Happy New Year and Thank You from Brain Support Network!

Happy New Year and Thank You!

Brain Support Network would like to extend heartfelt appreciation to all our community members for contributions throughout the year, and especially in meeting our challenge grant in December 2017.

Together, in 2017, we have successfully completed 95 brain donations, published 600 unique posts to Facebook, and distributed over 250 more detailed email updates on LBD, PSP, MSA, and CBD. We were able to accomplish so much.

Best wishes for a happy and healthy 2018!

Advice from a spouse caregiver (eight items)

I read this advice today on a Yahoo!Group from a caregiver whose husband has passed away. You might find some value here.

Here are some things that helped us:

1. [My husband] wanted to know what was happening, so he uses his computer to research the disease in the early stages. I was able to help him with good resources. I’m both a nurse and a librarian, so this was easy for me. You might want to seek out the assistance of a reference librarian if this would be helpful for you. … We even enclosed [some print information about the diagnosis] with our Christmas newsletter shortly after [my husband’s] diagnosis. Learn enough to get a sense of what to expect, but don’t obsess. No two cases are exactly alike.

2. I wish I had set aside more time, especially early on when [my husband was] still was able to get out and about, to make plenty of memories to hold onto after he was gone. But I’m eternally grateful for those we did make time for. Even after he was home bound, we did some fun things together and with our adult sons. It was good for them to have those good memories, too.

3. Make a detailed list of things other people could help you with. You may not need or get them all, but make the list anyway. When friends ask what they can do, you’ll not be able to think of anything otherwise. With the list, you can choose something that person is especially suited to do and ask for that. When you’re feeling in over your head, use the list to seek out help as well. Do not hesitate to ask! You have people in your life who love you and/or Ted and want to help, whether you realize it or not – neighbors, church or other organization members, coworkers and/or former coworkers, community volunteers, family members. Don’t hide your needs and you’ll be surprised how much help is there you didn’t even know about.

4. Consider bringing hospice in sooner rather than later, especially if they offer palliative care in your area. They aren’t just for people who are actively dying! Mike started getting hospice services when he was still going to work every day, and was with them for nearly two years. They were immensely helpful with equipment, supplies, respite, ideas for workarounds, volunteer companionship and project assistance, finding facility care when the time came, nursing care and communication with [my husband’s] primary care doctor and neurologist, emotional and spiritual support, you name it.

5. Get the equipment you need when you need it, but don’t get ahead of yourself and spend a lot of money on expensive equipment you may only need for a short while. Hospice can *really* help with this. For the big ticket items, think about how you’ll be able to use them after [your husband] is gone. (I know. It’s hard to think about his being gone at this point. And you shouldn’t dwell on it. But do be practical.) we bought a recliner/lift chair that [my husband] basically lived in for more than 1 1/2 years. Almost two years after he left me, I’m still using it daily. We also bought a recumbent exercise bike so [my husband] could continue exercising after he could no longer ride his regular bicycle. …

6. If you haven’t done so already, get a durable power of attorney for yourself and set yourself up as the designated payer for social security. [My husband] was nervous about doing this, but he knew it was necessary. I kept him in the loop and got his agreement with every decision, and that let him know he could trust me to make the same decisions he would. His cognition was slow but lucid until the end, thankfully. Some people have to make those decisions without input from the person they are making them for. We waited almost too long to set the social security thing up because we didn’t realize they didn’t recognize a POA. Once [my husband] could no longer sign his name or speak clearly on the phone, both were essential and I was glad we had the foresight to put them into place before we got that far.

7. Know that when you are stressed, it may be hard to figure out what to do first even with simple things like getting up in the morning. I made myself index cards for the bathroom and kitchen with step by step instructions for morning and evening routines (4 cards). Then I put them back to back in two snack size ziplock bags to waterproof them. When I was so overwhelmed I was paralyzed just trying to figure out whether to brush my teeth or take a shower first, all I had to do was follow the list. I still use the bathroom list sometimes.

8. Keep a variety of grab and go meals on hand for when cooking or even planning is just too hard. If you have a good size freezer, use it liberally. Same goes for you slow cooker. When you do cook, make big batches and freeze single-serve microwaveable portions. If anyone offers to bring you a meal, let them!


Healthy aging talk by Stanford geriatrician (lots about sleep and over-medication)

Despite the fact that this email is about a talk given at a caregiver conference, there is nothing caregiver-specific about this email.

The Avenidas Senior Center Caregiver Conference was in late October 2017. Brain Support Network volunteer Denise Dagan attended the conference and shared notes from several of the talks a few weeks ago. One highlight was the talk by Stanford geriatrician Mehrdad Ayati, MD. The title of his talk was “Caregiving for Your Immune System.” Denise says “Dr. Ayati included some exceptionally useful information everyone should know about sleep.”

Denise’s notes are copied below.



Notes by Denise Dagan, Brain Support Network Volunteer

Speaker: Mehrdad Ayati, MD, geriatrician, Stanford University
Topic: Caregiving for Your Immune System
Avenidas Senior Center Caregiver Conference
October 21, 2017

Longevity doesn’t ensure a good quality of life.

Healthy aging doesn’t mean more pills, more doctors, more tests, and more supplements.

In studies of long-lived populations, the most important factors contributing to longevity was:

– Environment (safety and security, including socioeconomic status)
– Nutrition (influenced by finances, education)
– Lifestyle (very social societies with tight family and friendship bonds tend to live longer)
– Luck
– Disuse (lack of exercise and mobility)
– Genetics (only 25% influential on longevity)
– Disease (vaccinations, exposure to air/water/food/insect born illness)

The biggest thing doctors can do to help someone age well is to get them to modify their lifestyle. Doing that involves the same advice given to all caregivers:

– Exercise
– Have good nutrition
– Stimulate your brain (learn something new every day and be social)
– Stay up to date with your own health maintenance
– Get good sleep

Physical evidence of aging at the cellular level is the length of our telomeres (the tips of our chromosomes). Telomeres shorten with each cell division. If/when telomeres become too short the cell dies.

A 2013 study looked at study participant’s genes at the beginning and end of a 3-month period of improved diet, exercise and socializing. They found an increase of telomere length in that short a period, which correlates to healthier aging and overall lower cancer risk.

Sleep is a huge factor in maintaining our health and wellness. Adults should get 6-8 hours of sleep. Normal sleep goes through four stages in 90-110 minute cycles. Sleeping pills interfere with these cycles. Restorative sleep is in stage 3, just before the REM stage (Rapid Eye Movement, which is when we dream). There is actually 20% more brain activity during REM sleep than when we are awake.

There are two proteins that influence our sleep:

Adenosine – a product of muscle use, it builds up throughout the day and as it increases in quantity you become sleepy. This is why doctors recommend exercise to improve sleep. Note: Caffeine blocks adenosine receptors in the brain, preventing adenosine’s access to the brain while caffeine is present. That is why caffeine keeps you awake.
Melatonin – part of our circadian rhythm (day/night awake/sleep cycle). It builds up as a result of sunlight exposure through the eye. That exposure can be restricted by cataracts, retinopathy, stroke, Alzheimer’s, and more, resulting in sleep disruption. Wearing sunglasses in the late afternoon also restricts sunlight exposure at a critical time of day and can disrupt sleep.

Sunlight exposure and exercise can reduce agitation and help sleep for those with dementia.

Sleep is a restorative, regenerative time. During sleep the glymphatic system clears byproducts from the brain, including adenosine. If you don’t sleep well, you wake sleepy because adenosine is still present in the brain.

During sleep the brain migrates short term memories from the hippocampus to long term memory. This process doesn’t happen when sleeping pills disrupt your sleep cycles.

Dr. Ayati shared a circadian rhythm and sleep cycle chart with us showing when melatonin begins to affect our sleep, the fluctuation of blood pressure and heart rate throughout the day and night, etc. Click on this link to see the chart:


In people from middle age to the elderly it is normal to wake early and sleep early.

Teens typically have about a 2 hour delay from adults, so they sleep later and wake later. Early morning sunlight exposure may offset that delay and bring their sleep/wake times earlier. About 10% of teens have sleep disorders later in life.

The invention of the lightbulb allowed people to stay awake past darkness, when it is normal for us to be sleeping. More recent technologies (screens) further influences our sleep/wake times leading to increased rates of diabetes and obesity. We don’t get enough sleep because we use technology after dark, and we eat late, after our circadian rhythm has reduced our digestive activity for the night.

Over-medication is also a huge problem, especially due to medication interactions. Doctors tend to prescribe according to protocol, sometimes without thinking, “Does it make sense to prescribe a preventative medication to an elderly patient?” Statins, for one, don’t make any sense to start in someone who’s already 80 or 90 years old.

The effect of medications on the elderly is largely unknown because the elderly usually don’t participate in drug trials. When a new medication is released to the market doctors don’t even have anecdotal evidence (yet) of how well it will work for an elderly person or if it will interact badly with other medications.

Drug Cascade Syndrome – One example:
A patient complains about not sleeping well. His doctor prescribes a sleeping pill. The sleeping pill causes lack of energy and motivation. The doctor prescribes an antidepressant. The antidepressant causes weight gain. The doctor prescribes a statin and blood pressure medication.
If the doctor had taken the time to investigate more and implore the patient to change his lifestyle, the patient wouldn’t now have metabolic syndrome.

Maintaining good mental health and cognition goes a long way toward healthy aging, also. Dr. Ayati recommends learning or doing something challenging to our brains. We didn’t used to think that the brain could develop new pathways. In fact, now we understand that we only lose neurons faster as we age because older people have less activity, more anxiety, more depression, and less learning than young people who are in school, launching careers, rearing children, and more physically active.

In fact, one study found that taxi drivers in London have the largest hippocampus (short term memory center) in the brain. They have to adjust their routes depending on construction, traffic, passenger demands, etc., whereas bus drivers who follow a route set at the beginning of every day, did not have large hippocampus.

So, get out there! Move as much as you can (without hurting yourself) and learn something, volunteer, be sociable, and age healthfully.

Excerpt on acceptance/denial in “Finding Meaning with Charles”

Janet Edmunson, author of the book Finding Meaning with Charles, has given permission to share an excerpt on acceptance and denial.  The “Charles” in the book’s title is Janet’s late husband.  He was diagnosed during life with progressive supranuclear palsy, and with corticobasal degeneration upon death.  We have many copies of the wonderful book to share within our local support group.

Though the book is primarily for caregivers, I think those with a neurological diagnosis can find great benefit from it.  And the book has very few PSP-specific or CBD-specific details so it can be appreciated by everyone.

Check out Janet’s website (janetedmunson.com) at for details on her occasional webinars for caregivers and for her “positive affirmations” emails.  Her book can be purchased at Amazon.com.

Excerpts are below.

Excerpt from

Finding Meaning with Charles
by Janet Edmunson
Available in paperback, audiobook and e-book formats on Amazon.com

It wasn’t until about the third year of Charles’s disease that the Serenity Prayer had its greatest impact on me. But I have always loved it, and it means the most to me when I am going through tough times: “ . . . grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

I have really latched onto the concept of “accepting the things I cannot change.” Though we tried to fight it, Charles’s disease was going to take away his abilities, and eventually, his life. Our choice was to accept that or deny it.

I don’t know for sure what Charles’s choice was. He was determined not to let the disease change his life and goals. He tried hard to keep contributing as best he could. That was how Charles tackled everything in life. He denied the obstacle and set out to conquer it. He wouldn’t succumb. He fought all the way to the end.

Is that acceptance or denial?

I, however, consciously chose to accept it and make the most of it.

My greatest learning through this experience came when Charles and I attended the Mind/Body Medical Institute program which, at the time, was held at Beth Israel Deaconess Hospital in Boston. The instructor, Peg, talked about acceptance, explaining that the way to accept the things that we have no control over, such as an illness, is to make meaning out of it. Wow! Make meaning out of it! Her explanation suddenly allowed me to consciously look at what Charles and I were going through and identify where it helped us grow and where it allowed us to have an impact on others that we wouldn’t have had without the adversity of his disease.

Taking a proactive approach to making meaning out of our situation helped me to positively focus on the opportunities and not plunge into depression. I was determined to help Charles reach whatever potential his life could give. And I was amazed to see how Charles became even more influential – even after he could no longer talk. As a caregiver, I found it important to focus on this greater purpose. My goal for caregiving went beyond making sure Charles was safe and physically cared for. I wanted to ensure that he still lived life to the fullest whatever degree the disease would allow.

Accepting Charles’s disease and making meaning out of it didn’t mean that we didn’t feel pain. Coping with this type of degeneration was difficult physically and emotionally for Charles, the person with the disease, as well as for me, the caregiver. We faced many trials – some successfully, others not. But we both became better people through experiencing his disease.

Scott Peck starts his book, The Road Less Traveled, with the sentence “Life is difficult.” He goes on to explain that once we accept this, we can begin to make the most of life. Charles and I had discussed this concept a number of times when we faced problems at work or with other people. The misfortune of his disease forced us to face our greatest life difficulty, truly testing our ability to accept adversity and then move on.

I don’t know of anyone who expressed this thought better than Viktor Frankl in his book, Man’s Search for Meaning. Frankl survived the atrocities and indignities of a concentration camp in World War II.

He realized there that to renew our inner strength, we need to have a future goal. He quoted Nietzsche’s words, “He who has a why to live for can bear with almost any how.” I found that “finding meaning” is a way to define the why. The act of looking for and finding meaning in Charles’s disease focused and empowered me.

Advice for caregivers and those with Parkinson’s from Connie Carpenter Phinney

The Parkinson Voice Project (parkinsonvoiceproject.org) has hosted a few webinars on various aspects of Parkinson’s Disease this year.  In November 2017, they held a 90-minute webinar with Connie Carpenter Phinney, former championship speed cycler and co-founder of the Davis Phinney Foundation.  The topic was the importance of building a productive care team.  Much of the webinar is applicable to non-Parkinson’s situations.  Though most of the ideas were focused on the person with a diagnosis, many aspects of the talk were applicable to caregivers.

You can find the recording here:


For me, these were the highlights of Connie Carpenter Phinney’s talk that applied to both caregivers and care recipients:

* Stay social!  Lack of socialization is as bad for your health as smoking two packs of cigarettes daily.

* Get HIPAA release forms signed so family can communicate with all doctors.

* Designate your healthcare power-of-attorney to make decisions about your healthcare when you can’t.

* Set up your support team.  (This is true for caregivers and care recipients.)  You can start small — family, one friend you rely on, one doctor you trust, and one other person coping with the same diagnosis.  You will need more support than your family.  Put your friends to work whenever they offer.  Others coping with the same diagnosis understand your challenges and have information about resources, symptoms, tips, and tricks.

Here’s what Connie said about caregiving:

– You didn’t ask for it.  Neither did the person with Parkinson’s.
– You’re not alone, but it might feel like you are.
– You can do this, though you may feel like you can’t.
– It’s okay to dislike PD.  Avoid disliking the person with Parkinson’s.
– Teach your person with Parkinson’s to accept help from those other than their primary caregiver so that you won’t burn out.

And here’s Connie’s key advice to those with Parkinson’s:

– Avoid resentment.  It is negative and it will not serve you.
– Mind your manners.  Apologize if/when you lose your temper.
– Give praise.  Thank your caregivers.
– Accept help when you have Parkinson’s.
– Reward with smiles.  Smiling is good practice and good medicine.
– Move.  Get outside.  Exercise keeps you moving when you have Parkinson’s.  Sunlight helps you sleep.

As is customary(!), Brain Support Network volunteer Denise Dagan listened to the entire webinar and shared her notes.  See below.


Notes from Denise Dagan, Brain Support Network Volunteer

Strategies for Building Your Care Team to Live Well with Parkinson’s
Speaker:  Connie Carpenter Phinney
Webinar Host:  Parkinson Voice Project
November 11, 2017

As you age you start living more in the present and the past, and not in the future.  Without a goal there is no future.  With Parkinson’s you don’t know what the future holds so you become content with the present.

Connie grew up in a home with her mom having chronic MS, three rambunctious sons and Connie as her only daughter.  Connie and her husband, Davis, who has Parkinson’s disease, learned a lot from caring for Connie’s mother and Connie’s Olympic training, that they apply to their Parkinson’s journey.
– Be flexible. Take things as they come.
– Live in the moment.
– Focus on you and continue trying to improve.

Who carries you, as the caregiver?  Who’s looking after you?  Are you looking after yourself?  In this journey you need to learn to ask for help.

The thing(s) about caregiving.
– It is not called caretaking.  It is not just one person giving and the other taking.
– Caregiving is a journey on a two way street.  It’s a long journey.
– It’s fair to ask, who cares for me?  It may take some work to figure out who cares for you.  Your person with Parkinson’s needs to care for their caregiver or make sure their caregiver takes care of themselves.
– Doctors as caregivers.  What?!  Connie never thought of the physicians in the equation as being caregivers, but it is a team.  Think about who’s on the team.  You want your primary doctor to view themselves as a caregiver and as part of the team.
– One caregiver told Connie that being a caregiver was the toughest job he had ever done and he had been a Navy Seal.
– According to a government survey, 60 million Americans consider themselves to be caregivers.
– We ALL care.  It is not a one-way street.  Connie prefers to see herself as a care partner.  She gives care but also expects care.

Harness your caregiving superpower.  Get out.  Do what you love.  Reduce stress.  Most caregivers identify to some degree with having some angel wings and a halo (occasionally tarnished).  Parkinson’s asks caregivers to slow down and be more forgiving, magnanimous, patient.

What I know:
– You didn’t ask for it.  Neither did the person with Parkinson’s.
– You’re not alone, but it might feel like it.
– You can do this, though you may feel like you can’t.
– It’s okay to dislike PD, avoid disliking the person with Parkinson’s.

What we know about Parkinson’s Disease.  It’s not just neuroscience.
– It can turn your world upside down.
– It’s 24/7.  A friend of Connie’s with PD doesn’t like to blame every outburst on PD, but it pervades every moment.  Connie gave him permission to, “pull the Parkinson’s card,” because PD is an unpredictable 24/7 thing.  He needs to apologize and do his best to keep it together, but he should cut himself a break.
– PD involves daily concessions most people don’t have to make.  Slip on -vs- tie shoes.  Button down shirts take a lot longer.  Having to allow much more time for things, or always running late.
– It rarely ‘plays nice.’  Just when you need to be somewhere you have symptoms that get in the way of your attending or making it to the event on time.
– It’s as unpredictable as it is complicated.  There are similarities between people w/PD, but many differences, too.
– Tremor is the tip of the iceberg.  People outside the Parkinson’s community don’t understand that non-motor symptoms are part of the equation (constipation, incontinence, pain, vision problems, sleep issues, etc.)  Even facial masking and the social consequences.  People think you’re not paying attention, stupid, or drunk.

Notes for the person with Parkinson’s:
– Avoid resentment.  It is negative and it will not serve you.
– Mind your manners.  Apologize if/when you lose your temper.
– Give praise.  Thank your caregivers.
– Accept help when you have Parkinson’s.  Teach your person with Parkinson’s to accept help from those other than their primary caregiver, to prevent that care partner from burning out and compromising their health.
– Reward with smiles.  Smiling is good practice and good medicine.  It moves your facial muscles!
– Move.  Get outside.  Exercise keeps you moving when you have Parkinson’s.  Sunlight helps you sleep.

Notes for the Parkinson’s caregiver:
– Patience.  Infinite patience.
– Re-Set.  (You might need a do-over to re-set the rules of engagement.)  The way you have interacted before in your relationship may no longer work now that Parkinson’s is a factor.  You may not be communicating well together since Parkinson’s entered the picture and you need to find a better way to work together.  Try to get to a place where you don’t have to apologize, but you do anyway.
– Choose to keep it positive and upbeat.
– Stay social.  Lack of socialization is as bad for your health as smoking 2 packs of cigarettes daily.
– Reminisce.  Looking back can help you look forward.  It’s good for your brain.
– Move.  Exercise.  Do what you enjoy that is active/physical.
– Be spontaneous and selfish once in awhile.  Connie took the opportunity to go see the total eclipse with her son at the last minute.  She found it so spectacular she vowed to take Davis with her next time.

The Rulebook (aka Game Changers):
1. Reboot, restart, rewrite your rule book.  Write it down and have a conversation with your partner about what’s working and what’s not for each of you.

2. Never let your person with Parkinson’s go to the doctor by themselves.  They aren’t very good advocates for themselves.  Even if you send them with a list they they don’t report back all the details.

3. Tape record the appointment because you each remember different comments the doctor made.  Taking notes distracts you.  Take notes from the recording so you have the important information handy.

4. Get to know your medical providers (neurologist/movement disorder specialist).  Connie recommends finding a movement disorder specialist and explained you really want a neurologist who specializes in movement disorders, even if it is only a once-in-awhile appointment to confer with your regular neurologist.  Your primary care physician (PCP) should be communicating with your neurologist/movement disorder specialist so your PCP is up to date on all the symptoms and treatments you have brought to the neurologist/movement disorder specialist.  You may have to insist that your PCP receive neurologist’s notes.  Once, when Davis’s regular movement disorder specialist was out of town and they had to see a different doctor, they gained a new perspective.  The new doctor gave them seven areas on which they could improve upon after 17 years with the disease and all their education about the disease.  They did a cognitive evaluation so they would have a baseline for Davis’s degree of dementia.  Much of the cognitive issues in Parkinson’s have more to do with the slowing of processing speed, which is what they found with Davis, but now they have the baseline to compare to over time.

5. Don’t be afraid to challenge and change.  Challenge what you’ve been doing.  You don’t get better by doing the same thing.  You can only improve by challenging yourself.  If you cycle, add some weight training, voice training, etc. to keep up with the pace of the degeneration of Parkinson’s.  You can get function back, but you have to really work at it.

6. Inform yourself about side effects of medicines vs. symptoms of disease.  Understand the side effects of medicines and how they affect behaviors vs. behaviors affiliated with the disease.  The caregiver needs to understand what to look for as far as aberrant behaviors.  Some people take up gambling, for example.  That can be a side effect of medications so telling your doctor and adjusting dosages or prescriptions will solve the problem.  Feel comfortable communicating with your Drs.

7. Safety first.  There is balance between minimizing the chance of falling vs. getting enough movement to keep moving.  Pain killers/opiods to treat an injury from falling can result in even more injury from falling due to dizziness.
Some things you need to draw a line in the sand and say, “No more,” like ladders, shower curbs, etc.
Install grab bars, ramps, etc. before you need them.

Rulebook Essentials:
1. Driving – No attendees had been tested to see if they are still okay to be driving, but several admitted feeling uncomfortable being a passenger while their family member with Parkinson’s.  Occupational therapy evaluation will test you to see if you are okay to be driving.  It is part cognitive, part reflex/skills based.  It is not cheap but it is less expensive than it can be if your person with Parkinson’s has an accident and the person they hit finds out they have Parkinson’s and are not fit to drive.  If you are okay to drive, you need to keep driving because lack of practice means losing skill week over week.

2. Disabled parking pass.  Not to be close to the store, but to have more door swing to get in/out of the car.

3. Sleeping arrangements.  REM Sleep Behavior Disorder (RBD) is when someone acts out their dreams.  It is very disruptive and can be injurious to a co-sleeper.  Best to have twin beds in the same room if you sleep with someone who has RBD.

4. Household safety.  The person with Parkinson’s should help around the house as much as possible.  Mobility and manual dexterity, cognitive skills.  If you don’t use it, you lose it – BUT – no ladders, cleaning gutters, and other activities dangerous to someone with gait/balance issues.

5. Understand the benefits, timing and side effects of medicines, especially if you change dosing.  Taking meds on time is incredibly important.  Be sure it is happening if symptoms are fluctuating, even if they set an alarm on their phone, because they could be forgetting what the alarm is for or sleep/snooze the alarm, then forget about it.  You could end up with too high a dose complaining about symptoms that could be due to inconsistent medication use.
Also be sure to order/refill meds prior to running out to reduce stress/hassle.

Don’t wait!!!
– Learn to ask for help.  Groceries, sweep the floor or walkway, any little thing is helpful.
– Learn to accept help.  Most of the people the Phinneys find helpful now, didn’t know them before PD.
– Teach your person with Parkinson’s to accept help early on so later they are willing to accept help.
– Don’t wait until you feel exhausted.

For all y’all:
– Be informed.  Don’t overrule your doctor, but understand why they are recommending x, y, or z.
– Avoid isolation.  Embrace the Parkinson’s community.  They will serve you well.
– Choose optimism.  It is your best friend during difficult days.
– Seek contentment.  Be satisfied with what you’ve got.  Stay off social media that looks like others are happier than you are.
– Humor heals.  It is distracting from your personal challenges.  Turn off the news.
– Keep the faith.  Whatever helps carry you from day-to-day.  Focus on happy.

It is important to consider when and how to apply for Social Security Disability.  If you are under 60 applying for Social Security Disability will fast track you onto Medicare.  Your first attempt at the paperwork will probably be rejected.  They usually come back and require more information.  Be persistent.

Dream Team
– Family First but you will need more
– Friends, especially those you meet after Parkinson’s diagnosis.  Old friends may be caught in old patterns and not know how to adapt and be helpful and supportive.  Don’t blame them for that, just seek new, supportive friends.
– Other people with Parkinson’s in their family.  They understand your challenges.  They have information, tips and tricks to share.
– Therapists – Physical, Occupational, Emotional therapists.  Connie recommends physical therapy regularly, especially with someone familiar with Parkinson’s.
– Physician(s) – PCP informed by your neurologist/movement disorder specialist.  Be sure the person with Parkinson’s signs a HIPAA release form so their family can communicate with all the doctors from the beginning.  You will also need to designate your healthcare Power-of-Attorney who can make decisions about your healthcare when you are unable to.

Start Small
– One friend you can rely on
– One doctor you trust
– Another person with Parkinson’s

Keep a Calendar
– Weekly classes
– Appointments
– Reminders for birthdays, weddings, trips, educational seminars
– Do what you love!  Connie paints, cycles, etc.


Q. Does Davis still bike?
A. Yes. He uses an electric assisted bike to keep up with friends and family.  They also walk and Davis has joined a singing group.

Q. What are the 7 things the substitute neurologist recommended?
A. Take the driving evaluation, look at seeing an ENT about having collagen injections in the throat (they did have some success with this), botox for dystonia in one foot, medication changes, cognitive testing, weight training because Davis tends to falls backward but strength training may help that.
A. The Parkinson Voice Project doctor fully endorses getting different perspective in any area of life.

Q. How to go about seeing another doctor without making your regular doctor angry?
A. Explain to them you are trying to build a team and want them to communicate together.  Most doctors know people shop around, especially when they have a serious, long term illness.  May work best to have similar, but not the same specialties like neurologist & movement disorder specialist.

Q. How do you deal with Medicare says you can only have PT or other therapies for a limited time?
A. Every insurance company is like that.  Your doctor needs to continually support you and repeatedly prescribe it.  Try to find a physical therapist who knows about Parkinson’s and can be of the most help to you.
A. There is a Medicare Therapy Cap.  Parkinson Voice Project has raised $1M grant for physical therapy centers around the country to support expanding voice therapy for Parkinsons.

Q. How does Connie encourage Davis to do his PT without starting an argument?  Do you nag, or not?
A. In general that is where another person with Parkinson’s comes in handy.  When you sign up for something like Rock Steady Boxing with a group or friends, they can hold you accountable.  For typical PT like taking large steps, it helps to do it with them and try to make it fun and funny.  The exercise that works is the one that you’ll do!  Mix things up a bit so it is fun and not boring.  Until you meet someone who can no longer communicate, you don’t appreciate how important it is to keep working on speech.  Same with getting out of a chair.  Nagging never works.

Q. If you have a neurologist do they have a movement disorder specialist in their office for a consult?
A. No.  Usually, movement disorder specialists are in a group or specialty clinic.  Your neurologist may not recommend a movement disorder specialist, especially if you live in a rural area.
A. The speech therapist makes the analogy that her license allows her to treat a child, but she has 20 years experience with Parkinson’s, so she shouldn’t be treating children – but her license allows it.  Asking someone with Parkinson’s who they see can help you find the specialists you need.

Messages “From Beyond the Grave Are Changing How We Grieve”

Here’s an excerpt from a recent article on Vice:

“In 2014, Talbert was diagnosed with progressive supranuclear palsy, or PSP, a rare and fast-acting neurodegenerative disease… She soon began making preparations. She knew she wanted to leave her children and grandchildren recordings of her voice — when Talbert’s father died nearly 40 years ago, that was the thing she forgot first. … She found SafeBeyond about a year after being diagnosed. It’s one of a growing number of services, including DeadSocial and GoneNotGone, that allow people to posthumously send video, audio, and text-based messages to their loved ones at planned times.”

The article notes that many find such messages comforting while others feel like such messages are “an ambush.” (Note that the “DMs” in the title refers to “direct messages.”)

Here’s a link to the full article:


Away Messages
DMs From Beyond the Grave Are Changing How We Grieve
by Michael Waters
Nov 28 2017, 7:00am



Dealing with lack of motivation and helping someone accomplish tasks (with coaching)

CareGiving.com runs a “Caregiving Podcast Network” on Blog Talk Radio. Every week, they host a 30-minute “FTD Chat” about various aspects of frontotemporal degeneration. (Both PSP and CBD are FTD disorders.) In a chat over the summer, guest speaker Geri Hall, PhD, ARNP, talked about motivating someone with FTD to do things and be less apathetic. As lack of motivation and apathy are issues in all of the disorders in our group, I thought the notes from this podcast were worth sharing with everyone. In addition, the focus of this podcast is helping someone with a neurological disorder do more for themselves, with coaching from the caregiver.

Denise Brown, founder of CareGiving.com, is host of the podcast. The expert speaker, Dr. Geri Hall, works at Banner Alzheimer’s Institute with families coping with all types of neurological disorders.

Brain Support Network volunteer Denise Dagan recently listened to the podcast. Denise has shared some overall insights. Note the two suggestions offered by Dr. Hall —
1- get the help of an occupational therapist
2- have your care receiver attend a day care program

In terms of overall insights, Denise Dagan says:

This 30-minute podcast is a very good talk about helping someone with a neurodegenerative disorder, who is having trouble accomplishing tasks, to be able to do more for themselves with coaching from their caregiver(s). Dr. Hall explains that people with neurodegenerative disorders do have goals. When their executive function process breaks down it prevents them from accomplishing those goals – or even starting them. This is especially true for those with dementia or advanced Parkinson’s disease. Dr. Hall emphasizes that people with executive function issues are not being lazy, willful, or manipulative. She gives specific suggestions for helping them to stay focused to complete each step of a task on the way to their goal. People with [neurological disorders] can suffer from apathy and/or depression, making some projects seem overwhelming. Breaking projects into separate tasks, even over several days, makes them more manageable and less exhausting.

If you have difficulty breaking down a task into its composite steps for your family member, Dr. Hall recommends having your neurologist write you a referral to an occupational therapist (OT) for “Functional assessment and task simplification techniques.” The OT will evaluate your care receiver to establish his/her skill level and teach you, the caregiver, how to break a task into an appropriate number of steps.

Both Dr. Hall and Denise Brown recommend having your care receiver attend an adult day program and pay attention to how they give instruction to the program attendees in a step-by-step fashion. Getting your care receiver used to this method of instruction both at home and at the day program brings continuity to their days. Having a routine both at a day program and home helps them anticipate what comes next.

Denise Dagan’s full notes from the podcast are below.




Notes by Denise Dagan, Brain Support Network Volunteer

Talking FTD with Geri: Motivating Person with FTD
Caregiving Podcast Network on Blog Talk Radio
August 24, 2017

Denise Brown is the host of this podcast. She has been having her own struggle motivating her husband. She recently put together that her husband is quite capable of participating in activities if she takes the time to instruct him step-by-step.

Denise’s expert guest, Geri Hall, PhD, begins by explaining how executive functioning is required to accomplish a task.

You must be able to:
– Set a goal
– Make a plan to accomplish the goal, and
– Be able to carry out the plan.

A person with executive function difficulties knows what they want to do.
– The more they think about it or concentrate on what’s involved in accomplishing the task, the less they are able to organize their thoughts and accomplish the task.
– They are not being willful or lazy or manipulative. Some days executive function may be better than others. Fatigue makes executive function much worse.
– Depending on the neurodegenerative disorder, they may or may not realize they have difficulty figuring out the proper order in which to do things.

A person with executive function difficulties may:
– Refuse to participate because they cannot immediately think how to get started. Don’t ask, “Do you want to…?” The answer will always be, “No.”

– Wander away in the middle – not because they lost interest or forgot what they were doing, but because they cannot think what to do next to accomplish the goal/task. Sometimes, if you touch their arm to distract them from their mental muddle, and give them the next step to continue toward their goal, they can complete the task at hand.

– Getting the steps mixed up or backward. Putting underwear on outside their outerwear, etc.

– Have difficulty maintaining attention or concentration.

To improve executive function and motivate participation in activities:
– Have a consistent schedule day-to-day. Even so, don’t expect them to be able to know what comes next.

– Use non-verbal prompting. They may not process complex sentences well. Aphasia = not being able to get the words out, but can also include not being able to process what’s being said to them.

— Listening to you splits their concentration from what they are trying to do (like shower), so hand them the soap, rather than tell them to pick it up.

— Trying to follow your instructions makes them think about the task. The more they think about it, the less they are able to finish the task.

– Have bright colored toothbrush, comb, cup, plate, etc. so your care recipient will gravitate toward them – and use them. [My mom liked purple! If it was purple, she would pick it… clothing, cake, toothbrush, comb, etc.]

– Post written instructions (on a white board). This may work early in the disease.

– Task simplification = break activities into steps your family member can follow. Take a bath may become: take off your clothes, use the toilet, turn on the water, get in the shower, etc. Or, you may have to break it down further: take off your shirt, take off your pants, take off your underwear… Have your neurologist write you a referral to an occupational therapist for “functional assessment and task simplification techniques” This teaches the caregiver how to break goals into the number of steps your care receiver needs.

– Get rid of distractions, like the TV. They cannot split their attention.

– Keep activities short in duration. Next time you ask them to participate, notice how long it is before they begin to lose eye contact and drift away from the activity. Keep future activities to just short of that time limit.

– The goal is to get the task done – not necessarily entirely independently.

It definitely can be frustrating. It is easier to just let them watch TV, but the reward is worth the effort because it gets your family member involved with life again. They only watch TV so much because nobody is helping them accomplish things by breaking down the task into each individual step.

Denise Brown was able to have her husband help bake blackberry cobbler by giving him one task at a time until he lost interest. Later she built raised beds for him to garden in because he used to love gardening. She goes out with him and gives him each task to accomplish planting, watering, etc. Then, they made eggplant parmesan together when he brought an eggplant in from his raised garden beds, and were able to enjoy the food together. See if you find joy in your loved one’s face when they are able to do something themselves, even with some assistance. It will warm your heart as a caregiver.

Dr. Geri Hall says to recognize as caregivers you have a lot on your plate and need to develop one way you reward yourself at the end of the day (wine, hot bath, etc. that you find relaxing) as a reward for a job well done in the overwhelming effort you make to engage your loved one in life.

Start with things that are over learned, bathing, eating, hobbies. Your care receiver will be able to participate easier doing these activities with help than doing something that’s totally new. Remember, if it doesn’t work, so what? Try something a bit different tomorrow.

Denise says having your family member go to an adult day program a few times a week helps them to be able to follow these step-by-step instructions at home because that is how the day programs get participation from the program attendees. If you can learn how instruction is presented to your care receiver most effectively, you will be more successful at giving instructions at home. Day programs also follow a routine every day, which helps your care receiver anticipate what comes next.

When your family member is at the day program, you have time for yourself. You should take the opportunity to relax and engage with others outside of caregiving conversation, rather than running errands or doing chores.

You will experience resistance from your care receiver to attending a day program, but if you are persistent and allow them some weeks to acclimate to the new place, people and routine, you may find they really enjoy it, eventually.


“Cannabis and Parkinson’s Disease” – Lecture Notes

Northwest Parkinson’s Foundation (nwpf.org) holds a Hope Conference every year. At this year’s conference (October 7, 2017, Seattle), there was a naturopathic physician, Jade Stefano, who spoke about cannabis and Parkinson’s Disease (PD). She is also a cannabis researcher and organic grower. Her talk focuses on the active compounds in cannabis, medicinal uses of those compounds, and how the compounds might be helpful in PD and might harm those with low blood pressure. She also discusses the pros and cons of different administration methods.

The 40-minute lecture was recorded and is available online:

Of course, thanks to Brain Support Network volunteer Denise Dagan, we have notes to share. See below.

Medical marijuana is legal now in California, and recreational marijuana will be legal as of January 1, 2018. It’s still a good idea to discuss the use of cannabis with a physician. This 40-minute lecture will prepare you for that discussion.




Cannabis and Parkinson’s Disease
Speaker: Jade Stefano, naturopathic physician, cannabis researcher and organic grower
Northwest Parkinson’s Foundation Hope Conference, Seattle
October 7, 2017

The cannabis plant has over 60 cannabinoids, the most famous of which is THC.

There are over 483 identified chemical constituents in cannabis and many more unknown.

Other biologically active compounds are:
– Terpenes (essential oils)
– Flavonoids (proanthocyanins in some purple varieties – also in grapes and berries)
– Carotenoids (beta-carotene – also found in carrots)

Used in medicine for thousands of years, worldwide, even in the US into the 1930s when there were 23 pharmaceutical companies making cannabis preparations. It became illegal in the US in 1937. At the time, the AMA opposed the ban and supported cannabis as medicine. (Source: Russo and Grotenerman, 2006)

Why do people with PD use cannabis?

Different people will have varying responses. Not all people get relief from all symptoms.

For some it may help pain and sleep, but not movement at all. Ease of pain and sleep is common in all user of cannabis, not just for those with PD, so it is likely cannabis will help with these PD symptoms.

Others find relief with movement symptoms, but it is less common than relief from pain and sleep symptoms.

Bioactive Constituents Explained…

Delta-9 Tetrahydrocanabinol (THC)
– most common cannabinoid in US cannabis
– flower ranges between 10-28% THC dry weight
– causes the ‘high’
– low doses can be therapeutic, especially in conjunction with other compounds found in the plant

THC medicinal actions:
– analgesic
– antispasmodic
– appetite stimulant
– neuroprotective
– anti-inflammatory
– reduces blood pressure
– bronchodilator
– anti-neoplastic (anti-cancer)
– anti-emetic (anti-nausea)

THC adverse reactions:
– can cause drop in blood pressure in some people, resulting in fainting and dizziness
– rapid heart beat
– lethargy, especially in high doses or oral consumption
– paranoia
– hallucinations
– impaired short term memory, but not long term memory
– altered consciousness
– giddiness
– social phobia
– nausea at high oral doses

Canabidiol (CBD)
– second most common cannabinoid in medical cannabis
– does not cause euphoria or alteration of consciousness / non-intoxicating
– may cause a relaxed sensation
– patients report it helps with panic attacks, generalized anxiety, and nervousness
– synergistic with THC for some therapeutic benefits such as analgesia, anti-emetic, anti-neoplastic while simultaneously reducing undesirable effects of THC such as anxiety, tachycardia, hunger, lethargy and alteration of consciousness. (Source: Russo and Guy, 2005)
– Adverse reactions are rare and include headaches

CBD actions:
– analgesic (especially for neuropathic pain)
– anti-inflammatory
– anxiolytic (anti-anxiety)
– anticonvulsant (seisure disorders)
– neuroprotective
– anti-oxidant
– antipsychotic
– anti-neoplastic (anti-cancer)
– modulates THC metabolism (taken with THC reduces THC effects of euphoria/high)
– immune modulating
(Source: Russo and Guy 2005, Fernandex-Ruiz et al. 2013, Zuardi et al 2001, Lee 2011)

CBD from Hemp
– Hemp is an agricultural form of cannabis use to produce fiber, oil, and seed.
– Contains high amounts of CBD and less than .3% THC.
– It is available online, at farmers markets, etc. as nutritional supplements and medicine.
– Hemp derived CBD is often of dubious origin, unregulated, and may be contaminated with heavy metals and pesticides.
– Because Hemp is a bio-accumulator (absorbs toxins from soil), it is used in bio-remediation projects to ‘clean’ soils from heavy metals and pesticides.
– Devoid of terpenes and other beneficial constituents
– Use caution when buying these products!
– Some ‘clean’ hemp CBD is available on market from Kentucky and Colorado, but do your research if considering these products.

Which THC:CBD ratio is best?
– it depends…
– every person varies in their THC:CBD needs
– some cannot tolerate significant THC and respond well to CBD dominant strains 20:1 CBD:THC
– some need a strong analgesic effect and have a high tolerance to THC so prefer a THC dominant strain 20:1 THC:CBD
– some need some THC for symptoms, but cannot tolerate the a THC only strain. These people do well on a 1:1, 2:1, or 3:1 THC:CBD ratio
– CBD acts at the same receptors as THC so ingesting CBD and THC together helps to moderate the effect of THC by antagonizing the THC at the cannabinoid receptors.
– By adjusting the THC: CBD ratio, a person can customize e medicine to fill their needs.
– high CBD ratios can be used during the day when a person may have tasks to accomplish that would be hindered by high THC intake. Then at night they can switch to a higher THC variety that may be more effective for pain or sleep.

A 1:1 CBD:THC medicine is a great place to start: Harder to find, but available in WA.
– 1:1 ratios have been very effective in trials conducted on the drug Sativex (a whole plant nasal spray pharmaceutical, available in the UK and currently in US trials)
– They proved effective in double-blind trials for neuropathic pain, intractable pain due to cancer unresponsive to opiates and a various MS symptoms in severals studies.
– MS patients experienced reduced spasms, pain, bladder problems and tremor.
(Source: Russo and Guy, 2005)

– These are some of the other cannabinoids fund in cannabis, present in very small amounts
– They are important components in creating a whole plant medicine and synergies with the other constituents.

– Essential oils found in all plants and used in body care products and foods, as fragrances and flavors
– Cannabis is high in these
– They create unique flavors and contribute to effects of different strains
– Contains hundreds of different terpenes and profile varies by cultivar
– Common terpenes found in cannabis: Myrcene, Pinene, Linalool, etc.
– Synergistic effect with cannabinoids
– provides aromatherapy benefit
– provides significant medical benefits

Terpenes take away…
– look for cannabis that is high in terpenes
– will have better flavor and is better medicine
– some companies test their flower and concentrates for terpenes so look for tested products
– flower should test over .8% terpenes, Concentrates over 5% (maybe higher depending on product)
– untested flower should be fragrant when squeezed between fingers It should not smell like hay.

The Entourage Effect
– the collective action of all the active constituents
– involving both synergy and antagonism
– the whole medicine is greater than its parts
– a review by McPartland and Russo in 2011 cite research that whole plant cannabis extracts produce an effect 2-4 times greater than expected based on its THC content alone.

Sativa vs Indica
– Different cultivars based on their genetic origin, growth patterns and perceived effects
– Little scientific backing for this distinction, but a commonly used marketing strategy by dispensers and growers
– Does not often correlate with chemical composition
– The variation in effects is now known to be a result of terrine and cannabinoid profiles
– Dispensaries often ask if you want saliva or indica, BUT the CBD:THC ratio and terpene profile are much more relevant

Suggestions Specific to PD Symptoms:
Cannabis Actions that may be of benefit in PD
– analgesic
– soporific (sleep inducing)
– neuroprotective (Hampson et all 2000, and Kluger et all 2015)
– anti-oxidant
– anti-inflammatory
– stimulate neurogenesis (test-tube evidence)
– anti-depressant
– antiolytic (anti-anxiety) [Approved for PTSD treatment]
– anti-spasmotic: CBD can reduce dyskinesia

– some people find THC heavy strains to be best, but others find THC stimulating. Try different THC:CBD ratios, as well as different cultivars with varying terpene profiles.
– Myrcene is a terpene that is very common in cannabis and known to have a soporific opiate like effect. A good choice for sleep. (Source: Russo 2017)
– Pinene is a terpene known to be stimulating so avoid it for sleep, but use during the day.

– Dr. Mischley study at Bastyr Univ. on tremor and cannabis using a gyroscope sensor to monitor tremor.
– Only 4/10 had tremor substantial enough to be picked up with the sensor; of those, it decreased tremor.
– During interviews, 9/10 said it helped PD symptoms, 1 said it made tremor worse initially then better, 6/10 said it improved sleep.

REM Sleep Behavior Disorder (RBD)
– A study found cannabis CBD can control symptoms of RBD in those with PD (Source: Chagas et all 2014)

Dystonia (Muscle Cramping)
– e.g. curled toes in the morning when you wake up.
– cannabis works very well for all sorts of muscle cramping (intestinal, menstrual, etc.)

Pain (Myalgia)
– THC and CBD are both analgesics
– higher doses = more analgesia
– some terpenes are also analgesics: Myrcene (also good for sleep), Pinene (also good for daytime alertness) and Linalool ( also good for anxiety)
– good for musculoskeletal pain, GI pain, headaches, Nerve pain…
– CBD may be especially good for nerve pain
– THC better for cramping
– direct analgesic effect as well as indirect effect by taking one’s focus off pain
– can help get off opiates after injury

– due to too much supplemental dopamine
– multiple studies show benefit and some show no effect
– possible differences in formulations used in studies so experiment. Possibly higher ratio of THC as it helps cramping.

– common in PD
– cannabis can cause anxiety as a side effect. This is caused by THC and certain terpenes. To avoid anxiety, add CBD to your formula. Increase ratio of CBD until anxiety symptoms subside.
– cannabis can also treat anxiety, especially CBD chemovars
– if you have tried one strain and it makes you anxious it does not mean other strains will do the same
– adding CBD to your formula can modulate the THC and reduce or eliminate anxiety
– research: Cannabis users experience less stress. Cortisol levels do not rise as easily (Cuttler, C. 2017)

– epidemiological studies have shown cannabis users are less depressed
– other studies have shown an association with cannabis use and depression but it is not clear if the depression is due to the cannabis or other factors.
– moderate use in PD patients has potential to improve symptoms of depression by alleviating pain, anxiety and other symptoms that exacerbate depression. (Source: Babayeva et al 2016)

Euphoria as a Side Effect:
– caused by THC
– frequent use creates a tolerance to this effect
– some find this to be pleasant, others do not
– can be reduced by increasing CBD content/ratio

Choosing/Sourcing Quality Medicine:
Avoiding contamination (pesticides and molds) and understanding test results
– grown your own
– buy at retail in legal states
– buy via medical cannabis programs
– purchase on the black or gray market

Organic/Pesticide Free Cannabis Products
– pesticides are lipophilic, meaning they bind to lipids (oils and waxes) which cannabis is high in
– pesticides will concentrate to very high levels in hash oil and cannabis extracts
– extracts are often produced by third party processors buying input material from many sources using unknown pesticides
– products are rarely feted for pesticides
Jade knows growers who label their product as pesticide free and knows they use pesticides, so don’t trust the claim “Pesticide Free” on the label. Nobody is verifying, so it can’t be trusted in many cases.

How to find pesticide free cannabis:
– if buying on black/gray market, know and trust your grower. Ask for a list of pesticides they use.
– if buying at retail in legal states:
— Look for a Third Party Certification that inspects growers and is on the label as having tested soils, etc at the grower.
1. Clean Green Certified
2. Certified Kind
3. Certified Sun Grown

Department of Health (DOH) Certified Complaint Cannabis
– WA state
– tested for heavy metals, mycotoxins and pesticides
– hard to source
– expensive
– poor product selection
– availability improving as testing requirements will change
– www.doh.wa.gov/Portals./1/Documents/Pubs/608011.pdf

Sungrown vs. Indoor Grown (uses a TON of electricity, has less pesticides)
– Good quality Sungrown is:
— Ecologically sustainable
— Less pesticides
— more vital and patent than herbs grown under artificial lights
— terpenes are produced by plants as a defense mechanism against pests and stressors which only exist outdoors
— more flavor/higher terpene content
— more complex phytoconstituent profile due to full spectrum sunlight.
— better medicine

Understanding test results – required by WA law (* only these are required on the package. Total testing by request in store)
– THC*
– CBD*
– others, CBC, THCV
– Total cannabinoids*
– terpenes
– microbial: E. Coli and salmonella
– mycotoxins
– residual solvents
– moisture content

Many products and consumption methods currently available:
– Flower (smokable)
– Edibles
– Capsules
– Tinctures, glycerites, syrups
– Concentrates: Hash, hash oil
– Creams, oils, salves (good for muscloskeletal pain and sore joints)
– Sublingual sprays and drops
– Suppositories (vaginal or rectal)
– Pharmaceuticals

Consumption methods:
– vaporizing or vaping (pre-rolls and infused pre-rolls are available at retail stores)
– dabbing
– smoking
– oral ingestion
– mucousal applications
– topical absorption

Inhalation, including vaporization (with no combustion products into the lungs, so safer)
– inhalation goes directly from the lungs into the bloodstream and then to the brain and other tissues where it binds with CB1 and CB2 receptors. It acts quickly (5 minutes) and wears off quickly (within 2 hrs.) (Source: Huestic et al 1992 a,b)
– fast acting, easy to control dose
— pre-rolls and infused pre-rolls are available at retail stores
— portable flower vaporizers vaporizes off cannabinoids and leaves carbon behind
— vape pens
—— avoid cartridges made of plastic (hormone mimicking compounds)
—— glass and metal are better. Look for 100% certified pesticide free CO2 oil.
—— discrete
—— effective way to get moderate doses with minimal smoke
—— easy to calibrate dosing. Start with 1 puff and increase until relief is noted
—— available in refillable and disposable models
—— cautions: (a) components made in China and there are many low quality on the market that may contain heavy metals and plastic residues. (b) in many products the concentrate in cart is diluted with PEG or another carrier oil such as MCFAs. These have not been tested for safety and PEG creates formaldehyde as a byproduct when vaporized.

Oral consumption
– enters the bloodstream through the gut where it is sent to the liver before entering other tissues. It takes up to 2 hrs. to act and can last 8-12 hrs.
– easy to over consume. Doses must be titrated
– over consumption can be uncomfortable but is not toxic. Symptoms can include nausea, panic attack, rapid heart rate and hallucinations.
– some cannot tolerate oral consumption of THC-containing products at all.

Tinctures (drops)
– traditional herbal preparation are ethanol based, but not available in WA state. You can make your own by soaking flowers in Ever Clear.
– glycerin and water based are available and very palatable
– WA state has very low limits on amount of THC allowed in edible/oral products – 10mg/serving. Good for many, but some find them too weak. Experiment to find what works.

Edibles are often loaded with sugar, so be careful of your diet/calories

Topicals (massage oils, creams, etc.)
– used for muscoskeletal pain
– best preparations often contain other herbal medicines such as cayenne, menthol, arnica, calendula and other plant essential oils.

Juicing fresh cannabis leaves and sometimes flowers works well. Add to other fruit and/or veg.
– no peer reviewed research but reports from patients claim it helps with autoimmune conditions such as rheumatoid arthritis and lupus.
– juice contains all the cannabinoids in the acid form (THCA, CBDA, etc.) and the carotenoids and flavonoids which would not survive vaporization
– juice will not cause intoxication

Concentrates (smoke this)
– resin glands which contain cannabinoids and terpenes are isolated from plant material using various methods and turned into an oil or hash product
– high potency
– good for symptoms that are not responding to flower
– small amounts can be highly effective
– can use vape pen

Look for:
– CO2 oil: extracted with carbon dioxide
– Bubble hash: extractd with ice and water
– Ethanol hash oil (RSO or EHO): extracted with water and alcohol (eat or smoke this)
– Kief: isolated resin glands (trichomes) extracted by sifting through fine mesh screen
– Rosin: extracted with heat and pressure

– BHO / Butane hash oil – AVOID THIS PRODUCT. It is extracted with butane and contains residue
– may be sold as crumble, sugar, shatter, wax
– hydrocarbon extracted products:
— Distillates: super refined distilled hash oil or BHO, 90-98% THC and/or CBD.
— Has all other plant constituents removed
— Will concentrate any pesticides that may have been used on the plants
— No longer an herbal whole plant medicine, closer to a pharmaceutical but not tested or purity
— Devoid of natural terpenes. May have un natural terpenes added back to create ‘flavor’

– cannabis concentrate is placed on a hot surface and inhales through a ‘dab rig’
– efficient and effective way to ingest high doses in small quantities
– good for 10/10 pain not responding to lower doses
– not for beginners

Dabbing cautions:
– can irritate lungs if too hot or too large a dose. Use low temperature to achieve vaporization (under 580F)
– BHO (Butane) dabs are the most common and should be avoided
– dabbing THC heavy products will cause a high level of intoxication quickly so it is unsafe to drive or operate machinery
– avoid if you have low blood pressure as it can cause a rapid drop (THC mostly)
– safest product to dab are: Bubble hash, CO2 oil, Rosin

Oral ingestion of concentrates:
– concentrates can be put into capsules, cooked in food, or taken directly by mouth
– EHO and CO2 oil are commonly taken orally
– dosing can be easily calibrated if the product has been tested. 1g oil tested at 65% THC contains 650mg of THC. If desired dose is 100mg, take 153mg per dose.
– oral dosing should be titrated over 1-2 weeks starting with a dose 1/4 size of a grain of rice.

DUIC = Driving Under the Influence of Cannabis
– Illegal everywhere
– OR and WA have blood test to determine if you are DUIC

www.cleangreencert.com has clean, green growers/suppliers

Chronic Relief: A Guide to Cannabis for the Terminally and Chronically Ill, by Nishi Whiteley

Questions and Answers:

What is the shelf life of cannabis?
Cool, dark place can be years. Sunny, warm places will be really short. No need to refrigerate or freeze.

Where to buy?
DOH certified medical grade cannabis is expensive and hard to find. She likes these stores: Dockside Cannabis (2 locations in WA + online sales), Novel Tree (Bellevue, WA) has a medical section. Medical grade cannabis has been tested for pesticides and micotoxins.

Dabbing compared to morphine?
You don’t need to go straight to dabbing to wean yourself off morphine, but yes. Cannabis can be a good way to wean off morphine.


“An Advance Directive for My Mind” (letter to children)

The author of this blog post helps her stepfather care for her mother who has dementia. This blog post is a guide to the author’s children if the author develops dementia and ends up being cared for by her children.

An excerpt: “If the time comes when I’m no longer who I used to be, help me live my life, but also set boundaries for living your own. My life is almost over and yours isn’t, so save yourself. Take care of me only as long as you can take care of yourself too. Don’t try to do everything. Before the chaos overwhelms you, get as much help as you need, as quickly as you can.”

Here’s a link to the blog post on “Medium”:


An Advance Directive for My Mind
by Rachel Ratliff
Nov 28, 2017

If you read the blog post online, you can also listen to the music suggested by the author.



“When Breath Becomes Air” Discussion (on doctor-patient interaction) with Lucy Kalanithi

This is a thought-provoking discussion of doctor-patient interaction that may benefit everyone in our network.

Many people have heard of Paul Kalanithi, who wrote “When Breath Becomes Air,” while being treated for stage IV metastatic lung cancer at the end of his training as a neurosurgeon at Stanford.  He died just before finishing the book.  His wife Lucy (also a Stanford physician) wrote the epilogue to complete the book.   During the writing of the book, he was both doctor and patient, and Lucy was both doctor and caregiver.  This summer, Lucy Kalanithi discussed the book and her thoughts on doctor-patient interaction with the dean of the Stanford School of Medicine.

You can watch the hour-long discussion here:


Discussion on “When Breath Becomes Air” with Lucy Kalanithi, MD, and Dean Lloyd Minor
September 1, 2017 (date video posted)
Stanford Medicine

Thank goodness for Brain Support Network volunteer Denise Dagan who watched the lecture and took notes!  See below.  Denise recommends both “When Breath Becomes Air” as well as “Being Mortal” (different author).

There’s also a good, short Stanford Medicine article — that contains lots of quotations from Lucy — about the conversation here:



Notes by Denise Dagan

Discussion on “When Breath Becomes Air” with Lucy Kalanithi, MD, and Dean Lloyd Minor
September 1, 2017 (date video posted)
Stanford Medicine

Lucy shares some memories of interactions with medical professionals throughout Paul’s treatment and reflects on the doctor-patient interaction from both sides of that coin.

For example:  Lucy was taught in medical school about the statistical correlation between a patient’s positive interaction with their medical team and adherence to prescribed therapies and medications.  Now, she has a personal sense of the magnitude of trust that develops when you, as a patient, feel true empathy from your medical team.

Conversely, there was an incident in the hospital during which Paul felt the resident on duty was ignoring Paul’s request to add a cancer fighting drug to Paul’s medication list, so Paul took a dose from a stash in Lucy’s purse until he had time to discuss the issue farther with his medical team.  Lucy understood from that experience that patients in the hospital feel imprisoned, vulnerable and powerless.  They both knew taking medications not on the prescribed list was against patient safety rules and disrespectful to the resident on duty, but from the patient’s point of view, they had to do what they had to do to look out for their own best interests.

Paul wrote about a fellow doctor who committed suicide after the death of a patient.  Stanford is becoming a leader in mental health care of medical staff and what measures they can implement to support stressed staff, minimize stigma over mental health issues and prevent burnout.  Mindfulness, sleep hygiene, social connection and other self help measures are being discussed and made available to employees.  It is exactly the same recommendations given to family caregivers to prevent burnout!

Paul was a humanities student before developing an interest in the physical nature of human beings and our mortality.  He pursued that line of thinking by attending medical school.  Lucy has come to agree with Paul that one cannot understand the nature of being a physical being and one’s mortality with scientific or medical facts and figures.  She feels that Paul’s background in literature and philosophy gave him the best foundation to come to grips with his untimely illness and death.

Paul wrote “When Breath Becomes Air” for their daughter, who is now 3.  Lucy has built upon that will for their daughter to have a connection with her father by putting together photos and stories, and having experiences with their daughter that she and Paul talked about doing together as a family.

Especially with the increased complexities of delivering care, it really must be a calling because there are easier jobs.  This brought to Lucy’s mind her thinking in medical school that she was seeing more at her young age than most people will ever see with respect to the human condition.  Paul’s humanities background really gave him a leg up in empathizing and communicating with patients the complex scientific details of their diagnosis and treatment options.

Lucy’s definition of empathy begins with really understanding what the other person is feeling.  Sometimes, that is just naming what is happening or what they appear to be feeling, then waiting in the silence for the other person to respond.  This can get the conversation to what needs to be spoken really quickly although it isn’t easy to sit with you own discomfort while they come to their response.

When she worked at Kaiser management found doctors could increase patient satisfaction by 20% just by asking, “How is this affecting your day-to-day life?” which is an empathetic question.  The flip side is also true.  If your medical team is not being empathetic, or is not giving you straight up information you need, tell them you prefer to know the whole truth.  It will make them feel more comfortable being direct, and they will be more likely to speak with you in that manner.

At time stamp 30:00 they switch to a Q&A format.  Lucy begins to speak about her personal life.

Lucy shares that her career is in a different place because of all the public speaking she’s being asked to do and dating somebody new (which was Paul’s wish), that there is a certain amount of uncertainty she learned to live with during Paul’s illness that is serving her well now that there is a different kind of uncertainty in her life.

The way we think about end of life care with all the technology that is available is as confusing for medical professionals as everyone else because, as a medical professional you have more understanding about what can be done, but there is still the question of should it be done.  Communicating that well to patients is difficult because individual values come into play for the patient, doctors and each member of the patient’s family.  Lucy brings up “Bring Mortal,” which discusses these issues so very well.

End of life care is where both the business case and moral case for being prudent about the 18% of GDP that is healthcare expenditures in the US.

An audience member asked Lucy to talk about how Paul’s faith was challenged during his illness and how that may have changed his approach to his patients.

Lucy doesn’t believe Paul’s faith was challenged during his illness.  He would have called himself a Christian.  That label impacted his perspectives on forgiveness, service to others, etc.  Having a ‘good death’ has something to do with whether you feel you led the life you wanted to live.  Paul had a ‘good death.’

An audience member asks if her conception of happiness evolved over the course of Paul’s disease and is it part of the human experience for a disease to do that?  To the first part of the question, the answer is yes.  There’s a difference between happiness and meaning.  The most meaningful things involve some element of pain.  Lucy used to want to be happy and I want to raise a happy kid.  Her perspective has changed to wanting to have meaning in her life and raise a resilient kid.  This change was illuminated through Paul’s illness, but Lucy doesn’t believe it has to be an illness that helps you find meaning, but persevering through any difficult experience or sharing someone else’s pain or struggle can help you find meaning.

An audience member who’s a physician’s assistant (PA) student asks Lucy about the relationship Paul had with a beloved nurse practitioner during his treatment and Lucy’s work with advance practice providers.  Lucy is an attending in Express Care (outpatient urgent care) where she works with MDs, NPs, and PAs.  She relies on all of them as different aspects of the medical care team in that setting.  She also believes NPs and PAs have a tremendous role to play in primary care around the world.  During Paul’s care she relied tremendously on people in those roles, One NP told Paul she really had hoped he would be one of those patients who was in their oncology clinic for seven years, but he just wasn’t going to be.  Even when she was delivering terrible news, because it came from her and they knew she really cared about him/them, it was the best way to get terrible news.

An audience member asked how it was being a doctor and caregiver (and patient) at the same time.  Lucy felt dependent on Paul’s health care providers as neither of she nor Paul are oncologists, but they also felt they communicated well the medical team that they understood the risks and benefits of various procedures and treatments and were willing to take the risk by either taking advantage of an option or by passing on an option.