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
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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.