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.

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4 thoughts on “caring about Parkinson’s

  1. Hi Kaitlyn!

    Congratulations on finishing your thesis! I did research in school on patient safety in home care and one of our indicators was caregiver burden, that was my personal favorite to research, the implications are enormous. As a nurse I have definitely made it a priority to focus on not only the patient but the main caregiver as well, your patient’s health, well being and quality of life is so heavily dependent on them. I often tell spouses that the best thing they can do for their loved one is to take care of themselves, physically, mentally and socially.

    Very interesting! Congrats!

    Laura

  2. laura, thanks so much for your input! I love to hear that wonderful nurses like you are implementing care for caregivers in practice!
    it sounds like you bring so much compassion to your job, your patients are very lucky 😉 xo

  3. Pingback: coping skills for parkinson’s care partners – PDF expert briefing | kaitlyn roland

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