It can take years to sort out what combination of methods works best for you.  It takes work to treat constipation in PD but if you can help someone it has a tremendous impact on that person’s quality of life.

Dr. Mathur:  PD is progressive and symptoms always get worse.  One big decision is whether and when to start medications.  How do you know when its time to start and when is it time to adjust current regimens?
Dr. Okun:  I regularly hear this question from experienced neurologists.  Think about that for a minute.  It is not a simple question.  Neurologists need to go through a few steps to help each person answer this question.

  1. Talk to the patient and establish what symptoms they have, what they do every day (work, home, hobbies) and how their PD symptoms are impacting what they do.  Once you understand that, 
  2. Determine how much disability YOU think the patient has and how much disability THEY thinks they have.  Some people are not bothered by tremor, for example.  Then, 
  3. Ask yourself, “Is this patient in danger?”  The patient may not realize their balance is off.  There is a balance test.  Dopamine does affect balance correction.  So, you must intervene with medications for safety.

We shouldn’t be fearful of medications.  If you start meds earlier it doesn’t impact whether you will develop dyskinesias.  There were early studies showing if you put dopamine on cells in a dish, they die.  That isn’t what happens in the body.  
Dr. Mathur:  Part of the onus is on the patient, too.  Only the patient knows how their PD symptoms are affecting their quality of life.  We need to mention to our neurologists what is important to us and we can’t be afraid of starting medications.  Delaying the start of medications just diminishes our quality of life in early stages of the disease.

Dr. Mathur:  Patients should also be educated as to their treatment options.  What medications are available to patients?
Dr. Okun:  Melissa Armstrong’s JAMA review article in February 2020 presented a good table on this.  
It can be very complicated because there are dozens of medication options.  Medications change over time in response to symptoms and their impact on quality of life.  You need to be able to tell your doctor when your symptoms are occurring, how long the cycle of on/off periods are, etc.  

  • There are many dopamine replacement therapies, Sinemet (carbidopa/levodopa), Matapar (European), Ritari.  
  • There are dopamine agonists.  They go to dopamine receptors in the brain and they tickle those receptors.
    • Not as robust as dopamine replacements, but effective.
    • Different side effects impulse control, dizziness, nausea, and hallucinations.
  • There are monamine oxidase (MAOB) inhibitors that make dopamine more available to the brain
    • Dopamine is broken down in the brain by MOAB and COMT, catechol-O-methyltransferase
    • COMT inhibitors (entacapone and opicapone) can extend the life of dopamine
      • Specific windows to prescribe these because they can drive more dyskinesia
    • MAOB inhibitors – some people believe there may be a tiny affect on cells dying
      • Medications:  rasageline and selegiline

As we cycle through the life of a PD patient to address various symptoms you will add or subtract various medications or medication delivery systems.  You may find a medication is causing more dyskinesia or hallucinations.  Maybe it is time to consider DBS surgery or a Duopa pump.  Each therapy either singularly or as part of a cocktail has its place at a certain time for a certain therapy.  
If you ask people at a support group what they’re using, you will see everyone is doing something different and that is how it should be.  If everyone is doing the same thing, they are probably all seeing the same doctor and that doctor is not up to speed on how to treat Parkinson’s.  I guarantee you some of his/her patients are not getting the best treatment for them as individuals.

Dr. Mathur:  Treating non-motor symptoms like drooling, orthostatic hypotension, fatigue, apathy, urinary issues, etc. is all there in your book!

Dr. Mathur:  Living well with PD until there’s a cure is such an important concept.  Your book makes that point so well and I thank you for that.  If there is one salient lesson you would like listeners to know, what would it be?
Dr. Okun:  Without a doubt it is that you can live a happy, healthy, meaningful life with PD.  I’ve been around PD my whole career and have seen people get it wrong by not realizing they can live well with PD.  Some patients have told me their health and life was better since they were diagnosed with PD and they tuned into life.