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“Top 10 ways a care partner can support someone with Parkinson’s disease” – Session notes

December 6, 2021 By Parkinson's Community Help

In early November, the Connecting Caregivers Radio hosted a virtual conference session with care advisor Yazmil Soriano on tips for caregivers when caring for a person with Parkinson’s disease (PD).  The speaker addressed a challenge for caregivers:  the caregiver’s role is crucial in helping those with PD navigate this new journey, while at the same time caring for yourself.  Ms. Soriano encouraged caregivers to “take a step back and realize in order to be the best version of yourself you need to be healthy.”  This session was part of a three-day conference for PD caregivers. Though the title says that “the top ten ways a care partner can support someone with PD,” the ten “ways” are very high level concepts such as communication and journaling. Many specific tips were shared as part of the ten concepts.

The speaker offered a bunch of tips such as: 

  • Learn about PD, but learn about your person with PD
  • Communication is important
  • Journaling can be helpful to document progression and to get feelings out
  • Allow for extra time in daily activities, and allow a slower lifestyle to be the new normal
  • Participate in support groups
  • Involve adult children and family, don’t keep them in the dark
  • Humor and laughter are great coping mechanisms
  • Care partner mental health is important and should be prioritized
  • Physical health of care partner is important as well
  • Learn all you can from fellow caregivers and medical lectures
  • Have a designated schedule for time away from the person with PD, put it on the calendar and stick to it
  • Blame the disease, not the person with PD (for times when caregiver frustration is high)

For more resources on caregiver stress, please see this Stanford Parkinson’s Community Outreach webpage, which has resources on practicing self-care (some of which are specific to PD caregivers).

For caregiver blogs (to find out how other caregivers cope and practice self-care), please see this Stanford Parkinson’s Community Outreach webpage.

The speaker noted the importance of participating in support groups. If you life in Northern California, check out this list of PD caregiver-only support groups, most of which are meeting in-person or virtually.

For a recording of this session, please visit this Connecting Caregivers Radio webpage.

See my notes below of the November 2nd session. 

Regards, 

– Joëlle Kuehn


“Top 10 ways a care partner can support someone with Parkinson’s disease” –  Session notes

Speaker:  Yazmil Soriano, care advisor, Neuro Challenge Foundation for Parkinson’s, Tampa Bay

Session Host:  Connecting Caregivers Radio

Session Date:  November 2, 2021

Summary by:  Joëlle Kuehn, Stanford Parkinson’s Community Outreach 

What is Parkinson’s disease:

  • Neurological disease that affects your motor functions
  • Dopamine neurotransmitters are either depleted or decreased in the brain and dopamine mainly affects moves and motor functions of a person
  • PD and dementia are not the same, you could have PD and dementia simultaneously, or you might only have one and any other type of parkinsonism

The PD Community:

  • The PD community consists of those who have been diagnosed with PD, their care partners, their medical teams, community resources, care advisors, any person that the person with PD considers their community (ex. neighbor, rabbi, priest, church friends)
  • Remind care partners that we are all one community and are here for each other 

Diagnosing PD:

  • Usually putting a name to things they have already been experiencing and have adapted to: such as trembling hands, constipation, loss of smell, etc.
  • When you give those symptoms a name, it starts a journey of getting to know what this disease is, and it also begins a new way of living
  • Journey is not only for the person with PD.  Includes their community and care partners

Care partners:  your role is crucial in helping those with PD navigate this new journey, while at the same time caring for yourself.  Those two things can seem like they are a challenge, but it is taking a step back and realizing in order to be the best version of yourself you need to be healthy.

#1 – Learn about PD, but learn about your person with PD:

  • When someone is first diagnosed, it is normal for the first step to be to learn about the condition 
  • What is also important is we also learn about your person with PD
  • If you have met one person with PD, you have met one person with PD
  • Symptoms vary so much
  • As you learn about the disease and it’s potential progression, remember that the disease trajectory for your loved one may or may not be the one your loved one experiences
  • Many people associate PD with tremors, but not everyone experiences PD
  • Important to get to know your person with PD and what their symptoms are so that you can better understand their trajectory
  • In our experience, the care partners become more empowered when they become familiar with the intricacies of their own person with PD, and what their daily life activities are

#2 – Communication:

  • Important to have communication within your community
  • Between medical team – neurologists, nurse practitioner, primary care doctor, therapists, psychologists
  • Advocating and communicating to care advisors and support groups
  • With friends and family:
    • Let them know of the new diagnosis
    • Continue socialization
    • Inform adult children of tasks they can take over (taking care of the loved one when the care partner has appointments, respite time, etc.)
    • Allow assistance as the condition progresses

#3 – Journaling:

  • Write to document progression, and to get feelings out
  • Document to be able to share symptoms, patterns, and events with medical teams
  • Write to communicate with others     
  • Write to record the journey  
  • Care partners are important to become that recorder for thing the person with PD may not notice or remember by the time of the doctors appointment
  • Person with PD should also keep a journal for things to talk to the doctor about, could also be helpful to see how writing styles change over time
  • You have good days and bad days, and doing anything that can put those feelings out is good, and is a tool that can be used to help things change

#4 – Allow for time for:

  • Having PD or caring for someone with PD means everything has to slow down
  • The condition itself makes them slow down themselves because it affects all motor movements (walking, speech, thought process)
  • With PD can come a slower thought process, words get or seem to be lost:
    • Allow the conversation to be slower
    • Suggestion: take a long car ride and let the conversation flow
  • Allow time for your person with PD to have time to get ready, eat, perform daily tasks
  • Allowing a slower lifestyle to be the new normal will help a care partner and the person with PD reduce stress
  • Adaptive devices can assist with daily tasks as well which allows the person with PD to be independent as long as possible
  • Allow them their time to get up, get their things, and perform activities

#5 – Participate:

  • Participate with your person with PD’s support groups:
    • Become your friends, community, they know what you are going through
    • Have separate support groups as well to allow each person to vent 
  • Social events:  Could also be a support group
  • Dance:  Great way to participate with your person with PD
  • Community gatherings

#6 – Involve adult children and family:

  • Often are kept in the dark about what the care partner and person with PD are going through.  Adult children can be frustrated because they don’t know what is going on with their parents, but want to be able to help
  • Often are willing to take on a few tasks off of the care partners plate, such as making doctors appointments for the care partner, finding resources, providing respite care
  • Adult children and family can also benefit from support groups
  • Don’t keep them in the dark 

#7 – Humor and laughter:

  • Short term benefits:
    • Increase of oxygen to muscles, heart and other organs
    • Reduces stress levels, helps with circulating blood flow and muscle relaxation
    • Activate and relieve stress response
    • Increasing then decreasing blood pressure and making you feel more relaxed
  • Long term benefits:
    • Improves immune system – positive fun thoughts can release neuropeptides that help fight stress and serious illness  
    • Relieves pain – allows body to produce its own natural pain killers
    • Increases personal satisfaction – makes it easier to cope with difficult situations
    • Improves your mood – lessens stress, depression, anxiety and overall makes you feel happy, which can improve self-esteem

#8 – Care partner mental health:

  • Ok to grieve:
    • Not just loss of life, but grieving a loss of life style
    • Grieving the person they once were
    • Not just about death, it is about loss in general
  • Taking time to embrace and accept who we now are, as a care partner, as a person with PD, as a partnership
  • Mental health:
    • Individual, couples therapy, support groups
    • Respite care, care partner takes time for themselves, finding ways to continue doing things you used to do 
    • Companion care, care for the caregiver
    • Meditation, yoga, walking

#9 – Important to be honest with yourself  

#10 – Physical health of care partner:

  • Join in on groups with your person with PD like rock steady boxing or dance
  • While your person with PD is in a group, like pedaling for PD, go for a walk or also join a class at the same time.  Good way for you to get moving as well
  • Your physical health is important too 
  • Importance to have good gait and balance to be able to care for your person

Suggestions from fellow care partners the speaker works with:

  • Learn all you can from fellow caregivers and medical lectures
  • Open up at the support groups adn share your challenges, speak up
  • Don’t be terrified by what you are facing, look at it one step at a time
  • Have a designated schedule for time away from the person with PD, put it on the calendar and stick to it
  • Blame the disease, not the person with PD (for times when caregiver frustration is high)
  • Never think “it won’t be me” when you hear stories.  I’ve learned valuable lessons of what to expect and what is to come from others
  • Force yourself to take time for yourself
  • Network – take advantage of the experience of others who do the same work
  • Join a local support group, even if you don’t say anything you can find comfort in knowing that others are contending with exactly the same issues you do
  • If you still don’t like the idea of a support group but get along well with certain people within the group, meet with them separately

Question & Answer Session:

Question: Two of my aunts have PD. What are the chances I will get it?

Answer: Around 10% of PD is genetic.  Most PD research has been in environmental PD.  Examples:  farm workers exposed to pesticides, veterans exposed to agents, worked in or near factories.  I’d suggest looking for research opportunities in Stage 1 or Stage 2 that are focused on genetic studies.

Question:  Is there an average age that someone gets PD?

Answer:  It does get picked up more after 50’s and 60’s, but we are starting to see more young onset.  We do see it more in the older population, but when we diagnose someone in their 60’s, sometimes they tell us they’ve been exhibiting symptoms for 20 or 30 years, so it depends. 

Question:  Is there any way PD can be avoided?

Answer:  Unfortunately, we don’t know if it can be avoided or cured.  The Michael J. Fox foundation is looking into how pesticides and other chemicals can cause PD.  They are working hard to get those pesticides, such as paraquet, banned from use.  There are some known agents to cause PD, there is a correlation.  There is also a correlation to people who worked in a factory, or lived near a factory and had to drink the water and eat the agriculture that had the pollution. There is a stronger correlation with the environmental factors than a genetic factor.  It’s really important that people take part in these studies early on (Phase 1 and 2).

Question:  My husband has PD.  He fell off a ladder and hit his head really hard, and things started to change after that.  Could he already have had PD, and the head injury just brought it out?

Answer:  That is possible.  We suggest seeing a neurologist for that, especially a movement disorder specialist.  It could be because her husband has a traumatic brain injury.  It could also be that he fell off the ladder because he had a freezing episode.  It’s important to speak to the neurologist so that they can look at the bigger picture. Also look if it could be Lewy body dementia, it has a lot of parkinsonisms but isn’t PD.  They could also be developing both conditions at the same time. 

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