“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.”

“Marijuana and PD: What Do We Really Know?” – Webinar Notes

The Parkinson’s Foundation (parkinson.org) conducts occasional webinars on Parkinson’s Disease (PD).  Recently, it hosted a very thorough webinar on marijuana and PD.  The speaker was Dr. Benzi Kluger, a movement disorder specialist in Colorado, which legalized recreational marijuana a couple of years ago.

You can download the speaker’s slides here:

http://parkinson.org/sites/default/files/B.Kluger_Slides%20FINAL%28cgm_lh%29.pdf

And you can watch the hour-long recording of the webinar here: (requires registration)

http://event.netbriefings.com/event/pdeb/Archives/marijuana/register.html

Brain Support Network uber-volunteer Denise Dagan listened to the webinar and took excellent notes.  See below.

Robin

———————-

Notes by Denise Dagan, Brain Support Network Volunteer

Marijuana and PD: What Do We Really Know?
Parkinson’s Foundation Expert Briefing Webinar
April 17, 2018

Speaker: Benzi M. Kluger, M.D., M.S, movement disorder specialist, University of Colorado Hospital

Learning Objectives:
* Define cannabis, cannabinoids and endocannabinoids
* Review the basic science of the potential of cannabinoids to affect Parkinson’s and other movement disorders
* Understand the current state of the evidence of cannabinoids as a treatment for Parkinson’s
* Know the most common side effects of cannabinoid-based therapies
* How he works with patients in using cannabinoid products for medical use.

Outline:
What is cannabis, cannabinoids and endocannabinoids?
How does cannabis effect the nervous system?
Do cannabinoids improve motor or nonmotor symptoms in PD?
Can cannabinoids slow down the progression of PD?

What is cannabis, cannaboinoids and endocannabinoids?
* Cannabis is a genus of flowering plants including sativa (higher THC), indica and ruderalis (higher CBD).
* Cannabinoids are chemicals that act on cannabinoid receptors in the nervous system and other tissues.
* Synthetic cannabinoids are man-made and very targeted, phytocannabinoids (now over 100) come from the cannabis plant. Endocannabinoids are produced by neurons and other tissues – analogous to the endorphins system in the body.

Phytocannabinoids:  D9-tetrahydrocannabinol (THC)
– Primary psychoactive component of cannabis
– Higher concentration in Sativa strains

cannabidiol (CBD)
– May have more calming effects on the nervous system
– Significant interest in medical research (particularly epilepsy)
– Higher concentration in indica and ruderalis strains

Anadamide
– name means ‘bliss’
– Discovered in 1992
– May play a role in pain, sleep, stress response and other behaviors as well as development.  Most research done on adolescents and young animals so we don’t know much about its effects on adults, especially older adults.
– Also found in chocolate (why we crave chocolate?)

Synthetic Cannabinoids
* Marinol (dronabinol): THC developed to treat nausea and appetite in cancer
* Nabilone: Cannabinoid Receptor 1 and 2 agonist
* K2 and Spice
– legal alternatives to cannabis
– have been associated with adverse health effects and hospitalizations (avoid these!)

How does cannabis effect the nervous system?
* It slows response and reaction time.
* It reduces dopamine reception.

The Endocannabinoid System
* Cannabinoid Receptor 1 (CB1) and 2 (CB2)
* CB1 primarily in the central nervous system and CB2 in immune system
* Endocannabinoids act on the presynaptic neuron to decrease neurotransmitter release at CB1 receptors
* Tend to increase GABA and decrease Glutamate and Dopamine release in the basal ganglia

Action of Cannabinoids
* Agonist, antagonist and partial agonist at CB1 receptors
* Antioxidant and anti-inflammatory effects
* CB2 on microglia (the primary immune cells in the brain)  Research into slowing progression of PD in the brain.
* CB independent effects. Other receptors (adenosine A2A is acted on by caffeine)

Do cannabinoids improve motor symptoms in PD?  No.

Animal Models
* Published studies generally support motor improvement but effects are mixed as are mechanisms.  Cannabinoids have actually induced PD symptoms in animals.
* CB1 antagonists (blocking CB1 receptors) are most consistently helpful probably through non-dopaminergic mechanisms.
* Both CB1 agonists and antagonists have been reported to improve dyskinesias.

Clinical Reports and Trials
A survey of 339 PD patients : 25% reported using cannabis, 46% described some benefit, 31% reported improvement of rest tremor, 45% of bradykinesia, and 14% of LID
* In US, 207 PD patients:  only 5% reported using, and most reported benefit only for non-motor Sx (pain, sleep, appetite, anxiety, muscle stiffness)
* All randomized controlled trials to date have been negative (inconclusive).  There are 100 phytocannabinoids, but these trials picked only 4.  Small number of participants so harder to see trends and rule out placebo effect.
* Recent Israeli study showed benefit, but also flawed study.
* Current study has worked out some of the study flaws so may show good results on effect of CBD in PD.

Do cannabinoids improve nonmotor symptoms in PD?  Yes.

Clinical Reports
* No randomized controlled trials
* Some case series report benefit for REM Behavior disorder and psychosis
* Colorado experience suggests benefit for appetite, nausea, pain, anxiety and sleep, muscle spasms & spasticity, depression (chronic cannabis use increases risk for depression)
* Web based survey made associations between cannabis and better memory, although all participants were young.

Most Common Side Effects
Cognitive (dopey), depression, apathy
Dizziness
Low Blood Pressure
Smoking may increase risk for cancer or other pulmonary issues so use vaping, edibles to avoid this
Edibles may have less predictable absorption and dosing, eating too much because effects kick in later through digestion
Risks – children and animals getting into cannabis products.

Can cannabinoids slow down the progression of PD?  No.

Preclinical Models
Most published studies suggest neuroprotective effect in toxin-based models
Mechanisms may include anti-inflammatory and microglia effects
Most studies suggest cannabinoid receptors are not involved
No data in people

Speaker works with patients using cannabis for medical purposes.  He does not write a prescriptions.  He fills out paperwork so patients can get a license to buy marijuana.  In other states it may work differently.  There is no regulatory body saying 10% CBD will be the same across dispensaries.  You should stay with the same dispensary for the maximum consistency.  Most patients start w/CBD (cannabidiol) although THC may help more with pain, dyskinesias and motor functioning.  Avoid smoking due to cancer risk.  Use creams, patches, edibles, vaping in that order.  Start low and increase slowly.  There are side effects.  Tell your doctor about your use.

Take-Home messages
* There are many different (100+) psychoactive chemicals in cannabis and products derived from cannabis may vary widely in terms of their benefits and side effects.  Some are stimulants, others will help you sleep.
* There is currently no conclusive evidence supporting the benefits of cannabis for any aspect of PD.
* Anecdotal evidence suggests cannabis may help pain, sleep, appetite, nausea and anxiety.
* Research to date on motor symptoms and dyskinesias in people have been either negative or inconclusive to date.
* Potential side effects include confusion, low blood pressure, falls and pulmonary issues if smoked.

Question and Answer:

There’s no evidence to suggest people with PD will experience benefits from medical marijuana?
There’s evidence from other diseases that symptoms like nausea, appetite, anxiety, sleep will also help in PD.

THC most helps pain.  Would you recommend creams for that?  How do you go about acquiring that?
Where it’s legal if you have a medical license you go to a dispensary and ask for the creams or patches.  Where it is not legal, pure CBD (cannabidiol) products can be shipped across state lines, although it may not be as efficacious without a small amount of THC for pain.  There is still a legal risk.

The negative interactions of these drugs include hallucinogenic effects so what is the risk for people with psychosis?
The literature provides guidance.  For people with dementia or advanced PD you must be more cautious.  The potential for developing side effects is higher.  Paranoia, hallucinations, and delusions risk is higher.  For those with Lewy Body Dementia CBD has been useful as a calming influence.

What is the difference between recreational and medical marijuana?
In Colorado there are both types of dispensaries.  The products are similar although the recreational dispensaries focus on higher THC. The reason to get a medical license is to have more access to more CBD (cannabidiol) products, creams and patches that are not usually used for recreational purposes.  It also gives you a tax break.

Is it covered by insurance?
Not yet.

People with PD are resigned to the need to increase dose as disease progresses.  Same with marijuana?
No long term studies to show this.  The doses he’s worked with patients seem to be stable.  Other medications, like opioids, benzodiazepines can be replaced with cannabis in lower doses, less cloudy cognition to get off opioids.

Should you worry about getting addicted to cannabis?
It does not appear using cannabis creates a physical dependency like opioids and benzodiazepines, although they can develop a psychological dependence.  If you are younger and considering cannabis for sleep or pain he would say to give it a try.  There is no downside to using it long term.

Hemp is related to cannabis.  What is the relationship between them?
They are the same genus but it does not include the psychoactive chemicals.  Hemp products will be legal, but he doesn’t know if they would be effective to treat what they claim to, or not.

People with pain muscle cramping find the calming effect of marijuana relieve dystonia symptoms?  Do you think that’s what’s happening?
Muscle cramping or dystonic pain shows benefit by using CBD (cannabidiol) with a bit of THC to relieve muscle cramping.  It could be the relaxation effect that relieves the pain.  The cannabinoid system is also involved in pain perception.  A recent study (last year) tested people with PD pain perception 1/2 hour after cannabis use.  Their pain threshold increased. After 12 weeks of use the thresholds were even higher.  Cannabis use quiets the nervous system and increases pain tolerance.  It can be particularly useful, especially creams, for pain control by both peripheral and central mechanisms.

Do the cannabinoids go right into the skin through the skin?
Yes, predominantly that is a local effectiveness similar to lidocaine cream.  With the patches it is a combination of local and periphery effect.

Does cannabis help with tremor?
That is being studied now by using CBD (cannabidiol).  There are reports of cannabis effectiveness on tremor, but they are just reports, not studies.

For a person with Parkinson’s who wants to try cannabis, how do they approach their doctor?
Even in Colorado, neurologist responses are mixed.  Some are still not comfortable in writing the paperwork to get a license.  There is some talk about teaching and training in medical school to accommodate this need by patients.  You should talk about cannabis as complementary medicine.  If your doctor is not cooperative you should not proceed on your own or you may experience detrimental side effects without medical support.  You should get a referral to a cooperative doctor before proceeding.  Ask for a 2nd opinion. Insurance pays for 2nd opinions.

Any concern about cannabis and DBS (deep brain stimulation)?
Same cautions apply.  Speech, balance, cognition challenges can be magnified by cannabis.  There should be not any particular benefit or detriment due to the presence of a DBS unit.

Impulse control disorder magnification by cannabis use?
No studies on this.  There should be no relationship excepting if the individual becomes obsessed with using cannabis just as they could become obsessed with anything else (sex, food, gambling, etc.)

Atypical parkinsonisms advice?
One study suggested CBD (cannabidiol) can be helpful in Lewy Body Dementia (LBD) by calming reaction to hallucinations.  Be aware of low blood pressure, falling risk, etc. as for regular PD.

How can you get involved in research studies for cannabis?
Clinicaltrials.gov has all the clinical trials in the world.  Search Parkinson’s and cannabis.
Look at Fox Trial Finder.  Use the PubMed search engine.  Search for research studies on topics of interest to you and contact those researchers.  You can make financial donations to those researchers and/or their research organizations.

“21 Tips for Washing, Grooming and Going to the Bathroom”

Earlier in the year, a post on Parkinson’s News Today (parkinsonsnewstoday.com) offered 21 tips to make washing, grooming and going to the bathroom easier and safer.  Though the blog post is on a Parkinson’s-related website, the tips apply to everyone with mobility issues or those at risk of falling.

Robin

——————————

parkinsonsnewstoday.com/2018/01/15/21-tips-washing-grooming-going-bathroom-parkinsons-disease/

21 Tips for Washing, Grooming and Going to the Bathroom With Parkinson’s Disease
By Wendy Henderson
Parkinson’s News Today
January 15, 2018

As a person’s Parkinson’s disease progresses, simple everyday tasks such as washing, grooming and going to the bathroom can become difficult due to typical Parkinson’s symptoms such as tremors or rigidity. Those living with the disease will be keen to do as much for themselves as possible and retain as much of their independence as they can, particularly when it comes to personal hygiene.

We’ve put together a list of handy tips to help people living with Parkinson’s continue to wash, groom and go to the bathroom easily and safely…

Washing

• Installing at least two fitted handrails near the bath or shower will allow the patient to grab hold of something safe and secure while getting in and out of the bath or shower. These should be professionally fitted if possible to ensure they are strong enough to support the patient’s weight.
• A chair or bench in the shower or bathtub will help those who have trouble balancing while standing. A handheld showerhead is best used in these circumstances.
• Make sure the water isn’t too hot.
• Place non-slip rubber mats in the bath tub and shower cubicle.
• Bath rugs and mats should have a rubber backing so they don’t slide across tiles.
• Liquid soap in a pump dispenser is safer to use than hard bars of soap which can slip out of hands and leave slippery residue underfoot.
• Install a shelf in the shower or bath area that is between knee and shoulder height for easy access to soap, shampoo, and other essential washing items.
• Advise the patient to always take their cell phone or medical alert device into the bathroom if they’re home alone.

Grooming

• Patients should sit down when brushing their teeth, shaving, applying makeup or drying their hair so they don’t have to worry about balance.
• It’s important to support the upper body by resting elbows on the sink or vanity when grooming.
• Electric devices are often better and safer to use than non-electric ones, such as toothbrushes and shavers.
• Hands-free hair dryers can be mounted on a vanity unit.

Going to the bathroom and incontinence

• Toilet frames or grab bars will help patients get up off the toilet safely.
• Introduce a regular schedule for visiting the bathroom, such as every two hours or before meals.
• Avoid drinking caffeinated drinks which may cause more frequent bathroom visits.
• Try to avoid fluids two hours before bed.
• Patients should use a nightlight or keep the bathroom light on during the night so they can make their way to the bathroom safely.
• It’s advised that those with Parkinson’s attempt to fully empty their bladder each time they visit the bathroom.
• If patients become prone to bathroom accidents, they should try using incontinence products such as pads or padded underwear.
• Patients should seek medical advice if they experience burning or a sudden increase in frequency or urgency to urinate as this may indicate a urinary tract infection.
• A urologist can help if patients are experiencing problems with incontinence.
Earlier in the year, a post on Parkinson’s News Today (parkinsonsnewstoday.com) offered 21 tips to make washing, grooming and going to the bathroom easier and safer.  Though the blog post is on a Parkinson’s-related website, the tips apply to everyone with mobility issues or those at risk of falling.

Robin

——————————

parkinsonsnewstoday.com/2018/01/15/21-tips-washing-grooming-going-bathroom-parkinsons-disease/

21 Tips for Washing, Grooming and Going to the Bathroom With Parkinson’s Disease
By Wendy Henderson
Parkinson’s News Today
January 15, 2018

As a person’s Parkinson’s disease progresses, simple everyday tasks such as washing, grooming and going to the bathroom can become difficult due to typical Parkinson’s symptoms such as tremors or rigidity. Those living with the disease will be keen to do as much for themselves as possible and retain as much of their independence as they can, particularly when it comes to personal hygiene.

We’ve put together a list of handy tips to help people living with Parkinson’s continue to wash, groom and go to the bathroom easily and safely…

Washing

• Installing at least two fitted handrails near the bath or shower will allow the patient to grab hold of something safe and secure while getting in and out of the bath or shower. These should be professionally fitted if possible to ensure they are strong enough to support the patient’s weight.
• A chair or bench in the shower or bathtub will help those who have trouble balancing while standing. A handheld showerhead is best used in these circumstances.
• Make sure the water isn’t too hot.
• Place non-slip rubber mats in the bath tub and shower cubicle.
• Bath rugs and mats should have a rubber backing so they don’t slide across tiles.
• Liquid soap in a pump dispenser is safer to use than hard bars of soap which can slip out of hands and leave slippery residue underfoot.
• Install a shelf in the shower or bath area that is between knee and shoulder height for easy access to soap, shampoo, and other essential washing items.
• Advise the patient to always take their cell phone or medical alert device into the bathroom if they’re home alone.

Grooming

• Patients should sit down when brushing their teeth, shaving, applying makeup or drying their hair so they don’t have to worry about balance.
• It’s important to support the upper body by resting elbows on the sink or vanity when grooming.
• Electric devices are often better and safer to use than non-electric ones, such as toothbrushes and shavers.
• Hands-free hair dryers can be mounted on a vanity unit.

Going to the bathroom and incontinence

• Toilet frames or grab bars will help patients get up off the toilet safely.
• Introduce a regular schedule for visiting the bathroom, such as every two hours or before meals.
• Avoid drinking caffeinated drinks which may cause more frequent bathroom visits.
• Try to avoid fluids two hours before bed.
• Patients should use a nightlight or keep the bathroom light on during the night so they can make their way to the bathroom safely.
• It’s advised that those with Parkinson’s attempt to fully empty their bladder each time they visit the bathroom.
• If patients become prone to bathroom accidents, they should try using incontinence products such as pads or padded underwear.
• Patients should seek medical advice if they experience burning or a sudden increase in frequency or urgency to urinate as this may indicate a urinary tract infection.
• A urologist can help if patients are experiencing problems with incontinence.

“Palliative Care: Planning for the Road Ahead” – Speaker Notes

The Parkinson’s Association of Northern California (parkinsonsacramento.org), based in Sacramento, held its annual conference in late October 2017.  The video from the conference was posted online earlier this year.

Brain Support Network volunteer extraordinaire Denise Dagan has been watching the recordings of some of the sessions, and sharing her notes.

This blog post contains notes that Denise took while watching the recording of Nathan Fairman, MD, a psychiatrist at UC Davis.  Dr. Fairman spoke on the topic of palliative care.  There is nothing about this talk that is Parkinson’s-specific.  The information applies to us all.

Denise liked two metaphors that Dr. Fairman shared during his talk. The metaphors helped make his points about what palliative care is and why we want to make our end of life preferences known in advance.

Denise says:

“His first metaphor is thinking of life as a road into
the distance.  We can see clearly what is along the road near to us,
but in the distance things are unclear.  Similarly, we can see all the
elements of our lives clearly in the present and near future but not
so clearly in the distant future.  When we are diagnosed with a
serious or long term illness our outlook becomes unfocused.  Dr.
Fairman says the job of a palliative care physician is to help us see
our future clearly again.  He then gives us an excellent description
of what palliative care is and is not, as well as how it applies
specifically to those with Parkinson’s disease.”

“Dr. Fairman’s second metaphor is that our lives are a story we write
for ourselves.  Making our end of life preferences known by talking
with our family and physicians, filling out a POLST and advance
directive is outlining the last chapters of our lives so that they
play out the way we prefer and we are not at the mercy of decisions
made by others.”

If you need more information about what palliative care includes
beyond what is contained in this email, check out
getpalliativecare.org.  That’s one of several resources mentioned near
the end of Dr. Fairman’s talk.  And ask your primary care physician,
neurologist, or other physician how palliative care can help you or
your family member and obtain a referral to a palliative care program.

Robin


www.youtube.com/watch?v=VvaSVuYhNjc

Notes by Denise Dagan, Brain Support Network Volunteer
April 2018

Speaker:  Dr. Nathan Fairman
Topic:  Palliative Care: Planning for the Road Ahead

Conference hosted by Parkinson Association of Northern California (PANC)
October 2017
Afternoon Session 1, Part 1

1st of 2 metaphors:  We think of our life as a journey or road ahead.
We can clearly see what is right ahead of us, but not what’s in the
distance, or around a bend or into the mountains.  And yet, each of us
has a sense of what’s ahead until we are diagnosed with a serious or
long-term illness, when our outlook becomes truly unfocused.  The job
of a palliative care doctor is to help us see our future clearly,
again.

Objectives of this talk:
1. Palliative Care 101
2. Roles for Palliative Care in Parkinson’s disease
3. Advance Care Planning 101

What is Palliative Care?
There is a distinction between “disease” and “illness.”  To understand
this makes it easier to have an effective relationship with your
doctor.  The distinction is:
* Doctors diagnose and treat disease.  The disease is what happens to
your body in a pathological sense.
* Patients experience / suffer illness.  Illness is how disease
affects who you are, your functioning in life, your relationships and
the path you are on.

Doctors can understand disease without knowing the patient at all.
You cannot understand an illness without the patient.

Dr. Fairman showed a Venn diagram in which a disease expert circle
(doctor) and an illness expert circle (the patient) overlap.  Both
doctor and patient need to respect one another’s expertise and work
together to best treat symptoms or achieve a good recovery.

Total Pain is physical, social, psychological, and existential.
Cicely Saunders was a nurse in London in ‘50s who worked in a cancer
ward.  She was tasked with alleviating cancer pain, which is very
difficult.  She found high dose opioids were very effective for
managing oncology pain.

She also discovered when you suffer a serious illness you suffer in
many ways leading to her concept of Total Pain.  Proper treatment of a
serious illness needs to incorporate a team which is able to address
all aspects of suffering: physical, social, psychological, and
existential.  This is a foundational concept in palliative care.

Palliative Care IS:
* specialized care for people with serious illnesses
* focused on providing patients with relief from the symptoms, pain,
and stress of a serious illness – whatever the diagnosis
* strives to improve quality of life for both the patient and family (goal)
* provided by a team of specialists who work with a patient’s doctors
to provide an extra layer of support (led by a doctor and including a
nurse practitioner or nurse, chaplain, pharmacist and working closely
with physical therapy, occupational therapy, speech therapy and
disease experts).
* appropriate at any age, and at any stage of a serious illness
* provided together with curative treatment or as the sole focus of care

Some of the myths are exposed in this definition like:
* Palliative care is only appropriate at the end of life
* Patients can’t continue with disease-focused care while receiving
palliative care

Basic Tenets of Palliative Care
1. Illness experience (person-centered / family-oriented)
2. Total Pain (interprofessional)
3. Preserving quality of life and function
4. Alignment of plan of care with goals of care (we don’t want to do
things to you, we want to do things for you)
5. Time-limited therapeutic trials.

Levels of Palliative Care
* Primary Palliative Care
— ALL CLINICIANS (good old-fashioned doctoring)
— attention to whole-person / family concerns
— treatment rooted in understanding of illness experience
— clarifying basic goals of therapy
— attention to symptom burden and quality of life

* Secondary Palliative Care
— Sub-specialist consultant teams (MD specializing in palliative care
+ RN + SW + Chaplain)

* Tertiary Palliative Care
— Research, Education about palliative care

What are the roles for Palliative Care in Parkinson’s Disease? There
are many overlaps between managing Parkinson’s disease and palliative
care:
1. Common goals: maintaining quality of life & function
2. Common means: multidisciplinary models (it takes an
interdisciplinary team for both)

There are a couple ways to think about the trajectory of Parkinson’s
disease.  At several points along that trajectory there are
opportunities for palliative care.
1. At diagnosis there is intense need for education about symptoms,
treatment options and prognosis
2. Identifying support resources
3. Initiating advance care planning discussions
4. Addressing distressful symptoms (especially non-motor)
5. Assessing caregiver distress / role challenges
6. Clarifying goals (iteratively, as goals change over time)
7. Facilitating transitions in care
8. Aligning plan of care with goals of care
9. Supporting loved ones through bereavement

Advance Care Planning
* Anticipating needs for future care: Who will provide care? Where
would you prefer to live?
* Anticipating major interventions / milestones, particularly tricky
issues to decide upon that are best discussed ahead of the need to
make a decision, like:
— artificial nutrition
— institutionalization
* Supporting autonomy and surrogate decision-making / healthcare
power-of-attorney

Attention to Caregivers
* Caregiver as expert
* Participation in decision-making, goal-setting
* Respite resources / opportunities
* Bereavement support (usually provided through hospice)

Got Advance Care Planning?  2nd metaphor – your life as a story. This
room is filled with stories.  Each one is unique and personal.  The
stories may be sad, tragic, heroic, inspiring.  You are the author and
main character but there are supporting characters, a plot, a setting,
conflict and conflict resolution, acceptance of unresolved conflict.

Think of advance care planning as a process to develop the last
chapters of your story.  Each of us has in mind (even if we haven’t
though much about it) what our last chapters look like.

What is Advance Care Planning?

What IT’S NOT:
– the story
– a document
– scary
– something you should put off.

IT IS writing an outline for the last chapters of your story… so the
story plays out the way you want.

Why does it matter?  What people WANT is often not what people GET

What people WANT in the last weeks or days of their life:
Dr. Fairman showed a photo of a man receiving hospice care at home.
There is a great dane, a schnauzer, and a cat on the hospital bed with
the man.  Most people want something like this photo and describe that
they would like to
* live life to the fullest (“fix” disease, if possible + alleviate suffering)
* 90% believe it is the family responsibility to provide care
* 90% prefer to die at home

What people GET:
Dr. Fairman showed a drawing of a hospital bed without showing the
patient’s face, a TON of equipment around and the doctor headed out
the hospital room door.
* many of us die of diseases that are ‘unfixable’.  We need
alleviation of suffering at end of life.
* only about 23% die at home
* about 77% die in institutions (53% in hospitals, 24% in nursing homes)

Writing the outline for the end of your story…so that it follows the
script you have written.

What is Advance Care Planning?  The practical parts:
1. Advance Directive – if you should have a sudden, traumatic event
and cannot speak for yourself or are in no position to make decisions,
it makes your wishes known and explains how you want to be cared for.
2. POLST – Physician Orders for Life Sustaining Treatment.  This is a
form you keep this at home.  How you fill it out tells EMTs how to
treat you if someone calls for medical help to your home.

The important parts:
1. Talk about it with your loved ones and health care providers
2. It’s a process (revisit and revise periodically)
3. Expect the unexpected

Things to Think About When Confronted With Medical Decisions. Having
a palliative care physician on the team at this point can provide the
patient and family perspective, particularly about what a difficult
recovery or poor outcome might look like.  Ask your doctor:
* Will this make my life better, or longer?  If the answer is neither,
the doctor should probably not be recommending it to you.  If the
answer is one or the other, your input will help the doctor understand
what trade-offs are important to you.
* If this doesn’t work, what can I expect?  If plan A doesn’t work,
what does plan B look like?

Ask yourself:
* What does quality of life mean to you?  If your time were short,
what would matter most?  What would a good day look like?  If you can
communicate this to your doctor, they can help you achieve these
goals.
* What worries you most about the future?  What outcomes are
unacceptable?  What are you willing / unwilling to sacrifice?
* If we can’t achieve your Plan A, what is your Plan B?

Things to Help You

Books:
Being Mortal: Medicine and What Matters In The End, by A. Gawande, 2014
Dying Well: Peace and Possibilities at the end of Life, by I. Byock, 1998
The Conversation: A Revolutionary Plan for End of Life Care, by A.
Volandes, 2016

Websites:
ACP Decisions (www.acpdecisions.org)
PREPARE (www.prepareforyourcare.org)
Get Palliative Care (www.getpalliativecare.org)

The Conversation Project (www.theconversationproject.org)
Coalition for Compassionate Care of California (www.coalitionccc.org)

Things to Do (a summary)
Preparation:
– Consider the “Things to Think About”
– Review the “Things to Help”
Discuss your preferences and priorities with loved ones
Complete documents, including:
– Advance Directive, POLST
Discuss your preferences and priorities with your physician (and a
palliative care physician)
Repeat as needed

Good stories have good endings…how will the end of your story go?

“In Oregon, pushing to give patients with degenerative diseases the right to die”

Here’s an excerpt from yesterday’s article in The Washington Post about the efforts in the state of Oregon to allow patients with degenerative diseases the right to die:

“People with Alzheimer’s, Parkinson’s, Huntington’s, multiple sclerosis and a host of other degenerative diseases are generally excluded from the Oregon [medically assisted suicide] law.  This is because some degenerative diseases aren’t fatal. People die with Parkinson’s, for example, not because of it. Other diseases, such as advanced Alzheimer’s, rob people of the cognition they need to legally request the suicide medications.” 

Some in Oregon are considering changes to this law or a new law that would allow people who do not have dementia to say that they do not wish to be spoon-fed if they do develop dementia.

Here’s a link to the article:

www.washingtonpost.com/national/in-oregon-pushing-to-give-patients-with-degenerative-diseases-the-right-to-die/2018/03/11/3b6a2362-230e-11e8-94da-ebf9d112159c_story.html

Treating depression and anxiety in Parkinson’s – webinar notes

The Michael J. Fox Foundation (michaeljfox.org) holds webinars every third Thursday. In general, these webinars focus on aspects of Parkinson’s Disease (PD) – symptoms, research, and treatment. During yesterday’s webinar time slot, a June 2016 webinar on depression and anxiety in PD was re-played.

The webinar explained the prevalence of depression and anxiety in the lives of people with PD, clarified when treatment is needed, and offered some treatment options. As depression and anxiety are common symptoms in the Brain Support Network disorders (LBD, PSP, MSA, and CBD), the webinar content applies to many in our community.

This time around, Brain Support Network volunteer Adrian Quintero listened in on the webinar, took notes, and shared them.

You can find a link to the June 2016 webinar recording here:

www.michaeljfox.org/understanding-parkinsons/webinar-registration.php?id=8&e=1201845

Note you have to register before watching the recording. The speakers’ slides can be downloaded once you get to the archived recording webpage.

Here are Adrian’s notes…

Robin

———————

Notes by Adrian Quintero, Brain Support Network Volunteer

Depression and Anxiety in Parkinson’s Disease
Thursday, June 16, 2016
Michael J. Fox Foundation Webinar

Panelists:
* Dave Iverson- Contributing Editor, The Michael J. Fox Foundation
* Israel Robledo- Diagnosed with Parkinson’s in 2007
* Laura Marsh, MD- Executive Director of the Mental Health Service, Michael E. DeBakey Veterans Affairs Medical Center
* Gregory Pontone, MD- Director, Parkinson’s Neuropsychiatry Clinical Programs, Johns Hopkins University School of Medicine

How common is Depression and Anxiety for people with Parkinson’s?
Dr. Marsh says it’s very common, between 50 and 60 % of people. Often people develop depressive episodes within 5-10 years of PD diagnosis (before motor symptoms are present). There are brain changes in PD that affect mood regulation, often before motor areas of the brain are affected.

How do Depression and Anxiety go hand in hand?
Dr. Pontone says experiencing both is common in PD, as it is as well in the general population. Similar neurotransmitters are at play with both depression and anxiety (serotonin, norepinephrine, dopamine).

In PD, the most common type of anxiety people experience is a more generalized / longstanding anxiety, although this can vary person to person. When depression is active, anxiety is also worsened,

Israel’s story
Israel shared from his personal experience. He dealt with depression for about 20 years off and on before he developed any motor skill symptoms. He tried different medicines that were mostly ineffective with the depression. He started to develop motor symptoms around 37, and he had an increase in depression symptoms at that time. For Israel, the depression got much worse after his PD diagnosis. For him, he experienced suicidal thoughts and feelings, and he felt depressed both cause of the PD diagnosis and as part of the PD disease itself.

He also experienced an increase in anxiety after PD diagnosis. Israel described depression as a “mental tiredness,” feeling helpless, hopeless, he didn’t feel the joy he saw other people around him experiencing.

None of the anti-depressants he had been on had a noticeable effect on his mood. His movement disorder specialist prescribed a different kind that really made a difference, and helped shift his view/ attitude. He also received a lot of support from family and friends. He said what others can most do to be helpful is to be there for the depressed person, but don’t try to fix the problem for the person.

Change in perspective
Dr. Marsh described depression as “looking at the world through mud-colored glasses.” It’s an illness that changes one’s perspective on life. There are also physical symptoms that overlap with PD symptoms, such as slowness, muscle tension, slow thinking, and fatigue. It can be hard to know if such symptoms are PD or depression. The lack of pleasure can be an important factor indicating there could be a mood disorder that needs specific addressing. Depression can have serious life threatening symptoms- hopelessness/ suicidality being the most life threatening.

What causes Anxiety and Depression in PD?
Parkinson’s impacts dopamine and other neurotransmitters. These all affect mood regulation, which is being able to experience a full range of emotions, moving in and out of different emotional states. People can become stuck in one state or another, even when trying to do things that are normally pleasurable (such as the case with Israel).

Dr. Pontone describes what is happening as chemical imbalances, and it’s not due to a lack of trying on the part of the depressed person. It can be very hard to rebound into a normal mood state. He says with depression it can be hard to think clearly, and when suicidal thoughts are present, they can take on life of their own.

The experience of depression in PD and general population is similar, except there seems to be more anxiety that accompanies the depression with PD patients. Inadequate treatment for motor symptoms an affect depression treatment in PD.

Most people feel they can cope with PD, but not when they are depressed. Effective treatment for depression makes coping with PD much easier.

If motor symptoms are worsening, it could possibly be more related to mental health issues that need attention.

Treating depression in PD through Medication
It is very important to talk to the movement disorder specialist about all the meds person is on, to have the full picture (blood pressure medications, etc.). SSRIs are usually the first type of drug to start with treatment in persons with PD. Trials of drug can be similar as it is with general population, trying one class of anti-depressant, if it’s not effective, move into another class. (Moving from SSRIs to SNRIs to tricyclic anti-depressants). The SSRI class has lower side effect risk profile to start with.

For Israel it took going to a tricyclic class of medication before he found relief.

Treating depression has been shown to correspond with improved motor function day to day. Treating anxiety can help with “freezing” symptoms.

Cognitive changes can occur in PD. Both depression and anxiety are associated with cognitive difficulties. Treating depression and anxiety and managing those well is associated in overall improved function, including cognition. (such as person may be able to think more quickly).

When to treat for depression?
Israel suggests thinking about your outlook of life. He felt mentally tired and felt like things he did didn’t really matter. If one anti-depressant doesn’t work, don’t feel shame in getting help trying an other to see if that may help. There is stigma in our society around having mental health issues, more than physical health issues.

Important to treat mental symptoms as well as we would physical symptoms. For example if we saw someone with a broken leg, we would want to rush them to the hospital for treatment. We wouldn’t see the person as being at fault and tell them to walk it off! The mindset of someone depressed changes profoundly from illness state to well state. People can recover.

Other treatment options
* Talk therapy, CBT therapy
* Education around depression
* Support (family, friends, group)
* Learning skills to manage Depression and PD
* Exercise. There are studies with the general population that show exercise can really help with depression. (There haven’t been studies with the PD population). However, Dr. Pontone believes exercise helps mood in people with PD, and will help overall disease and management of day-to-day symptoms. Exercise can also provide social interactions and can help with getting outdoors.
* Social interactions can really improve mood, having one’s experience validated by a trusted other.

Medication treatment for Anxiety
Many medications that treat depression also can be used in treating long-term anxiety and anxiety disorders. Although, some people can experience an increase of anxiety at first. Benzos- Can help anxiety in the short term, but don’t help depression. Both doctors often avoid using cause of side effects, including risk of falls. But sometimes for short-term relief they can be helpful.

Newer treatments for Anxiety and Depression
* Brain stimulation treatments- like deep brain stimulation treatment for movement symptoms. Recently, doctors have been looking into using DBS for mood improvement.
* Less invasive option is something called trans-cranial direct current stimulation; which may have both motor, and mood benefits. At Johns Hopkins they are doing a trial right now.
* Magnetic field RTMS- not invasive, magnetic coil near brain, shown to be effective in PD and gen pop.

Overall, the doctors agree there are reasons to be hopeful.

 

“Unfortunate Irony Turns Renowned Scientist Into Caregiver For His Wife”

This is a nice article about a scientist who spent years studying Parkinson’s and then became a caregiver for his wife who was diagnosed in 2011 with Lewy body dementia (called “cortical Lewy body disease” in the article).  The wife, a former preacher, had been diagnosed with Parkinson’s in 2004.

This article was published on Flatland (flatlandkc.org), the digital magazine of KCPT Public Television in Kansas City, MO.  My browser did NOT like the Flatland website, which is a shame because there are some photos accompanying the article.  The article was shortened and re-published on NextAvenue (nextavenue.org).  Below, find the text of the original article and links to both websites.

Robin


www.flatlandkc.org/news-issues/cover-story/bill-priscilla-neaves/ –> my browser did NOT like this website

www.nextavenue.org/sad-irony-scientist-caregiver/ –> shorter version of article is here

Faith And Love
Unfortunate Irony Turns Renowned Scientist Into Caregiver For His Minister Wife
By Barbara Shelly
Flatland
January 1st, 2018 at 6:00 AM

Churchgoers at a tidy, white-steepled United Methodist Church in Carrollton, Missouri, heard a frank admission from their guest pastor one spring morning in 2007.

“When asked to preach this Sunday, I almost said no,” Priscilla Wood Neaves told the congregation. “Why? Not because I lacked training and experience, and I have always enjoyed preaching.”

She had, in fact, fought for the right to preach. As a girl growing up in the 1950s in the Texas panhandle, Neaves was told that women could not be ordained ministers in the United Methodist Church. The information was erroneous, but not until she left Texas for college, marriage and motherhood did she encounter a female pastor who could disprove it.

Eventually Neaves graduated from the Perkins School of Theology at Southern Methodist University, became an ordained Methodist minister and hospital chaplain, and gathered a wealth of life experiences to frame her sermons.

And then life dealt a blow that temporarily stilled her voice.

“I was diagnosed with Parkinson’s disease three years ago,” Neaves told the congregation in Carrollton, “and I have not formally ‘proclaimed the Word’ since then. I guess it was because of feeling a mixture of fear and anger directed toward God.”

Listening in the congregation to the candid and unusual sermon was the preacher’s husband, Bill Neaves. Never entirely comfortable with church and organized religion, he kept a low profile. Few in the country church knew that, while Priscilla was wrestling with her medical diagnosis, Bill was engaged in a professional and political struggle involving the search for cures for diseases like Parkinson’s.

Childhood sweethearts from Spur, Texas, Bill and Priscilla Neaves both packed up briefcases stuffed with credentials when they moved to Kansas City in 2000.

He had been dean and executive vice president for academic affairs at the University of Texas Southwestern Medical Center in Dallas, a lauded institution where Nobel Prize winners worked with other faculty members to advance science and medicine. She was a chaplain at Children’s Medical Center Dallas — a front-line responder to small patients and their families in moments of fear, relief and overwhelming grief.

James Stowers, founder and CEO of American Century Investments, had consulted with Bill Neaves about a research facility he was creating in Kansas City. He envisioned a place in his hometown where premier scientists would have resources and time to study the causes of diseases and embark on a search for cures. Stowers asked Neaves to be the first president and CEO of the Stowers Institute for Medical Research.

“I was enthusiastic about it,” Neaves says. “Few people want to support basic science.”

But he needed to persuade Priscilla. She had balked at several other moves when opportunities had arisen. After a dinner with Stowers; his wife, Virginia; and other family members, she agreed. Neither Bill nor Priscilla Neaves had any way of knowing that during the next few years his new job would come to involve politics as much as science, and her physical and spiritual health would be put to the test.

Priscilla quickly dived into life in Kansas City by joining the board of directors of the medical ethics research and advocacy group now known as The Center for Practical Bioethics. She also joined the Institutional Review Board for Children’s Mercy Hospital.

The first signs of trouble appeared in the fall of 2003. Priscilla didn’t feel well; something was off, she said. She wasn’t able to walk with her normal stride. When the odd symptoms persisted for a few weeks, Bill tapped his medical contacts.

In January 2004, a physician at the University of Kansas Hospital diagnosed Parkinson’s disease. Another physician at Washington University Medical Center in St. Louis concurred.

As Priscilla noted in her sermon a few years later, the news came as a blow. Parkinson’s disease is a neurodegenerative disorder that hinders the brain’s ability to produce dopamine, the transmitter that enables people to regulate motor functions.

Still, the disorder progresses slowly in most people, and Priscilla was accustomed to a busy and productive life. She became a full-time volunteer chaplain at Carroll County Memorial Hospital in 2006 after the couple purchased a farm about 60 miles northeast of Kansas City. In that capacity, she provided spiritual resources and facilitated support groups for cancer and Parkinson’s patients.

Though his wife’s health was a concern, Bill Neaves was ebullient about progress at the Stowers Institute in its early years. First-rate scientists had indeed been willing to come to Kansas City, and they were engaged in rigorous and productive research.

One cloud on the horizon was legislation that kept resurfacing in the Missouri General Assembly. Pushed by Matt Bartle, a lawyer and at the time a state senator from Lee’s Summit, its stated purpose was to ban human cloning. But Bartle’s definition of cloning went far beyond a scenario in which a squawking baby might emerge from a laboratory. His bill aimed to ban even the copying of human embryos as small as a few dozen cells.

Those miniscule lab dish embryos are home to embryonic stem cells that can be formed with a patient’s DNA. Scientists believe the newly created cells can be used to repair tissue, organs and nerves damaged by all manner of injuries and diseases. In the early 2000s, they eyed the laboratory procedure with great hope.

To Bartle and others, it represented a moral threat. That’s because, once embryonic stem cells are harvested, the tiny embryo that sheltered them is destroyed. What some people viewed as a somewhat mysterious lab dish procedure, religious conservatives saw as the willful termination of human life.

The issue made it to the November 2006 ballot in the form of a constitutional amendment that would protect all scientific research in Missouri that was legal under federal law.

Jim and Virginia Stowers spent $30 million to bankroll the campaign supporting the amendment. Opponents formed their own coalition and also raised millions of dollars. Missouri citizens were besieged by television ads alternately lauding the promise of stem cell research and issuing dire, if misleading, warnings about cloning.

Bill Neaves was in the thick of it all. He wrote essays and traveled the state, speaking to groups to explain what embryonic stem cell research meant for science and the Stowers Institute. He touted its potential to stop or slow the suffering from devastating diseases. He mentioned Parkinson’s disease. What he never said publicly was that the person closest to him had been diagnosed with that illness.

The constitutional amendment passed by a razor-thin margin — a difference of 50,800 votes out of 2.1 million cast.

Ultimately, science itself stepped in to bring an uneasy truce. A Japanese researcher found a way to make adult cells behave like embryonic cells, with the same capacity to repair and rebuild damaged body parts. The reprogramming method is less costly than the somatic cell nuclear transfer procedure, and it sidesteps the ethical issues. It is now the preferred avenue for many scientists, including those at the Stowers Institute.

With his wife at his side, Bill Neaves had done his part to stand up for science. But science could not immediately return the favor. It could not stop the frightening changes that were going on in Priscilla’s body.

“For more than a quarter-century, I have retreated each summer to the Beartooth Wilderness on the Boulder River in Montana,” Priscilla Neaves wrote in July 2008. “I relax, enjoy, meditate and relate to God’s magnificent mountains and forests. Perhaps my Native American heritage encourages me to celebrate nature — my paternal grandmother was half Choctaw.”

From the deck of the wilderness home she and Bill cherished, Priscilla wrote of her love of nature, as experienced in Montana, West Texas and New England — all places she had lived. Bill would later include the meditation in a compilation of his wife’s sermons and writings. Soon after that, Priscilla’s illness made further trips impossible. “Mercifully,” Bill wrote in the afterword of the book he compiled in his wife’s honor, “we rarely realize that we are doing a beloved thing for the last time.”

The previous couple of years had been difficult. The couple lost their son, William Jr., in May of 2007. Living in Houston, he had waged a long struggle with alcoholism and died of its complications. “Priscilla was amazingly stoic about it, but I know it must have been incredibly difficult for her,” Bill says now.

She continued her work as a voluntary chaplain and frequently preached sermons in the chapel of Carroll County Memorial Hospital.

“When questions about the meaning and purpose of life hit us like a tornado, God’s grace can be most tangible,” she told her small congregation in 2009. “Job’s way can also be ours. I know. I have been there.”

By this time the Stowers Institute was thriving. Jim and Virginia Stowers had given $2 billion worth of American Century stock to its endowment. Labs were filling up with impressively credentialed scientists. A spinoff biotechnology company, BioMed Valley Technologies Inc., had been formed to move treatments and therapies into clinical development.

In June 2010, Bill Neaves announced he would retire as president and CEO of the institute. He had already begun handing off the day-to-day operations to a protege, David M. Chao.

Neaves talked about wanting more time for research and various projects. He was especially excited about returning to research he’d begun 40 years ago, studying the asexual reproduction patterns of some species of lizards. He didn’t disclose publicly that his family was dealing with an all-consuming illness.

Priscilla’s symptoms were increasingly resembling more of a dementia-type illness than traditional Parkinson’s disease. At the end of 2011, specialists at the Mayo Clinic in Rochester, Minnesota, found that Priscilla was suffering from cortical lewy body disease — a brain disorder closely related to Parkinson’s but even more devastating. The destruction proceeds beyond motor control to destroy brain neurons associated with cognitive functioning and movement.

Bill Neaves recalls that his wife absorbed the terrible news calmly. “Priscilla was still pretty much intellectually intact then, and I was very impressed with what she said,” he recalls. “The neurologist said, ‘This is what we have, and it will probably be fatal within a year and a half.’ Priscilla said, ‘Well, glad to know what I’m facing, and I know firsthand that a lot worse things have happened to people than what is happening to me.’”

The couple had moved several months earlier into an apartment in Bishop Spencer Place, a retirement facility in midtown Kansas City that has provisions for nursing care. Linda Yeager, who was chaplain there at the time, remembers that Priscilla sought her out.

“She was very anxious for me to know that she was a minister herself, and she was very interested in helping other people,” Yeager said. “She wanted to share her books, and she wanted to do research and help people. She was greatly respected and loved.”

But Priscilla’s disease was progressing rapidly. By 2012, she was experiencing anxiety, confusion and paranoia. Daily tasks such as routine teeth brushing became a struggle.

On the advice of her family physician, Priscilla moved to a Leawood facility that treats patients with dementia. She became bedridden, mostly paralyzed from the chest down, with limited use of her hands. Once a passionate voice on nearly every topic, she now spoke only intermittently.

For nearly a year, Priscilla was officially in hospice care.

Bill, who describes himself as “a compulsive-type person,” began preparing for his wife’s death. He made cremation arrangements. He visited a printer and prepared a death announcement for Priscilla. Then he focused on putting together her book, “Sermons and Meditations,” which offers an eloquent, widely sourced study of theology from the perspective of a feminist and an environmentalist.

“That was a very therapeutic thing for me,” Bill says of the book project.

And then the mysterious, maddening, wonderful creation that is the human body served up another surprise. At the end of 2013, Priscilla’s disease stopped progressing. It had run its course, a specialist told Bill. With good care, she could live for a long time. But the damage already done — the paralysis, the speech loss, the loss of memory and cognition — was likely irreversible.

These days, Bill awakens most mornings at 5 a.m. in the apartment he and Priscilla share at Bishop Spencer Place. He sets about slicing up fruits for Priscilla to eat at lunch and supper. About an hour later he escorts his wife to the skilled nursing portion of the complex and sees that she is settled at her usual breakfast table. He makes sure she drinks water.

Bill, 74, and a year older than his wife, then drives to the Stowers Institute, arriving around 6:30 a.m. A tall, rail-thin figure in blue jeans, he glides around its hallways at a clip that feels like a trot if you’re trying to keep up with him. He knows everyone by name, from top scientists to the servers in the cafe. He teaches a research course and writes papers, mostly for scientific publications. He also serves on the boards of several institutions.

Sometimes he visits the institute’s reptile facility, where he and a Stowers scientist, Peter Baumann, continue the study of unisexual lizard reproduction.

A couple of years ago, the scientific journal “Breviora” honored Neaves by lending his name to a new lizard species, aspidoscelis neavesi — Neaves’ whiptail lizard. And very recently, the “Bulletin of the Museum of Comparative Zoology,” out of Harvard University, named a different species aspidoscelis priscillae — Priscilla’s whiptail lizard. This is only appropriate. When they were much younger, Priscilla spent months collecting lizards with Bill in the deserts of New Mexico.

Bill Neaves returns to Bishop Spencer Place around 10:30 a.m. and stops in the cafe to buy Priscilla a cup of coffee. He helps her eat lunch and, again, makes sure she drinks water. Then it’s back to the Stowers Institute until about 3:30 p.m. Late afternoons and evenings are consumed by a routine of coffee, dinner, companionship and bedtime preparations.

It’s an “incredibly ritualized schedule,” Bill acknowledges. “But I read somewhere a few years ago that one of the practical bits of advice for people who are into Zen is to turn what might otherwise be routine activity into real rituals. That seems to work for Priscilla and me.”

If life had served up a different set of circumstances, Bill Neaves might be traveling the world right now, speaking at scientific conferences and soaking in the tributes due the founding president of a world-class research facility.

“I’m really glad I don’t have to do that anymore,” he tells me.

“Not that I wouldn’t rather be sitting on our deck looking over the trees at the Beartooth Wilderness in Montana with Priscilla, enjoying a glass of chardonnay, but this isn’t … isn’t bad,” Neaves says. “It’s better than I thought it would be. There’s still enough of Priscilla there to make it feel very rewarding to have the time with her.”

And what about Priscilla, the woman who broke barriers in her church, raised two children, comforted grieving families and lived with Bill in places as far-flung as Boston and Kenya?

For all of her life, she had been a reader, a writer and a thinker. As a hospital chaplain, she kept copious notes about her encounters with patients and their families.

“I was impressed by this woman’s strength,” Priscilla wrote, after an encounter with a single mother. “She did not act like a victim, although she has been victimized and suffered many hard times. She did the best she could, and that was pretty amazing.”

Now the ravages of a terrible disease have left Priscilla unable to write down her thoughts, or verbalize them. But remarks in the sermons that her husband compiled seem prescient.

“Cherish the time you have with those you love,” she counseled a group in the Carroll County Hospital Chapel. “Don’t wait for tomorrow. Don’t let the deadlines and demands of daily life delay the dreams you share.”

And this: “As we all move closer to a grave, the fleeting time we are given with each other is so precious when measured against the time of eternity. How are we using that time?”

—Barbara Shelly is a veteran journalist and writer based in Kansas City

Feb 2018 Northern and Central California Parkinson’s Group Guest Speakers

Here’s a list of guest speakers or programs at various Northern and Central California Parkinson’s support group meetings for February 2018. I’ve deleted a few items that probably aren’t of interest to the Brain Support Network community (because they are only applicable to those with PD or are focused on deep brain stimulation).

With my atypical parkinsonism (DLB, PSP, MSA, CBD) hat on, these meetings are especially appealing to me (because of the guest speakers or topics) BUT remember that these are Parkinson’s support group meetings:

  • Santa Rosa, Saturday, 2/3: UCSF psychiatrist Steven Hall, MD is speaking on non-motor aspects of Parkinson’s. I am assuming he will address depression, other mood issues, and anxiety. Perhaps he’ll address hallucinations and delusions.
  • Pacific Grove, Tuesday, 2/13: Movement disorder specialist Salima Brillman, MD is speaking on hallucinations and delusions in Parkinson’s. This is likely of interest to those in our Lewy body dementia group. Note that this talk is sponsored by the maker of a medication for hallucinations.
  • Fremont, Monday, 2/26: Movement disorder specialist Salima Brillman, MD is speaking on hallucinations and delusions in Parkinson’s. This is likely of interest to those in our Lewy body dementia group. Note that this talk is sponsored by the maker of a medication for hallucinations.

As always, I recommend driving no more than 30 minutes to attend any of these meetings.

You can find meeting details (meeting location, group leader contact info, RSVP process, etc.) here.

Robin

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

San Lorenzo (San Leandro)
Thursday, 2/1, 10-11:30am
Guest Speaker: Michael Galvan, Community Resources for Independent Living (CRIL)
Topic: Assistive devices to help with PD
RSVP?: No.

San Jose/Willow Glen
Friday, 2/2, 10am-noon
Guest Speaker: Jason Stewart, director of advocacy, Americans for Cures Foundation
Topic: Proposition 71 – California’s landmark stem cell program
RSVP?: No.

Visalia
Friday, 2/2, 10:30am-noon
Program: Watch and discuss “Managing Parkinson’s – Straight Talk and Honest Hope,” Parkinson’s Heartland video
RSVP?: No.

Santa Rosa (Sonoma County)
Saturday, 2/3, 1-3:15pm (guest speaker 1-2pm)
Guest Speaker: Steven Hall, MD, psychiatrist, UC San Francisco
Topic: Parkinson’s – more than motor symptoms
RSVP?: No.

Lodi
Monday, 2/5, 10am-noon
Program: Break into two groups – persons with Parkinson’s and caregivers
RSVP?: No.

San Andreas (Calaveras County)
Tuesday, 2/6, 10am-noon (speaker 10:30am-noon
Guest Speaker: Kendall Gervin, OT, occupational therapist
Topics: Adaptive equipment for independence and self-care; home safety; exercise to maintain balance
RSVP?: No.

Soquel (Santa Cruz County)
Wednesday, 2/7, 1-2:30pm
Guest Speaker: Peter Lin, MD, movement disorder specialist, Valley Parkinson Clinic, Los Gatos
Topic: New developments in PD
RSVP?: No.

Millbrae/Magnolia
Thursday, 2/8, 1:30-3pm
Guest Speaker: Keith Harband, NewEnamel.com
Topic: Dealing with dry mouth
RSVP?: No.

Redding
Friday, 2/9, 1-3:30pm
Guest Speaker: Vibra Healthcare representative
Topics: Occupational therapy program; new changes coming to their Parkinson’s outpatient program
RSVP?: No.

Yuba City (Tri-Counties)
Monday, 2/12, 1-2pm
Guest Speaker: Peter Daley, III, chief, Yuba City Fire
Topics: YCFD services; disaster preparedness for the elderly and disabled
RSVP?: No.

Lakeport
Monday, 2/12, 2-3:30pm
Guest Speaker: Phil Myers, group leader
Topic: Research status
RSVP?: No.

Auburn Caregivers (those with PD can join this meeting)
Tuesday, 2/13, noon
Guest Speakers: Team of women from district attorney’s office
Topics: Aging safely – avoiding fraud, scams, and other stumbling blocks
RSVP?: No.
Note: Those with Parkinson’s are welcome at this particular meeting.

Pacific Grove (Monterey County)
Tuesday, 2/13, 3-4:30pm
Guest Speaker: Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic: Beyond motor symptoms in PD, including hallucinations and delusions
RSVP?: No.

Palo Alto Young Onset Parkinson’s
Tuesday, 2/13, 6:30-8pm
Guest Speaker #1: Aura Oslapas, StrivePD
Topic #1: StrivePD application
Guest Speaker #2: Ruth Gardner
Topic #2: Dental hygiene and PD
RSVP?: Yes, if this is your first time attending. Please RSVSP to Martha Gardner, group leader, at least one day in advance.
Note: Group returning to the old location at Lucile Packard Children’s Hospital

Menlo Park/Little House (New meeting location! No longer at Avenidas
in Palo Alto.)
Wednesday, 2/14, 2-3:30pm
Main Program: Please bring one tip and one gadget/equipment (if carry-able) that you recommend to people with Parkinson’s or caregivers of those with Parkinson’s
Guest Speaker: Amaris Martinez, Stanford Neurology, giving a brief overview of Stanford PD plasma study
RSVP?: No.

Merced
Thursday, 2/15, 10am-noon
Guest Speaker: Rekha Rishi-Khanna, SLP, speech therapist, Care One Home Health, Modesto
Topics: Communication and swallowing issues with PD
RSVP?: No.

Walnut Creek (Mt. Diablo)
Saturday, 2/17, 9am-noon (speakers 10:45am-11:45am)
Guest Speakers: Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park, and Stephanie Fiola, BSN, nurse educator, AbbVie
Topic: Duopa – treatment for advanced Parkinson’s
RSVP?: No.

Lincoln
Tuesday, 2/20, 10-11am
Guest Speaker: Ginger McMurchie, Elder Care Management of Northern California, Granite Bay
RSVP?: No.

Modesto
Wednesday, 2/21, 1:30-3:30pm
Guest Speaker: Representative from Rock Steady Boxing, Modesto
RSVP?: No.

Mill Valley (Marin County)
Friday, 2/23, 1-3pm (speaker 1-2pm)
Guest Speaker: Aura Oslapas, StrivePD
Topic: Voice and mobile app to make life easier with PD
RSVP?: No.

Fremont
Monday, 2/26, 7-9:30pm
Guest Speaker: Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic: PD – more than motor symptoms
RSVP?: No.

SHARE program available to some caregivers in the Bay Area

This blog post will be of interest to those living in the San Francisco Bay Area, who are caring for those age 60 or older without dementia.

Northern California-based Family Caregiver Alliance (caregiver.org) is
organizing a free educational program called SHARE.

Within Brain Support Network, three types of caregivers are eligible —
* PSP caregivers not dealing with dementia
* CBD caregivers not dealing with dementia
* all MSA caregivers

The care receiver (person with a neurological diagnosis) must:
–  Be over age 60
–  Be living at home in the San Francisco Bay Area
–  Have intact cognitive abilities – NO dementia
–  Not be in the terminal stage of their disease

The caregiver will receive:
–  6 in-person home visits
–  Learn effective communication skills
–  Learn to reduce stress
–  Learn to promote health
–  Learn about long-term care management (make the most out of today
while planning for tomorrow)

If this is of interest, contact Michelle Venegas (415-434-3388, x323,

[email protected]) at Family Caregiver Alliance.

Talk by Local Lewy Body Dementia Support Group Member on Coping

Bob Wolf is a local support group member.  His wife Carol has Lewy body dementia (LBD).  Bob wrote a wonderful, slim book called “Honey, I Sold the Red Cadillac” about his journey with LBD. He generously donated a copy to our group and it’s been circulating. You can also purchase your own copy!

Bob spoke at the Parkinson’s support group meeting in Walnut Creek last Saturday. His talk (like his book) focused on how he learned to enter Carol’s reality.

Brain Support Network volunteer Denise Dagan attended the talk and shared her notes.

Robin

————————-

Notes by Denise Dagan, Brain Support Network Volunteer

Speaker: Bob Wolf
Author of “Honey, I Sold the Red Cadillac: Learning to Cope with Lewy Body Dementia”
January 20, 2018
Parkinson’s Support Group Meeting, Walnut Creek

Bob calls himself a recovering engineer. He thinks very logically and practically, so when his wife, Carol, started hallucinating he tried to talk her out of it. His book tells their story and shares how he learned it is not possible to talk someone with dementia out of their delusions or hallucinations.

He began my explaining that both Parkinson’s and Lewy Body Dementia (LBD) are caused by the loss of dopamine in the brain, but in LBD the areas of the brain affected is more diffuse or extensive, resulting in hallucinations years earlier than someone with Parkinson’s disease may experience them.

Bob learned an interesting thing from a physical therapist (PT) who tested Carol. The PT asked Carol how many steps she thought it would take her to cross the room. She guessed 12, but it took several more. The PT explained that walking is a rather automatic action controlled by the brain in an area affected by dopamine depletion. When you have Parkinson’s disease and you walk without thinking about it you don’t walk well. When you think about it, you move control over your walking to a different part of the brain, generally not affected by dopamine loss so, if you have Parkinson’s disease, you will walk better.

Bob shared the story of when Carol’s initial symptoms presented themselves and his initial response to her hallucinations by trying to talk her out of believing her own eyes. It didn’t work. He learned he needed to work within the framework of her reality, going so far as to schedule their shower times around Carol’s belief that the local little league team was using Bob and Carol’s shower after practice.

This is the story that determined the title of his book. It was the first experience that taught Bob he needed to get into Carol’s reality. One day, looking out the window, Carol began complaining about some teenagers causing damage to Bob and Carol’s red Cadillac. To begin with, Bob and Carol don’t own a red Cadillac, and they live at Rossmoor Senior Living where there are no teenagers. He tried telling her they don’t own a Cadillac and there are no teenagers. She persisted day after day when looking out the same window that the boys were causing this or that damage to their car. One day Bob said, “Honey, I sold the red Cadillac.” She asked, “How much did you get for it?” He was a bit surprised and said, “Blue Book.” She never brought up the red Cadillac again.

Before Bob learned he had to work within Carol’s reality, he once rushed Carol to the emergency room because Carol believed her mother was ill. Bob knew Carol’s mother was deceased and wouldn’t be at the ER, but he wanted to show Carol what he said was true and Carol was mistaken. It only resulted in Carol being upset. After Bob learned to work within Carol’s reality, when Carol believed her mother was injured and at the ER, Bob went into another room and pretended to call the hospital. He told Carol her mother wasn’t badly hurt and had been sent home. He then distracted her with a pleasant activity.

After Carol had several falls Bob hired a caregiver for Tuesdays, when his bridge club met. Gradually, he added the caregiver more and more days in the week. Eventually, their daughter asked what happens to Carol if something happens to Bob, even a bad cold or the flu? He realized it was time to find Carol residential care. The family looked at several places and still picked one that didn’t serve her needs. They moved Carol to where she lives now and she’s doing very well.

Bob had a difficult time dealing with the fact that he was retired with only one job, to care for his wife, and he couldn’t do it. He saw a counselor who suggested writing down his experiences and his feelings. He did, but he realized he didn’t need a counselor for that, so he kept writing and joined a caregiver support group. At the support group he realized his stories could help others learning to care for someone with LBD, so he published his writings in “Honey, I Sold the Red Cadillac.”

Question & Answer

Q. Does Carol still know you?
A. Most of the time, although sometimes she believes Bob is her father. After all, he has white hair and makes all the decisions.

One day the activity was a travel video of Iceland. In one scene, a girl was putting on ice skates when the activity leader asked the group, “What is that girl doing?” Carol said, “Getting ready to fall down.” So, you see? Sometimes she really knows what’s going on and still has a great sense of humor.

Bob’s best advice is to remember the flight attendant’s instructions, “Put your own mask on first, then help the person next to you.” If you can’t breathe, you can’t help anyone. Take care of your own needs first, then look after your loved one.

Q. There was a comment that levodopa increases hallucinations, so stop or cut back on levodopa.
A. Bob pointed out that the anti-psychotic Carol takes makes her Parkinson’s symptoms worse, so they need one medication to help the side-effects of the other, and vice-versa.

Q. Another man asked about the commercials he’s been seeing on TV about a man with Parkinson’s having hallucinations. He wanted to know what they are selling.
A. Someone from the back of the room explained Nuplazid is the only FDA approved medication specifically designed for Parkinson’s/LBD hallucinations. This man’s wife is taking it and he says it is very expensive.