On April 2nd Parkinson Association of the Rockies (PAR) hosted the Zoom webinar, “Parkinson’s 101: Parkinson’s Basics.”  This is a presentation which PAR offers from time to time.  An earlier presentation of this talk was recorded and made available here. If you watch this webinar, you can skip past the first five minutes, which are announcements and introductions.

The first speaker in this webinar is a social worker who keeps her presentation positive and the information simple so listeners are not overwhelmed.  She explains the basics of Parkinson’s Disease, spends time defining the terminology people will encounter as they begin to educate themselves, outlines stages of the disease, theories as to causes, symptoms and who should be on your care team.

The second speaker is a woman who was diagnosed with Parkinson’s 8 years earlier.  The focus of her talk is a first hand view of the tremendous benefits of exercise in slowing progression of Parkinson’s symptoms.
The third speaker is husband of the woman with Parkinson’s Disease.  He encourages care partners to participate in exercise with the PWP in their household.  Hiring help and assisted living facilities are not financially feasible for many couples.  Being the care partner of someone with Parkinson’s Disease is physically demanding but the more physically fit you are, the longer the two of you can remain in your home without assistance.  

To learn more about why exercise is the best thing you can do to delay symptom progression and maintain independence, check out our Exercise – Why? page. 

Find exercise classes for those with Parkinson’s Disease in your area on our Exercise – Local Classes page. Those with Parkinson’s Disease can exercise at home with recorded and streaming exercise classes on our Exercise Videos.

Stay well,
– Denise

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Parkinson’s Webinars and Exercise Classes Available for Streaming

Parkinson Association of the Rockies, August, 2019 & April 1, 2020

Parkinson’s 101: Parkinson’s BasicsPresenter: Cari Friedman, LCSW

There is no test for PD

• Parkinson’s is always a clinical diagnosis – the diagnosis is based on
  
  • your reported symptom
    • balance issues
    • asymmetrical arm swing
    • small tremor in a finger or hand
    • changes in your usual gait
  • the doctor’s observations, after ruling out other causes for your symptoms.
    
    • Typically takes 3-5 years to get a diagnosis because
      • patients will notice changes and even report them to their doctor, but
      • enough motor symptoms must be present for a doctor to suspect Parkinson’s Disease
      • Most doctors will not diagnose Parkinson’s Disease if the patient is only reporting non-motor symptoms (loss of smell, depression/anxiety, constipation, sleep disorders, etc.), which are often the earliest symptoms of Parkinson’s Disease.

You’ve been diagnosed with PD.  Now what?

• Some people are devastated, others are relieved to know it is not something they feel to be worse.
• Most people wonder what is going to happen to them.
• Knowledge is powerful – at the same time, ignorance is bliss.

Steps in the Right Direction

• You have been diagnosed with a disease that is incurable and progressive BUT it is not a death sentence
• You have a challenge ahead of you
  • Your friends and family do too
    
• Face these challenges everyday
  • BUT there are steps you can take to be proactive in your disease management
• You will live just as long if you take proactive steps in management
  • First step is education, like attending this webinar
  • Always think, “I’m O.K.”  Because you need to remain positive and whatever O.K. means to you is okay.

What is Parkinson’s? – Some doctors are really smart, but they have a terrible bedside manner, so they can tell you things about Parkinson’s that are scary.  Let’s put it more simply here:

• Movement disorder that impairs balance and coordination, slows movement and leads to tremors and stiffness of the limbs.
• Caused by degeneration of dopamine producing cells in specific parts of the brain (substantia nigra)
  • People with Parkinson’s have lost 80% of the dopamine in their brains
  • Dopamine facilitates ease of movement and good muscle control in the body
  • You can think of your inability to move as your dopamine tank being empty
    
    • You can think of medications as the fuel that will refill your tank
    • Just like there are different grades of gas at the gas station, there are different medications to replace dopamine
• Chronic & progressive
  • There are resources to live the best life you can with Parkinson’s Disease – take advantage of them!
  • Don’t let Parkinson’s Disease define you.  Continue to participate in those activities you enjoy.
• Parkinson’s is not contagious, curable, normal for older people, impossible if you are young, reason to make immediate, life-changing decisions

Terminology – Not every person will develop all symptoms on this list.  – Many of the symptoms on this list only develop several years after diagnosis.

• PWP – Person with Parkinson’s
• Motor symptoms – physical symptoms, balance, gait, tremor
• Non-Motor symptoms – all other symptoms
• Dopamine – compound present in the body as a neurotransmitter, controls movement and mood (reward chemical).  By the time motor symptoms present, a person has lost 80% of dopamine.
• Movement Disorder Specialist (MDS) – neurologist with training specific to movement disorders, including Parkinson’s
  • Your regular physician or neurologist will rule out other causes for your symptoms.  They may refer you to a Movement Disorder Specialist if:
    • they are unable to determine a diagnosis, or
    • as the best person to manage your Parkinson’s symptoms. 
• Bradykinesia – slowness of movement
• Dyskinesia – uncontrolled, involuntary movement
  • Flailing arms, like Michael J. Fox.  
  • Caused by too much medication and doesn’t occur in all cases of Parkinson’s
• Dystonia – uncontrollable contraction of muscles
• Dysarthia – slurred or slow speech
• Micrographia – small handwriting.  
  • Sometimes first physical symptom
  • Think about writing big to compensate for this early symptom
  • LSVT BIG – training in using bigger movements
  • LSVT LOUD – training in speaking louder
• Masking – loss of facial expressions, resulting in a fixed, mask-like expression.  Blinking is much less frequent than neurotypical and can result in dry eyes.  PWP may look bored, disinterested or angry.
• DBS – deep brain stimulation, a surgical treatment best used for tremor.  Works a bit like a pacemaker for the brain.  Allows PWP to take less medication.
• Carbidopa/Levadopa – aka Sinemet.  The gold standard in Parkinson’s treatment.  
  • If symptoms don’t bother you, medication treatment is not needed.

Facts about PD – No standard diagnostic tests.  Diagnosis is usually made through clinical diagnosis.

• Additional testing to rule out other diseases (essential tremor, brain tumor, etc.)
• Diagnoses are made by Primary Care Physician (PCP) = 50%, Neurologist = 7-%, MDS = 90%
  • Can take 3-5 years as enough symptoms develop to determine a diagnosis.
  • Sometimes, a doctor will suspect you have a parkinsonism (Parkinson’s-like symptoms, but not the classic constellation of symptoms)
    • Doctor may start you on Sinemet or other dopaminergic medication.
    • If that medication is effective, the doctor may diagnose Parkinson’s Disease.
    • If that medication is not effective, you may eventually get a different diagnosis, but only if enough symptoms present to make a diagnosis.
    • This process is why it is best to get a referral to a movement disorder specialist.
• 2:1 ratio – male to female.  Twice as many men develop Parkinson’s disease, than women.
• Tremor Dominant vs. Non-Tremor Dominant.  Some people have tremors, some don’t.  
  • Sometimes, people feel as though they have an internal tremor, even though it is not noticeable by others.
  • Tremor can contribute to fatigue.
• Estimates are 1 million people with Parkinson’s in the US
  • Approximately 17,000 in Colorado, alone.
  • Western Nebraska has the highest incidence of Parkinson’s in the US.  Pesticides used in farming? 
    
• Total cost of Parkinson’s nationwide = $52 billion
  • Starting medications sooner or later doesn’t matter in the long run.  
  • The issue is your quality of life now.  If symptoms bother you, you can begin medications now.

Stages of Parkinson’s** Remember, the severity of symptoms and length of each stage is unique to each person **

Early Parkinson’s

Stage 1 – Mild, symptoms of PD are mild and only seen on one side of the body (unilateral involvement)

Stage 2 – Mild, symptoms of PD on both sides of the body (bilateral involvement) or at the midline
Mid-stage Parkinson’s

Stage 3 – Moderate, symptoms of PD are characterized by loss of balance and slowness of movement

Advanced Parkinson’s

Stage 4 – Severe, symptoms of PD are severely disabling. Not able to work, drive, travel, etc.

Stage 5 – Severe, symptoms of PD are severe and characterized by an inability to rise.

– Remember not everything that happens is related to your Parkinson’s symptoms.  For example:

• When someone opens a door for you, it doesn’t mean that person is noticing your symptoms.  They’re being nice.
  
• If you trip on a doormat, it isn’t your gait issues.  The edge is curled up.  People have been tripping on it all day!
  
• If you choke on a bite of meat, it doesn’t isn’t the beginning of swallowing issues.  Sometimes people choke on meat.

– If you do everything you can do to care for yourself, you can live well for a long time with Parkinson’s Disease.

• Exercise, exercise, exercise
  
• Eat a health diet
  
• Learn what to watch for and do the testing and physical therapy to compensate for new Parkinson’s symptoms as they arise.  For example:
  
  • Many people who develop very soft voices have difficulty swallowing
    
  • Meet with a speech therapist and do exercises to improve swallowing
    
  • Have your neurologist order a barium x-ray swallowing study

Possible Causes

Genetics

• Several genetic mutations associated with Parkinson’s Disease
  • LRRK2 and GBA
• Only about 10% of people have inherited Parkinson’s Disease
• Having the mutation does not necessarily result in a Parkinson’s diagnosis
  • Families with multiple generations of PWP, but not every individual has Parkinson’s Disease

Environmental contributors

• Rural communities 
• Exposure to pesticides (west Nebraska, Roundup use)
• Well water w/high concentration of manganese
• Prolonged exposure to some chemicals
• Agent Orange

PD is thought to be caused by a combination of environmental factors and genetics but most don’t have any connection to either.  This is why finding a cure is so difficult.

Signs and Motor Symptoms

Every individual with PD has different 

Motor Symptoms

• Tremor
• Rigidity
• Bradykinesia
  • Slowness of movement – takes a long time to get things done, even just bathing, dressing, grooming.
    
• Postural Instability
  • Balance – physical therapy will help compensate for balance and other physical challenges of Parkinson’s
    
• Asymmetrical arm movements

Other motor symptoms include:

• Dysarthia – soft voice (failure of the diaphragm to push air while speaking)
• Masking of the face
• Micrographia – small handwriting
• Difficulty swallowing – can lead to aspiration pneumonia so see a speech therapist and get a swallowing study
• “Freezing” – try to move but feet get stuck in place.  There are tricks to break the freeze, like imagine stepping over a stick.

Non-Motor Symptoms

• Loss of smell – pre-diagnosis
• REM Sleep Behavior Disorder (RBD) – pre-diagnosis (active dreaming)
  • Signal from the brain tells the body not to move while dreaming, but in RBD that message doesn’t get sent so they act out their dreams.
• Sleep apnea
• Restless Legs Syndrome
• Constipation
  • improved with diet, hydration, movement/exercise
• Bladder habit changes (frequency) – improved with lifestyle changes and medications
• Excessive or low sex drive (dopamine agonists can lower inhibitions and/or cause obsessive behaviors, including sex)
• Orthostatic hypotension (nOH) – blood pressure drops, especially after a large meal or when standing
  • must stay hydrated, compression socks, sit/stand slowly + more tips and medications 
• Swallowing difficulty & drooling
• Excessive sweating
• Skin changes
• Vision problems
  • double vision – see a neuro-ophthalmologist
• Cognitive changes 
  • thinking & memory
• Mood changes 
  • anxiety, depression, apathy

Building Your Team

Your team starts with YOU!

Medical Team

• Primary Care Physician (PCP)
  • For non-neurological medical issues, like urinary tract infections
• Movement Disorder Specialist (MDS)
• Mental Health Provider
• Rehabilitation Specialists
• Social Worker
• Pharmacist – be sure all medications are filled from the same pharmacy source so you can be advised how best to take your medications:
  • when medications should be taken
  • which medications can be taken together
  • which medications cannot be taken together and may result inharmful medication interactions.

Social Team

• Close relations (family, friends, neighbors)
• Community – (Parkinson’s exercise class members, support group members, etc.)
• Spiritual advisor (clergy, mindfulness counselor, etc.)

Resources

• Parkinson’s Association of the Rockies
• Davis Phinney Foundation
• National Parkinson’s Foundation
• Michael J. Fox Foundation

Exercise for PWP and Care Partners

Judith (PWP) and Ken Wilson
Judith knew for a long time she had a neurological problem, but diagnosis was in July of 2011.  The MDS said, “I have two prescriptions for you today, but the first one is not a pill.”  He wrote a starting exercise regimen for her to follow.  She was a runner, but sill found a big difference by following the recommended exercises.  She reminds everyone to start exercising early to slow progression of Parkinson’s symptoms.  Modify exercises to participate in those you enjoy.

Decreased dopamine results in decreased control over movement and decreased mobility resulting in decreased ability to move around.  Day to day you won’t notice, but over months and years you will.
Exercise is part of your PD treatment program and will help to improve your ability to continue doing activities you enjoy maintain your independence.

Two types of Parkinson’s Symptoms – Motor AND Non-Motor:Both motor and non-motor Sx will be improved by exercise.Non-motor symptoms can be as bothersome, or more bothersome than motor symptoms.- Example:  Anosmia (loss of sense of smell).  Judith lost her sense of smell in her mid-20s.

Stages of PD

• Stage 1     Mild               
  annoying symptoms, but non-interfering; independent
• Stage 2     Moderate     
  significant, noticeable symptoms; may need assistance intermittently
• Stage 3     Advanced     
  significant limitations; needs substantial assistance w/ADL’s; severe postural problems; dementia (late) – about 1/3 of all PWP’s. *ADL = activities of daily living

Movement Problems (secondary to PD)

• A major problem in PD – balance, and the risks balance issues carry with it
  • Typical issues:
    • “Freezing” gait (legs stop moving mid-stride – can lead to falls)
    • Festination (short, shuffling, rapid steps – can lead to falls)
  • Risks secondary to poor or deteriorating balance:
    • Increasing postural instability (stooped posture, more likely to fall)
    • Falling 
      • injuries
      • hospitalization
      • rehabilitation
    • Falling risk can be minimized through physical therapy and exercise

Exercise
– The number 1 prescription provided to the newly-diagnosed PWP.
Why Exercise?

• Strengthen core muscles (abs) 
  • Strengthens the spine and ability to stabilize the whole body
• Improve balance, flexibility, coordination and overall strength
• Improve posture
  • Stand sideways in a full length mirror to see your current posture. Can it be improved?  
    • Seek a physical therapist with experience working with those who have Parkinson’s Disease.
  • When you can walk straight without a stooped posture, you move more easily
    • Your heart, lungs and internal organs are not impinged upon
• Improve cardiovascular function
• Help with weight management
• Increase endurance
• Decrease fatigue
• Improve sleep
• Improve cognitive function
  • Exercise increases blood flow, awareness of what’s going on around you
• Decrease risks of other major medical problems
  • e.g. hypertension, diabetes, heart disease, COPD
• Improve GI function – reduce constipation
• Improve mental health – decrease depression
  • About 50% of those with PD suffer with depression and anxiety
• Increase safety at home alone for yourself and your family who care about you
  • This is more true for those in the advanced stages of Parkinson’s Disease
• Increase general sense of well-being; improve self confidence
  • Endorphins make you feel good, both physically and emotionally
• SLOW THE PROGRESSION OF PD!!!

Exercise Improves PD Symptoms
We are hearing Judith with amplified technology.  Without it she is hard to hear.  If someone with PD speaks softly and their partner is hard of hearing, communication is further complicated.

Motor

• Tremor, unilateral
• Balance problems
• Difficulty swallowing
• Soft, slurred speech
• Feeling tongue-tied
• Stiffness
• Leg/foot drag, unilateral
• Loss of arm swing, unilateral
• Stooped posture
• Shuffling steps
• Impaired coordination
• Impaired dexterity
• Drooling
• Micrographia
• Numbness/tingling
• Flat faces (“mask”)

Non-Motor

• Memory and Cognition changes
• Fatigue
• Depression and/or Anxiety
• Sleep problems
• Constipation

EXERCISE Options

• Boxing for PD (Power Punch, Rock Steady Boxing)
  • punches
  • eye-hand coordination
  • footwork
  • cognitive challenges
• Spinning
• Martial Arts
  • Yoga
  • Tai chi
  • Pilates
• Personal Trainer
• Dance (any type)
• Walking
• Pickle Ball (similar benefits as boxing for PD)
• Circuit training for PD
  • YMCA classes
  • Senior Center classes
• PD exercise classes
  • PD Foundations, PWR!
• Voice training
  • LSVT: BIG and LOUD
    • LOUD for LIFE – maintenance program to maintain gains from LSVT LOUD
• Music (vocal)
• Art

Exercise Resources

• Parkinson’s Association of the Rockies (PAR)
• Parkinson’s Pointe (PPte)
• Davis Phinney Foundation (DPF)
• YMCA
• Community Recreation Centers

Exercise and The Support Partner – presented by Ken Wilson

• The PAR sponsored exercise classes are available to support partners
• Ken is in an administrative role for a Care Partner Support Group
  • Meets 4th Wed monthly at 6:30pm.  
  • Now meeting through Zoom, which is difficult if the CG can’t Zoom privately
• The support partners in the group have lived with their person with PD for 10-17 years.

Support Partner Qualifications

• As the disease progresses, the physical demands on the care partner increase.
• Several of the care partners in Ken’s support group have back problems and strength problems to the extent that if their PWP falls, they have to call for help to get him/her off the floor
• If the care partner gets to the point that she/he cannot handle the increasing physical strength demands of the role, the couple will be forced into an assisted living situation.

What I am doing to meet the physical demands

• Assisted living is expensive, and unaffordable for most of these Parkinson’s couples
• I resisted joining the Yoga for PD class for months.  I finally joined, and found I was out of shape, even though I was swimming and biking.
• I was unable to do a proper pushup
• I started to avail myself of the Les Mills Bodypump class, which is included (free) in the YMCA membership (Silver Sneakers or Renew Active), working on core, biceps, triceps, quads.
• I am closer to being able to do a proper pushup.

EXERCISE

• One of the real keys to success is to plan your exercise schedule with 1 or more exercise buddies – accountability, camaraderie, friendship
• Find a listing of sponsored exercise opportunities on the website of each of the PD service agencies reviewed earlier (Exercise Resources, slide 17)
• ALWAYS check with your PCP, as well as your MDS, before starting a (new) exercise program.
• Your new 4-letter word is MOVE!

Judith and Ken do a cross-state Iowa ride on a tandem bike that is really fun.  6-8 hrs/day for a week (Sun-Sat).  There is a community of support involved.

Story about a woman PWP and neurologist from the Cleveland Clinic who rode a tandem bike across Iowa.  Remarkably, at the end of each day, when the PWP got off the bike, her tremor and micrographia was gone for awhile.
This Dr. has received an NIH grant to study this phenomenon.  The effects are the most dramatic in cycling and spinning.  Not as pronounced with swimming and other exercises.

DANCE like no one is watching, SING like no one is listening, and LIVE !! each day like it’s your last.

Q&A

Q. Have you heard of the Alinker bike?  It has no pedals, you push with your feet.  I have no balance to ride a bike.
A. Yes.  We have two friends who have that type of bike and they like it.

Q. I’m getting progressively weaker and able to move less just since I’ve been staying home.
A. Contact your MDS this week.  Describe this rapid change in weakness.  I would not expect this to be from reduced activity in just a week or 10 days.  Contact your PCP and get a urine culture done.  You may have a UTI going on.  Drinking lots of water can help deter the body from developing a UTI.

There are Zoom exercise classes to replace the exercising you were doing.  Fortunately, we live in a condo complex that has some exercise equipment and free weights.  We also ordered yoga mats and will take advantage of yoga streaming classes.

Q. Anxiety and loneliness are increased during shelter in place orders.
A. Some people have the news on too much because listening to the news can increase anxiety.  Sometimes ignorance is bliss.

When covid-19 passes, get involved with something like boxing for PD to have fun, make social connections slow the progression of PD and improve your health.

Be flexible.  Make modifications to exercises so you can keep moving during shelter in place.