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.

Robin


www.barrowneuro.org/assets/winter-2015.pdf

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:

http://parkinsons.stanford.edu/support_groups.html

Enjoy the rain but stay dry,
Robin

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

Chico
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.

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

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

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

Pleasanton
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.

Salinas
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.

Berkeley
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 (parkinson.org) 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:

www.parkinson.org/sites/default/files/CaringandCoping_WORKSHEETS_Questions%20to%20Ask%20an%20Agency%20Caregiver_form.pdf

Robin

 

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:

www.alzforum.org/news/research-news/first-genome-wide-association-study-dementia-lewy-bodies

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

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

medicalxpress.com/news/2017-12-dementia-lewy-bodies-unique-genetic.html

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

Robin

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

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

You can find the recording here:

www.parkinsonvoiceproject.org/ShowContent.aspx?i=1844

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.

Robin
————————-

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.

Disability
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.

QUESTION AND ANSWER

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 (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

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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.

 

“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:

www.youtube.com/watch?v=v27n19kx4gA&list=PLkPIhQnN7cN6dAJZ5K5zQzY84btUTLo_C&index=11

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.

Robin

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

March 20, 2014

LEWY BODY DEMENTIA

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.

MULTIPLE SYSTEM ATROPHY

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.

QUESTION AND ANSWER

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.

“PD and Psychosis” – Q&A Webinar Notes

Northwest Parkinson’s Foundation (nwpf.org) hosts a webinar series.  Today (Dec 4, 2017), the webinar was about “PD and Psychosis.”  It was an open-ended question-and-answer session.  The “answerer” of the questions was Amanda Herges, PhD, a licensed clinical psychologist specializing in rehabilitation and neuropsychology at Evergreenhealth Medical Center in Kirkland, WA.  She answered questions emailed to the organizers in advance and live on these topics — anxiety, memory loss, cognitive changes, aggression, hallucinations and delusions in those with Parkinson’s Disease.

Brain Support Network volunteer Denise Dagan took notes and shared them below.

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Northwest Parkinson’s Foundation
Webinar – PD and Psychosis
December 4, 2017
Guest:  Amanda Herges, PhD, clinical neurologist

Q. Man with Parkinson’s (PD) has periods of intense anxiety.

A. It is related to some of the pathways related to psychosis, and is a typical PD symptom.  25-50% of those w/PD will have anxiety as a symptom.  It is more common in those who had mood issues before their PD diagnosis.  Most commonly patients will report increase of anxiety as their Parkinson’s medication  wears off between dosing, or while navigating in public, especially approaching a narrowing of their pathway, like going through doorways.  Dr. Herges recommends tracking these symptoms, like you do your PD symptoms (time, situation, when were last medications, etc.) and talk with your neurologist if it is affecting your lifestyle.  A therapist can help you learn to live with anxiety, too.

Q. Women with PD noticed short term memory deficit.  How can I live with this?

A. One-third of those w/PD will notice short term memory loss at some point.  Short term memory issues in PD are very different from short term memory issues in Alzheimer’s.  Dr. Herges suggests using electronic devices to help remember things.  If you don’t use electronics, keep a calendar, use notebooks, post-its, etc. to keep track of things.  Do one thing at t time.  Attention problems are also common in PD, so it is easy to become distracted.  Keep distractions to a minimum.  Ask friends and family to help you remember and/or stay on task.

Q. Man asks if PD progression can be projected from a series of MRIs taken over time?

A. MRI doesn’t show PD pathology.  Your neurologist may use a PET scan to image PD.  Taking images over time is not recommended.  They don’t show progression and they are expensive.  Clinical exam is a better assessment for physical symptoms.  Repeated neuropsychological testing will show cognitive decline.

Q. Man asks what is punding and how are its symptoms controlled.  Can this behavior be modified by medication?

A. Punding is repetitive sorting of materials.  Often goes unnoticed if it is related to a long time hobby.  Example: cutting pictures out of magazines and used to use them for art projects, but no longer uses them, just obsessive about cutting them out and sorting them.

Punding can be controlled with medication, but if the behavior is not harmful or interfering with quality of life, medication is not necessary.  The more medications you take, the more the likelihood of adverse medication interactions or medication mistakes so sometimes it is better to manage behavior without medications.  Talk with your doctor about your individual situation.

Q. How are hallucinations impacted by PD medications?

A. Early in PD if you have hallucinations or illusions (peripheral fleeting impression of bugs, shadows out of the corner of your eye, etc.), they can be caused by Sinemet, Requip or Mirapax.  Recent research shows most hallucinations or illusions cannot be accounted for by medications.  True hallucinations usually occur later in progression of PD or the diagnosis is not PD, but Lewy Body Dementia (LBD).

Q. Woman asks if memory loss always comes with cognitive decline?

A. Depends on what you are calling cognitive decline.  Most people become concerned, when they have a memory change, that it will be precipitous.  Memory change can be disease progression but there are many causes of memory change, including changes in medications that cause sleepiness or fatigue which affects memory.  Illness, even just a cold, or dehydration, and loss of sleep can all cause memory loss.  Thyroid issues, low vitamin B12, depression can also affect memory.  Talk with your doctor whenever you have memory loss.

Q. Woman’s mom has had PD for 10 years and recently is having hallucinations (mostly animals) and long-term memory issues/delusion (believing her dead father was coming to Thanksgiving dinner).

A. With respect to her hallucinations, regardless of the cause, always discuss with your neurologist to determine the impact of your PD meds on the hallucinations.  An adjustment to your meds should help, but it is a process of rebalancing your medications vs symptoms control.  Adding an atypical antipsychotic (Seroquel, Quetiapine) can help treat hallucinations.

Also try changing your home environment:
– Keep rooms well lit, especially in the late afternoon and into the evening so shadows don’t contribute to frequency of hallucinations.
– Let the person having hallucinations keep a flashlight handy at night so they can take a look to see if there is really something there in the dark.
– Reduce patterned fabric in upholstery and artwork.  Prints and patterns contribute to visual discrepancies which can increase frequency of hallucinations.
– Cover mirrors or other reflective surfaces that can cause visual distortions and increase frequency of hallucinations.

With respect to her delusions or serious memory impairment (forgetting father died), it depends on the emotional state of the person with PD or LBD.  Challenging memory impairment can cause more stress and depression.  Sometimes, it is best to ignore these types of comments.

Q. A person with PD since 2006 and taking Sinemet is hallucinating.

A. Talk to your neurologist because it was thought hallucinations were part of taking carbidopa/levodopa, but only your neurologist can tell what’s going on with you.  See the prior answer for living with hallucinations.

Q. What is the difference between hallucinations and delusions?

A. Hallucinations is visual disturbance caused by changes in the chemistry and function of the brain.  In PD it is usually visual, sometimes people who speak, so that’s also auditory.  Usually they see nonthreatening people or animals.

Delusions are beliefs that have no basis in fact.  Sometime they are difficult to detect because they are not completely implausible.  Person experiencing the delusion is often persistent in their belief.  Delusions can be paranoia over finances, especially in those who have been business people, or money handlers (head of household, etc.).  A delusion can be a belief their spouse is having an affair or that they are being persecuted (trying to put me in a home).  Hyper-religeousity, compulsive spending or donating, gambling, etc. can also stem from delusions.

Dr. Herges recommends not trying to handle delusions on your own when they begin to affect quality of life, especially loss of trust, or finances in the family.

Q. Please describe a neuropsychological evaluation.

A. Assessment or evaluation is performed by a PhD with training in PD.  They use standardized tests to see how well you perform on memory, attention, processing speed, executive functioning against normal controls of the same age.  The test determines your strengths and weaknesses on these skills and the doctor makes recommendations for functioning with your unique skills and deficits.

These assessments are required pre-DBS surgery.  DBS is contra-indicated in situations where the DBS candidate already suffers severe cognitive deficits because DBS can worsen cognition and make it more difficult to function.

Assessment may also include mood and depressive symptoms, hallucinations, delusions, etc., if applicable.

Patients fill out a questionnaire beforehand, followed by 1-1.5 hour interview of the patient and caregiver by the doctor, then the standardized testing with breaks so exhaustion doesn’t impact performance on the test.  Testing could be broken into more than one day.  Afterward, Dr. Herges scores all tests, writes up a report of her findings and asks the patient back for a review of that report and shares recommendations for living well with deficits and suggestions for playing on strengths.

Q. Man asks if Dr. Herges sees increased aggression in those with PD and meds to help with this?

A. No, people w/PD have the opposite of aggression.  They are more likely to experience apathy (lack of initiation and the brain’s inability to start moving).

Aggression is more likely in those who have hallucinations and/or delusions with cognitive impairment, loss of insight, investment in their delusions, and loss of impulsive behaviors.
Talk to your neurologist if you are experiencing aggressive behavior to see what can be done for everyone’s safety.

If you are in a rural area where your neurologist is more of a generalist than a Parkinson’s specialist, you may be referred to a psychiatrist.  If so, make sure your neurologist, psychiatrist and pharmacist are communicating about medications prescribed for these behaviors.

Q. Suggestions for when delusions are causing agitation to the point of threatening safety?

A. 911 or your local crisis service (contact your police department for the contact number).

Stop engaging them immediately and call for help if someone becomes violent.  Before they are discharged from custody a plan will be put in place to ensure everyone’s safety.  Counseling to redevelop trust among family members may be necessary.  Sometimes, the person cannot return to the same environment if safety cannot be ensured.

Q. Are neuropsychologist evaluations covered by Medicare?

A. Yes, if it is deemed medically necessary and prescribed by a doctor for memory loss or cognitive disorder it will be covered.  If your doctor orders it to determine your ability to work, for example, it will not be covered.

Other insurances (not Medicare) are totally determined by what policy you have.  Most insurances cover at least a limited number of visits and the doctor needs to fit an evaluation and treatment into that maximum number of visits covered by your policy.  These evaluations/assessments are quite expensive to find out after the fact that you are not covered, or your coverage is limited to 75% vs 90%.  You should speak with your insurance carrier to see how much they cover before seeking an assessment.

Q. Man says hot weather affects his cognition (light headed, confused, easily distracted).

A. Usually Dr. Herges hears hot weather affecting MS, not PD.  She recommends monitoring your hydration in hot weather because dehydration can cause these symptoms.  Tell your doctor about these symptoms and, possibly, do a medication review with the doctor.

[Editor’s note:  Dr. Herges is not well-informed on the issues of hot weather affecting those with PD and LBD.]

Q. Which dopamine agonist does not cause compulsive behavior?

A. They all carry a risk for compulsive behavior.  Usually the issue is the dose.

Ask yourself and discuss with your neurologist if you are getting adequate benefit vs. compulsive behavior (eating).

Try changing to another medication or different dose.  It’s all very individual.  Just keep trying until you find the right balance.

If you really fail in finding a medication balance, you may benefit from neuropsychological counseling to learn behaviors to control the compulsive eating (or other compulsive behaviors).

“Challenges, Changes, and Choices: Caregiving for People with Movement Disorders”

Sorry you haven’t heard from me in awhile. Those in the PSP and CBD groups know that we had a major conference for about 150 people in the San Francisco Bay Area at the end of October. Since then, we’ve been handling an average of two brain donations each week. So this has kept me and uber-volunteer Denise Dagan very busy. Am finally getting back into the swing of things with tonight’s post.

Denise attended the webcast of the 2017 National Caregiving Conference in early November. She is now catching up on the notes she took from the various sessions she attended.

One of the sessions she attended was on the challenges of Parkinson’s Disease (PD) for caregivers and the entire family. The moderator was Diane Breslow, LCSW, social worker, with a panel of other speakers addressing personal challenges, changes and choices. Though the session was focused on PD, the discussion applies to caregivers of those with the atypical parkinsonism disorders as well (LBD, PSP, CBD, and MSA).

Ms. Breslow itemized the physical challenges to all caregivers:
– Caregiver safety while helping patient.
– Increased physical exertion and strength are required as motor symptoms and falls increase.
– Decreased sleep – due to patient’s sleep disturbances and to caregiving itself.
– Decreased nutritional status.
– Social stress, especially if/when the care recipient has cognitive issues or slowed processing/speech.
– Increased risk of depression, especially if the care recipient suffers depression.
– Increased anxiety, especially if the care recipient suffers anxiety.
– Decreased communication with the care recipient, especially if speech is quiet and/or slow
These stresses increase as the person with Parkinson’s disease symptoms progress.

Ms. Breslow made the point that eventually a family with Parkinson’s Disease will need a healthcare team (neurologist, primary care physician, physical therapist, occupational therapist, speech therapist, at a minimum) and emotional support (support group, religious community, family, therapist).

Here are Denise’s notes from the session.

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Notes by Denise Dagan, Brain Support Network Volunteer

Challenges, Changes, and Choices: Caregiving for People with Movement Disorders – An overview and panel discussion
2017 National Caregiving Conference
Moderator Diane Breslow, MSW, LCSW
November 10, 2017

The moderator, Diane Breslow, began with an overview of Parkinson’s disease and associated caregiver challenges.

Parkinson’s Disease is…
– Chronic
– Progressive
– Unpredictable: different from day to day, or even within a day
– Different for each patient
– A family disease: the whole family experiences its effects.

Because it is a long term/life long illness it is advisable that families reach out for information and resources to support the family early on.

Eventually, you will need a team (neurologist, primary care physician, physical therapist, occupational therapist, speech therapist, at a minimum), emotional support (support group, religious community, family, therapist).

Caregivers need information and support, too.

Physical Challenges of PD on Caregiver:
– Caregiver safety while helping patient.
– Increased physical exertion and strength are required as motor symptoms and falls increase.
– Decreased sleep – due to patient’s sleep disturbances and to caregiving itself.
– Decreased nutritional status.
– Social stress, especially if/when the care recipient has cognitive issues or slowed processing/speech.
– Increased risk of depression, especially if the care recipient suffers depression.
– Increased anxiety, especially if the care recipient suffers anxiety.
– Decreased communication with the care recipient, especially if speech is quiet and/or slow
These stresses increase as the person with Parkinson’s disease symptoms progress.

How Caregiver’s Quality of Life is Affected
– 40% of caregivers indicate their health suffered as a result of caregiving
– 50% of caregivers had increased depression scores
2/3 of caregivers indicate that their social life has suffered
(last 2 correlate with the experience of the person with Parkinson’s)

Diane introduced the panelists who have all been members of Diane’s Parkinson’s caregivers support groups. Diane asked each panelist to speak to a particular aspect of their caregiving experience.

Karen’s situation is a good example of the far reaching effects of her husband’s Parkinson’s on their family. Karen is not afraid to talk about the anger associated with her husband’s PD diagnosis at age 60. Karen was a stay-at-home Mom so there was anxiety due to uncertainty and unknowns, especially financial. After four years she realized they needed to move to a 1-level, less expensive home. She went back to work, and she began to drive him to work. He was laid off and began to decline quickly. It’s been 13 years. They have long term care insurance which helps pay for 4 aides. Karen finds herself doing everything (finances, taxes, home repair, his health care management, insurance issues, etc.) rather than being in a partnership. She injured herself helping him move around. His sleep disturbances interrupt her sleep. Feeding him and toileting make messes that need to be cleaned up daily. Recently, he broke his hip and he ended up in skilled nursing, but the aides couldn’t go in there to help him so Karen had to do everything in skilled nursing. Karen feels like a hamster on a wheel that never stops. They have three kids, two of whom are supportive. She understands that caregiving is not for everyone. She struggles to find her own identity and joy.

Linda exemplifies the word proactive. Her father lives in Canada and the day after his diagnosis showed up at a speech Diane (this session moderator) was giving, and spoke with Diane after the speech. Together they developed an action plan for her father’s care. One of her siblings live near her parents. Linda lives in the states. Linda knew that it is important to her father to remain self sufficient. Linda gave her father a list of organizations to contact. They met with a nurse and social worker through the Canadian Parkinson’s Association. In that meeting they learned that not every neurologist is a movement disorder specialist. Now he sees one of the best movement disorder specialists in Canada. He has learned to advocate for himself in pursuit of his own self sufficiency. Linda feels Parkinson’s happened to her whole family. She doesn’t want to take credit as a caregiver because her whole family cares for each other, even her Dad with Parkinson’s still doing what he can to care for his family.

Claire’s husband, Ira, was diagnosed with Parkinson’s in 2010 and has severe arthritis. He is in a seated exercise class but finds that depressing because the other participants were all sick. Then he was hospitalized due to infection and returned to the exercise class with a different perspective. They are now the center of their social group, real cheerleaders and the class is respite for Claire. They expanded the number of seated exercise classes and made even more friends for both Ira and Claire, eventually finding a seated dance class which Ira enjoys so much he moves more during that class. They love it and they met even more friends, added more dance classes and more friends. Now there are 8 exercise or dance classes. The physical therapist has seen no deterioration in the past year and Ira has fewer falls. They also enjoy the opera and several theaters (both live and movies). They know where all the bathrooms are and have found people are generous in offering help with carrying equipment, opening doors, etc. Some things they have had to give up, like the symphony, because the family bathroom is not convenient and it is too much of a hassle. All the exercise means Ira can participate in the opera and theater, etc.

Jean exemplifies having built a community of support over many years of caregiving. Her husband, Richard, has been in a nursing home for 4+ years with all the frustrations since his diagnosis. For example, he lost much of their savings due to cognitive challenges and there is a division between him and his children. Through the VA he participated in a day program which gave her respite. Catholic charities and the VA helped them decide to move him into Wesley Place, where he lives now. She has been very happy with his care there and their emotional support for her family. They have a lot of friends and family who reach out frequently to provide her respite and social/emotional support. Even the checker at Trader Joe’s gives her the gift of a bouquet of flowers every time she shops there. You need to keep your eyes and ears open for the support that is out there for you.

 

Balancing Your Role as a Caregiver (and a person with a diagnosis) – Webinar Notes

Partners in Parkinson’s (partnersinparkinsons.org) is a joint effort between Michael J. Fox Foundation and AbbVie, a pharmaceutical company. They have occasional webinars on topics related to Parkinson’s Disease (PD). In a webinar last month, two PD caregivers and two PD healthcare professionals spoke about “building and balancing your role as a Parkinson’s caregiver.” The discussion was moderated by a retired family physician who has Parkinson’s.

Though all of the participants in the webinar were dealing with Parkinson’s Disease, the content of the webinar applies to all caregivers, regardless of disorder. And most of the content applies to everyone — whether you are giving care or receiving care.

Registration is required (and free) to access the webinar recording and slides:

www.michaeljfox.org/understanding-parkinsons/pip-webinar-registration.php?id=12&e=1435690

Brain Support Network volunteer Denise Dagan listened to the one-hour webinar and shared notes.

Denise says that the conversation covered four areas:

“Caregiver considerations” = wearing many hats as a caregiver, taking a team approach as care partners, dealing with the emotional roller coaster, and seeking support.

“Strategies for transition” = the challenges of transitioning a part of your identity from a healthy person to a person with PD – and – from a spouse to a care partner.

“Balancing individual needs and shared goals” = keeping perspective between focusing on PD management and both care partners continuing to participate in activities they enjoy.

“Advocating for better health” = advocating for your family member with PD in the doctor’s office, in the PD community (example – fundraising for a cure), and at the state and federal level in public health policy.

Her notes are below.

Robin

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Notes by Denise Dagan, Brain Support Network volunteer

Building and Balancing Your Role as a Parkinson’s Caregiver
Partners in Parkinson’s Webinar
November 8, 2017

CAREGIVER CONSIDERATIONS

The role of caregiver is often one of many an individual may have; caregivers, or care partners, can include children, spouses, friends and extended family or involve several individuals. Many people prefer the term care partner because it implies a choice to care and that the relationship is reciprocal, while caregiver implies the burden of care has been thrust upon you.

The transition to care partner may lead to unexpected challenges and impact existing relationships.

Caregivers may need support from friends, family or the community; access to resources can help ease transition.

Getting a diagnosis can be a relief, especially after a long term of unexplained symptoms. After diagnosis learning about Parkinson’s and how to live with it can finally begin, although not all families will pursue information immediately, especially if medication is effectively compensating for symptoms.

It can be an emotional roller coaster, especially right after diagnosis. A therapist can be helpful, especially to guide families through fear of the unknown and encourage communication and combat depression.

The panel recommends joining a support group to learn how others cope with Parkinson’s, although you can’t compare yourself directly to others because every person’s symptoms, underlying health, lifestyle, etc. do vary.

Health care policies may impact both caregivers and patients; caregivers can help advocate and be an additional voice when speaking to health care providers, weighing in on the obstacles, struggles and wins to make the most of those interactions in person and on the phone.

Caregivers can amplify the patient voice toward better care and access.

STRATEGIES FOR TRANSITION

Access available resources to learn about PD. Find a movement disorder specialist. Movement disorder specialist finder at www.partnersinparkinsons.org.

Engage with allied health specialists (physical, occupational and speech therapists).

The panel agreed that most health care professionals are more than willing to take time to answer concerning questions that will reduce the inquirer’s anxiety or frustration, so find that patient person on your health care team who has time to return your phone calls or email and reach out to them when you have a question. Reducing your anxiety or frustration by reaching out to that person will keep you well.

Connect with the community through support groups, online forums, events, etc. Education, social connections with an understanding community, even activism can help combat depression.

Empower patients to make decisions.

Explore ways you work as individuals to optimize how you can work together. One panelist found his wife’s significant improvement immediately following DBS made them realize how much he was missing his healthy wife. They made changes then to stay connected and to share their story to help others see that PD doesn’t have to drive a wedge between you as a couple.

Engage with a therapist or practice meditation. People’s fears are all over the place, like loss of mobility, loss of speech, loss of job, etc. The best way to face your fears is to share them and make an action plan to put off those losses as long as possible. Reduce anxiety by getting all your financial, medical and legal documents in place well ahead of when they will be needed. For some people taking action can help ease depression.

Do activities that bring enjoyment to you and your caregiver. It is very easy for time in the day to be overwhelmed by medication timing, doctor appointments, exercise routines, etc., completely sidelining needs of the caregiver OR the lifestyle you both used to enjoy. One panelist got good advice; as soon as you are diagnosed write down who you both are and the things you both enjoy and refer back to it often, especially when either of you are feeling overwhelmed by managing PD.

Live in the moment.

BALANCING INDIVIDUAL NEEDS AND SHARED GOALS

Both people in the caregiver-patient relationship share daily goals, but both also have needs as individuals. Encourage independence in the person with PD.

Sometimes effort is needed when facing uncertainty. We need to learn to manage uncertainly/anxiety independently and together. Sometimes input from a therapist, clergy, etc. is really helpful with this.

Caregivers should schedule time for themselves to meet other priorities; self-care is critical when caring for others. Panelists agree that there doesn’t need to be a ’schedule’ for self-care, unless there is a regular activity they enjoy, but without a regularly scheduled activity, it is easy to let daily PD care derail self care. Don’t let that happen.

Reach out for respite care from social services, church, family and/or friends to stay with your family member allowing the caregiver to have a break and/or stay involved with activities they love.

People with PD should focus on setting and managing personal goals.

Caregivers and people with PD have other personal roles (i.e., sibling, child or friend) that require just as much attention.

It is important to find balance when integrating the caregiver role into daily life.
– Exercise!
– Communicate. Address issues, and feelings as they arise.

ADVOCATING FOR BETTER HEALTH

Health care policies may impact both caregivers and patients.

The federal government is the largest funder of PD research; approves new PD drugs to ensure they are safe and effective and helps increase access to services patients need. The panel encouraged everyone to educate themselves and participate in fundraisers and clinical trials.

Caregivers can learn more about the public policies that affect people with PD and call legislators to amplify the voice of Parkinson’s patients. The panel encouraged everyone to educate themselves and write their legislators.

Caregivers also can help advocate for more information and better care at doctors’ appointments. Between visits keep notes about things you notice in your family member with PD (increased falling, unstable gait/balance issues, wearing off of meds, etc.).

Use Fox Trial Finder or Clinicaltrials.gov and bring trials you are interested to to your doctor to discuss which you may participate in.

Learn more about public policy and how to take action at michaeljfox.org/policy.

QUESTION AND ANSWER

Q. Thoughts and suggestions for my family member who’s recently diagnosed and quickly agitated/frustrated, but will not see a therapist?

A. First, find out if there is a medical issue contributing to their behavior? Is this behavior a departure from their usual behavior? Be aware of your safety around this behavior and have an exit plan if your family member really goes off the rails. Find someone to talk to as a caregiver, first. Eventually, you may be able to get your family member to talk to them. Try an aggression outlet, like Rock Steady Boxing.

Q. Person with PD has no immediate family support.

A. Be your own advocate. You are not alone. Talk to someone. It can be a church group, neighbor, pastor, friends, other family members. Tell your doctor what you love and implore them to help you be able to keep doing it. Don’t let yourself become isolated.

Q. Importance of reaching out to extended family, friends, etc.

A. The extended PD community can be intense, close, understanding, compassionate relationships because they are dealing with the same symptoms, financial, emotional woes when your non-PD friends and family don’t understand.

Q. How do you deal with friends or family who don’t know how to deal with your PD?

A. This definitely happens. With media exposure more people understand PD is not a death sentence, or they know someone with a PD diagnosis. Talking in casual groups to share information about medications, exercises, diet, etc. in public (at the YMCA, in the grocery store, etc.) helps make people even more comfortable talking with a person with PD. MyParkinsonsTeam is an online chat about PD.

Q. Most important tip for care partners on this journey?

A. Find the right doctor. Movement disorder specialist who’s as up-to-date as possible. Get involved. Move around. Be active. Be sociable. People who ask, am I doing enough? Should I be doing more? There is no doing it ‘right.’  Keep reaching out, be gentle with yourself. Be resilient. Don’t stop looking for better symptoms management. Don’t feel like a pest. Ask about clinical trials. Ask if there’s more you can do. Search for answers until you find one that works for you. Couple can drift apart. Turn toward each other, instead. Communication is paramount. Be more open, honest, vulnerable, committed, invested. Together you are stronger. It can improve your relationship.