Highlights from International Congress on Multiple System Atrophy

The International Multiple System Atrophy conference was held in early
March 2018 in New York City. In late April, an article describing the
highlights of the conference was published by NYU’s Dysautonomia
Center. Check it out….

dysautonomiacenter.com/2018/04/24/progress-in-a-rare-disease-highlights-from-the-6th-international-congress-on-multiple-system-atrophy/

Robin

 

Man found joy in completing puzzles that were family photos

This article from last year is about twin daughters who discovered a company that created puzzles from family photographs, and that their father with Lewy body dementia (LBD) really enjoyed putting together these puzzles.

This activity might be of interest to more than those with dementia.

www.brainandlife.org/the-magazine/article/app/13/1/23/puzzle-power-as-lewy-body-dementia-narrowed-their-fathers-world

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

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

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

“Affordable Options for Grocery Delivery”

Brain & Life magazine (brainandlife.org) is published by the American Academy of Neurology.  In their January 2017 issue, they address the challenge that many with neurological disorders have of getting to the grocery store.  Sometimes it’s more practical to have groceries delivered.

Brain & Life magazine investigated these options:

* houses of worship
* Supplemental Nutrition Assistance Program (food stamps)
* Meals on Wheels
* food banks
* online shopping

The full article can be found here:

https://www.brainandlife.org/the-magazine/article/app/13/6/10/affordable-options-for-grocery-delivery

Affordable Options for Grocery Delivery
by Frank Kritz
December/January 2017
Brain & Life

Robin

Fear of the next level of care and the need to stop time traveling – Speaker notes

WellMed Charitable Foundation, based in San Antonio, regularly hosts teleconferences for caregivers, called Caregiver Teleconnection (caregiversos.org).  A recent guest speaker was a professional counselor addressing the topic of hospital discharge planning.

Unfortunately many with neurological conditions end up being hospitalized at some point. The hospitalization and subsequent care can change the course of a person’s life (and of a caregiver’s life).

As always, Brain Support Network’s volunteer Denise Dagan listened to the teleconference and shared her notes. In looking over Denise’s notes, I didn’t find the speaker’s presentation very compelling. However, I was very interested in these three comments made by the speaker at the end of the teleconference in response to questions:

1.  When presented with discharge facility or in-home health agency options, start by using your cell phone or tablet in the hospital during the discharge planning conversation.  Use specific search terms like “Medicare home health coverage.”

2.  Nobody wants to go to the next level of care (either in-home care or any type of facility).  That is primarily due to fear.  If you have a family member in that situation you need to be firm even though it is emotionally difficult.  To ease this transition you can have someone benefiting from that level of care speak with your family member about their personal experience in the level of care you are proposing.

3.  In addition, the patient and family members need to stop ‘time traveling’ (worrying about ‘what ifs’) because your concerns may never come to fruition and in the meantime they are preventing you from living while you focus on your fears.  Do research to allay your fears into what the next level of care might be, how much it could cost, and locations most convenient to you.  Get your VA benefits application process started, if you qualify.  Use behavioral/mental health insurance for some counseling to help manage fears.  Join a support group (both patient and caregiver).

Denise’s complete notes are copied below.  This teleconference was not recorded as there was a substitute speaker.

Robin

———————

Notes by Denise Dagan, Brain Support Network Volunteer

Working More Effectively with Social Workers: Hospital Discharge Planning to Rehab, Transition Home and Long Term Care
Speaker:  Zanda Hilger, LPC, NCC

WellMed CaregiverSOS Caregiver Teleconnection
April 30, 2018

Social Workers have a master’s degree and, depending on the state are licensed (sometimes clinical, with more training).  You find them in any medical organization, including senior/geriatric clinics, like the intended speaker, Christine Casbeer.  The substitute speaker, Zanda Hilger, recommends connecting with a social worker in a senior/geriatric clinic if you are helping a senior.

When does a social worker step in?  Most caregivers will encounter a social worker in a hospital (not the ER), but after the person has been admitted. Their primary interaction with families is in discharge planning, which is determining if the patient is ready to be discharged into a safe and supportive environment.  In most cases the mindset is that the patient will go home to be cared for by family or to a rehabilitation center from the hospital.

Discharge will be to home (with or without a home health agency) or to a rehabilitation center if there is medical necessity.  There should be an assessment to determine whether the person has medical need after discharge to reduce risk of readmission to the hospital. That assessment is done by the discharge social worker or nurse prior to discharge.  A social worker or nurse will follow up with the patient to ensure the patient and family are aware of community resources to support them after discharge.  When the medical need is no longer required, home health or rehab will be discontinued, but community resources should be in place before medical support is removed.

[Medicare does NOT cover home health for activities of daily living – bathing, dressing, feeding, etc.  Medicare DOES cover home health service for intermittent skilled nursing care (like injections, wound care), physical therapy, speech-language pathology services, occupational services.]

Families should advocate for home health if they feel their family member has medical need or if the hospital is expecting family to perform medical tasks with which the family ill equipped to handle. Advocating for home health ensures their family member is evaluated appropriately for medical need.

Zanda’s experience with her own mother was to accept the hospital’s discharge plan.  The facility the hospital transported Zanda’s mother to was old and not some place she wanted her mother to be placed.  Zanda admits she should have done a visit to the place the hospital was recommending her mother be discharged to and worked with the discharge planner to determine the best location for her mother to be discharged to before the transport happened.  She recommends working closely with the discharge planner, slowing the process, and doing your homework to determine the best place for your family member before the transport happens.

It tends to happen that the family is told discharge will happen at a particular time and the family waits all day.  Then, when the discharge social worker finally shows up they present the couple of facility options and say the decision needs to be made within 2-3 hours.  In that case, the family needs to push back and tell the discharge social worker that it is not possible to evaluate the facility or home health agency options within that time.  If the discharge social worker is inflexible, the family should learn the name of the discharge social worker’s head of department and take your appeal for more time or more information up the chain of command.

The social worker discharge planner’s mandate is to discharge patients from the hospital, but also to ensure the patient is going to a place with enough support to reduce their readmission to the hospital.  The discharge planner’s job and level of information does not include discharge to assisted living or retirement living.  If you want to discharge to that level of care, you need to research those options yourself.  Discharge social workers should not be recommending these for-profit facilities.

To research assisted living or retirement living you might use A Place For Mom or New Life Styles online information.  These resources are paid by the residential facilities they recommend so their lists may be incomplete if all the facilities in your area do not subscribe to their services.  They are both reputable organizations with which to begin your search.

Social workers job is to advocate for your family member’s best care.  If you feel your social worker is not providing enough information or devoting enough time to your situation, be assertive and direct but not aggressive.  Tell them directly that you need more information about X, or say something like, “It seems you are too busy to discuss this now, can we make an appointment to discuss this in depth at ?’o’clock.”  You can also tell your social worker you are not getting enough information or support from them and ask if you can work with their supervisor.  Be kind, not aggressive or angry and you should be able to get what you need from the system.

eldercare.acl.gov – purpose is to help people in the US locate non-profit/government resources like adult day programs, Alzheimer’s disease, behavioral health, caregiver support, elder abuse prevention, financial assistance, food and nutrition, health insurance, healthy aging, home repair and modification, housing options (not for-profit), in-home services, legal assistance, long term care, nursing home and long term care facilities, transportation and volunteerism.

You can use eldercare.acl.gov to check out resources your social worker is recommending or to find resources and run them past your social worker to get their opinion about the usefulness of a particular resource.

Question and Answer:

When presented with discharge facility or in-home health agency options, start by using your cell phone or tablet in the hospital during the discharge planning conversation.  Use specific search terms like “Medicare home health coverage.”

Nobody wants to go to the next level of care (either in-home care or any type of facility).  That is primarily due to fear.  If you have a family member in that situation you need to be firm even though it is emotionally difficult.  To ease this transition you can have someone benefiting from that level of care speak with your family member about their personal experience in the level of care you are proposing.

In addition, the patient and family members need to stop ‘time traveling’ (worrying about ‘what ifs’) because your concerns may never come to fruition and in the meantime they are preventing you from living while you focus on your fears.  Do research to allay your fears, as into what the next level of care might be, how much it could cost, and locations most convenient to you.  Get your VA benefits application process started, if you qualify, also allays fears.  Use behavioral/mental health insurance for some counseling to help manage fears.  Join a support group (both patient and caregiver).

 

“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.”

“6 Ways to Stop Judging Yourself As a Caregiver”

This recent post to DailyCaring blog of Caring.com lists six ways to stop judging yourself as a caregiver.  The post addresses negative self-talk.

The six ways include:

1. Notice when you’re speaking negatively to yourself.

2. Distract yourself from negative thoughts.

3. Avoid comparing yourself with others.

4. Look at the big picture.

5. Talk to others in similar situations.

6. Keep a success journal.

These six suggestions are described in detail in the blog post.

Robin

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

www.caring.com/articles/stop-judging-yourself-as-a-caregiver

6 Ways to Stop Judging Yourself As a Caregiver
You don’t deserve judgment from anyone, even yourself
By DailyCaring, Guest Contributor
Caring.com
Apr 17, 2018

Most of us have run across unpleasant know-it-alls who question your caregiving decisions or criticize things you’ve done. That’s terrible, nobody should speak to you that way!

What’s worse is when we speak to ourselves that way. Many of us unfairly judge ourselves and focus on the few mistakes we’ve made rather than on all the good we’ve done.

What you’re doing deserves praise, especially from yourself.

We’ve got 6 practical tips that stop the unfair self-judgement that happens inside your head. These tips also help retrain your thoughts so you can treat yourself more kindly.

6 ways to stop judging yourself as a caregiver

1. Notice when you’re speaking negatively to yourself

The first step is to notice when you’re talking to yourself negatively about caregiving.

Next time you have a negative thought, take notice and write it down. For example, you might think “I snapped at Mom again today. I’m the worst daughter in the world.” or “Ugh! I forgot to buy more of Dad’s oatmeal. I’m so stupid!”

Even though you’re noticing when these thoughts happen, it’s important not to beat yourself up just for having them. Too often, these thoughts automatically fly through our brains and we hardly notice how harshly we speak to ourselves.

The goal of this exercise is to help you realize that you’re doing it.

2. Distract yourself from negative thoughts

After you’ve been noticing your self-criticism for a little while, it’ll get easier to recognize when you’re being too hard on yourself.

When you realize it’s happening, stop and take a few deep breaths. Redirect your thoughts by thinking about something positive, finding something to praise yourself about, or listing a few things you’re grateful for.

3. Avoid comparing yourself with others

Comparing yourself to other people only makes you feel badly. On top of that, you’re usually comparing your worst moments with their best moments — the ones they openly share with others.

Instead, focus on what you’re doing right. Maybe you found an amazing in-home caregiver who takes great care of your mom. Or, you’ve made sure that your husband is getting excellent care in a wonderful memory care community.

Keep in mind that everyone makes different choices based on their own unique circumstances. This doesn’t make one caregiving decision better than another.

No matter what choices other people make, it’s best to focus on doing the things that work best for your older adult and yourself.

4. Look at the big picture

So what if the house is messy? Who cares if Mom wears PJs all day when she’s at home? Does beating yourself up about these details help the situation? Do these things really matter?

Instead, think about what’s truly important to you. The house might not be spotless, but maybe it’s because you choose to spend quality time chatting and listening to music with Dad to keep him engaged in life and boost his mood.

5. Talk to others in similar situations

Sometimes hearing from others gives you new perspective. Caregiver support groups are a great place to hear stories from other people in similar situations.

You’ll learn about their experiences, the questions on their mind, and their failures. Talking with and getting advice from fellow caregivers helps you realize that you’re not alone in this, everyone is doing their best under difficult circumstances, and there’s no such thing as one right way.

6. Keep a success journal

Recognizing your successes also helps you overcome negative thoughts.

Every day, take a little time to jot down the things you did well. Seeing your wins on paper is proof that you’re successful a lot more often than you might think.

 

“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?