Talk by Local Lewy Body Dementia Support Group Member on Coping

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

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

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



Notes by Denise Dagan, Brain Support Network Volunteer

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

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

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

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

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

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

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

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

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

Question & Answer

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

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

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

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

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


Anxiety, Depression, and Apathy (in Parkinson’s) – lecture notes

Brain Support Network has another volunteer who is attending lecture, reading articles, and sharing notes. His name is Adrian Quintero. He’s also a BSN part-time employee, helping families with brain donation arrangements. (He would be happy to help your family too!)

Last Saturday, he attended a Parkinson’s support group meeting in Berkeley. The speaker was Dr. Andreea Seritan, a geriatric psychiatrist from UCSF. Her talk was about anxiety, depression, and apathy in Parkinson’s. While some of the talk was specific to Parkinson’s, most of the treatment of these two symptoms applies to those in the Brain Support Network community (Lewy body dementia, multiple system atrophy, progressive supranuclear palsy, and corticobasal degeneration).

Here are Adrian’s notes….

Notes by Adrian Quintero, Brain Support Network volunteer

Speaker: Andreea Seritan, MD, geriatric psychiatrist, UCSF Movement Disorder and Neuromodulation Center
Title of Talk: Addressing Anxiety and Depression in Parkinson’s Disease
Date: January 20, 2018, PD Active Forum

Parkinson’s Disease (PD) is a neuropsychiatric disease. Many doctors don’t realize this, and think it just affects motor skills, overlooking the psychiatric component.

Anxiety and Depression are among the most common symptoms with PD, and are important to treat as part of the disease. There is often a stigma associated with seeing a mental health provider that can make treatment of both more difficult.

Very common in people with PD. The literature on it says it’s about 40%. For Dr. Seritan’s practice it’s closer to two-thirds of the people she sees. Anxiety can present very differently person to person.

Anxiety can often precede the onset of motor symptoms.

There are physical symptoms associated with anxiety. Dr. Seritan finds people with PD are often very attuned to their bodies and are good at describing physical symptoms. Some more typical physical symptoms of anxiety include rapid heartbeat, shortness of breath, increase of tremor. More atypical symptoms, such as abdominal pain, head pressure, dizziness, may not been seen by doctors as being anxiety related.

“Wearing Off” of medication
Some people experience anxiety during the time period where there is a drop in medication between doses.
Generally happens in the late afternoon, daily, is more predictable than panic attacks that can happen out of the blue.

Generalized Anxiety Disorder
Categorized by “excessive worry” more than 6 months
Is more of a baseline of anxiety that “sits” throughout the day (vs. comes on for a period of time like wearing off)
Some of the diagnostic symptoms can be hard to distinguish from PD, such as: sleep disturbances, muscle tension, easily fatigued, hard to concentrate, restlessness

Panic Disorder
Experiencing panic attacks, which are peaks of anxiety, generally short episodes that reoccur. In between episodes there is worry about having another episode.

Social Anxiety
Performance anxiety is the part of social anxiety that Dr. Seritan sees many PD patients struggling with. Such things as giving presentations, public speaking, can be very difficult for PD patients, as there is often worry about having tremors in front of people. Especially if someone hasn’t shared their diagnosis at work, etc, there can be added stress of a fear of a visible hand tremor.

Like anxiety, depression is complicated, and experienced differently by each person affected.
In PD patients, it is less common than anxiety, literature showing about 35% of PD patients experiencing depression, and 17% diagnosed with Major Depressive Disorder.
Like anxiety, depression may precede the onset of motor symptoms associated with PD.
When untreated, depression may increase PD symptoms – worsen motor symptoms, cause cognitive deficit. Alcohol and drugs may worsen mood. With depression there is the added risk factor for suicide.

Major Depressive Episode
(5 of the 9 symptoms needed for diagnosis)
-depressed mood, lack of interest (for more than 2 weeks)
-Anhedonia – which is lack of interest in normally pleasurable activities
-Increase or decrease in sleep (again difficult because many PD patients have sleep disturbances)
-Increase or decrease in appetite/ Weight loss or gain
-Feeling guilty or worthless
-Moving slowly (symptom for general population)
-Poor concentration/ memory (people often wonder if dementia is the cause)
-Low energy
-Suicidal thoughts or behavior

Many medical conditions can affect or cause depression, such as:
Thyroid imbalances, strokes, Alzheimer’s, Parkinson’s, post heart surgery or heart attacks (especially in men), chronic pain

Some medications can affect or cause depression, such as:
Some common blood pressure meds, GERD meds, pain meds, sedatives (like Xanax), steroids (like interferon, prednisone), Anticonvulsants (which could be used for tremors)

Different from, and less studied, than depression
-not enough energy, feeling “blah”
-20-36% of new onset PD patients
-40-45% overall patients with PD
-lack of drive

Having a schedule and events where others can help hold someone accountable can help (such as Rock Steady Boxing classes, etc.)

Treatment Approaches for Anxiety and Depression
Dr. Seritan likes to start off with the non-pharmaceutical treatments first, which can include:
-exercise (such as Rock Steady Boxing, Dance for PD)
-good sleep hygiene
-minimize alcohol and drugs (including marijuana). Alcohol can aggravate depression, as well as affect balance, and disturb the sleep/wake cycle.

Other non-pharmaceutical treatments may include:

Gratitude practice
-practicing 3 weeks of journaling where every night you count 5-10 things that you’re grateful for. There is a book called “Thanks” that talks about this practice.
-Such practices have shown to increase sleep and energy, lower depression, and have no side effects!

-Believing in the ability to accomplish goals. People often lose this feeling when they are diagnosed with PD. They may also experience a loss of identity, family role, loss of income, etc.
-Re-adjust goals- Look to strategies that have worked in previous moments of crisis, those strategies will work again
-How we see ourselves is important. Sometimes we may need the help of a mental health professional to act as a mirror.

-CBT (Cognitive Behavioral Therapy)- the most well-studied therapy for anxiety and depression.
-MBI (Mindfulness Based Interventions)- paying attention to the present moment non-judgementally. There is increasing studies and evidence as to the effectiveness of such interventions. Can help memory, executive functioning and cognitive functioning.
-MBSR (Mindfulness Based Stress Reduction)- often used in medical settings, there are groups oriented around learning this
-MBCT (Mindfulness Based Cognitive Therapy)- Combination of CBT and MBSR, used at UCSF.

Treatment with Medications
In general, timing of when medications are taken is important.

-Wearing-off Issue- Dr. Seritan suggests working with doctor to adjust timing and dose of medication. If experiencing several times a day, treatment of base anxiety may be needed.
-For PD patients who had anxiety and depression before PD diagnosis, SSRIs and SNRIs can be helpful for treatment.

-used for anxiety attacks/ peaks, can help with wearing off anxiety, also used at times for restless legs
-NOT good for Generalized Anxiety Disorder, and shouldn’t be used for insomnia
-Recommends NOT taking daily, as risk for dependence
-Look at risk/benefit analysis of using
-don’t mix with alcohol or sleep-aids
-Xanax has a short half-life and can cause rebound effects. Dr. Seritan prefers medications with a longer half-life
-Some benzos can cause memory problems, and increase risk of fall
-Some can be sedating and are best taken at nighttime

-Sleep disturbance is a major symptom of anxiety, depression, and PD
-Trazadone- may cause grogginess
-Ambien- there is a dose differential for men and women
-Melatonin- natural aide, Dr. Seritan suggests taking 2 hours prior to bedtime. It can be combined with Ambien
-Gabapentin- good for anxiety, sleep, and pain. Have to modify dose so as not to cause sleeping during the day

Social/Performance Anxiety
-Beta blockers can be good used PRN. There are possible side effects of increased depression and fatigue

Apathy treatment
“Activating” antidepressants such as: Buproprion, Duloxetine, Venlafaxine
-Stimulants- Does NOT recommend Ritalin, etc. Instead Dr. Seratin treats with Modafinil or Armodafinil

Deep Brain Stimulation
-DBS is approved for PD to improve motor symptoms. There are surgery risks involved, as well as psychiatric risks. It can increase anxiety and depression, as well as impulsivity. It may decrease anxiety and depression for some people. At SFSU, they have a long evaluative process with the team.

Overall, PD is a stressor on the brain, and medications add additional stress. When treating PD patients, the dose may need to be less, as is true for older adults as well.

Pain Management treatment
-Lots of patients take cannabis for pain. May be evidence for help with insomnia. Dr. Seritan does not recommend cannabis for treatment of mood or anxiety.
-Sometimes tricyclic anti-depressants may be prescribed for pain management.
-Often patients are already on several medications. Can be helpful to see a pain specialist.

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

This article from September 2016 by a speech therapist lists several apps that augment voice volume, measure voice volume, or improve fluency of speech. Though this article addresses those with Parkinson’s Disease (PD) with these voice and speech problems, the apps certainly apply to anyone dealing with these problems. Many in the Brain Support Network community have low voice volume and poor fluency of speech. The speech therapist who authored the article emphasizes that these apps “require little cognitive effort.”

The apps mentioned include:


* Speak Up for Parkinson’s, by Sandcastle
* Decibel 10th [or Decibel X], by Skypaw Co. Ltd
* Voice Meter Pro
* Voice-o-Meter
* Sound Meter Pro


* Parkinson’s Speech Aid
* Speech Pacesetter Lite
* DAF Professional

The full article is copied below.



App-licable Ideas for Parkinson’s Disease: A growing number of apps aim to help clients with Parkinson’s disease tackle communication challenges.
By Mandie Oslund, MS, CF-SLP
The ASHA Leader, from the American Speech-Language-Hearing Association (ASHA)
September 2016, Vol. 21

Parkinson’s disease—a neurodegenerative disorder caused by a loss of dopamine-producing neurons in the basal ganglia—affects as many as one million Americans. An estimated 90 percent of those with Parkinson’s disease experience speech and voice changes that can significantly affect their quality of life. These changes can include reduced loudness, imprecise articulation, dysfluencies, hypernasality, harsh or breathy vocal quality, and prosodic abnormalities, such as rapid rate of speech, monopitch and monoloudness.

With their interactive features and easy accessibility, apps can play a major role in speech treatment to help people with this aspect of the disease. However, trying to navigate the vast sea of options can be overwhelming to many clinicians.

Here I share with you some of my favorite apps designed to improve communication outcomes for clients with Parkinson’s disease. With these key programs in your intervention toolbox, you can help these clients live more independent and connected lives.

Apps that target increased vocal loudness are an easy way to promote home practice and carryover of treatment techniques into daily communication.

Hear me now?
Apps that target increased vocal loudness are an easy way to promote home practice and carryover of treatment techniques into daily communication. My clients find that the convenience and simplicity of these apps help to build their confidence in using new techniques outside of therapy during everyday interactions. One of them is Sandcastle’s Speak Up for Parkinson’s app (free and available for iOS devices), created by the Northwest Parkinson’s Foundation. This app allows users to practice voice exercises daily.

The app aims to increase users’ vocal amplitude in variable speaking activities involving 1) words and phrases and 2) reading and conversation to promote carryover of vocal techniques for longer durations. Both activities provide biofeedback with real-time volume monitoring with a predefined “Target Zone.”

The app provides a video review to promote recalibration of vocal loudness and self-monitoring skills. It also lists speaking tips and compensatory techniques to help enhance functional communication in daily life.

Another app that targets hypophonia in Parkinson’s disease is Decibel 10th [or Decibel X], free for iOS and for Android from Skypaw Co. Ltd. This app turns your iOS device into a professional sound meter that measures noise levels and displays the data in clear digital and analog layouts.

Two more apps, Voice Meter Pro ($3.99 for iOS) and Voice-o-Meter ($0.99 for iOS), allow users to monitor the volume of their voice using a visual sound level meter. Users can adjust the sensitivity to include an acceptable loudness range that best suits their current level of functioning and outcome goals.

What about Android users? They can measure their volume levels using Sound Meter Pro, a free app that displays measure data in decibels as related to common objects and situations (such as quiet library, alarm clocks or moderate rainfall).

Focus on fluency
Altered auditory feedback (AAF) can have long-term beneficial effects on intelligibility in a subset of people with Parkinson’s disease, according to a 2010 study by Anja Lowit, Corinne Dobinson, Claire Timmins, Peter Howell and Bernd Kröger. However, device usability and acceptability are significant limitations to AAF effectiveness. Fortunately, several apps address these concerns and allow clients to use AAF on a more familiar and accessible platform.

Parkinson’s Speech Aid (free for iOS) allows users to speak in unison with themselves with a slight delay and change in pitch, thereby reducing their rate of speech and number of repetitions. It has several user-friendly features, including a recording option for users to track their progress.

Speech Pacesetter Lite is another free app for iOS that allows users to read the text and pace their reading with the help of a visual cue and optional auditory metronome cue. It is designed to target imprecise articulation and fast speech rate in people with acquired neurological disorders.

Lastly, DAF Professional ($4.99 for iOS and $2.99 for Android) is an easy and convenient tool to help people speak more slowly when hearing their own speech in an altered manner. Although originally designed for people who stutter, the app has since become a well-established therapy tool for individuals with various communication disorders.

Try it
While there are wide-ranging apps available for clients with Parkinson’s disease, the apps listed here are unique in that they require little cognitive effort and can be customized to suit individual needs and intervention goals. With the right app, smartphones can enhance your treatment and improve intervention outcomes for people with Parkinson’s disease.

Seven tips for (Parkinson’s) caregivers

Recently I came across this article of tips for Parkinson’s caregivers. It was written in 2015 by a social worker with the Muhammad Ali Parkinson Center (MAPC) in Phoenix. Except for suggesting that readers contact a social worker at the MAPC, there is nothing Parkinson’s-specific about these tips.

The seven tips include:

1. Don’t compare yourself to someone else.
2. Evaluate your self-talk.
3. You do not have to do everything yourself.
4. Listen to those who know you best.
5. If you recognize that there needs to be a change, act on it.
6. Seek help from others to make a plan.
7. Be agreeable to change your plan.


Tips for the Caregiver
Nancy Bivins, LMSW
Southwest Parkinson News
Winter 2015

Following the diagnosis of Parkinson’s disease, as the care partner, you will find that your role changes over time. You may, for instance, need to assume the task of writing checks if your loved one has a tremor and writing is difficult. Taking on that responsibility is relatively easy and life goes on with little or no lifestyle disruptions.

As the disease progresses, the amount of assistance that is needed will also change. You will find that as needs increase, responsibilities and tasks are shifted to the most logical person, you. You may be the spouse, adult child, significant other or friend, but whatever your relationship, you are the most important person in the life of the person living with PD (PLWP).

This shifting of responsibilities is a gradual process and it is easy to understand that over time you may become overwhelmed without realizing what is happening to you. If you find that you are having feelings of needing help to manage, please consider the following tips.

1. Don’t compare yourself to someone else. We certainly can learn techniques and strategies to cope with stress, but keep in mind that we are all wired differently. Some are naturally nurturing and patient, while others find it difficult. Also, care partners may have health issues of their own. Just because others are managing in a particular way does not mean that you must do the same.

2. Evaluate your self-talk. If you find yourself thinking or saying phrases like, “I’m exhausted,” or “I can’t go another day,” it is time to make some changes. Listen to what you are saying and then spend some time to understand what this means for you specifically.

3. You do not have to do everything yourself. Identify what needs to be done to keep your household running and then ask yourself these questions: a) Does it really need to be done? b) Am I the only person who can do it? c) Can someone else do an acceptable job? You may decide that the responsibility that has been tended to weekly may fare well if done only once monthly, or that the job could be done by someone you hired, or perhaps a friend could help. Remember, it is permissible to enlist the help of others.

4. Listen to those who know you best. If your family and/or friends are expressing concern for your wellbeing because they believe that you do not have adequate relief from your physical, emotional and mental demands, it is wise to carefully consider their perspective. There is a saying, “it is difficult to see the picture when you are part of the frame.” Sometimes those closest to you can have a better understanding of your needs then you, because you are so close to the situation. If others are saying that you look tired and stressed, take their concern seriously, don’t just
discount them.

5. If you recognize that there needs to be a change, act on it. Although you and others may know that there needs to be a change it is easy to delay action, because you don’t know what to do or where to start. Keep reading.

6. Seek help from others to make a plan. There is no such thing as a “Parkinson’s Plan.” Your situation is unique because you and your loved one are unique. The plan for you may be as simple as a leisurely walk and a drink in a coffee shop to relax and recharge. Perhaps a short getaway over a long weekend for rest and relaxation is adequate. However, if a more complex intervention is needed a meeting with the social worker at the Muhammad Ali Parkinson Center (MAPC) is only a call away. The social worker is available to help you and your loved one develop a plan that is specific to you. You may be at the “fact finding” phase of your plan, which involves talking about your preferences, learning about different care options, and understanding the differences in cost.

For many people, the only thought that comes to mind when they hear the words “care options,” is that of people sitting in wheelchairs lining a long hall. Since the population is aging, many different living possibilities now exist, along with many home care agencies that can augment care in many ways from taking your loved on an outing to preparing a meal. All of this for the purpose of keeping your loved one safe, as active as possible and socially engaged.

7. Be agreeable to change your plan. Most likely you will change your plan more than once and possibly frequently. Be flexible, open to continuous evaluation and willing to change as needed. Remember, you cannot steer a parked car.

Parkinson’s group meetings in January that may be of interest to Brain Support Network members

Happy New Year!

Some Northern and Central California Parkinson’s Disease (PD) support groups
have a guest speaker or program planned for January 2018.  I’ve listed below the meetings that may be of interest to Brain Support Network members.

In particular, I’d recommend any of the talks by Dr. Salima Brillman euphemistically referred to as “PD – more than motor symptoms.”  This refers to hallucinations and delusions.  This talk is sponsored by Acadia Pharmaceuticals, the maker of Nuplazid.  These talks may be of interest to our Lewy body dementia group members.

And I’d recommend the talk by Dr. Lin Zhang on hallucinations and delusions in Sacramento.

The talk in Fresno by Dr. Rafael Zuzuarregui on sleep and Parkinson’s would certainly have relevance to those with multiple system atrophy and Lewy body dementia.

The talk in Berkeley by Dr. Andreea Seritan on anxiety and depression in Parkinson’s will likely be worthwhile.  A fee is expected at that meeting.

Finally, our BSN member, Bob Wolf, is speaking in Walnut Creek on January 20th about his wife’s journey with Lewy body dementia.  He wrote a wonderful book called “Honey, I Sold the Red Cadillac!”

Do you need to know the support group meeting location, day/time,
contact info, and how to RSVP if required?  Please refer to the Stanford
Parkinson’s website for all Northern and Central California support groups:

Enjoy the rain but stay dry,


Wednesday, 1/3, 1:30-3pm
Guest Speaker:  Erica Schultheis, Butte Home Health and Hospice
RSVP?:  No.

Half Moon Bay
Friday, 1/5, 1-2pm
Guest Speaker:  Chase Montara, manager, Adult Day Healthcare Program, Half Moon Bay Senior Center
Topic:  Spirituality and health challenges
RSVP?:  No.

Yuba City (Tri-Counties)
Monday, 1/8, 1-2pm
Guest Speaker:  Jennifer Kim, OT, occupational therapist, Fountains Skilled Nursing and Physical Rehab Center
Topic:  Adaptive equipment and strategies for successful self-feeding
RSVP?:  No.

Union City/Mark Green Sports Center
Tuesday, 1/9, 2:45-4pm
Guest Speaker:  Michael Galvan, Community Resources for Independent Living (CRIL)
Topic:  Assistive devices to help with PD
RSVP?:  No.

Palo Alto Young Onset Parkinson’s
Location:  Stanford Hospital H3210 (third floor)  (Jan. meeting only)
Tuesday, 1/9, 6:30-8pm
Guest Speaker:  Joyce Liao, MD, neuro-ophthalmologist, Stanford
Topic:  Vision and reading difficulties in PD
RSVP?:  Yes, if this is your first time attending.  Please RSVSP to
Martha Gardner, group leader, at least one day in advance

Menlo Park/Little House  (New meeting location!  No longer at Avenidas
in Palo Alto.)
Wednesday, 1/10, 2-3:30pm
Guest Speaker:  Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic:  Current Parkinson’s treatments and what’s in the pipeline
RSVP?:  No.

Robin’s Note:  This is NOT focused on hallucinations and delusions but they will certainly be addressed.

Sonoma/Vintage House
Thursday, 1/11, 10-11am
Guest Speaker:  Gillian Galligan, executive neuroscience sales specialist, Acadia Pharmaceuticals
Topic:  Beyond motor symptoms – overview and new treatment option for hallucinations and delusions
RSVP?:  No.

Thursday, 1/11, 1:30-3pm
Guest Speakers:  Kevin Chiong and Nanci Shaddy
Topic:  Delay the Disease (exercise program)
RSVP?:  No.

Friday, 1/12, 1-3:30pm
Discussion Topic:  Communication and relationships
RSVP?:  No.

Saturday, 1/13, 10am-noon
Guest Speaker:  Rafael Zuzuarregui, MD, movement disorders specialist,
UCSF Fresno
Topic:  Parkinson’s and sleep
RSVP?:  No.

Saturday, 1/13, 10am-noon
Guest Speaker:  Salima Brillman, MD, movement disorders specialist, private practice, Menlo Park
Topic:  Parkinson’s – more than motor symptoms
RSVP?:  No.

San Jose/The Villages
Tuesday, 1/16, 10am-noon, Cribari Auditorium
Guest Presenters:  Mwezo and Jane, Kujiweza
Program: Interactive workshop on how to fall, how to get up, and fall
prevention.  Wear comfortable clothing.
RSVP?:  Yes, required if you are not a resident of The Villages. Contact
Alice Pratte, group leader, 408-223-8033, at least 24 hours in advance
to obtain community access.

Sacramento/Arden Arcade
Thursday, 1/18, 10am-noon
Guest Speaker:  Lin Zhang, MD, PhD, movement disorder specialist, UC Davis
Topic:  Hallucinations and delusions connected with PD
RSVP?:  No.

Thursday, 1/18, 1-3pm
Guest Speaker:  Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic:  PD – more than motor symptoms
RSVP?:  No.

Walnut Creek (Mt. Diablo)
Saturday, 1/20, 9am-noon  (speakers 10:45am-11:45am)
Guest Speaker #1:  Lori Santos, Rock Steady Boxing (RSB) East Bay
Topic #1:  Fighting back against PD with RSB
Guest Speaker #2:  Bob Wolf, group member and author of “Honey, I Sold the Cadillac”
Topic #2:  Bob’s journey with Lewy body dementia
RSVP?:  No.

Saturday, 1/20, 10:30am-noon
Guest Speaker:  Andreea Seritan, MD, geriatric psychiatrist, UCSF
Topic:  Addressing anxiety and depression in PD
RSVP?:  Yes, required to PDActive, 510-832-8029
Fee:  $10 (suggested)

Mill Valley (Marin County)
Friday, 1/26, 1-3pm (speaker is from 1-2pm)
Guest Speaker:  Sandra Shefrin, MD, movement disorder specialist, private practice, Mill Valley
RSVP?:  No.

Questions to ask a potential agency caregiver

The Parkinson Foundation ( has a useful worksheet on questions to ask an agency caregiver during the hiring process.  Though the worksheet is published by the Parkinson Foundation, there is nothing Parkinson’s-specific about the worksheet or questions.

As the worksheet says:

Hiring someone to take care of your loved one is a decision that must be made with careful consideration. There are many questions you can ask to make sure the agency can meet your needs, as well as questions to make sure the agency and its employees are competent and have the proper training,
licensing and insurance.

Here’s a link to the worksheet:



Important Research – First Genome-Wide Association Study in DLB

This is a good summary from Alzforum about research published last Friday out of two of the world’s largest brain banks — the University College London and the Mayo Clinic Jacksonville.  Researchers genotyped 1743 patients — 1324 of those patients had autopsy-confirmed dementia with Lewy bodies.  They were looking for genome-wide associations in dementia with Lewy bodies (DLB).  Basically, they were trying to answer the question — how much of DLB can be explained by genetics?

This breakthrough research was made possible through brain donation.  Our nonprofit, Brain Support Network, has helped over 450 families with brain donation.  All of those families we’ve helped where the diagnosis was confirmed DLB were involved in this important research!  Please let us know if this is interest to your family and we can help make advance arrangements.

“The researchers calculated that, overall, genetic variants account for about 36 percent of the risk for DLB in this sample. This is roughly the same as for PD, but much less than that for late-onset AD.”  Previously-known associations were confirmed — APOE, SNCA (synuclein), and GBA.  “The APOE locus emerged as the most strongly associated with DLB, with the SNCA gene for α-synuclein next. Interestingly, though, the particular SNCA SNPs were different from the ones associated with PD.”  A new loci was discovered — CNTN1.

The study was funded by two UK organizations — Alzheimer’s Society and Lewy Body Society.

Here’s a link to the Alzforum summary:

First Genome-Wide Association Study of Dementia with Lewy Bodies
15 Dec 2017

And MedicalXpress had a good summary of the research as well.  Here’s a link to that as well:

Dementia with Lewy bodies: Unique genetic profile identified
December 15, 2017


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

The Parkinson Voice Project ( 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.

“Cannabis and Parkinson’s Disease” – Lecture Notes

Northwest Parkinson’s Foundation ( 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

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

Resources: 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.


“Across the Spectrum: PD and Other Movement Disorders” (LBD, MSA, and PSP) – Notes

This webinar from the Michael J. Fox Foundation from 2014 gives a very broad overview of several movement disorders *besides* Parkinson’s Disease (PD).  Much of the webinar focuses on Lewy body dementia (LBD) though there is some discussion of multiple system atrophy (MSA) and a bit of discussion of progressive supranuclear palsy (PSP) — as these three diseases are often confused for each other and for Parkinson’s.  And the webinar includes a terrific discussion with two physicians about research into these disorders.

Dave Iverson is the host of the hour-long webinar.  There are three speakers:
* Alexander, who has a diagnosis Lewy body dementia
* Dr. David Standaert, movement disorder specialist
* Dr. Susan Bressman, neurologistThere was only one slide for the talk, which is:

What do Movement Disorders Look Like?
* Lou Gehrig’s Disease (ALS) – Gradual loss of muscle control, muscles atrophy
* Dystonia – Muscle spasms and contractions; repetitive, twisting movements
* Essential Tremor – Rhythmic shaking, most often in hands; most common movement disorder
* Lewy Body Dementia (LBD) – Cognitive impairment; hallucinations; spontaneous parkinsonism
* Multiple Sclerosis (MS) – Vision difficulties; balance problems; numbness and muscle weakness; thinking and memory problems
* Multiple System Atrophy (MSA) – Parkinson’s-like motor symptoms; more severe autonomic dysfunction
* Progressive Supranuclear Palsy (PSP) – Gait and balance problems; inability to focus eyes; cognitive impairment

Here’s a link to the recording:

Across the Spectrum: Parkinson’s and other Movement Disorders
Michael J. Fox Foundation Webinar
March 20, 2014

Brain Support Network uber-volunteer Denise Dagan recently listened to the recording and shared notes below.


Notes by Denise Dagan, Brain Support Network VolunteerAcross the Spectrum: Parkinson’s and other Movement Disorders
Michael J. Fox Foundation Webinar

March 20, 2014


Alexander explained that he went 20 years before getting an accurate diagnosis of LBD.  One symptom was significant fatigue, misdiagnosed as Chronic Fatigue Syndrome.  Another was losing his sense of smell.  10-15 years into these strange symptoms was REM Sleep Behavior Disorder, which has since been closely linked to LBD, but at the time was not.  Now, these things are considered early warning signs of PD, but at the time doctors didn’t suspect because he still doesn’t have any significant motor or gait symptoms.  He was misdiagnosed with Alzheimer’s even in the presence of hallucination and perceptual symptoms.  Only when he did his own research was he convinced he did not have Alzheimer’s, but LBD.  He discovered a neurologist as a forerunner in the field of LBD and flew to him to confirm that diagnosis.  At the time he was surprised at the ignorance of neurologists about LBD.  He has since found they are most curious to learn about it.

Alexander is working on a humorous monologue called “Braking for Alligators.”  He hallucinated, and braked for, an alligator in Massachusetts.  He believes humor is very powerful in taking some of the weight off the experience of having such a serious diagnosis with disturbing symptoms, like hallucinations.  Humor is something he can still offer others.

Dr. David Standaert is not surprised that 20 years ago doctors didn’t use the term LBD.  The name was coined in the late 1980s and even in the early 90s they knew very little about it.  It would have been called atypical Alzheimer’s or atypical dementia until the late 90s when they were able to find Lewy bodies in the brain and understand their significance in this neurodenegerative disorder.

Lewy bodies are an abnormal structure found in the dopaminergic neurons in Parkinson’s disease.  In the late 90s, researchers discovered the protein alpha synuclein, which is a major component of Lewy bodies.  That opened the door in looking across the brain.  Researchers discovered that those people who had dementia and other associated symptoms Alexander described (including hallucinations) had these Lewy bodies all over the brain.  These Lewy bodies are hard to see unless you stain for alpha synuclein, then they are obvious.  LBD doesn’t typically have forgetfulness, like Alzheimer’s.

Dr. Susan Bressman says the abnormally mis-folded, or clumping proteins are a common phenomenon of other neurodegenerative disorders (MSA, PSP), as well.

Dr. Standaert believes that they will ultimately find that Parkinson’s Disease (PD) and LBD are the same condition (the basic disease process is the same in these two disorders) manifesting in different ways.  Dr. Bressman agrees.

Alexander has participated in research at the Mayo Clinic.  The DAT scan shows the dopamine deficit even though he doesn’t have typical movement symptoms.  Dr. Bressman suggests the area of the brain affected determines what symptoms manifest so Alexander has RBD, loss of smell, hallucinations (pre-motor features).  Alexander does take some Neupro, which, at a higher dose, worsened his hallucinations.  He still takes a low dose.


Dr. Bressman says MSA can be clinically difficult to distinguish from PD.  One form has a cerebellar effect with more unsteadiness and uncoordination symptoms.  There is also a Parkinson’s form with really does mimic Parkinson’s.  What helps distinguish it from PD are problems with autonomic issues like bladder and blood pressure control very early in the progression of the disease.  It can take years to feel confident which diagnosis is correct.  There is a lot of overlap in the pathology, but in MSA, instead of the neurons, alpha synuclein pathology is in the glia supporting cell.  The glia cells in the brain have inclusions.  Treatment overlaps as well.

Dr. Standaert agrees with Dr. Bressman.  There’s no test to distinguish between MSA and PD during life.  People are working on one.  As a neurologist follows a patient over years symptoms become more distinct, like when motor symptoms do not respond well to PD medications, and when there are a lot of early autonomic symptoms.  In MSA there are very few cognitive problems.  Under a microscope, you would not mistake MSA for PD.  It is still alpha synuclein, but it is in the glia in MSA rather than in the neurons in PD.

There is some loss of dopamine function in MSA because the Parkinsonian form does damage the substantial nigra, but the appearance on the DAT scan is somewhat different because in MSA you can see the damage is still somewhat even, whereas in PD the damage is asymmetric.  So, the DAT scan can give you a clue, but it is not a definitive test to separate the two.

Dr. Bressman says there are papers suggesting an MRI can help to distinguish between the two, but there is a lot of debate about that.  Doctors will sometimes send patients for a glucose PET scan to use the glucose metabolic pattern to distinguish between typical Parkinson’s and more of an atypical parkinsonism of some sort.  The definitive diagnostic method is really to follow patients over time and watch the manifestation of symptoms, responsiveness to medications, and putting all the pieces together.


Dave Iverson asked the doctors what can be learned about one of these neurodegenerative disorders as we learn about another of them.  Dr. Standaert says they are all age-associated diseases.  While young people do, occasionally, develop neurodegenerative diseases they develop after age 50, 60, 70 and beyond so age is a trigger.  They are all also associated with the development of abnormal proteins.  Each disorder is a different protein (misfolding protein), but at the core there are important commonalities.

Dave Iverson asked if there is an important reason to pursue the right diagnosis.  Dr. Bressman says patients really want to know what it is.  Knowledge is power, and getting the right diagnosis can affect getting the right treatment.  When you get to MSA, PSP, CBD at this point the treatment are empiric for the most part.  It is important in terms of prognosis, family counseling, clinical trials, and ultimately for targeted treatments, when those become available.  We think of PD as being a homogenous entity, but there are subtypes, early onset, those with more or less gait disorder.  So, on the one hand we lump them together, and on the other hand we want to customize treatment to each individual’s greatest difficulties.

Dave Iverson asks if essential tremor can progress to PD.  Dr. Standaert says sometimes doctors will diagnose essential tremor (often symmetrical, runs in families, and is bilateral, so not PD) and the patient will return with real PD symptoms.  People with essential tremor tend to be diagnosed with PD more frequently with PD than the general population.  They thought this was due to misdiagnosis as essential tremor when it is incipient PD.  DAT scan can help with this teasing out between these two conditions.  Dr. Bressman totally agrees.  This lingering question of whether essential tremor increases risk of developing PD, or is essential so common some percentage will go on to develop PD in the same numbers of the general population, or are some number of those diagnosed with PD misdiagnosed until the PD symptoms become obvious.  That’s why we have the DAT scan.  That’s what it is FDA approved for, to distinguish between these conditions.  Dr. Standaert says if there is a mechanistic or genetic connection between essential tremor and PD, they haven’t discovered it, yet.

Dave Iverson asked if it is unusual for someone to have PD and then ALS, for example.  Dr. Bressman says it is an unlikely but now that we have different genetic subtypes, looking at ALS through a genetics lens, it is a heterogeneous disorder and some people who have motor-neuron disorder can have parkinsonism or a PSP-like picture.  So, the motor neuron picture is getting more complicated as we’re understanding the genetics.  She has had patients with motor-neuron disease and parkinsonism who have turned out to have one of these genetic subtypes.  It’s rare.  They are separate disorders but in some subtypes you can have the two together.

Dave Iverson asked if the LRRK2 mutation that causes the most common genetic form of PD can also lead to other movement disorders.  Dr. Standaert says in families where the original LRRK2 gene was discovered as a cause of PD (2-4% of cases in the US) some individuals had MSA or PSP (tau) -looking pathology.  So there were other forms of neurodegenerative disease in those families.  This indicates LRRK2 can not only trigger PD, but other forms of neurodegenerative diseases.  Researchers wonder about LRRK2 — does something happen far upstream, modulating the response of the brain to these mis-folded proteins, perhaps modulating the inflammatory response that follows them.  So, is it a general kind of gene that can enable a number of different pathologies?

Dr. Bressman has been looking for gene carriers that have these other neurodegenerative disorders or other phenotypes, but hasn’t found that so far.   Family members who are gene carriers are either normal (healthy) or have PD, although it is classic PD.  There is more of a gait/balance issue than a tremor.  Some have a classic rest tremor.  They haven’t identified motor-neuron disease or PSP or other neurologic pictures in these families.  Only 28-35% of people who have this gene will develop PD before age 80.  This seems to lead to a connection between a link between the gene and some upstream event, or some sort of exposure to lead to PD.

Dr. Standaert says most disease process are a combination between genetics and environment.  We just don’t understand this enough in PD.

Dave Iverson asked Alexander if he has autonomic symptoms (bladder, constipation, blood pressure, etc.).  Alexander says yes, he didn’t realize that they were associated to his illness until the doctor confirming LBD started asking him about some autonomic issues, specifically.  Then he knew all his symptoms were related.

Dave Iverson asked Dr. Bressman if these autonomic symptoms cut across all these disorders?  She says certainly PD and MSA and can be the most debilitating feature (like low blood pressure, and bladder issues).

Alexander comments (and the doctors both agree) that proper diagnosis is important, especially for those with LBD, because word needs to get out to doctors, patients and families to prevent patients being given neuroleptics (such as Haldol) which are powerful blockers of the dopamine receptors in the brain.  These types of drugs are used widely in medicine when someone has hallucinations (common in LBD).  If you give this to someone with LBD, even though they may not have symptoms that manifest as parkinsonian/movement related, they can become rigid and stiff for weeks.

Dave Iverson asked what is the difference in prognosis between these different disorders.  Alexander says his doctor says, in his experience, the rate at which the initial condition unfolds is similar to the rate at which it further progresses.  If symptoms come on gradually, it is likely to continue to progress just as slowly and is unlikely to make sharp downturns.  That is good news for him as his took so long to diagnose.

Dr. Standaert agrees, although no two cases are exactly the same.  The pace of one’s disease progression doesn’t change a lot over time.  These neurodegenerative disorders progress at different rates from each other, ALS tends to progress much more rapidly than others.

Dr. Bressman agrees.  There is no crystal ball because something new can happen as one ages.

Dave Iverson asked Dr. Bressman to talk about dystonia.  She says dystonia is on the list separately because a not insignificant percentage of PD, particularly with early onset, can be caused by the disease itself or medication induced.  How you treat it depends on what you think is the cause (peak dose, end of dose, early morning) so you may adjust the timing, Amantadine, or Entacapone.  Ultimately, the best treatment will be better dopaminergic meds, DBS or a cure.

Dave Iverson asked if exercise helps in all of these disorders as it does for PD.  Dr. Standaert thinks exercise is helpful in all of them, but in PSP there is a tremendous issue with balance and falling.  MS is worsened by overheating, so be careful with that.  Apply the right kind of exercise for safety to each disorder.  Alexander says he only recently realized exercise is helpful for him.

Dave Iverson asked if there is a connection in both MS and ALS.  Dr. Standaert says both have abnormal proteins, but the part of the brain attacked is different.  MS is quite different as it is an immune attack upon the brain, but the commonality is the recent recognition of the inflammation response between all these disorders.  Otherwise, the cause, diagnosis, and management is quite different.

Dave Iverson asks about the more drastic drop in blood pressure between in MSA than in PD.  Dr. Bressman says that is true.  The treatments are very similar, but too many patients don’t talk about it.  If they are feeling faint they should tell their doctor and have regular blood pressure checks to discuss how to manage it.  Its dangerous because it can lead to falling, but there are a lot of treatment options.  Some people are even still on old blood pressure meds to lower blood pressure from cardiologists prior to adding a neurodegenerative disorder, and those aren’t needed anymore.

Dave Iverson asks Dr. Bressman if she is hopeful that connections between research will lead to treatments across all these disorders.  She is quite hopeful and the research is broad and applicable to not only insight into PD, but other disorders with respect to the search for a cure or better uses of the treatments they already have.

Dave Iverson asks Dr. Standaert if he things that is encouraging for pharmaceutical companies.  He says the more they learn about these diseases the more they realized there are shared commonalities of attack to research treatments.  Success in one will really open the door to success in others.  The rare disorders may not get the funding for research, but will benefit from those getting funding.  PD may not be just one condition because there are more than one gene that can trigger it, and a multitude of symptoms.  Dr. Bressman says one type of ALS may share a treatment option with some type of PD.

Dave Iverson asks Alexander to close the conversation.  Alexander says he has found with respect to his hallucinations is to use them as creative prompts for writing poetry and other creative works.  That is always potentially possible and there is more attention to this in the dementia care community.