3 things to know about frailty and Parkinson’s: II. Physical activity

Following up my previous post on quality of life and mobility related to frailty and Parkinson’s disease, I want to talk about physical activity. This article tells us that females with Parkinson’s are 10x more likely to be frail than males, so it’s important to focus (for a moment!) on females.

And since we know physical activity declines with Parkinson’s, so it could be assumed that physical activity levels would also indicate frailty… but you know what happens when you assume…

instead, what I found is that females with Parkinson’s are active! They are listening to exercise recommendations and are moving! YAY!

(www.parkinsons.ie)

So it’s not a lack of activity that is making females with Parkinson’s frail…

managing the other disease symptoms is what contributes to frailty (i.e. how fatigued someone is after the day, how difficult it is to stay on task, how mobile someone is during chores), not the ability to complete exercise and be active!

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Find article here: Roland, Cornett, Theou, Jakobi & Jones (2012). J Aging Res. 2012; 2012: 468156.

So, the moral of the story? first of all, don’t underestimate people with Parkinson’s… they are moving! And secondly, pay attention to the other symptoms, like how exhausted someone is at the end of the day as an indication of frailty. much love.

3 things to know about frailty and Parkinson’s: I. Quality of Life

This week I’m going to share some information from my PhD work on frailty and Parkinson’s disease.

Frailty is considered highly prevalent in older adults and increases vulnerability to adverse outcomes (falls, disability, hospitalization, and mortality). Popular scientific definitions operationalized frailty as a phenotype or an accumulation of deficits. However, the concurrence of frailty and Parkinson’s is interesting because they overlap… begging the question: does PD make someone frail? does frailty worsen PD symptoms?

presenting my research at the Movement Disorders Society Conference (Toronto, June 2011)

presenting my research at the Movement Disorders Society Conference (Toronto, June 2011)

Find article here: Roland, Jakobi & Powell (2012). J Amer Geriatr Soc; 60(3), 590-592.

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When looking at quality of life (QoL) indicators, we see that QoL score predicts frailty in persons with PD, especially mobility-related QoL and in females. What does this mean? … how well you move around in your day-to-day life (mobility) is the biggest indicator of frailty risk in persons with PD and that females with PD are more likely to be frail than males.

frailty_thy_name_is_woman_postcard-p239051805703934586trdg_400

skitch

So, keeping active and mobile will lessen your risk for frailty, and keep you happier as you age with Parkinson’s ! much love.

cookbook care

after many recommendations and being on my “to read” list for a while, I finally sat down (well, on my busrides) and read A Bitter Pill: how the medical system is failing the elderly by Dr. John Sloan, a physician in Vancouver, BC, who now provides homecare healthcare to frail older adults.

The book talks about how the healthcare system is not providing for needs of a growing older adult population. His thoughts are that older adults needs are only met once we start to see them as individuals, with individual care needs. And that often by following standardized clinical care guidelines (or “cookbook care“) we are doing more harm than good.

cookbook care

He introduces lots of care-stories as well as different views his older patients have on dying, that range from “I don’t want to die with sombody I love hating what they have to do for me. I’ve had a great life, now it’s over.” to “I’m not ready, no way! I might miss something!

The answer to the question “what do older adults want?” is discussed throughout, and in the end the only answer is “they want us to listen“. How true! Just to genuinely be there and listen to their stories, complaints, needs, etc. … who doesn’t want that? And at the end of their life, that is what might provide them with the most comfort and affection.

chatting with elaine

caregiving is never easy. it takes a big heart, courage to do right by the person you’re caring for, the strength to carry around the significance of the role, and lots of patience… no matter if your role is personal or professional!

Success should be measured by:

  1. staying true to what’s happening
  2. listening to what the person wants
  3. treating them as individual human beings
  4. accepting they may be near the end of their lives
  5. and don’t try to hide mixed-feeling about the job… it’s not always an easy burden to bear!

baycrest.org

Encouraging new attitudes in health care, as Dr. Sloan mentions, will only improve care for everyone! It’s a very honest read that I highly recommend, and a much needed change in heart for healthcare. much love.