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.

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yoga for depression in Parkinson’s – part 1

Depression is common in Parkinson’s disease, but is not easily distinguished.

The implications of depression in someone with PD and their caregiver(s) can be as grave as physical symptoms, especially since there is a reluctance to admit you are suffering from depression.
In Parkinson’s, depression is less about guilt and self-reproach, but is more focused on the symptoms of irritability, anxiety, sadness, and concern with health. Especially in later stages of the disease, it can be difficult to identify depression among the progressing symptoms (see chart below, Calne 2003).

It is really important to support depression in Parkinson’s by having an advocate, who can speak up about the symptoms if the persons with Parkinson’s and/or caregiver does not feel comfortable. An advocate can help get appropriate counsel, treatment and provide positive reinforcement for both person with Parkinson’s and caregivers.
The practice of yoga can help manage depression. Specially, LifeForce Yoga for depression is a yoga practice that is intentionally designed to work with and manage mood. Amy Weintraub is the founding director of LifeForce Yoga and author of Yoga for Depression. She recovered from her own battle with depression through her meditation and yoga practice. She is also part of the Kripalu family!
Breath of Joy! is one of my favourite ways to get my body moving and bring some joy into my day… and the best part about it is that it is so accessible to anyone! You just need to move with your breath… and feel the love!
P.S. for a more detailed description of Breath of Joy see HERE
Here’s a great video demo by Amy Weintraub
 So, take a moment each day and lean toward joy!  expand your heart, and your capacity to nourish yourself. Identifying signs of depression in Parkinson’s early gives you the best chance to seek the care you need… and yoga is a wonderful tool to help you feel the joy! much love.

support & information

yesterday, I attended a monthly Parkinson’s support group meeting in Vernon. I go to both the Kelowna and Vernon support groups, not only to let people with PD know I’m here [ and would love for them to be involved in my research 😉 ] … but also because it is an incredible opportunity to learn!

(photo credit: Parkinson's disease Society Wales support group)

I’m always amazed at wealth of knowledge people living with PD and their caregivers have. After living with the disease day-in and day-out, they are able to…

notice subtle cognitive changes like neurologists,

 

(credit: stewy6.com/synapse/?cat=150)

discuss side-effects and drug-interactions like pharmacists,

 

(credit: cartoonstock.com)

and compensate for fluctuations in movement abilities like physios and kinesiologists!

(credit: cartoonstock.com)

 

There is so much wisdom to be gained by being involved with the Parkinson’s community… and older adults in general. much love.

caring about Parkinson’s

darc, levon and i are hittin’ the dusty trail and heading to Langley BC. They are having a Parkinson’s Regional Conference there. Since I can’t get enough of PD information, I want to be there to meet these folks from the Pacific Parkinson’s Research Centre (http://www.parkinsons.ubc.ca)…

Dr. Martin McKeown, Neurologist and Clinical Director, "A Picture of Your Brain is Worth a Million Words"

Maggie Caunter, Physiotherapist,"The Importance of Exercise"

 

I love working with the Parkinson community, I find it so rewarding. For those of you who don’t know, here’s my Parkinson story…

I started volunteering for the Parkinson Society in 2002… I’m sure my roommates could tell you that every Friday I took an hour-long bus ride down to White Oaks Mall in London ON to get to the Parkinson office there. I’ve sold tulips, stood at mall displays, organized hair cutting, galas … you name it!

 

It all started because of this man, my Grampy (Buddy) Roland…

 

Jesse and I with Grampy Roland, early 1990's

 

Since he lived in Cape Breton, Nova Scotia and I was in Ontario, I felt like by volunteering I could help make a difference in the lives of people with Parkinson’s disease (PD).

 

The more I got involved in the Parkinson community, the more I started to think about her, Nanny (Sadie) Roland….

Nanny Roland and I, 1985

Caregivers selflessly donate all their time to their spouse, tending to their constantly changing needs. Parkinson’s disease is so individual and ever-changing, that caregivers can easily get overwhelmed and don’t know where to turn for help…

 

Care for the caregivers is an often forgotten component in PD care, which I why I did my Masters’ thesis on Caregiver Burden (here’s the published paper if you’re interested -> FINAL An exploration of the burden experience by spousal cg of indivs with PD (Roland, 2010))

 

I’m happy to announce that Kelowna now has a Caregiver Support Group! We had a great turn-out at the first meeting and they are going to continue to meet once a month (the last Friday at 10am, contact PSBC for more info) to spend time talking about their needs and sharing with others who are in similar situations. I think this is such an important component of care for any one dealing with a chronic degenerative condition, and am so happy that it is underway.

 

 

If everyone took the time to ask a caregiver in their life how they are doing and if they need to talk / some help, it may just lighten their load and make their day! much love.