“Treating PSP, MSA, and CBD – What can be done?” Webinar Scheduled for February 27th

Stanford University and Brain Support Network are co-hosting
another webinar next month on treating progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration. The webinar is scheduled for Wednesday, February 27th, 3-4pm PT. Please register in advance.

Details are:

Treating PSP, MSA, and CBD – What can be done?

When:
Wednesday, February 27, 3-4pm Pacific Time (US and Canada)

Speaker:
Brent Bluett, DO, movement disorders specialist, Stanford Movement
Disorders Center

Dr. Bluett will address these topics:

* What symptoms of PSP, MSA, and CBD are amenable to improvement?
* How can physical therapy, occupational therapy, exercise, and
assisted devices help?
* What about eye movement training?
* What about botox?
* What are some eating and drinking strategies?
* How can you ask your neurologist about these treatments?

Those coping with advanced Parkinson’s Disease or Lewy body dementia may find some aspects of this webinar useful.

Register in advance for this (free) webinar.

After registering, you will receive a confirmation email containing
information about joining the webinar.

________________________________

Further details on the speaker:

The speaker is Dr. Brent Bluett, a movement disorders specialist at
Stanford University.  He is an expert on atypical parkinsonism
disorders.  He is the director of the Stanford Center of Excellence
for Progressive Supranuclear Palsy.  Dr. Bluett’s research focuses on
fall prevention in all movement disorders.  He received NIH grant
funding to explore freezing of gait in Parkinson’s Disease, in order
to better understand the underlying pathophysiology.

________________________________

Further details on the webinar host:

The webinar will be hosted by Sharon Reichardt Walker, whose late
husband Den had progressive supranuclear palsy (PSP), confirmed
through brain donation. She is a longtime member of Brain Support
Network, a nonprofit focused on the four atypical parkinsonism
disorders, including PSP, multiple system atrophy, corticobasal
degeneration, and Lewy body dementia. Sharon has spoken about the
importance of brain donation for research and the challenges of being a PSP caregiver to support groups and conferences.

________________________________

There will be time for questions-and-answers with Dr. Bluett and Ms.
Reichardt Walker.

If you can’t make it on February 27th, we encourage you to register
for the webinar so that you will be alerted when the recording is
available online.

Brain Support Network, the co-organizer, will be posting notes from
Dr. Bluett’s presentation and the Q-and-A to its website within a few
days of the webinar.
________________________________

Questions?

Please contact Robin Riddle, Brain Support Network.

Best of the BSN Blog 2018

As we celebrate the beginning of a new year, we wanted to share our most visited blog posts and articles from 2018. It is our hope that we have provided meaningful resources to those with neurological disorders, their families, and their caregivers.

Please feel welcome to share your thoughts and suggestions about future content with our support staff.

Join our email mailing list to receive relevant articles concerning the four atypical parkinsonism disorders and caregiving directly to your inbox.

 


OUR TOP POSTS OF 2018


 

Apps to increase vocal loudness and improve fluency (speech therapist’s favorites)

 

PSP Stages/Phases, by two caregivers

 

 

“Cannabis and Parkinson’s Disease” – Lecture Notes

 

 

Constant groaning in PSP (case report)

 

 

Caregiver Stress Syndrome: Identifying Symptoms, Finding Solutions

 

 

“Applause sign” to diagnose PSP?

 

 

Webinar Notes – Hallucinations and delusions in LBD

 

 

Mayo Rochester finally reports results from mesenchymal stem cell study in MSA

 

Sharon’s Treatment Regimen for CBD

 

 

Five types of PSP and diagnostic challenges

 

 

Stress Symptoms, Signs, and Causes: Improving Your Ability to Handle Stress

 

“Are you a healthy caregiver” – 10 question test

 

 

Five Approximate Phases of Lewy Body Dementia (as seen by caregivers)

 

“Persisting in the Face of Caregiver Difficulties” – Webinar Notes

Support Brain Research With Your Donated Stock

Donating long-term appreciated securities to BSN benefits families affected by neurological disorders and potentially you as well! Gifts of long-term appreciated securities may have tax advantages that could maximize your gift and reduce your taxes.

Potential benefits of donating stock may include:

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Please contact BSN at +1 650-814-0848 with any questions about donating stock. Please send email to [email protected].

Prefer to make a traditional contribution via credit card? Click here to donate.

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.

———————–

RECORDING

The webinar recording can be found here —

https://youtu.be/hr0TCWqBgUY

———————–

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

———————–

FUTURE WEBINARS ON MSA

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

———————–

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

———————–

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.

———————–

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.

“Are you a healthy caregiver” – 10 question test

Here’s a 10-question test for caregivers to determine if they are
injuring their own health.

The authors say: “On average, it takes family caregivers four years
to reach out and ask for help. Don’t be part of those statistics. Ask
for the help you want and need. You will be a healthier caregiver and
the person receiving care will be better cared for.”

Robin

—————————————————————

www.familycaregiversbc.ca/caregiving-parents/are-you-a-healthy-caregiver/

Are you a healthy caregiver?
July 19, 2018
Family Caregivers of British Columbia

Many caregivers understand the importance of caring for themselves
and, yet, in another breath, say things like, “I feel overwhelmed,”
“I’m stressed out,” “I’m too busy to eat, let alone find time to stay
healthy,” and “There are so many things to do, how do I make time for
myself?”

Start by checking in with yourself. Respond to the statements below to
recognize the positive steps you are already taking to ensure you stay
healthy, and to identify areas where you might consider action to help
keep you resilient.

1. I am satisfied with my overall personal health.

Yes No

2. I have the skills and information I need to give the required care.

Yes No

3. I maintain regular contact with family and friends and make time
to spend with them.

Yes No

4. I can ask for help and accept help when it is offered. I know I
don’t have to, and can’t, do this alone.

Yes No

5. I can communicate effectively with the person I am caring for, as
well as with others involved in their care.

Yes No

6. I am aware of community resources available to help support me in
my caregiver role.

Yes No

7. I am aware of caregiver support groups (locally or online) and/or
have a supportive network where I can share my challenges and
successes.

Yes No

8. I make use of respite options available and take breaks away from
my caregiving responsibilities.

Yes No

9. I have gathered information about the progression of my care
recipient’s disease, so I know what to expect and can prepare in
advance as best I can.

Yes No

10. I know how to navigate the healthcare system and who to ask if,
and when, I need help.

Yes No

****************

Give yourself one point for every “Yes” answer.

8-10 Points
You are already taking several important actions to take care of
yourself and make sure caregiving is sustainable for you. Look closely
at any statements where you answered “No,” and consider whether
accessing more resources would be helpful for you.

5-7 Points
You understand the importance of self-care, but you’re not always able
to take action to support yourself. Consider any barriers you have to
self-care and ask yourself whether these are external (you don’t know
about the resources that exist to help you) or internal (you have
trouble asking for and receiving support). Sharing the care is
essential to finding enough time and energy for yourself. Choose one
statement where you responded “No” to work on this week.

Fewer than 5 Points
Without contributing to your own well-being, caregiving quickly
becomes overwhelming and unsustainable. Use this list of 10 statements
as a guide to creating a self-care plan; start with learning more
about the caregiver support resources available to guide you. It will
be important for you to identify resources you’re not currently using
in your social circle, such as family, friends, acquaintances and
neighbours, to share the care and create some much-needed space for
addressing your own well-being.

On average, it takes family caregivers four years to reach out and ask
for help. Don’t be part of those statistics. Ask for the help you want
and need. You will be a healthier caregiver and the person receiving
care will be better cared for.

 

“Aikido communication – Align, agree, redirect, and resolve” – notes

Caregiver Teleconnection, a service of WellMed Charitable Foundation,
hosts periodic conference calls on caregiving topics.  Last week, the
topic was “Aikido communication – Align, agree, redirect, and
resolve.”  The speaker was a gerontologist with the Texas Extension
Service, Andy Crocker.

With Aikido, one listens for areas of agreement or common ground and
uses “I” messages, which are particularly effective when emotions run
high.  With “I” messages, rather than “You” messages, caregivers can
de-escalate potentially confrontational situations between themselves
and family members or healthcare providers.  This approach is also
useful in de-escalating situations between caregivers and care
recipients, even if the care recipient has cognitive impairment.

The conference recording (audio only) is available here:

https://soundcloud.com/caregiverteleconnection/finding-common-ground-aikido-communication-with-andy-crocker-91018

Brain Support Network uber-volunteer Denise Dagan listened to the
conference call and shared her notes below.

To sign up for email announcements about these conference calls, check out:

http://caregiversos.org/caregiver-teleconnection/

Check out the many examples.  This approach is definitely worth trying.

Robin

————————————————————

Notes by Denise Dagan, Brain Support Network volunteer

Finding Common Ground: Aikido Communication
Speaker:  Andy Crocker, Gerontologist, University of Texas Extension Service

Caregiver Teleconnection
September 10, 2018

Communication is a process or cycle.  When I speak, you respond based
on your individual interpretation of what I said (based on your
experience).  Your sensory perception, health, patience, etc. impacts
your response to my comment(s).

The process begins with how I choose to phrase what I say.  “I”
messages increase the chances of being heard with a positive tone.
“You” messages are confrontational and may result in conflict.

Example:  Conversation between siblings (Andy and Katie) caring for their Mom.

Andy: “You need to help around the house.”  The tone is accusing Katie
of not doing enough around the house and may result in conflict.

Andy: “I need help around the house.”  The tone is stating his need
for help around the house and is not accusing or blaming.

Another example:

Andy: “You made me so angry!”  Blaming Katie for Andy’s anger.

Andy: “I feel angry that you…”  Blaming Betsy’s action for Andy’s
anger.  One level removed is less confrontational.

Sometimes, it is best to make an appointment to speak about something
and actually plan what you will say to get your message across with a
level head.
* Take out “You” messages in the plan for how to communicate your
message or your ask.
* Keep out irrelevant factors from your history together from the discussion.
* Never say, “You always…,” or “You never.…”
* Be sure to express your appreciation for assistance others provide
in your caregiving so they feel appreciated.

Aikido Communication

Tenets / 4 Steps:

Align – find the other person’s perspective.  See the situation from
in the other person’s shoes.
* How would I feel if I were in their shoes
* What does this person need form me?  Praise, appreciation, control?
– Ask: Give me an example of something I can do?  If I could do one
thing to help you, what would that be?
– Rather than saying, “What do you want from me?!” or “What am I
supposed to be doing?!”

Agree – identify issue and concerns with common ground (goals, needs,
feelings) to get on the same page
* I share your concern about…,  I agree we need to do something about…,

Redirect – move to productivity
We both want to do what’s best for…

Resolve –
I think we should explore…,  I think…would be helpful for…

Sometimes, you have to agree that there is no resolution or solution
to the problem at hand.  That, in itself, is progress.

Aikido can be used in communicating with a person who has cognitive
impairment or dementia, where higher order functioning is not present.

Example: Grandson caring for grandfather with dementia who was a
Marine Colonel.  Every morning he rises at 4am and get the day
started.  You can’t tell him he’s no longer a Marine and has no place
to go because being a Marine is his experience of the world.  You must
align, agree, redirect and resolve to understand his motivation for
what he’s doing.  To help him maintain his dignity, activity,
independence as much as possible without adding fuel to verbal or
physical conflict.

* Align – he believes he is a Marine so you must cooperate with what
you can do at home within his ‘world’.  You cannot keep him in bed
longer.

* Agree – you know he always started with shaving, dressing,
breakfast, exercise – all things you can assist him with that align
with his belief that he is a Marine and are things he can do
productively at home.

* Redirect – ask for his help around the house today and direct his
attention to KP duty / cleaning up breakfast. You know he always
shaved twice daily, so be sure to include that activity to the daily
schedule.

* Resolve – In dealing with someone who has dementia, resolution is
that grandpa sleeps through the night and accepting that he rises as
4am, obtaining grandpa’s cooperation, calm demeanor, emotional calm
throughout the day.  Recognizing that what works one day may not work
the next day – just give your initial inclination / plan a try and see
how effective it is.

Aikido Communication is one more tool in your toolbox to help get
through your day, along with:
* Mindfulness & relaxation techniques
* Respite resources
* Caregiving or Home maintenance assistance (volunteer friends/family
or hired help)

Question and Answer

Q. Aikido is like Naomi Feil Validation.

A. Both her method and Aikido have the same understanding of how to
understand and manage someone with dementia, but Validation is less
useful for direct communication.  We can be assertive without being
aggressive or confrontational.  Using the “I” messages to identify how
you feel and what you need and suggest what needs to be done without
the conversation devolving.  It is not easy because it does not come
naturally to us, but it is effective.

Q. I found I always did what my father told me, but now that he has
dementia I find I am the one who needs to tell him what to do and how
to do it to keep him healthy and safe.  There is a big disconnect when
your eyes see your father, but your mind tells you he is not the same
man he was.  The disconnect is painful and challenging.

A. Good future topics are role loss or role change.  There is a good
amount of loss and grief when the person you used to look to for
direction and advice is no longer available to you because of their
cognitive changes.  At the same time, you need to take charge and do
what’s necessary to look after him.

A. There are family members surrounding the primary caregiver and care
recipient who are all struggling with grief before the care
recipient’s death (anticipatory grief).  There is grief with the loss
of each of the care recipient’s abilities.  Often there is a family
member who doesn’t want to help or visit because they don’t want to
see the care recipient in ’that’ state.  That’s anticipatory grief.
Sometimes, it is helpful to identify it as grief in a conversation
with them to try to help them work through their grief and garner
their help in caring until the person actually does pass away.  They
may be adamant that they don’t want to see their family member in
’that’ state.  It is sad but you must respect that avoidance is their
way of dealing with their grief.

“3 Legal Documents Caregivers Need to Manage a Senior’s Healthcare”

This short article is about the three documents — HIPAA authorization, medical power-of-attorney, and advance health care directive — caregivers should make sure they have if they are managing the care of a senior.  Although this article is directly to adult children caregivers, this advice applies to all caregivers, even spouse caregivers.  We have met many spouse caregivers over the years who do not have these documents either.

See AgingCare for the article:

www.agingcare.com/Articles/legal-documents-to-make-healthcare-decisions-for-your-parent-146623.htm

3 Legal Documents Caregivers Need to Manage a Senior’s Healthcare
Marlo Sollitto
Updated May 3, 2018
AgingCare

 

 

‘It can be isolating’: How caregivers handle the stress and find support

This short article from the Chicago Tribune is about how isolating and
stressful caregiving is.

Some people may recognize the name Denise Brown, who lives in the
Chicago area. She started the website caregiving.com as a result of
her experience caring for her elderly parents.

Denise Brown offers five suggestions for caregivers in the article:

* “If you are struggling, it’s not because you are failing. It’s
because what you’re doing is really hard.”

* If you need help and aren’t sure where to start, reach out to your
doctor, local area agency on aging, a disease-specific
organization…, a social service agency like United Way, or your
employer’s Employee Assistance Program.

* If the doctor you contact can’t offer suggestions, nudge him or her
to create a list of resources.

* Find ways to relax.

* Make self-care a priority. “We have a tendency to think that we’re
not doing enough,” she said. “I think it’s important for us to sit
still for a few minutes every day and know that we are doing enough —
that our work and our caring and our love is enough.”

Here’s a link to the article:

www.chicagotribune.com/lifestyles/sc-fam-caregiving-support-0911-story.html

Definitely worth reading….

Robin

 

“Dementia Spouse Caregivers’ Relationship Closeness” – Dissertation Excerpts

This is a doctoral dissertation from 2017 on the impact of the
relationship for a spouse caring for a husband or wife with dementia.
Though dementia caregiving is the focus of this dissertation, I think
the document applies to caregiver spouses where the care-recipient
does NOT have dementia.

The document is 280 pages so I didn’t read it all but skipped around.
Despite the fact that the language is scholarly, many of the pages are
worth reading.

I’ve provided two long excerpts below. The second excerpt includes
this sentence: “It is also known that a spouse’s vows, vigilance,
worry and tireless caregiving result in incredible morbidity.” I
think this refers to the caregiver’s morbidity. The dissertation’s
author indicates that “caregivers would be in better states of health
and wellness if clinicians were aware of the [couple’s] ability to
communicate…”

Here are the two excerpts I found the most interesting:

(From page 55 and 56, using the page numbers of the dissertation)

Couplehood. Lobo Prabhu et al. (2005) skillfully depicted the
relationship of husbands and wives… When dementia was introduced,
the fragile balance was thrown into chaos. The authors constructed a
framework to explain why couples stayed together and offered practice
implications to enable spouses to continue caregiving with sound
support. They reported that couples retained togetherness, despite
dementia, when the basis of stable marriage included concepts of:
1. quid pro quo (an equal exchange or substitution),
2. values of commitment (respect, pride, and accomplishment despite sacrifice),
3. holding on to the familiar (vs. letting go and abandonment),
4. rupture vs. repair of marital bond (what is the minimal
gratification the caregiver requires to sustain the relationship? will
a smile or eye recognition suffice?),
5. mastery of separation (decisional capacity and choice migrates from
care-recipient to caregiver),
6. spirituality (altruism and prayer),
7. changes in sexuality (loss of shared togetherness) and
8. emotional support (social connections, family support, and kin-care).

(From page 80 of the dissertation)

Regrettably, the couple’s “together life biography” and pre-dementia
relationship closeness are greatly underestimated in clinical practice
(Davies & Gregory, 2007). Pre-dementia relationship closeness and
current relationship closeness colors the way a spouse caregiver makes
decisions and renders effective and nurturing care, or not. It
triggers advocacy or ambivalence. It is also known that a spouse’s
vows, vigilance, worry and tireless caregiving result in incredible
morbidity. Moreover, empiric literature has shown relationships
characterized by kindness, respect, and warmth, or less criticism,
conflict, and family dysfunction are associated with better caregiver
and care-recipient morbidity and caregiving outcomes. Additionally,
the care-recipient behavior is a significant controlling factor for
the caregiver’s reciprocal emotions, relationship, burden, and
depression. Therefore, caregivers would be in better states of health
and wellness if clinicians were aware of the dyad’s ability to
communicate, the efficacy of their interactions, the strengths, and
weaknesses activated by dementia disease and the vulnerabilities now
present in the dementia dyad’s life together experience.

Here’s a link to the full document, in case you’d like to check out
more of the dissertation:

https://opencommons.uconn.edu/cgi/viewcontent.cgi?referer=&httpsredir=1&article=7648&context=dissertations

Heart and Soul: A Phenomenology of Dementia Spouse Caregivers’
Relationship Closeness
by Elena Schjavland, PhD
University of Connecticut, 2017

Thanks to an online friend who is an FTD caregiver for sharing this
dissertation with me.

Let me know if you find other parts that resonate with you,
Robin

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.