On November 5th PMD Alliance hosted a webinar on How the Brain Progresses with PD.  Neurologist Yasar Torres-Yaghi shared how the pathology of Parkinson’s disease begins in the gut, then progresses to the olfactory bulb before invading the entire brain. 

Although Parkinson’s is thought of as a movement disorder, as the pathology expands throughout the body it affects more than just movement.  Dr. Torres-Yaghi listed several non-motor symptoms of Parkinson’s before focusing on common cognitive changes and the neurotransmitter deficits that contribute to them.

Dr. Torres-Yaghi shared a widely used cognitive evaluation tool before answering questions about communicating well with your neurologist and advocating for the care you need.

You can watch the webinar here.  

Dr. Torres-Yaghi mentioned a myriad of Parkinson’s symptoms in this talk.  The Stanford Parkinson’s Community Outreach Program has an entire section with information about the non-motor Symptoms of Parkinson’s Disease.  

In the menu on the left side of the screen, the second item is “Symptoms of PD.”  Click on it to open the menu and see the entire list of non-motor symptoms you can learn about.

And now, on to my notes…

– Denise

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How the Brain Progresses with PD

PMD Alliance

November 5, 2020

Speaker: Yasar Torres-Yaghi, MD

It has been 200 years since James Parkinson first described Parkinson’s disease in essay, Shaking Palsy.  The focus of subsequent descriptions and treatments is still on the classic motor symptoms, although more recently non-motor symptoms are recognized as part of the disease process.
Cardinal Features and Clinical Manifestations: 

Traditional Definition

• Motor Signs
  • Bradykinesia (slowness of movement)
  • Tremor at rest
  • Rigidity
  • Postural instability
• Clinical Manifestations
  • Decreased arm swing
  • Hypomimia (difficulty with movement, even small facial muscles)
  • Hypophonia (reduced voice volume)
  • Micrographia (small handwriting)

Parkinson’s is a proteinopathy, which means there is something going wrong, allowing the accumulation of proteins and preventing neurons from functioning properly.  In Parkinson’s disease that protein accumulates and forms a Lewy Body.  We can treat the symptoms of Parkinson’s disease, but are unable to prevent accumulation of the proteins and formation of Lewy Bodies.

[Slide showing the pathology of Parkinson’s Disease, including images of Lewy Bodies under the microscope and both healthy and Parkinson’s substantia nigra]

The basal ganglia is the part of the brain which relies on dopamine to facilitate fluid movement.  In the substantia nigra neurons are lost because of the formation of Lewy Bodies.  Unfortunately, this is the tip of the iceberg.  Many parts of the brain, central nervous system, bladder, heart, intestines, and more are affected by this pathology.

The Evolution of Lewy Body Pathology begins in the gut, then olfactory lobe, before invading the entire brain.

Being able to communicate effectively to your neurologist or movement disorder specialist what symptoms you are experiencing or changes in your symptoms is crucial to him/her being able to offer you therapeutic solutions.

More neurotransmitters than just dopamine are affected:

• Seratonin affects sleep
• Epinepherine / adrenaline
• Acetylcholine affects memory, reduces hallucinations

Non-motor Features of PD – if these symptoms are not being treated, your Parkinson’s is not being fully treated

• Neuro-psychiatric and cognitive
  • depression
  • anxiety
  • psychosis (hallucinations / delusions)
    • hallucinations – more than just visual
      • visual (see something not physically present)
      • feeling of a presence
      • peripheral visions (seeing things in the corners of your vision that aren’t really there)
      • illusions (misconstruing what something actually is, a belt on the floor appears to be a snake)
    • delusions – believing things that are untrue, often causing feelings of fear or paranoia
      • Common delusions include believing people are stealing from you or your spouse is being unfaithful
  • dementia
  • apathy (loss of motivation or interest, even in activities once loved)
  • fatigue (tiredness for no apparent reason)
  • sleep disturbances
    • apnea – not uncommon in PD due to rigid muscles in the chest wall
    • REM sleep behavior disorder
    • sleep fragmentation – most common sleep disorder in PD.
      • easy to fall asleep, but difficult to stay asleep
        • restlessness, difficult to turn over in bed, becoming sweaty
    • nocturia – urge to urinate frequency at night
      • neurologist tells you to stay hydrated, but then they have to pee at night
• Autonomic
  • constipation
  • hyperhidrosis (sweating)
  • urinary dysfunction / sexual dysfunction
  • sialorrhea (drooling)
• Sensory
  • pain – one of the most under recognized components of PD
    • rigidity, tremor, arthritis can all combine to cause joint pain.
  • smell loss

Prodromal Phases of PD Reflect Neuronal Loss
As dopamine decreases in the substantia nigra, more symptoms appear, like sleep disorders, olfactory issues, mood changes, low blood pressure when standing, etc.  

Often non-motor symptoms appear before motor symptoms, and they are not recognized as PD symptoms until motor symptoms appear)

If you understand all the neurotransmitters that are decreased by the pathology of Parkinson’s, you realize which medications can replace or maximize the uptake of those neurotransmitters to minimize PD symptoms.

• More neurotransmitters are affected by Parkinson’s than just dopamine :
  • Dopamine – affects movement and elevates mood
• Seratonin – affects depression, anxiety, sleep abnormalities
• Norepinepherine / adrenaline – affects energy levels
• Acetylcholine – affects memory, reduces hallucinations

Parkinson’s affects not just the person with PD, but their primary care partner and entire family.  With telemedicine, since COVID started, Dr. Torres-Yaghi can see where patients live and have more family members all over the world attend video appointments.  Their observations are all important because patients and caregivers often report symptoms differently to a neurologist when asked.  

• Patients may report psychosis (hallucinations or delusions), but the caregiver hasn’t seen signs of it.  
• Patients may deny depression, but the caregiver insists depression is a problem.

Cognition changes in Parkinson’s is different than memory loss (particularly short-term memory loss) seen in Alzheimer’s dementia.  Cognitive assessment (Montreal Cognitive Assessment image) 30 questions or mini-mental test should be done periodically for those with middle stage PD to monitor cognitive changes.  It provides information about:

• visuospatial – copy a cube (may not be something one could ever do) and draw a clock 
• executive functioning / sequencing – complete a pattern
• naming – recall the names of a few different animals
  • some people will not recognize these animals or will give the scientific rather than common name
• memory / word recall – immediately recall a list of 5 random words
• language – immediately repeat a sentence (two sentences in the test)
• fluency – how many words can you name that begin with a specific letter
• delayed recall – recall the same 5 words after 5 minutes
• abstraction – explain similarities between objects, like a train and a bicycle (both used for transportation)
• attention – repeat letters or numbers forward and a short sequence backward
• orientation – identify the date, month year, location, and city

Questions & Answers
Q. How can you slow progression of cognitive decline?  How do you describe to your doctor?  Clinicians seem intimidated by questions about cognitive changes.
A. Communication with your neurologist is key.  Write down the best way you have described your symptoms and read that to your doctor.  That way, your doctor has as much time as possible to address the problem(s).
Don’t fear bringing up symptoms of confusion or cognitive changes.  Ask to make another appointment to discuss everything if a single appointment isn’t long enough.  Alternatively, ask for referrals to specialists which can address specific symptoms.  Your entire medical team may include:

• psychologist
• urologist
• cardiologist
• pulmonologist
• pain clinic
• physical therapist
• occupational therapist
• speech language therapist for cognitive behavioral therapy (CBT) 
  • learn brain-training tricks to help with memory retrieval

What makes a difference to symptoms?

• mindfulness / stress relief
• physical exercise
• mental exercise
• sleep
• diet

Q. How do you slow PD symptoms?  How to ensure complaints are taken seriously by the neurologist? 
A. Neurologists find it very helpful when you arrive at an appointment with written descriptions of the symptoms you are bothered by.  It helps the doctor prioritize what to cover in the allotted appointment time and it provides details you may not remember to share if you don’t have it written down.  There are too many symptoms of Parkinson’s for the neurologist to have time to ask about each one.  
You can also ask for another appointment to discuss non-motor symptoms, or ask for referrals to specialists if you have issues with your vision, bladder, constipation, cognition, sleep, blood pressure, etc. 
Here’s how you can slow PD progression:

• Exercise (both mind and body)
  • Cognitive therapy with a psychologist – can help with memory and retrieval of words/thoughts
• Stress reduction (mindfulness)
• Health lifestyle (diet, sleep)

Q.  Some physicians don’t listen.  Some patients don’t have a care partner.  How does the doctor tease aging issues from PD symptoms?
A. It can be hard to tease apart aging from PD from dementia.  We use assessment tools, like the assessments discussed above, even just asking a patient to draw a clock to determine if a full assessment is warranted.  
If you don’t feel your cognitive issues are being addressed or taken seriously, ask for a referral to a neuropsychologist, or look up neuropsychologists online.  These people are specially trained to do neuropsychological evaluations (can be 5 hours long!), which goes beyond behavior to include the neurological cause and influence on cognitive abilities and behavior, even dementia.
Your neurologist should also check your B12 level, thyroid function, rule out infection, vitamin deficiencies (B1, Thiamin, folic acid), depression, etc.  If these values are off and can be corrected, cognitive changes may be reversible.  These conditions are called pseudo-cognitive impairment because the cognitive impacts are correctable.

Q. What do you do for a person with Parkinson’s who doesn’t agree with what should be shared with a doctor or who hides or makes excuses for symptoms that need treatment?
A. Dr. Torres-Yaghi educates as much as possible to prevent causing conflict between a person with Parkinson’s and his/her caregiver.  It is not uncommon for the person with PD and care partner to have different perspectives on what is going on.  He encourages both parties to prepare for an appointment by writing his/her concerns separately.  He tries to keep an open tone in appointments so everyone can share openly.  
Dr. Torres-Yaghi asks about PD symptoms, but also how the care partner is coping with caregiving.  If the caregiver reports depression, anxiety, high stress levels, etc. that will sometimes open the patient’s eyes to how difficult he/she is making things for their spouse, adult child caregiver.
If you are seeing an internist, rather than a neurologist.  Share what you’ve learned about Parkinson’s and your symptoms and ask for referrals to available treatments.  Example: If you learn from a support group about a local speech language pathologist to do cognitive behavioral therapy (CBT) with you to improve memory recall, ask for a referral!
If you don’t feel like you can talk with your doctor about cognitive changes, try telling him/her that is how you feel.  If nothing changes, it may be time to change doctors.