Multiple System Atrophy and Cognition Webinar – Recording, Resources + Notes

Brain Support Network and Stanford University co-hosted a webinar last Monday, November 12th about Multiple System Atrophy (MSA) and cognition.

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RECORDING

The webinar recording can be found here —

https://youtu.be/hr0TCWqBgUY

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SURVEY

If you listen to the webinar recording, please take LESS THAN TWO MINUTES to answer six questions on our survey.  See:

https://www.surveymonkey.com/r/W23K9RW

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FUTURE WEBINARS ON MSA

To be alerted to future webinars on MSA, join Brain Support Network’s MSA email list –
www.brainsupportnetwork.org/join

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RESOURCES

For additional information on the topics addressed during the webinar, see:

Multiple system atrophy (including our list of Top Resources from around the world) – www.brainsupportnetwork.org/msa

Brain donation to support MSA researchwww.brainsupportnetwork.org/brain-donation

Lewy body dementia – www.brainsupportnetwork.org/lbd

Parkinson’s Disease (PD) – parkinsons.stanford.edu

Orthostatic hypotension –
parkinsons.stanford.edu/orthostatic_hypotension.html

Cognition in PD – parkinsons.stanford.edu/cognition.html

Psychosis in PD – parkinsons.stanford.edu/psychosis.html

Make an appointment with Dr. Poston or other movement disorder specialists at Stanford – Call 650-723-6469

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SUMMARY

Our terrific volunteer, Denise Dagan, wrote a summary of the webinar:

Movement disorders specialist Kathleen Poston, MD discussed the diagnostic criteria for MSA with special attention on recent research showing memory and cognition problems can occur in MSA patients.

Here are some points Dr. Poston covered in this talk:

* Symptoms of MSA (now unofficially includes cognitive impairment).

* How to approach treatment of cognitive impairment based on how suddenly symptoms appear.

* How to identify if cognitive symptoms are associated with dopamine medications.

* Outline of six cognitive domains.

* In all variants of MSA executive cognition is affected, typically later in the disease process.

* The other five cognitive domains are affected to greater and lesser degrees, depending on the variant of MSA in question.

* Definition of psychosis.

* When sudden onset or worsening of hallucinations may occur, and how to treat them.

* When a diagnosis of MSA, Parkinson’s or Lewy body dementia (LBD) should be made — based on what symptoms present and the timing of those symptoms.

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NOTES

Our terrific volunteer, Denise Dagan, took notes from the webinar.

Webinar
Multiple System Atrophy and Cognition

Speaker:  Kathleen Poston, MD, movement disorders specialist, Stanford University
Host: Candy Welch, former MSA caregiver, Brain Support Network

November 12, 2018

This webinar will address these topics:
• What are normal cognitive problems in multiple system atrophy (MSA)?
• Can “cognitive impairment” be part of MSA?
• Can “dementia” be part of MSA?
• Are there MSA symptoms that can mimic dementia?
• When should a diagnosis of “Lewy body dementia” be given?  Does it make a difference?
• What’s the treatment?

DR. POSTON’S PRESENTATION

Diagnostic Criteria for Multiple System Atrophy (MSA)
From: the Second Consensus Statement on the Diagnosis of MSA (Gilman, et. al., Neurology 2008)
Every person has early, significant autonomic dysfunction (blood pressure fluctuations, urinary frequency or incontinence, constipation, sweating, sexual dysfunction, etc.) PLUS
* Parkinsonism (slowness, stiffness, muscle rigidity) = MSA-P
OR
* Ataxia (poor coordination) = MSA-C

Autonomic Systems (reiterated) =
• Blood pressure and heart rate fluctuations (orthostatic hypotension)
• Urinary difficulty and incontinence
• Obstructive Sleep Apnea and/or RBD
• Difficulty with sexual functioning

Parkinsonism =
• Bradykinesia (slow movement)
• Rigidity (stiffness in the muscles)
• Tremor (rhythmic shaking)
• Balance and walking problems

Cerebellar Symptoms =
• Ataxia (poor coordination)
• Can be either with limb movement or with the trunk and neck movements
• Speech problems
• Swallowing problems

Traditionally the diagnosis of ‘dementia’ has been considered a red flag that the diagnosis is not MSA.  However, it has recently been recognized that memory and cognition problems can happen in patients with MSA
2008 currently being considered for revision.

Motor versus Non-Motor Symptoms:
Classic Motor Symptoms =
• Ataxia
• Bradykinesia, Tremor, Rigidity

Mixed Motor/Non-Motor Symptoms =
• Hypophonia (soft speech) and Dysarthria (difficult or unclear articulation of speech)
• Gait and Balance Problems

Non-Motor Symptoms =
• Mild Cognitive Impairment and Dementia (rarely dementia)
• Psychosis (hallucinations and delusions)
• Sleep disorders (RBD and OSA)
• Depression/Apathy, Anxiety, Fatigue
• Constipation, Orthostatic hypotension, Urinary frequency, urgency, incontinence

Types of Cognitive Impairment:
1. Sudden
2. Intermittent (off and on)
3. Slowly progressive

1. Sudden Change in Cognition
* Most common reason for a sudden onset or change in symptoms, including cognition, is general medical illness or other medications
– Infection (such as a UTI or a cold/flu – elderly & those with neurodegenerative disorder may not run a fever or feel pain urinating)
– Medications (for pain, urinary frequency)
– Physical stress (constipation, poor sleep, travel, new physical environment)
– Emotional stress (anxiety)
– Being in the hospital (all of the above)

How to treat a Sudden Change
* Deal with the underlying cause (prior slide)
* Reduce or stop certain medications:
– Artane (any other anticholinergics)
– Amantadine
– Dopamine agonists
– Sinemet CR (carbidopa/levodopa CR)
– Comtan (entacapone)

2. Intermittent Cognitive Impairment
* Sometimes called fluctuations in cognition
* Can be associated with level of alertness throughout the day
– Determine whether cognitive impairment is related to dopamine medication by keeping a daily diary of medication dosages and times, symptom timing and duration, and meals.

Scenario 1: Non-motor symptom improves with dopamine
7:00a – Take 1, 25/100 Sinemet (carbidopa/levodopa)
9:00a – Symptom A starts
10:00a – Take 1, 25/100 Sinemet : Symptom A continues
10:30a – Symptom A ends
12:00p – Symptom A starts again
1:00p – Take 1, 25/100 Sinemet ; Symptom A continues
1:30p – Symptom A ends

Scenario 2: Non-motor symptom worsens with dopamine
7:00a – Take 1, 25/100 Sinemet
7:30a – Symptom A starts
8:00a – Symptom A ends
10:00a – Take 1, 25/100 Sinemet
10:30a – Symptom A starts
11:00a – Symptom A ends
1:00p – Take 1, 25/100 Sinemet
1:30p – Symptom A starts
2:00p – Symptom A ends

Scenario 3: Non-motor symptom is independent of dopamine, but related to meals.  This happens especially in orthostatic hypotension (fluctuating blood pressure).  Cognition can be reduced by low blood pressure.  A home blood pressure monitor can help determine if this is the situation.
7:00a – Take 1, 25/100 Sinemet
7:30a – Symptom A starts (Breakfast)
8:30a – Symptom A ends
10:00a – Take 1, 25/100 Sinemet
12:00p – Symptom A starts (Lunch)
1:00p – Take 1, 25/100 Sinemet
2:00p – Symptom A ends

3. Slowly progressive change in Cognition
* More likely to be part of the disease process

Cognitive Domains:
Each controlled by different parts of the brain.  Different parts of the brain are affected by pathology of different neurodegenerative disorders.
* Memory
* Processing speed
* Attention and working memory
* Executive function
* Visuospatial function
* Language

Memory:
* Example: On your way out the door your spouse asks you:  “Can you pick up some milk while you are at the store?”
* The process of memory includes:
– Encoding = storing information properly
– Maintenance = keeping it in storage long enough to be useful
– Retrieval = recalling the information when it is needed

Processing Speed:
Time it takes to absorb new information and come up with a response.

Attention and Working Memory
Example: A friend tells you a 10 digit phone number – you keep it in your mind for about 30 seconds while you look for a pen and paper to write it down or enter it into contacts on your phone.

Executive Function:
* The cognitive processes that dictate flexible and dynamic adjustment of performance in response to a changing environment.
* Examples:
– Planning/organizing
– Complex or novel problem-solving
– Shifting attention, keeping track of, or alternating from 1 task to another
– Not being susceptible to distractions
– Generating fluent sequence of thought or words
– Learning the rules of a new task (example: programming new DVR) without direction or explicit cueing

Visuospatial Function:
[Slide showing 4 complex geometric drawings and various trapezoids, rectangles and parallelograms in the center of each.]
Given an isolated parallelogram, an impaired subject would have difficulty finding a parallelogram of the same shape within the complex geometric drawings.
* Causes problems with parking the car or clipping corners when driving
* Causes problems with directions somewhere that is not familiar and getting turned around

Language:
* Names of objects and people
* Problems can be simple:  ‘Tip of the tongue’
* Problems can be more severe:  You can’t remember the name of something you use regularly.

What is dementia?
* Comment: Alzheimer’s is the most commonly diagnosed type of dementia, but not the only one – by far.
* A person who can no longer do an activity of daily living because of a cognitive impairment has dementia.
* Examples:
– Can no longer pay the bills correctly
– Gets lost when driving
– Cannot shop for groceries

[Slide showing study results, “Cognitive Impairment in MSA: A Position statement by the Neuropsychology Task Force of the MDS Multiple System Atrophy (MODIMSA) Study Group,” Stankovic, et. al., Movement Disorders, vol. 29, no. 7, 2014.]

Autopsy verified diagnosis.
Table 1. Impaired cognitive functions in:
MSA (multiple system atrophy)
MSA-P (multiple system atrophy, parkinsonian variant)
MSA-C (multiple system atrophy, cerebellar variant)

MSA P+C
Often impaired:  Executive cognition
Sometimes impaired: Attention and working memory, spontaneous recall (immediate & delayed), recognition, visuospatial functions

MSA-P
Often impaired:  Executive cognition
Sometimes impaired: Attention and working memory, spontaneous immediate recall, visuospatial functions

MSA-C
Often impaired:  Executive cognition
Sometimes impaired: Attention and working memory, spontaneous delayed recall, recognition, visuospatial functions]

[Slide results from same study:]
* Prevalence of rates of cognitive impairment in autopsy confirmed MSA:
– 22% Mild Cognitive Impairment,
– 2% Moderate Cognitive Impairment,
– 0.5% Severe Cognitive Impairment
* 50% of those MSA patients with more than 8 years after diagnosis had some Cognitive Impairment
– Cognitive impairment seems to happen most frequently late in the disease process
* 14% of MSA patients had dementia in the last year before death
* 9% had well-formed visual hallucinations (one study)

[Slide showing study results, “Profile of Cognitive Impairment and Underlying Pathology in MSA,” Koga, et. al., Movement Disorders, vol. 32, no. 3, 2017.  Autopsy verified diagnosis.]

Table 2. Comparison of demographic and clinical features between 102 patients:
MSA-CI (multiple system atrophy with cognitive impairment) 33 patients
MSA-NC (multiple system atrophy without cognitive impairment) 69 patients

Data collected:
– Females with and without cognitive impairment
– Age at onset, in years
– Age at death, in years
– Disease duration
– Family history of dementia
– Family history of parkinsonism
– Having clinical diagnosis of MSA.  Only 70% accurately diagnosed.
– Clinical phenotype (both Parkinson’s and Cerebellar)
– Clinical symptoms of depression]

[Slide showing Characteristics of cognitive impairment in same 33 patients with MSA and cognitive impairment.  11 of the 33 had other pathologies that may have contributed to cognitive impairment, in addition to MSA pathology.]

What is meant by ‘psychosis’?
* Illusions – Misinterpretations of real stimuli. Can be unformed, such as a sense of presence or a fleeting false impression.  Example: see a jacket on a chair and misinterpret that it is a cat.
* Hallucinations – Spontaneous, fully formed. Most often visual, but can be auditory, tactile, olfactory (smell), or gustatory (taste).  Example: seeing there is a cat when there is not a cat.  With insight the person knows the hallucinations are not real.  Without insight they cannot know the hallucinations are not real; at this point, consider medication intervention.
* Delusions – False thinking. Can be paranoia.  Also, consider medication intervention.

Motor Symptoms – Sometimes Improved by dopamine medications
BUT
Hallucinations – Can be worsened by dopamine medications

Sudden Onset or Worsening of Hallucinations (Same as any worsening symptoms, including cognition.)
* Most common reason for a sudden onset or change in symptoms is general medical illness or other medications
– Infection (such as a UTI or a cold/flu)
– Medications (for pain, urinary frequency)
– Physical stress (constipation, poor sleep, travel, new physical environment)
– Emotional stress (anxiety)
– Being in the hospital (all of the above)

How to treat a Sudden Change
1. Deal with the underlying cause (prior slide)
2. Reduce or stop certain medications:
* Artane (any other anticholinergics)
* Amantadine
* Dopamine agonists
* Sinemet CR (carbidopa/levodopa CR)
* Comtan (entacapone)

What is the difference between MSA, Parkinson’s disease and Lewy body Dementia (LBD)?
Clinically:
Cognition = Memory and Hallucinations AND
Motor = Ataxia, Bradykinesia, Rigidity and Tremor WORSEN OVER TIME

Pathologically (only visible at autopsy):
[Slide showing Lewy body Pathology (image) in Both PD & LBD
Glial Cytoplasmic Inclusion Pathology (image) in MSA
Both Lewy Bodies and GCIs are make of up of the protein a-synuclein]

As is currently defined, all 3 would have autonomic dysfunction:
* The Diagnosis of PD with cognitive impairment or Dementia should be made when memory problems develops within the context of established PD.
* The Diagnosis of LBD is appropriate when the diagnosis of Dementia precedes or coincides within 1 year of the development of motor symptoms (parkinsonism).
* The Diagnosis of MSA is appropriate when the there is primary Autonomic Dysfunction, along with either parkinsonism or ataxia (with, or without memory problems).

Please take a 20 question online survey about MSA diagnosis and symptoms!!!
http://med.stanford.edu/poston-lab/msa-survey.html

QUESTION AND ANSWER
Lots of questions were received in advance.

Q. When will the diagnostic criteria be updated?
A. It is in the works.  So, probably the next year and a half.

Q. Why aren’t MDs able to determine if someone has MSA or LBD?
A. Even though in pathology the Lewy Bodies look different from the GCIs, there is no way to image them through an MRI, etc.

Q. Are there any specific assessments or screenings that you recommend for evaluating and monitoring an MSA patient’s cognitive status?
A. The screening a doctor would do during an office visit.  The Montreal Cognitive Assessment covers all the cognitive domains.  The problem is that is it fast (30 questions) so not detailed.  A neuropsychological battery, 2-3 hours of testing requires a PhD, clinical psychologist, to administer.

Q. Connection between NPH (normal pressure hydrocephalus) and MSA.
A. NPH can cause spaces in the brain to enlarge and press against other areas of the brain affecting urinary, cognition and gait.  The symptoms manifest differently from MSA and can be seen in an MRI.  That is one way to identify those with NPH and exclude MSA.

Q. What is sleep’s role in cognition?
A. A bad night sleep affects processing speed, executive function so address sleep apnea, have a nap, monitor blood pressure and minimize BP fluctuation to maximize cognitive function.

Q. How are executive functions affected in MSA?
A. This can come across as difficulty with multi-tasking because that requires a very high level of cognitive function.  Figuring out what to do in the right order is required.  When someone has trouble making a to-do list, there are some executive function issues.

Q. What is fatigue’s role in cognition?
A. Fatigue is very involved in blood pressure.  There is a lot of fatigue fundamental to each of these disorders.  Fatigue gets some improvement with napping or resting where blood pressure and dementia does not.

Q. How common are hallucinations in MSA?  Can there be hallucinations without Lewy body dementia?
A. Yes, recent studies have convinced clinicians.  That wasn’t known 10 years ago and Dr. Postonhas seen it in her clinic.

Q. How does dementia in MSA differ from Lewy body dementia?  Parkinson’s disease dementia?
A. It can be pretty darned similar.  The dementia, particularly the executive function issues, which is why the neuropsychological testing doesn’t differentiate between these.

Q. How does the cognitive impairment in MSA differ from that seen in Progressive supranuclear palsy (PSP)?
A. Patients with PSP can have a lot of executive function difficulty as well, but they often have poor judgement, even though they know their balance is terrible.  This can happen in other neurodegenerative disorders, but is more common in PSP,

Q. My husband is now very susceptible to TV ads and asks me to order products we do not need.  Is this executive function impairment?
A. Impulsivity can be part of the underlying disorder but can be made worse with dopamine agonists (Requip, Mirapex, Nupro patch).

Q. My husband is slow to respond, slow to make decisions, and has “on-and-off” periods.  Is this dementia?
A. It depends on the degree to which the on/off periods and indecision interfere with ability to complete activities of daily living.  On/off could be from medications or blood pressure fluctuations, so its hard to tell.

Q. Could MSA-related cognitive impairment be mistaken for vascular-related mild cognitive impairment?
A. The only study addressing that is the one showed where 4-5 had vascular disease found at autopsy that could have contributed to cognitive impairment.  It is impossible to tease out how much each contributes how much to cognitive impairment.

Q. How can you tell the difference between orthostatic hypotension and cognitive impairment?
A. The most common place you see this is when blood pressure stops and processing speed slows so much the person cannot answer questions. Blood pressure should be done during these episodes.  The tilt table test during cognitive testing can reveal whether the person has cognitive changes associated with blood pressure changes.

Q. In our local support group, people with MSA are taking Alzheimer’s medications such as Aricept and Exelon.  Does this mean they have dementia?  Lewy body dementia?
A. As far as medications to treat cognition, Alzheimer’s is the only disease FDA approved to treat.  Aricept, Exelon and Namenda are the most common.  These are not FDA approved for any other cognitive impairments.  The best data is behind Aricept and Exelon for Alzheimer’s and LBD.  They do help a little bit, but they can help for other cognitive and memory issues.

Q. How is the care of a person with MSA different from someone with dementia?  Or different from someone with other
neurological diseases (such as PSP or CBD)?
A. Longitudinal studies show the care of any two patients with MSA is completely different.  Care must be specifically tailored to each person.  One may have severe urinary issues and another not.  This is true of all the neurodegenerative disorders.

Q. If someone with MSA has cognitive issues, is his/her prognosis (survival time) any different?
A. Chance of having cognitive problems is most likely if they live 8+ years after diagnosis.  Once someone has a diagnosis of Parkinson’s disease with dementia their prognosis is shortened.

Q. How can medications affect cognition?
Q. If opiates can affect cognition and cause hallucinations, what kind of pain reliever can I give to my mother with pain?
A. Anything that treats pain dulls all neurons in the brain, blocking the sensation of pain.  Therefore simultaneously slows cognition, worsens hallucinations, etc.  Start with over the counter pain killers.  If you have to go to prescriptions discuss with doctor about what to try and start with lowest dose possible.

Q. Can cognitive problems be prevented in MSA?
A. We don’t understand what causes cognitive problems so we don’t have a way of preventing them.

Q. How can caregivers respond to someone with MSA and cognitive problems?
A. It is difficult because patients can get frustrated.  Patients do improve with a certain amount of cueing, reminding, etc.  Unfortunately, spouses call this nagging.  Try to know what the problem is by getting neuropsychologist testing and refer back to the test or have the doctor tell him/her what they have difficulty with.

Q.Do people with MSA not live long enough for dementia to show up?
A. No.

Q. Can people with MSA *also* have Alzheimer’s disease?
A. Yes.

Q. Can people with MSA *also* have Lewy body dementia?
A. Yes, but very rare.

Q. When do we determine when the patient is unable to work because decisions are cloudy or cognition is impaired?
A. Depends on the job and flexibility the employer has to move employee into a different role and relationship between the two.  Most of the time once executive functioning is impacted, it is difficult to be employed because decisions are too hard.

Q. Once the patient is non verbal and unable to move on his/her own accord, is this considered a disability automatically?
A. In filling out disability paperwork people qualify long before someone is nonverbal or unable to move.

Driving
Q. When do we determine when the patient is unable to drive because cognition is impaired?
A. This varies by state.  In CA if someone has dementia the physician is required by law to report them to the DMV for evaluation.  Occupational therapists can do an assessment, even with a driving simulator, to see what concerns might be, especially visuospatial changes.

Q. Importance of brain donation to MSA research.
A. Critical.  Without autopsy diagnosis confirmation we would still be guessing.  Before research based on brain donations we used to think MSA was 3 different disorders.  We can only continue research into MSA and other neurodegenerative disorders with continued access to brain tissue donated for research purposes.

Sept 2018, Speakers at Parkinson’s Support Group Meetings, Northern CA

In September 2018, some Parkinson’s support group meetings in Northern and Central California have guest speakers that may be of interest to those in the Brain Support Network community:


Lodi

Tuesday, 9/4, 10am-noon  (meeting on 1st Tuesday in Sept)
Guest Speaker:  Shelly Azevedo, myofunctional specialist
Topics:  Facial, speech, and swallowing issues in PD
RSVP?:  No.


San Andreas (Calaveras County)
Tuesday, 9/4, 10am-noon (speaker usually begins at 10:30am)
Guest Speaker:  Kenneth Renwick, MD
Topic:  Medical marijuana for those with PD
RSVP?:  No.


Roseville
Tuesday, 9/4, 1:30-3pm
Guest Speaker:  Ability Tools representative
Topics:  Selecting the right scooter and other services regarding
assistive technology, mobility, and medical equipment
RSVP?:  No.


Soquel (Santa Cruz County)
Wednesday, 9/5, 2-3:30pm
Guest Speakers:  Miriam Tutman and Holly Blue Hawkins
Topics:  Tricks and tips of healthcare and setting up affordable
care at home
RSVP?:  No.


San Jose/Willow Glen
Friday, 9/7, 10am-noon  (speaker begins about 10:15am)
Guest Speaker:  Kathleen Poston, MD, movement disorder specialist,
Stanford University
Topic:  Fatigue, drowsiness, and depression in PD
RSVP?:  No.


Auburn
Tuesday, 9/11, 11:30am (lunch meeting)
Guest Speaker:  Stephanie Watson, Sierra Senior Placement
Services
Topic:  Types of assistance, places, and cost
RSVP?:  No.


Palo Alto YOPD (Young Onset PD)/Stanford
Tuesday, 9/11, 6:30-8pm
Guest Speaker:  Robert Magbanua, Mark Green Sports Center,
Union City
Topic:  Rock Steady Boxing
RSVP?:  Yes, if this is your first time attending.  Please email group
leader John Mamin, [email protected]


Menlo Park/Little House
Wednesday, 9/12, 2-3:30pm
Guest Speaker:  Carrolee Barlow, MD, CEO, The Parkinson’s
Institute, Sunnyvale
Topic:  Causes, treatment, and latest research in treating PD
RSVP?:  No.


Stockton
Thursday, 9/13, 1:30-3pm
Guest Speaker #1:  Karen Fabreo-Hittle, PT, physical therapist,
O’Connor Woods, Stockton
Topic #1:  Successful transferring
Guest Speaker #2:  Anna Lissa Garcia, OT, occupational
therapist, O’Connor Woods, Stockton
Topic #2:  How speech therapy can help with swallowing, speech
volume, and articulation
RSVP?:  No.


Walnut Creek (Mt. Diablo)
Saturday, 9/15, 10am-noon  (speakers begin at 10:45am)
Guest Speaker #1:  Carol Fisher, RYT, yoga therapist
Topic #1:  Meditation and yoga
Guest Speaker #2:  Elaine Welch, CEO, Mobility Matters
Topic #2:  Transportation issues for seniors and disabled
RSVP?:  No.


Lincoln
Tuesday, 9/18, 10-11am
Guest Speaker:  Cate McGregor, nurse educator, Coalition for
Compassionate Care of California
Topic:  Importance of POLST
RSVP?:  No.



Merced
Thursday, 9/20, 10am-noon
Guest Speakers:  Claire Osborne, OT, occupational therapist,
and Judy Chi, PT, physical therapist
Topic:  LSVT BIG and LOUD programs
RSVP?:  Yes, preferred.  Contact Elina Lopez, Amie’s Senior Care,
[email protected], 209-384-3300.

 

For meeting location and other details, see the Stanford Parkinson’s Outreach website.

 

Aug 2018, Speakers at Parkinson’s Support Group Meetings, Northern CA

In August 2018, some Parkinson’s support group meetings in Northern and Central California have guest speakers that may be of interest to those in the Brain Support Network community:

San Jose/Willow Glen
Friday, 8/3, 10am-noon (speaker begins about 10:15am)
Guest Speaker: Harvey Sackett, Esquire
Topic: Filing for Social Security disability benefits with a PD diagnosis
RSVP?: No.

Half Moon Bay
Friday, 8/3, 1-2pm
Guest Speaker: Jetta Van Hemert, PT, physical therapist, Half Moon Bay Senior Center
Topic: Rosen method and exercise for Parkinson’s
RSVP?: No.

San Andreas (Calaveras County)
Tuesday, 8/7, 10am-noon (speaker usually begins at 10:30am)
Guest Speaker: Bailey Freitas, SLP, speech therapist, Sonora Regional Hospital and other places
RSVP?: No.

Placerville
Tuesday, 8/7, 1:30-3pm
Program: Watch “Freezing or Sweating Falls When Walking with PD” webinar from the Parkinson’s Foundation
RSVP?: No.

Menlo Park/Little House
Wednesday, 8/8, 2-3:30pm
Guest Speaker: Ellen Corman, director, Stanford’s Farewell to Falls Program
Topic: Fall prevention in Parkinson’s
RSVP?: No.

Santa Rosa (Sonoma County)
Saturday, 8/11, 1-3:15pm (speaker from 1-2pm)
Guest Speaker: Diana Partovi, neuropsychologist, VA
Topic: Managing cognitive changes in Parkinson’s
RSVP?: No.

Tracy
Monday, 8/13, 10am-noon
Program: Dance for Parkinson’s demonstration class led by Rose, Dance for Parkinson’s representative
RSVP?: No.

Pacific Grove (Monterey County)
Tuesday, 8/14, 3-4:30pm
Guest Speaker: Jennifer D’Attilio, SLP, speech therapist
Topic: Parkinson’s Voice Project
RSVP?: No.

Palo Alto YOPD (Young Onset PD)/Stanford
Tuesday, 8/14, 6:30-8pm
Guest Speaker: James Lu, DPT, LAc, acupuncturist, Zhu’s Neuro-Acupuncture and Rehabilitation Center, San Jose
Topic: Scalp acupuncture for PD
RSVP?: Yes, if this is your first time attending. Please email group leader John Mamin, [email protected]

For meeting location and other details, see the Stanford Parkinson’s Outreach website.

 

July 2018, Parkinson’s Support Group Meetings, Northern and Central California

Here’s a list of Parkinson’s support group meetings in Northern California and Central California in July 2018, where the guest speakers may be of interest to those in the Brain Support Network community:

Lodi
Monday, 7/2, 10am-noon
Guest Speaker:  Michelle Rosado, Disability Resource Aging for Independent Living (DRAIL), San Joaquin County
Topic:  Resources and device to help make daily living easier for those with challenges
RSVP?:  No.

San Andreas (Calaveras County)
Tuesday, 7/3, 10am-noon (guest speaker usually starts at 10:30am)
Guest Speaker:  Kenneth Renwick, MD, family physician, Calaveras County
Topic:  Medical marijuana for people with PD
RSVP?:  No.

Pacific Grove (Monterey County)
Tuesday, 7/10, 3-4:30pm
Guest Speaker:  Consuelo Juarez, patient advocate, Rare Patient Voice
RSVP?:  No.

Menlo Park/Little House
Wednesday, 7/11, 2-3:30pm
Guest Speaker:  Nikki Hochhauser, Home Instead Senior Care, Sunnyvale (servicing Belmont to Cupertino)
Topics:  Senior care options for those with PD, suggestions for hiring an agency or private caregivers, avoiding elder scams, and the 70/40 conversation rules
RSVP?:  No.

Sonoma/Vintage House
Thursday, 7/12, 10-11am
Guest Speaker:  Marie Held, SLP, speech therapist, Brookdale Home Health
Topic:  Speech therapy services for managing PD
RSVP?:  No.

Clovis (Greater Fresno)
Saturday, 7/14, 10am-noon
Discussion Topic:  Alternative treatments for PD
RSVP?:  No.

Lincoln
Tuesday, 7/17, 10-11am
Guest Speaker:  Rock Steady Boxing Roseville representative
RSVP?:  No.

Elk Grove
Wednesday, 7/18, 10-11:30am
Guest Speaker:  Deborah Gonzalez, speech therapist, Dignity Health
Topics:  Voice projection and swallowing
RSVP?:  No.

Merced
Thursday, 7/19, 10am-noon
Guest Speaker:  Kelly Lowe, therapeutic massage therapist, Merced
Topic:  Pressure points
RSVP?:  No.

Sacramento/Arden Arcade
Thursday, 7/19, 10am-noon
Guest Speaker:  Karen Low, SLP, speech therapist, Kaiser
Topics:  Voice projection and swallowing
RSVP?:  No.

Walnut Creek (Mt. Diablo)
Saturday, 7/21, 9am-noon  (speaker 10:45am-11:45am)
Guest Speaker:  Lena Hart, Alexander Technique instructor
Topic:  Redefining and finding balance with PD
RSVP?:  No.

Find meeting location details on the Stanford Parkinson’s Outreach website.

 

Pain and Fatigue in Parkinson’s – Webinar Notes

The Michael J. Fox Foundation (michaeljfox.org) hosts webinars on the third Thursday of every month.  Lately they’ve been re-broadcasting recordings of previous webinars.  Last Thursday’s webinar was a re-broadcast of a July 2016 webinar on Parkinson’s pain and fatigue.

There is often fatigue in all of the disorders in the Brain Support Network group, and many of our community members experience pain. Listening to the webinar recording may be worthwhile for many.  The only information that will NOT be relevant to most of you is the info about off-periods caused when Parkinson’s medications wear off.

You can find the recording online here:  (you’ll have to register first)

https://www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=9

Here are two highlights from the question and answer session:

Q. What about treatments for people in wheelchairs?
A. You definitely need to work with a good physical therapist for the best advice for exercising in a chair.  Chair yoga and tai chi are just the tip of the iceberg.  You don’t get an exercise pass because of the chair.

Q. What can family members do to help with pain or fatigue?
A. Care partners should use socialization to get their person with Parkinson’s (PwP) up and going.  It really is helpful just to get the PwP out of the house, walk in the neighborhood, chat with a neighbor, create a new recipe or anything to get your mind off the PD.  Walk the dog or exercise in any way is really helpful.

Brain Support Network volunteer Denise Dagan listened to the re-broadcast last week and has shared notes.

Robin

==========================================================

www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=9

Notes by Denise Dagan, Brain Support Network volunteer, May 2018

Parkinson’s Pain and Fatigue
Webinar by Michael J. Fox Foundation
July 21, 2016

Speakers:  Julie Pilitsis, MD, PhD, Adolpho Ramirez-Zamora, MD, and Toni Palumbo, person with Parkinson’s

PAIN

More than 75% of people with PD may experience pain.  Pain in PD can come from:
– Muscle rigidity and slowness
– Dystonia (muscle cramping)
– Constipation and bowel pain
– Musculoskeletal pain
– Central pain (burning sensations and sharp bursts of pain)
– Dyskinesia (involuntary movements)

Pain is as common in Parkinson’s as other non-motor symptoms.  Pain can be one of the earliest symptoms and the source is sometimes mis-diagnosed before tremor and/or gait and balance symptoms present to be able to diagnose PD and associate the pain as a PD symptom.

Pain can be exacerbated by stress, over exertion or illness.  The degree to which someone experiences pain varies by individual perception, medication effectiveness in controlling motor symptoms (on/off periods).  Dystonia during off periods (when medications are wearing off) can be painful.

Dyskinesia begins after 5-7 years of PD medication treatment and can be painful.

Pain is one of the most under treated symptoms of PD.

Talking to your physician (start with your neurologist) about your type of pain can direct treatment.  Discuss the location, feeling and duration of your pain to understand the root cause and target treatment for best chance of relief.
– Your doctor may add, reduce or change dopamine medication dose and type
– Anti-inflammatories, painkillers, opioids (as a last resort as it is constipating) and antidepressants may help manage pain
– Non-pharmacological methods include:
Exercise
Massage
Relaxation techniques (e.g. hypnosis, mindfulness, tai chi, yoga)
Acupuncture
Heating pad or cold pack

Start with your neurologist but you may need a team approach to manage pain as you determine the mechanism causing the pain or eliminate through one physician at a time where the pain does NOT originate.  You may need to move on to a gastroenterologist, orthopedist, urologist, other specialist or chronic pain management clinic.

There is concern with drug interaction in PD because there may already be a cocktail of meds prescribed just for the PD symptoms and adding more to treat pain is worrisome and could result in under treatment.  Depending on the source of the pain doctors can start with NSAIDs, and physical therapy which may include heat, massage, and exercise.  Of course, excruciating pain needs to be treated more aggressively and immediately.

Toni has been diagnosed for 12 years so treats pain more aggressively, including botox injections for dystonia.  She uses painkillers (not opioids) and finds hot tub, tai chi, boxing and socialization most helpful for pain.  The movement disorder specialist advises Toni on all over the counter meds and supplements before taking them to avoid medication interactions.  Toni finds boxing class + an hour of bike riding is too much and causes pain. Her movement disorder specialist helped her find a good exercise balance to avoid pain.

FATIGUE

Fatigue is another challenging non-motor symptom of PD.  Fatigue: Overwhelming sense of tiredness, lack of energy, and feeling of exhaustion that interferes with normal function.
– Estimates vary, but up to 70% of people with PD may experience fatigue
– Parkinson’s fatigue eases with exercise and activity
– Fatigue may be associated with:
Early sign of PD
Prolonged disease duration
Increased disease severity
Depression, anxiety and apathy
Sleep disturbances
Off episodes

Toni describes fatigue as being very close to apathy, as she can wake from a good nights sleep with fatigue.  She battles fatigue days by walking her dog every 20 minutes for 10 minutes, just to get up, moving and motivated.

Fatigue in PD is extreme exhaustion which cannot be explained by effects of or lack of medication, lack of rest, lack of sleep. Fatigue is improved with exercise and good medication management as it can be worse during off times.  Whereas, apathy in PD is a lack of drive to do things one normally particularly enjoys doing.

Fatigue can increase one’s experience of pain and short temper.  Any type of exercise will reduce fatigue (boxing, cycling, etc.), especially if you exercise together as socialization can distract from pain and fatigue.

Interventions and planning can help manage fatigue.  Doctors may adjust or stop medications or may prescribe other medications:
– Wakeful-ness agents
– Stimulants
– Antidepressants

Non-Medication interventions:
– Exercise
– Socialization
– Daily scheduling: planned rest and pacing of activities
– Vitamin supplements: vit. B, iron, folate and magnesium
– Lifestyle changes: caffeine, alcohol and tobacco reduction

You should discuss any supplements you take with your doctor as some can be toxic at certain levels, cause nerve damage and have other adverse effects.  Your physician should do blood work prior to recommending you take B complex or other supplements which can treat symptoms, including pain.

Caffeine has been studied in reducing fatigue in PD, but found to be ineffective.  It has also been tested in treating daytime sleepiness with inconclusive effects.  If you take too much caffeine or have clear worsening of fatigue when caffeine is out of your system you need to reduce caffeine and increase exercise.

QUESTION AND ANSWER

Q. How is DBS (deep brain stimulation) useful for treatment of pain?
A. In general, after DBS in the sub-thalamic nucleus people report a reduction of pain associated with movement.  (In 2016 they did not) know how long this effect lasts.  Perhaps existing DBS can be adjusted in order to treat pain.  As of 2016 animal trials were under way to learn more about this.

Q. Please provide a better definition of “off-time.”
A. The longer you have PD you are more likely to experience this more frequently.  On is when your medication is effective.  Off is when your medication has worn off.  As you take PD medications over many years, it wears off sooner and sooner, causing more off times and resulting in needing to take medications more frequently throughout the day.  There are newer medications and medication formulations to combat this effect.

Q. What about treatments for people in wheelchairs?
A. You definitely need to work with a good physical therapist for the best advice for exercising in a chair.  Chair yoga and tai chi are just the tip of the iceberg.  You don’t get an exercise pass because of the chair.

Q. What do we know about medicinal marijuana?
A. Marijuana has compounds that we thought can be helpful in PD, especially in dyskinesia and tremor although recent studies have not shown this. Concern about potential side effects, particularly with respect to cognition and falling are very real.  We don’t know how marijuana could affect fatigue because only stimulants have been tested for fatigue.  Marijuana has the opposite effect so it hasn’t been studied for fatigue.

Q. What can family members do to help with pain or fatigue?
A. Care partners should use socialization to get their person with Parkinson’s (PwP) up and going.  It really is helpful just to get the PwP out of the house, walk in the neighborhood, chat with a neighbor, create a new recipe or anything to get your mind off the PD.  Walk the dog or exercise in any way is really helpful.

Q. What is the effect of alcohol on fatigue?
A. As with caffeine, moderation is the key.  If you’ve spoken with your neurologist and determined it is fine, then fine.  If you are using alcohol to sleep you have a problem because alcohol should not be self medication.  Caffeine is the same, if you need it for wakefulness it will only cause you more fatigue and probably more pain.

Q. How do you determine what kind of pain you are experiencing?  It could be normal aging or a PD symptom.  Is it important to distinguish?
A. It is important to distinguish.  In the past we didn’t think pain was part of PD.  Neurologists thought of PD as exclusively a motor disorder, but now we know there are many non-motor symptoms, including pain.  Sometimes, it is very difficult to tell the cause of pain.  Most of the time the source is multi-factorial (has many causes).  It can be medication effect in addition to orthopedic or arthritic.  An in-depth discussion and complete history can help your neurologist to guide you to the most probably cause and most effective treatment.  Be persistent!

Q.  What do we still need to know about pain and fatigue in PD?
A. Treating pain and fatigue must know the mechanisms causing pain from the brain out into the body.  It would be great if we could have biomarkers and specific measures to determine if inflammation, neurologic sources, or others are the source of pain so we can target treatment.

Q. What do you recommend people do approach treatment of pain and fatigue?
A. The best thing is to have an open dialogue with yourself, your family and your doctors to determine what is contributing to pain and fatigue.  We sometimes don’t realize what stressors are contributing to worsened PD symptoms.  Socializing and exercising need to be as much a part of your treatment as medications, diet and sleep.

“A Parkinson’s Life and a Caregiver’s Roadmap” – Book Review

The Northwest Parkinson’s Foundation (nwpf.org) has a community blog. Recently a blogger named Pete Beidler reviewed a book by Jolyon Hallows titled “A Parkinson’s Life and a Caregiver’s Roadmap.” In the book, Jolyon describes his journey with his wife Sandra, who lived with Parkinson’s Disease for 20 years. The third part of the book is focused on caregiving.

The reviewer describes the third part this way: it “draws from Hallows’ own experience to give to other caregivers advice about what he calls the three dimensions of caregiving: the physical, the structural, and the emotional. I recommend the book for readers who want to know the gritty details of what probably lies ahead for them: the inevitable decline, the end of driving, the bedside commode, the in-bed sponge bath, the dressing, the legal decisions, the end-of-life decisions, and so on. … Hallows says that among the lessons he has learned in confronting Parkinson’s is that it is good to seek humor in dealing with situations that are not in themselves funny: ‘laughter is not disrespectful’.”

You might enjoy reading this book. If you do, please share what you learned. And consider donating the used book to our local support group’s lending library.

Robin

=========================================================

nwpf.org/stay-informed/blog/pete-beidler-reviews-jolyon-hallows-a-parkinsons-life/

Northwest Parkinson’s Foundation
PD Community Blog, May 17, 2018
Pete Beidler Reviews “A Parkinson’s Life”

A Parkinson’s Life and a Caregiver’s Roadmap, by Jolyon E. Hallows. Burnaby, British Columbia, Canada: WCS Publishing, 2018. 225 pp.

In his Afterword to “A Parkinson’s Life and a Caregiver’s Roadmap,” Jolyon Hallows confesses to a certain uncertainty of purpose: “When I started writing this book, my motivations were unclear. It seemed important to me, but I wasn’t sure why” (185). By the end he seems to have found clarity of purpose. He wanted his readers to know what a Parkinson’s marriage is really like, both for the one with the disease and for the caregiving spouse.

Hallows divides his book into three parts. Part I, Prelude, gives the history of the author’s and his wife Sandra’s life together before she receives her diagnosis, and it describes the basic facts about Parkinson’s disease and the various treatment options for people who have it. Part II, Living with Parkinson’s, gives a mostly chronological account of the progression of Sandra’s disease and her husband’s increasingly desperate efforts to care for her. Part III, Caregiving, draws from Hallows’ own experience to give to other caregivers advice about what he calls the three dimensions of caregiving: the physical, the structural, and the emotional. I recommend the book for readers who want to know the gritty details of what probably lies ahead for them: the inevitable decline, the end of driving, the bedside commode, the in-bed sponge bath, the dressing, the legal decisions, the end-of-life decisions, and so on.

Hallows is an excellent writer. He has a rare gift for explaining complicated concepts in simple language. What does a dopamine neuron do? Hallows explains it this way:

“Let’s say you pass a storefront in the mall and you see something in the window that interests you. Do you go into the store to examine it or do you move on? It all depends. Do you have the money? Is there someone waiting for you at the coffee shop? Are you in a hurry? Do you really need, or want, whatever this is? The evaluation of each alternative—to go into the store or to move on—is one of the things the dopamine neurons provide. They help us choose.

But what happens when the signals fail? In that case, there’s nothing to tell the brain what to do. So, lacking direction, it does the logical thing—it freezes,” (19–20).

Why can’t we get artificial dopamine into the brain to replace the natural dopamine that the brain has stopped making? Hallows elaborates:

“The brain is persnickety. It doesn’t tolerate some of the stuff the bloodstream carries, so it’s protected by something called the ‘blood-brain barrier,’ which acts like a security guard in an exclusive gated community, keeping out the riffraff. Among the many substances that can’t cross the barrier is dopamine. You can take all of it you like, but none of it reaches your neurons. . . . Enter levodopa,” (32).

A Parkinson’s Life and a Caregiver’s Roadmap is not about malls, of course, or coffee shops, or gated communities, or riffraff, but Hallows uses these familiar concepts to help us to understand unfamiliar terms like dopamine neurons, blood-brain barriers, and freezing.

One of the attractive features of Hallows’s writing is his sense of humor. When he introduces levodopa, for example, he quips, “No, levodopa is not curt advice to someone married to a dullard” (32). Get it, leave-a-dope? Another example: when Hallows’s wife Sandra has deep brain stimulation surgery, he has to learn how to use the control stimulator: “I showed the stimulator to Sandra’s sister Vivian and boasted I could now turn Sandra on and off. She said it was a sorry excuse for a man who needed an electronic device to turn his wife on,” (78). Toward the end of the book Hallows says that among the lessons he has learned in confronting Parkinson’s is that it is good to seek humor in dealing with situations that are not in themselves funny: “laughter is not disrespectful” (183).

One of the most striking features of “A Parkinson’s Life and a Caregiver’s Roadmap” is its honesty. Sandra lives for more than two decades after her initial diagnosis. During those decades she grows less and less able to do the things she had always enjoyed: her work as a nurse, her driving, her ability to travel, her ability to take care of herself, her independence. It would perhaps have been possible for Hallows to report Sandra’s losses in positive terms as gains in love or devotion or knowledge or humility, but Hallows does not do that.

He focuses squarely on the disabling features of the disease: “In the final stage of the disease, the person is bedridden and needs help in all areas of his or her life including getting dressed, eating, and personal hygiene” (26). Hallows tells us that he has to brush Sandra’s teeth, help her get on and off the portable bedside commode, wipe her, give her sponge baths in bed, help her put her panties and bra on, and so on. Nor does he sugarcoat the unpleasantness of the disease for both of them by promising a cure: “Parkinson’s is far more complex than researchers had suspected and. . . . it will be a long time before there’s a cure on the horizon” (20). Furthermore: “This prolonged research is expensive—one source cites over a billion dollars and ten to twelve years to bring a new treatment to market. . . . So even if researchers find a real cure, it will take years to prove it” (28).

The medications and surgeries that are now available have helped many Parkinson’s patients, but they can help for only so long: “Medications have given generations of Parkinson’s patients extended time and a better quality of life, but there’s only so much they can do in the face of the disease’s inexorable progress,” (34). When Sandra dies, Hallows tells readers that “Sandra put up a valiant fight against her Parkinson’s. But it’s not a fight anyone ever wins” (181).

Should you read this book? That depends. If you want to know the grim facts about what probably lies ahead for people with Parkinson’s and for those whose lot it is to care for them, “A Parkinson’s Life and a Caregiver’s Roadmap” is a good choice. If you remember always that Parkinson’s follows a different trajectory for each person and that no single “roadmap” will work for all caregivers, then Hallows’ book can help you to anticipate and plan ahead for some of what probably lies in front of you. As you come to terms with the disease and with its almost inevitable downward progression, you may find solace in learning from this book that you are not alone.

Pete Beidler has read and reviewed many books about Parkinson’s disease. Parkinson Pete’s Bookshelves: Reviews of Eighty-Nine Books about Parkinson’s Disease (Coffeetown Press, 2018, ISBN 978-1-60381-746-2) can be purchased here.

Daily caregiving balancing act – how much to help?

Brain & Life magazine (brainandlife.org) is published by the American Academy of Neurology.  In the most recent issue, they have a good article on caregiving.  Here’s an excerpt:

“As many caregivers know, offering just the right amount of help can be challenging and stressful for both sides, and requires time and communication. And even after striking the right balance, the needs of the person being cared for may change, requiring caregivers to recalibrate.”

Here’s a “caregiving rule” suggested by a nurse practitioner in the article:

“Dr. Resnick has what she calls a three-time rule: A caregiver allows a patient three tries at a task before stepping in. If the task is putting on a shirt, Dr. Resnick will do one step, perhaps helping the patient put on one sleeve, and then step back. If getting the button secured is the next challenge, she breaks down the action and allows the patient to try again. If the patient is truly not up to a task, Dr. Resnick suggests working together to accomplish it, for example, by placing a patient’s hands over your own as you perform an action.”

Here’s a link to the full article:

www.brainandlife.org/the-magazine/article/app/14/2/20/in-the-balance-knowing-how-much-to-help-is-a

In the Balance
Knowing how much to help is a daily challenge for many caregivers. Our expert advice can help you find that sweet spot.

by Natalie Pompilio
April/May 2018
Brain & Life

Using medical cannabis to treat PD – story of Frank De Blase

On May 9, a news station in Rochester, NY interviewed Frank De Blasé, a music writer, photographer and person with Parkinson’s. Frank says that Parkinson’s has hijacked his life causing him to think before he does anything — walking, talking, swallowing, even thinking!

Two physicians were also part of the news show — Frank’s movement disorder specialist, Dr. Michelle Burack, and the palliative care specialist who certified Frank to buy medical marijuana in the state of New York, Dr. Robert Horowitz. The interviews focus on the use of cannabis for Parkinson’s symptoms. In the end, Frank did not find cannabis helpful for his most bothersome PD symptoms but feels it has improved his sleep.

That’s probably enough for most of you. Read more if you are interested….

Robin

==============================

wxxinews.org/post/connections-using-medical-cannabis-treat-parkinsons-disease

Notes by Denise Dagan, Brain Support Network volunteer

Using Medical Cannabis to Treat Parkinson’s Disease
By Evan Dawson and Megan Mack
WXXI AM News Connections
May 9, 2018

This 51:27 minute audio recording is an interview by Evan Dawson, the host of Connections, a WXXI public radio production, in Rochester, New York. In this program from May 9, 2018, Evan’s guests are Frank De Blase, a music writer, photographer and person with Parkinson’s, Frank’s movement disorder specialist, Dr. Michelle Burack, and Dr. Robert Horowitz, the palliative care specialist who certified Frank for a medical marijuana card in New York.

In the beginning of the audio, Evan introduces his guests and tells listeners that Frank wrote an educational and entertaining article for the City Newspaper in Rochester, NY about the year he spent researching and experimenting with medical cannabis specifically to treat his Parkinson’s symptoms. So, I started by reading and summarizing that article. Then, I went back to listen to the interview. Here are some things that stood out for me:

Frank describes in the article his experience having Parkinson’s disease as: “…I don’t have tremors or cognitive difficulty…I’ve learned how to manage sharing the same body — my body — with PD. Its like having a 4-year-old roommate living inside me, with cloven hooves and ADD and who always wants to start a tickle fight.” He tells Evan that Parkinson’s has hijacked his life causing him to think before he does anything (walking, talking, swallowing, even thinking!).

Dr. Burack – medical cannabis is not FDA approved, but is regulated by the Drug Enforcement Agency (DEA) as a schedule I drug (with heroin & LSD). When New York State approved medical cannabis physicians felt it was a political move as there is no systematic scientific research to show its effectiveness for any medical use. There is some anecdotal evidence it can help Parkinson’s pain and uncontrollable muscle spasms, but not at all most Parkinson’s symptoms.

Dr. Horowitz – can certify a person qualifies for medicinal trial of cannabis at which time that person may purchase medical cannabis at a state approved dispensary. As it is not FDA approved it cannot be prescribed, therefore it will not be covered by insurance. Frank spent about $400 on various formulations to see if it would relieve him of any symptoms.

Dr. Burack – First, do no harm. As there is no systematic scientific evidence demonstrating the effect of cannabis on those with Parkinson’s, she only knows that with Parkinson’s there is loss of neurological redundancy and, therefore less ability to compensate for the effects cannabis may have. She cannot say if any individual with Parkinson’s will have severe effects from cannabis, like hallucinations or psychosis leading to falls or hospitalization.

One medication Dr. Burack prescribes for Parkinson’s disease has three molecular compounds within the one pill. Cannabis has over 100 molecular compounds.

Dr. Horowitz – To make it more complicated, each plant has different combinations of those 100 compounds. He has a 1/2 hour power point he shared with Frank to explain what is known and unknown about medical cannabis.

His experience is in palliative care for all types of illnesses. He is not a raving fan of medical cannabis, but is grateful to have it in his toolbox for some conditions. Sadly, improved sleep does not qualify someone for medical cannabis. He cannot certify someone for an ‘off-label’ use, meaning a use that is not specified on the NY state’s approved list of uses, or he can go to jail.

Cannabis is a lower risk for long term pain management than opioids, which is an approved use in NY. Dr. Horowitz has certified several people with hard to manage pain who are taking significantly lower doses of opioids along with medical cannabis. More study of medical cannabis is definitely warranted in this area.

Frank shared that without his Parkinson’s medications he wouldn’t be able to move, but with them he moves in a jerky fashion and has speech stutters. He has already had DBS surgery to some benefit. He hoped cannabis would compensate for the Parkinson’s medication side effects causing stuttering of his speech. Dr. Burack shared this hope.

He started with a tincture under his tongue to no effect, then tried vaping with a high THC content which made him high and caused problems with his Parkinson’s. Finally, he tried vaping with higher CBD and lower THC which helped him sleep, although that is not the effect he was looking for. He also got gummy bears from California with 100% CBD to no effect. He did not try any formulation for a sustained period of time. He only tried each for a week at a time so no effectiveness can be definitely determined.

Dr. Horowitz – certifies a person for trial up to one year and no longer. He sees that person periodically throughout that year. In NY there are only tinctures, vaping and tablets in THC to CBD ratios (20:1, 9:1 and 1:1), so only 9 products. The tincture is, apparently, nasty.

A caller tried medical cannabis high dose CBD capsules for nerve pain, rheumatoid arthritis, shoulder pain and leg muscle cramping with tremendous relief. She had been getting repeated cortisone shots at a pain clinic who could not certify her for medical cannabis. She got similar rejection from her rheumatologist. Her chiropractor sent her to Dr. Broadwell with her medical history, who certified her. NY State’s medical marijuana website for those who are certified to get an appointment to purchase cannabis products cannot use Safari as a web browser. Firefox works well. Once she figured that out it was not an arduous process. Frank also found that once they found someone registered with the state to certify patients for medical cannabis use, the process is pretty easy.

29 states and DC have legalized medical marijuana and 9 states and DC have legalized recreational marijuana. Frank believes the gross sales are so high that marijuana will become legal federally, eventually.

Dr. Horowitz – says there are several obstacles to studying medical marijuana but none of those will be overcome as long as it is still a schedule I drug with heroin and LSD.

Dr. Burack – says individuals really should test various medical cannabis formulations for longer than a couple doses and by controlling as many factors as possible to really determine what, if any, effect is found. Not as many research dollars and medical attention is given to cannabis because there is so much hassle involved legally with so little potential return as compared to other, more easily studies substances and potential treatments with great potential return.

Frank De Blase reports that medical cannabis did not help his Parkinson’s symptoms

This is an April 2018 Rochester, NY newspaper article by Frank De Blasé, well-known music writer, photographer and Parkinson’s patient.  For a year, he researched medical cannabis in New York state and its possible benefit for Parkinson’s Disease (PD) symptom treatment, testing it on himself, of course.  He reports that medical cannabis offered no help for his PD symptoms.

www.rochestercitynewspaper.com/rochester/parkinsons-cannabis-and-hope/Content?oid=6235237

“Reframe Your Experience” (with a neurological disorder)

This recent blog post on the seven key steps to take after a Parkinson’s diagnosis doesn’t really have much that’s new.  However, I liked step #7, titled “Reframe Your Experience.”  That step is worth sharing because it applies to all of us — whether we have a neurological diagnosis (not necessarily Parkinson’s) or a family member with a neurological diagnosis.

Here’s #7 — “Reframe Your Experience”:

In addition to getting support, thinking positively can help you come to terms with your diagnosis. One of [neurologist Dr. Melita] Petrossian’s patients has taken to viewing Parkinson’s as a friend (he calls him “Mr. P”), while others repeat mantras like, “I have Parkinson’s, but Parkinson’s doesn’t have me.”  Petrossian acknowledges that this approach may feel a little cliched or trite, “but having a mantra that recognizes your struggle without diminishing who you are and without overemphasizing the role Parkinson’s plays in your life can help you cope and become more resilient.”  [Another of her patient’s said]:  If you live with Parkinson’s, “you have to recognize that you have to play a different game, you have to change the rules of the game.” In other words, [Petrossian] says, “you have to re-imagine your life.”

The full blog post is copied below.

Robin

——————–

www.seniorhomes.com/w/7-key-steps-to-take-after-a-parkinsons-diagnosis/

7 Key Steps to Take After a Parkinson’s Diagnosis
by Katherine O’Brien
SeniorHomes.com
April 26th, 2018

Finding out you have Parkinson’s disease, a progressive brain disorder characterized by tremors and changes in speech and gait, is a hard pill to swallow.

There’s a lot to take in, and it can be incredibly overwhelming not only for the person with the diagnosis, but for their family. But with more research into the disease now than ever before, there are a number of smart strategies you can take to help slow down the disease’s progression, allowing you to live life to your full potential.

1. Connect With a Neurologist
Step number one: Ask your primary care doctor to refer you to a neurologist, preferably one who is a movement disorders specialist. Patients who work with neurologists tend to have better results than those who don’t, says Melita Petrossian, Director of the Pacific Movement Disorders Center in Santa Monica.

But don’t just take her word for it—this study published in the journal Neurology shows that patients treated by neurologists may live longer and are less likely to be placed in a nursing home or to break a hip. Even if you can only get to a specialist once a year, it can still can help, says Petrossian. Another option for those who live far from major medical centers: video conferencing.

2. Find Meds That Work for You
Although there’s no cure for Parkinson’s yet, medications can often dramatically help control symptoms. Do be aware that PD drugs can produce significant side effects like involuntary movements. Additionally, you must take meds exactly as directed to avoid side effects such as gait freezing, unpredictable incidences of being unable to move or keep moving.

Another caution: keep your protein and fat intake in check, as too much of either can interfere with your body’s ability to absorb Parkinson’s medication. If medication doesn’t adequately control your symptoms, deep brain stimulation, which involves the implantation of electrodes in the brain, is another–albeit riskier—option.

3. Participate in Research
Taking part in clinical trials — particularly those seeking treatments to slow or stop disease progression – is a direct way to contribute to finding a cure for PD. “I support patients enrolling in clinical trials because there is a tremendous amount of work left to understand Parkinson’s disease and how to prevent it,” says Dr. Karl Dhana,” Senior Vice President of Medical Affairs at MorseLife Health System in Florida. “We need to continue to develop new and more effective treatments for Parkinson’s which will hopefully lead to a cure.”

4. Get Moving and Keep Moving!
Exercise is another key way to manage Parkinson’s. “All the research shows that the earlier you get on a very Parkinson’s-specific exercise routine, the better it goes for your long-term quality of life,” says physical therapist Brian Keenoy, who treats PD patients at the Generation Care rehab facility in Michigan.

Several exercise programs have been specially designed for people living with Parkinson’s, including Rock Steady Boxing and Dance for PD. Keenoy says that dancing is a good choice for people with the disease, as it involves conscious and purposeful movement that increases the brain-body connection.

Both dancing and Tai chi, another exercise that involves conscious movement, can also improve your balance and reduce your risk of falling. “When you have Parkinson’s, you can’t correct yourself when you lose your balance because the disease decreases how quickly you can move to steady yourself,” says Dhana. In addition, he notes that Parkinson’s and PD medications cause blood pressure to drop in patients when they stand up, sometimes leading to light-headedness and dizziness, which also increases the risk of falling.

5. Manage Your Mood
As with many diseases, managing your mood is a fundamental part of the rehabilitative process. Keenoy, who encourages his patients to do one thing every day that brings them joy, notes that patients who feel depressed may abandon their exercise routine (the loss of dopamine-producing cells in people with Parkinson’s also affects motivation.) In addition, depression can also exacerbate the symptoms of Parkinson’s. As Dhana points out, “if someone is anxious and nervous, it can make the tremors worse.”

Petrossian believes that the emotional response to Parkinson’s can sometimes be more devastating than the physical symptoms. “The bigger issue I see is that a lot of people with Parkinson’s have anxiety and depression, which goes beyond just stress, and I think those need to be addressed, sometimes with cognitive behavioral therapy and sometimes with medication,” she says.

6. Seek Out Support
“Part of the problem for someone just diagnosed with Parkinson’s is a sense of isolation and bewilderment, a sense of identity loss,” Petrossian says. One way to counter the isolation and to adjust to living with Parkinson’s is through peer support. (You can find local support groups—including the PRESS Program for recently diagnosed PD patients— on the American Parkinson’s Disease Association website.)

“Parkinson’s is a progressive neurological disorder, and if you take that on yourself…it can be a little daunting,” says Keenoy, who encourages his patients to build strong social networks. “You’re not the first person diagnosed with Parkinson’s where you live, and so you don’t have to figure it all out on your own,” he says.

7. Reframe Your Experience
In addition to getting support, thinking positively can help you come to terms with your diagnosis. One of Petrossian’s patients has taken to viewing Parkinson’s as a friend (he calls him “Mr. P”), while others repeat mantras like, “I have Parkinson’s, but Parkinson’s doesn’t have me.”

Petrossian acknowledges that this approach may feel a little cliched or trite, “but having a mantra that recognizes your struggle without diminishing who you are and without overemphasizing the role Parkinson’s plays in your life can help you cope and become more resilient.”

In contrast, one of her patients told her that having Parkinson’s means he will “never hit a ball out of the park,” no matter how hard he tries. At the time, Petrossian, who was “blown away” by his “devastating way of thinking about life,” didn’t know how to respond. “How do you get up every day and exercise and everyday try to be positive when you are constantly feeling like you are in a losing battle,” she says.

Later, another patient gave her the answer: If you live with Parkinson’s, “you have to recognize that you have to play a different game, you have to change the rules of the game,” Petrossian says. In other words, she says, “you have to re-imagine your life.”

For his part, Keenoy is adamant that people living with Parkinson’s can live a full life. “I’ve seen individuals come in pretty bummed out because they’ve just got a really big diagnosis, but after you give them tools, they realize they can adapt things so that they really enjoy their life,” he says. “I believe one-thousand per cent that people with Parkinson’s can live a long fruitful, joyful, high-quality life.”