Monthly Archives: December 2017

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

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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.

Robin

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www.blogtalkradio.com/caregiving/2017/08/24/talking-ftd-with-geri-motivating-persons-with-ftd

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

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“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:
nwpf.yourbrandlive.com/c/jade-stefano

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.

Robin

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

nwpf.yourbrandlive.com/c/jade-stefano

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?
Pain
Tremor
Sleep
Anxiety
Depression
Dyskinesia
Dystonia
Bradykinesia
Inflammation

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)

CBG, CBC, THCV, CBN, CBDV, delta-8-THC
– 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.

Terpenes
– 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

Insomnia
– 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.

Tremor
– 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

Dyskinesia
– 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.

Anxiety
– 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)

Depression
– 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*
– THCA
– CBD*
– CBDA
– CBG
– CBGA
– others, CBC, THCV
– Total cannabinoids*
– terpenes
– microbial: E. Coli and salmonella
– mycotoxins
– residual solvents
– moisture content

Many products and consumption methods currently available:
Products:
– 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

Avoid:
– 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’

Dabbing
– 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

Resources:
www.beyondthc.com
www.projectcbd.org
www.cleangreencert.com has clean, green growers/suppliers

Book
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 Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives”

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“An Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives”

This blog post is titled “An Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives.” The author is Mark Stolow, the CEO of Huddol, which is an organization “committed to helping every caregiver along the journey.”

Robin

www.huddol.com/Huddoling/an-open-letter-from-a-caregiver-to-the-diseases-illnesses-and-afflictions-that-shake-our-lives-dear-unexpected-pain-in-my-ass-you-re-not-what-i-imagined-and-you-re-not-what-i-asked-for-you-8t9f0s1e

An Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives
Mark Stolow
Huddoling
September 20, 2017

Dear Unexpected Pain in My Ass,

You’re not what I imagined and you’re not what I asked for. You can expect me to feel angry, disappointed, and wrestle with self-pity. It’s easy to blame you. But I’m learning that you’re just a catalyst, and I am the cause – I move my emotions.

You’re here and I’m trying to get used to that, but don’t expect me to welcome you with open arms. You didn’t think you could stomp on the portrait of my perfect life and have me just stand by idle. I’m shaken and stirred, but I’m not down and out.

You force me to look at my loved one in a way that challenges my ideas about love and relationships. I never back down from a challenge and ideas can change.

You make me feel vulnerable, stripped down, and even defenceless. But I’ll dig deep and find another gear. The callus from your wounds will be my armour, but it will never make me callous. It will never harden me.

My friends don’t understand you, which means they hardly understand me anymore. But I’ve met some other people along the way, some people who know you well. They’ll help me move through your unpredictable and wily ways.

Physicians deplore you so much, they hardly notice me. I’m okay being in the silent minority, walking quietly but carrying a big, life supporting stick.

Your habit of poking your nose into my life, my work, my family, my solitude, into every space that I live and breathe, is exhausting. But you can’t deflate my will or wreak havoc on my resolve. I’m like a finely tuned All-in-One – scanning, printing, copying, and faxing my way to making sure you go on yours.

So to you, the disease, illness, affliction that shakes my life, I say: You may have made me, but you won’t break me.

Yours sincerely,
The Unsilenced Caregiving Minority

 

Caregiving and the holidays: from stress to success

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At a caregiver-only support group meeting I attended today, the terrific social worker, Susan Weisberg, LCSW, distributed this useful article from Family Caregiver Alliance (caregiver.org) on surviving the holidays with low stress.

Robin

www.caregiver.org/caregiving-and-holidays-stress-success

Caregiving and the holidays: from stress to success!

For many caregivers the holiday season gives rise to stress, frustration and anger, instead of peace and good will.

Caregivers may feel resentful towards other family members who they feel have not offered enough assistance. Managing care for someone who has a cognitive impairment may leave caregivers feeling that they will not be able to participate as fully as they would like in family gatherings. Already feeling overwhelmed with caregiving tasks, stressed-out caregivers may view traditional holiday preparations as more of a drain of precious energy than a joy.

Following are some suggestions that may help make the holidays more enjoyable for you and your loved ones. Keep in mind that the holidays can, in fact, provide unique opportunities to seek better communication, connection and support from family and friends.

An opportunity for communication

It’s hard to know how much to communicate about a loved one’s decline in cognitive functioning and personal care needs. Whom do you tell? How much do you tell?

Although it is understandable to have reservations about discussing a loved one’s impairments, honest communication about the realities of the caregiving situation offers others the opportunity to respond with assistance. Sharing the truths of your situation may help reduce some of the feelings of isolation and lack of appreciation common in caregivers.

Holiday greetings and a brief note

Some caregivers have had success in writing a brief note describing the person’s condition and enclosing it in a holiday greeting card. This can be a nonthreatening way to inform distant or uninvolved relatives about the realities of the caregiving situation. If written in a tone that’s not accusatory or guilt-inducing, family members may be more forthcoming with assistance or, at least, have a better understanding of the effort you are putting into providing care.

Let sleeping dogs lie?

It is common for caregivers to be disappointed with family members who they feel are not “pulling their weight” in caregiving responsibilities. If this holds true for you, and your goal is to enjoy the holidays, you must decide how much and when to communicate this disappointment. Consider clearing the air before the holidays or perhaps resolve within yourself to put those feelings on hold, with the intention to discuss the matter after the holiday season passes. In the meantime, enjoy the holiday!

Be clear about your energy level

Let family members know that your caregiving duties are keeping you very busy and that you only have so much energy for holiday preparation and hosting duties.

Accept the need to adapt

Caregivers often have to adapt their traditional role or experience of the holidays. This may mean allowing another family member to host more time-intensive festivities. You may need to modify the amount of time away from home to match the comfort level of your impaired loved one. You may also have to choose which events to attend based on which would be the simplest, least exhausting and most enjoyable for the person for whom you provide care—and for you.

The visit room

Don’t expect the person with cognitive impairment to be able to adapt to all situations; you may need to adapt the environment to their needs. See if you can arrange to have another room in the house designated as a quiet place for the impaired person. Many people with dementia find multiple conversations and background noise disturbing. To avoid this anxiety, the person may benefit from time in a quieter room with less stimulus where family members could take turns visiting with them.

Share your wish list

  • Respite: some caregivers ask for time off from caregiving duties as a gift for the holidays. This could mean another family member gives you a break. Sometimes asking for a Saturday off “in the next three months” is more accepted, as family members can then schedule it into their calendars. If this is not possible, perhaps they would consider paying for a home care worker or a stay at a respite facility. Your FCA Family Consultant can help you locate these resources in your area.
  • Home repairs: Do light bulbs need changing, or grab bars need installation? That maddening pile of junk in the garage needs to go to the dump? Tasks such as these may be the perfect way for a family member to help out if providing personal care is too uncomfortable for them.
  • Care for you! How about a gift certificate for a massage, facial or manicure? How about an opportunity to spend the day fishing or a walk in the outdoors?
  • Book your homecare worker early! Speak with your home care worker or home care agency early about your holiday plans!

Schedule one-on-one time

While caregiving, it is easy to get caught up in all the tasks of personal care and homemaking chores. Make a point of setting some time aside this holiday season to enjoy the person you care for in a relaxed, one-on-one context. The best activities are those which take advantage of long-term memory—usually less impaired in people with dementia. Try looking through family photo albums or unpacking holiday decorations, which may stimulate memories.

Reflect on the rewards

Reflecting on the rewards of caregiving can help maintain your self-esteem. It may feel very rewarding to know that you are fulfilling a vow or promise you have made to the person for whom you provide care. Your caregiving may be an expression of living up to your personal ideals or religious beliefs. You may also be experiencing a great deal of growth as you learn new skills and meet challenges in ways you never imagined possible.

A little thank you goes a long way

After the holidays, write a thank you note to family members or friends who spent time with your loved one. Emphasize the positive impact their visit or brief time spent with your loved one had on them. This may reinforce positive feelings from their visit and diminish any discomfort they experienced. They may then be more encouraged to visit again or be more supportive of your efforts.

“Is It Alzheimer’s or Another Type of Dementia? How the Experts Make a Diagnosis”

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This post may be of interest to those dealing with the non-Alzheimer’s dementias in our network — Lewy body dementia, progressive supranuclear palsy, and corticobasal degeneration. (PSP and CBD do not always present with dementia.) Lewy body dementia is specifically mentioned in this interview.

Being Patient (beingpatient.com) is an Alzheimer’s news website. In July 2017, the news organization interviewed Dr. Marwan Sabbagh of the Barrow Neurological Institute in Phoenix, AZ. In the interview, Dr. Sabbagh describes the challenge in making a dementia diagnosis. He describes some improvements that could be made in the standard practice of diagnosing dementia.

Dr. Sabbagh says: “Pathologically pure Alzheimer’s without any other pathology is quite rare. It’s only like 33 to 40 percent. Most Alzheimer’s is mixed with something else – hippocampal sclerosis, vascular change, argyrophilic grain [disease], or Lewy body. Pure disease of any type is quite uncommon. A lot of people have overlap but they look typically like Alzheimer’s dementia, so the clinical presentation and the pathological presentation don’t always align as much as you would think they would. … As a clinician, I ask ‘What’s the clinical syndrome and how do we go about teasing it out to make sure we have the correct diagnosis?’ … People are grossly misdiagnosed. Lewy body is not detected often. Most of the other dementias are completely missed.”

The video interview is just under 12 minutes. Excerpts from the interview are copied below. (The “transcript” doesn’t include all of the interview.)

Robin

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www.beingpatient.com/alzheimers-another-type-dementia-experts-make-diagnosis/

Is It Alzheimer’s or Another Type of Dementia? How the Experts Make a Diagnosis
Interview with Marwan Sabbagh, MD
Being Patient (beingpatient.com)
July 26, 2017

Although the National Institute of Health has published medical reports on guidelines to diagnose Alzheimer’s disease, it can sometimes take years for patients to get an accurate diagnosis from their primary care doctors. Expensive scans or lumbar puncture tests are one way to confirm the presence of beta amyloid plaques or tau tangles in the brain, but those aren’t an option for many patients due to their high cost. Being Patient asked Marwan Sabbagh, a leading researcher on the diagnosis of Alzheimer’s disease at the Barrow Neurological Institute about the best way to determine if a patient is suffering from mild cognitive impairment or dementia.

Being Patient: There’s a lot of confusion over how you get diagnosed for Alzheimer’s disease. Previously, we’ve been told that a PET (positron emission tomography) scan or a spinal tap are the only conclusive ways to figure out whether there are plaques and tangles in your brain. Why is there so much confusion over diagnosing dementia?

Marwan Sabbagh: The historical, medical practice in the United States has been to take a diagnosis of exclusion. You have a medical history, a neurological exam, cognitive impairment, historically, and then you get a MRI to exclude brain tumors, masses, hydrocephalus, or stroke. You get a thyroid [exam] to exclude thyroid problems, and you get a B12 level [test] to exclude deficiencies in B12. The problem has been a diagnosis of exclusion is a grossly inaccurate approach and the diagnostic accuracy, at best, is 75 percent.

Being Patient: What are some of the essential questions you need to ask and what are some of the essential things that primary care doctors should be looking at in order to determine whether or not this is Alzheimer’s dementia?

Marwan Sabbagh: I think doctors know how to do a mini-mental state exam – a MOCA, Montreal Cognitive Assessment. They know what to do but they don’t know what questions to ask on the front end, so I’ve been proposing a restructuring of the initial side of the consultation. There are structured interviews that are available now – the AD8, the AQ and the IQ code. These are caregiver informant-based interviews. Do they have this?Do they have that? Are they doing this? [These questions] inform the provider to say, “It’s time to look further.”

The second thing I propose is that we need to look at aggregate risk analysis. There are now ways to say that the probability of Alzheimer dementia is very high if you are age 85, have a family history, female gender, hypertension and diabetes. You can come up with a score that says the probability of Alzheimer dementia is very high.

Being Patient: I want to talk a little bit now about different types of dementia and diagnosis – a number of patients say they were misdiagnosed and a pathologist we spoke to said that, through autopsy, he found that the majority of cases in his practice are being misdiagnosed. How do you tell if it is Alzheimer’s or another type of dementia?

Marwan Sabbagh: Pathologically pure Alzheimer’s without any other pathology is quite rare. It’s only like 33 to 40 percent. Most Alzheimer’s is mixed with something else – hippocampal sclerosis, vascular change, argyrophilic grain (disease) or Lewy body. Pure disease of any type is quite uncommon. A lot of people have overlap but they look typically like Alzheimer’s dementia, so the clinical presentation and the pathological presentation don’t always align as much as you would think they would.

As a clinician, I ask “What’s the clinical syndrome and how do we go about teasing it out to make sure we have the correct diagnosis?” You are absolutely right. People are grossly misdiagnosed. Lewy body is not detected often. Most of the other dementias are completely missed.

Being Patient: Does it matter to the patient in the end in terms of how they’re dealing, and coping, and engaging in maybe lifestyle treatments or medication?

Marwan Sabbagh: It does. It matters a lot. The reason it matters is lifestyle modifications, which are probably very good for brain wellness and prevention strategies in the Alzheimer’s spectrum from pre-symptomatic to the full dementia probably do not have as much data to support the recommendations in other dementias. Flatly, I don’t think there’s any shred of evidence that lifestyle recommendations would help another dementia like Lewy Body or frontotemporal dementia.

Being Patient: Is there a difference in diagnosing early onset versus dementia as Alzheimer’s in an elderly patient?

Marwan Sabbagh: In the way I approach it, yes. Most commonly, if it were a young person, early onset, I would do a spinal tap as my CSF (cerebrospinal fluid) confirmation to confirm the diagnosis. I tend to be a little bit more aggressive and invasive in what I do to diagnose my patients. Older patients, I might get a PET scan and, if it’s approved, I might get neuropsychological testing. I might get an ApoE genotype.

Being Patient: So many people now are impacted by this disease, a lot who are the children of a parent or a grandparent, and they want to know what are the early signs that they should look out for?

Marwan Sabbagh: You never misplaced things, now you’re misplacing things from time to time. You’re telling something repeatedly and you never did that before. These are the kinds of very subtle, very beginning things that would say [it’s] time to get an evaluation. Especially if there’s a risk.

Being Patient: There are people who carry ApoE4, who have both one variant and are homozygous, and there are people who don’t, who end up getting Alzheimer’s. How much should that genetic profile enter into diagnosis?

Marwan Sabbagh: That’s controversial and I’m sure you’ve had different opinions from different doctors so I’m going to give you my perspective. I tend to be on the more progressive side of the discussion. In the clinical evaluation of my patients with mild cognitive impairment (MCI) due to Alzheimer’s or dementia due to Alzheimer’s, I frequently order an ApoE genotype. If they’re an ApoE4 carrier in the setting of MCI or dementia due to Alzheimer’s then the probability of Alzheimer’s pathology in the mix is very high.

I never order it for people who are asymptomatic, even if they have a family history. I agree with many in the field that it’s not inherently a diagnostic, it is simply a risk factor, but it’s a very rich risk factor because, if you are an ApoE4 carrier, the probability of having Alzheimer’s amyloid on your PET scan is very high. Some people are even proposing the idea of using it as a screening tool. Has this become common practice? The answer is absolutely no.

Being Patient: Once you give someone a diagnosis of Alzheimer’s dementia, do you believe the earlier you catch it the better off you are?

Marwan Sabbagh: I come from the school of thought that Alzheimer’s is a treatable disease. I am aggressive in treating my patients. I am proactive in addressing their healthcare needs, their family needs, their medication needs, their legal needs, and offering clinical trials as an added value to our clinical practice. Patients want that information. They’re seeking it. They’ve craving it. They want it from a credible source.