Partners in Parkinson’s care

In light of National Caregiver Month, I wanted to share some tips from the Parkinson Disease Foundation on being in a “care partnership”:
I prefer to call this relationship a “care partnership” because I believe it is one that is truly reciprocal. As a person with PD adjusts to physical changes and, at times, to changes in personal independence, the care partner must learn to adapt to a different relationship dynamic and perhaps to greater “ownership” of duties that their partner had previously handled.
  1. Your experience is unique – respect your own journey
  2. Even though you didn’t sign up for this role, it doesn’t mean you can’t be GOOD at it!
  3. Have open communication
  4. Don’t let the disease define you
  5. Find a GOOD doctor and go as a team
  6. Don’t apologize for getting a second opinion, that’s taking care of yourself
  7. Learn about PD step-by-step
  8. Educate others on PD
  9. Actively find support to help you manage the day-to-day AND to share your thoughts, feelings, experiences and valuable information
  10. Discuss future financial and medical plans NOW
  11. Remember: SELF-CARE IS NOT SELFISH!

For more details on these items, check out: www.pdf.org/pdf/fs_pd_partnership_08.pdf

much love.

 

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Parkinson’s Apps

Last week I introduced the idea of using a smartphone to detect Parkinson’s (biomarkers, see link HERE), inspired by Max Little’s Parkinson’s voice initiative. This week I want to share some of the apps available to people with Parkinson’s disease…

Medication Tracker: You’ve got the best pill tracker available sitting right in your pocket. Download these two apps for iPhone and Android to manage your daily regime, set reminders and record dosage taken. For Android systems, we fielded this recommendation from Twitter follower, @yopd.

Puzzles: UnBlock Me (AndroidiPhone) and Hidden Object (Android) came recommended to us from our Twitter community. “As a recent PD, I use all the puzzle games I can. Hidden Object is a timed hidden object game [that I use],” shared Twitter follower Rod. UnBlock Me is a similar puzzle game where you try to move a red block out of the center of the board.

Twitter: I use this application EVERY DAY to build community, share resources, and learn what’s new in the Parkinson’s community. It can also help Parkinson’s symptoms. keeping your fingers (and brain!) moving! Follow organizations like @ParkinsonsBC@MichaelJFoxOrg, National Parkinson Foundation or ME (@kaitlyn_roland) to stay up-to-date on research news and advice, as well as engage with the Parkinson’s community.AndroidiPhone

Charity Miles: Raising money for Parkinson’s research is as easy as a walk around the block with this app. For every mile you walk, run or bike with the Charity Miles app, the charity of your choice earns money and awareness. Don’t just take our word for it, Team Fox member and Twitter user @RyansHope raved about the app. “[Charity Miles] keeps me moving which helps manage my symptoms,” he said. AndroidiPhone

Parkinson’s Toolkit (National Parkinson Foundation, Inc.): This free app helps you navigate physician visits and covers key issues you should discuss with your physician, like symptoms, planning, diagnosis, treatment options and billing information (iPhone).

PD Home Exercises: is a video app that have more than 50 exercises you can follow along to at home covering all range of movement and mobility… it also includes a metronome and vibration for cueing training! (iPhone)

Memory, notes, lists and organization: Evernote is amazing for capturing details of your day, organize items from your shopping lists to your travel itinerary. The best part? You can access your notes from any device – mobile phone, tablet or PC because the information is stored in your personal cloud. I use this all the time to store ideas, note for later, and to-do lists!

What are some of your favourite apps – that either help you organize your life, or add some fun to your day?? Please share in the comments below! Happy app-ing! much love.

sources:

http://mashable.com/2013/02/04/baby-boomer-apps/?ncid=edlinkusaolp00000008

https://www.michaeljfox.org/foundation/news-detail.php?smartphone-apps-to-help-you-manage-parkinson&utm_source=social&utm_medium=twitter&utm_content=patientprofiles&utm_campaign=smartphoneapp

http://parkinsonscureresearchfunding.wordpress.com/2013/02/19/phone-apps-to-help-manage-your-parkinsons/

coping skills for parkinson’s care partners – PDF expert briefing

I attended an online presentation from the Parkinson Disease Foundation on coping skills for PD caregivers, in honour of National Family Caregivers Month.

my grampy, who had PD, and his loving wife and eventual caregiver (1991).

my grampy and his formal caregivers at the care home.

Dr. Julie Carter, from the Parkinson Centre of Oregon, spoke about how caregivers are integral to the emotional and physical health of the persons with PD.

She spoke on how stress impacts the mind-body and introduced a concept called the “self care toolbox”.

1. Stress affects the mind-body

Due to stress, caregivers have chronically elevated levels of cortisol, which can be toxic to your cells!

Also, with increased stress, our telomeres (protective caps of DNA/chromosomes) get shorter! This is related to rapid aging and shorter life expectance.

This makes stress-managment important! But first, we need to recognize the signs of stress…

  • exhaustion
  • anger
  • depression
  • frustration
  • resentfulness
  • irritability
  • sadness
  • loneliness
  • sleep deprivation
  • panic attacks
  • anxious
  • colds, ulcers and other physical complaints

What to do? Tracking these signs of stress and noting the surrounding environment and situation when you feel the sign can help identify triggers/patterns of stress.

2. Self-care toolbox

The following are 7 skills that can help caregivers care for themselves and thus better care for their loved one

  • Self-compassion. Caregiving jobs are one of the hardest, so don’t be hard on yourself! Find support, be non-judgmental and know you are not alone.
  • Connections. Make good social networks that help you problem solve (support groups, family, friends, formal support). Learn to ASK for help – most people want to help you but don’t know how. Take advantage of formal support.
  • Communication. Express your emotions (through journaling, art, counselling, conversation) so you can communicate more effectively and meaningfully with your spouse. *Note: PD changes communication (i.e. lack of facial expression, quiet voice, slow response time, lack of spontaneous gestures), so you need to be more present and engaged.
  • Optimism. Change the patterns of automatic negative emotions/behaviours/beliefs. You can change the situation but you can change how you feel about it and behave.
  • Flexible/creative problem solving. Identify a problem and come up with a variety of ways to deal with it… try something new and be willing to try again!
  • Care for yourself. This is a necessity, not a luxury! Identify pleasurable activities (i.e. morning coffee, walking the dog, exercise with friends) and track how you feel when you are doing this activity… it’s not superfluous if it makes you feel GOOD!
  • Take charge. Focus on what you can control.

If you are interested, you can see the entire presentation here.

And a HUGE thank you to all the caregivers for everything that you do! Happy caring and much love.

P.S. want more caregiver care? See HERE , HERE and HERE.