“The Parkinson’s Journey: Understanding Progression” – Webinar Notes

In September, the Parkinson’s Foundation hosted a webinar on the Parkinson’s disease (PD) progression. In this webinar, neurologist Dr. Annie Killoran and social worker Lance Wilson spoke. Dr. Killoran focused on the clinical side of PD progression while Lance focused on the practical aspects of PD progression. 

Dr. Killoran explained the Hoehn and Yahr scale. The scale describes the progression of PD in stages.  Stages 1 & 2 are considered early PD, stage 3 is middle, and stage 4 & 5 are considered advanced PD.  The timeline for the stages varies but most people go up one stage every two years, except for stage 2 which is five years. Stage 3 is a significant milestone because it is associated with falls and a reduced quality of life. According to Dr. Killoran, 80% of people who have had PD for 15 years have recurrent falls, and most people who have had PD for 18-20 years are in a wheelchair. 

Dr. Killoran noted that the Hoehn & Yahr scale focuses on motor features, although there are also non-motor symptoms that contribute to progression such as sleep disturbances, mood, autonomic control and cognition. Non-motor symptoms such as constipation, depression, and REM sleep behavior disorder can start 20 years before the diagnosis. As PD progresses, cognitive functions such as multitasking, word finding, problem solving and staying focused become more difficult. 25-50% of PD patients have dementia, and 18-20 years after diagnosis (or by age 90), the dementia risk increases to 85%. Over 50% of people with PD dementia have apathy and depression, and 75% have hallucinations. 

Lance Wilson presented next and focused on the practical aspect of PD progression. He recommended a diverse care team that could include physical therapists, movement disorder specialists, speech language therapists, occupational therapists, registered nurses, neuropsychologists, and social workers. 

Lance stressed the importance of having difficult and uncomfortable conversations with your health team and friends and family to best address symptoms, and possible additional assistance. Lance suggested leaning into your emotions and being able to check in with yourself. A PD diagnosis can be overwhelming and is usually the base of most of the anxiety for the individual and care partner. He also recommended being mindful of how emotions are projected, and how engaging in dialogue and conversation can stop resentment from building. Finally, he advocated for the use of both talk therapy and psychotherapy. 

For more information on cognition, fall prevention, and medication, please see this Stanford Parkinson’s Community Outreach webpage: 

For a recording of this webinar, please visit the Parkinson’s Foundation YouTube page

See below for notes on the September 1st session.

Regards, 

– Joëlle Kuehn


“The Parkinson’s Journey: Understanding Progression” – Webinar Notes

Speakers:

  • Annie Killoran, MD, MSc, associate professor of neurology, University of Iowa Hospitals and Parkinson’s Foundation Center of Excellence
  • Lance Wilson, MSS, LSW, C-SWHC, ASW-G, social worker, Jefferson Health and Parkinson’s Foundation Center of Excellence 

Webinar Host: Parkinson’s Foundation

Session Date: September 1, 2021

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

Speaker 1: Dr. Annie Killoran

PD  is a neurodegenerative condition – progressive – gradually worsens over time.  How do we measure disease progression?  Clinically: by symptoms & UPDRS (physical symptoms).  Hoehn and Yahr (H&Y):  commonly used 5-point scale>

Hoehn and Yahr (H&Y) stages:

  • Stages 1 & 2 are considered early PD, stage 3 is middle stage, and stage 4 & 5 are considered advanced PD. 
    • Many people with PD never reach advanced PD
  • Stage 1: Mild symptoms on one side
    • Often go unnoticed as they don’t interfere much with daily activities
    • Symptom ex. tremor, stiffness, lack of coordination, slower walking, loss of facial expression
  • Stage 2: Noticeable symptoms on both sides
    • Speech may be more quiet or slurred, words muffled, certain tasks are more difficult or take more time
  • Stage 3: Imbalance with falls; activities are harder
    • Move slower, biggest feature is imbalance, still fully independent but activities like getting dressed and eating are more difficult to do
  • Stage 4: Need walker and help with tasks
    • PD is disabling 
    • Need help with bathing and getting dressed, cannot be fully independent
  • Stage 5: Tasks are very difficult, in wheelchair  
    • Tendency to freeze and stumble when trying to stand up or turn around

More about the Hoehn & Yahr scale:

  • Timeline for stages varies
  • Most people go up 1 stage every 2 years (except for stage 2 which is 5 years)
  • One-third remain in stage 1 or 2 for up to 10 years
  • Stage 3 (falling) is significant milestone because it is associated with a reduced quality of life
  • For people who have had PD for 15 years, 80% have recurrent falls
  • For people with 18-20 years of PD, most are using a wheelchair because of the frequent falls
  • Risk factors for falls:
    • Being over 70
    • Being diagnosed with PD at an older age
    • PD dementia: 3-4 times more likely to have recurrent falls
  • Reduce falls with physical and occupational therapy and walking aids
  • Dementia drugs may reduce falls (Donepezil, Rivastigmine)

Non-motor symptoms:

  • Hoehn & Yahr only focus on motor features — Shaking, slowness, stiffness, stumbling 
  • Non-motor symptoms: sleep disturbance, mood, cognition and autonomic control
  • Start in “pre-motor” phase can happen up to 20 years earlier:
    • Constipation, hyposmia (loss of smell), depression, REM sleep behavior disorder (RBD)
    • 50% of people with PD have RBD 
      • Act out their dreams and talk in their sleep  
      • RBD is associated with faster progression 
  • Cognitive issues:
    • Early slowness of thinking gradually increases
    • Multitasking, problem solving, staying focused and word finding get difficult
    • Dementia in PD: ranges between 25-50%.  At 18-20 years after diagnosis, or by age 90, the dementia risk increases to 85% 
    • Over half of people with PD dementia have apathy and depression, ¾ have hallucinations
    • Biggest risk factor for PD dementia:
      • >70 years old
      • Older when PD diagnosed
      • Not having a prominent tremor

Advanced PD:

  • Aging process interacts with disease process, making it worse
  • Advanced PD progresses the same in all, regardless of onset age
  • Of people with PD for:
    • 10 years: 25% will have advanced PD
    • 15 years: 50% will have advanced PD
  • After PD for 20+ years, most people are in nursing homes
    • Main predictors for nursing home placement: visual hallucinations, falls, and dementia

Treatment:

  • As PD symptoms progress, the PD treatment evolves
  • PD medication is very effective in early disease
  • Then when there are motor complications, it adds complexity to the drug regimen
    • “Wearing off”
      • Benefit of medication dose doesn’t last as long as they used to 
      • Results in people needing to take medication more frequently
    • Dyskinesias:
      • Involuntary movement in stage 2&3
      • Possible solution: reduce levodopa or add anti-dyskinesia drug
    • Dose failure or sudden off
      • Occurs in advanced PD
      • Drug has no effect or benefit stops suddenly and unpredictably 
      • Rescue medications (fast acting taken as needed) may help
    • In advanced disease, levodopa is less effective:
      • 20% of people with advanced PD got 30% motor improvement with levodopa
      • 50% saw <15% improvement from levodopa
    • Medication side effects can limit dosing: sleepiness, lightheadedness on standing, hallucinations

Speaker 2: Lance Wilson

Practical:

  • Maintenance PT/OT/SLP and exercise programs
  • Durable medical equipment (DME):  rollator, walker, cane
  • Home health:  home therapies, home health aids
  • Medication:  levodopa
  • Neurology follow up

Measurement:

  • Hard to measure progression if there is no measurement option for it
  • How to keep tabs:
    • Develop a baseline – it is never too late for this
    • Team:
      • Movement disorder specialists
      • Physical/occupational therapists, speech language pathologists
      • Registered nurse
      • Neuropsychology
      • Social worker/mental health provider 

Hard conversations:

  • Movement disorder specialist (MDS)
    • This is health care, don’t feel shame, make sure to mention everything that is bothering the patient
    • Addressing symptoms
      • Misperceptions/hallucinations – can be hard to share with a doctor
      • Intimacy – also hard to talk about but is important to address
    • “White coat syndrome” – people putting on a different facade in front of their MDS, don’t share the severity.  The MDS only has a few minutes to address concerns, and aren’t with the patient every day so it is important to share them at that time when they can help.
  • Letting people “In” / Disclosure:  When and if to tell family members, friends, employers 
  • Requiring more assistance
    • Long-term planning (aging in place (at home) / facilities)
    • Care partners – do I help?
    • If care partners can’t meet the needs, should another person come to the house to help

Self-work and maintenance:

  • How you feel is valid
  • Leaning in vs. the spiral 
    • Leaning in: being able to sit with your emotion, check in with yourself
    • Spiral: when thoughts are moving faster than people can stomach and process them, can be overwhelming and is the base of most of the anxiety that comes with PD diagnosis
    • Relevant to both the individual with PD and care partners  
  • Be mindful of emotions
    • Projection – easy to project emotions onto care partners
    • One of the most frustrating things for a care partner is if they are trying to help but are met with aggression or negativity 
    • Not always easy to do in the moment, but engage in dialogue and conversation can stop resentment from building
  • Therapy is recommended
    • Mental health providers are at an all-time high because of COVID and quarantine 
    • Lack of socialization has created anxiety in individuals 
    • Not something to be ashamed of
    • Medication interventions can be done by a psychiatrists, but recommends using both talk therapy and psychotherapy
    • Ensure all doctors know each others so there are no medication interactions

Resources & Benefits:

  • Palliative care consultation:  Can happen in home or outpatient
  • Local office for aging/disability
  • Elder care attorney for financial planning.  Have the conversations upfront with your loved ones
  • Center for Medicare and Medicaid services (CMS) (medicare.gov).  Look up different providers, home care industries
  • Access to social worker
    • Institution – through a hospital or center of excellence
    • Insurance – can check with insurance company, especially if you have a managed care plan

Question & Answer:

Question: What are your thoughts on prescribing dopamine replacement medications earlier rather than later and how might that affect someone’s progression and their ultimate quality of life?

Answer (Dr. Killoran): Levodopa is the best drug we have. Starting it early, it works great for your symptoms but you may be at higher risk for dyskinesias, especially if they have young onset PD. Other options are trying other drugs and then adding low doses of levodopa as needed.  

Question: When you talk about “older people”, what is older? 

Answer (Dr. Killoran): We don’t have a cutoff, a lot of people start having PD around age 60. See it as a spectrum, if you are 30, it’s definitely young onset, if you’re 80, it’s definitely mature onset. People age differently, so it’s hard to give an exact number, it can depend on if you have multiple comorbidities. A person who smokes or has high blood pressure is older per se than someone who’s had a very healthy lifestyle. The brain ages differently for different people. 

Question: What do you tell people about exercise?

Answer (Dr. Killoran): Do it. My patients say they feel stronger and in better control with their PD symptoms. There’s a lot of evidence to suggest that it may slow down progression, and it’s good for other medical issues like sleep. You don’t have to run a marathon, just do what you can. 

Question: If a family member sees issues that a person with PD doesn’t want to see, how do they have those conversations with them?

Answer (Lance Wilson): The first thing is education, know what can be a problem and what is important to address, not everyone knows the warning signs. You want to make your person with PD feel like they’re not an abnormal person, normalize their experience. Once they understand that this is something that is typical and happens a lot in PD, it puts them back in the driver’s seat to bring it up to the provider. If family members have back door conversations with medical providers, that can provide distrust in the relationship. We want people with PD to feel calm and safe with their care team. 

Question: How do people find a multidisciplinary care team and get the help that they need from different providers?

Answer (Lance Wilson): I would recommend starting with the neurologist. Start with the people and relationships they already have in the surrounding area. They would have the information on which organizations treat or address PD better than others.