Shakinallover

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We interrupt our regular programming to present this musical interlude of some of the best Parkinson’s music you may ever hear! Well, in fairness, they are technically not about Parkinson’s Disease in particular, but whenever I hear them these days, they resonate in a different way.

If you’re a PWP (Person with Parkinson’s) perhaps you have similar songs that do the same for you. Did I miss your favourite? Add it in the comments or drop me a line and I’ll be happy to add it to the collection!

Here’s my favs:

  • This was an unexpected hit for the Canadian band The Guess Who in 1965. Shakin’ All Over

 

  • Shake, Rattle and Roll by Big Joe Turner in 1954 audio only

 

  • Whole Lotta Shakin’ Goin’ On by Jerry Lee Lewis. Here’s a live version from 1957.

 

  • Hippy Hippy Shakes a hit for The Swinging Blue Jeans in 1963. audio only

 

  • Eric Burdon and the Animals tried to cash in on a dance craze with Shake in 1966.

 

 

  • Let’s Shake by Teenage Head. A live version from the early 90’s.

 

  • It goes against my better judgement to  include this in any “best of” list but, from 1976, KC and the Sunshine Band perform live on Soul Train their iconic piece Shake Your Booty.

 

 

These don’t necessarily make a “best of list” but I thought someone may want something original from people with PD themselves. These aren’t earnest tales of woe but attempts to have a laugh about PD. Here’s one from Mitch Faile and a less polished, but equally authentic one, from Beverly Ribaudo.

 

 

 

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Image of Sympulse from Klick Labs

In my last blog, Tell Me What You Want, I reviewed the need for PWP (People with Parkinson’s) to be more vocal about their needs.

While we might wish that others in our lives would be more empathetic, we can’t leave it solely to their own initiative.

Well, surprisingly, someone was listening. And right here in Canada! I’m not exactly sure that this is what I had in mind but if the shoe fits (or, in this case, the armband), wear it!

CTV news reported recently that Klick Labs has developed a tool that can simulate the experience of PWP so that their caregivers can get a sense of what it actually feels like for that person.

This device, dubbed  The Sympulse, records the tremors of Parkinson’s patients and then wirelessly transmits the data to a second device worn by a caregiver, to allow them to “truly feel what the patient is feeling”. The device, which resembles a blood pressure cuff, is strapped around the forearm, with a battery and motor pack providing the tremors.

I probably should have stopped reading the article here. My skeptic antennae were buzzing. The article continues…

Klick Labs VP Yan Fossat says the point of the “tele-empathy” device is to help those caring for people with the nerve disorder to get a real feel for the condition.

“This is intended to create empathy, to make you feel that having tremors is actually very debilitating; it’s not just a mild inconvenience,” he told CTV’s Your Morning.

“Feeling the disease with your own arm, with your own hand, is the best way to truly understand what it’s like,” he added.

Okay Yan, thanks for the thought. I’d be negligent if I didn’t point out though, Parkinson’s Disease is about much more than a “nerve disorder” or having tremors. One doesn’t have to look far to see that PD is a complex, chronic neurological disorder compounded by a myriad of other conditions including rigidity, dyskinesia, isolation, depression, apathy, mobility problems – to name but a few. PD also varies so much from one person to the next  (for my own personal “list”” see my blog here). Feeling the disease is, of course, impossible without living with it which we obviously wouldn’t wish upon anyone but pretending that running a few volts of current through some wires and giving the odd jolt to someone’s arm will help someone “truly understand” PD is a bit of a stretch. If the purpose is to feel my tremor, reach out an touch my arm. Or hold my hand.

There is, I’m sure, a use for such a device in “simulation” exercises such as those employing smoke-stained goggles to simulate limited vision or noise-reduction headphones to suggest hearing loss or padded gloves to simulate dexterity restrictions. Using the Sympulse in this context, and with the understanding that tremors are but one symptom of PD, might provide an opportunity to foster empathy. I’d suggest it will take a little more work than this purports.

 

To read the aforementioned article in full, click here.

Tell me what you want -what you really really want

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STOP right Now, shazzz999, deviantart

I count myself fortunate to have a good number of friends, family, health care professionals and even neighbours around me that can be called upon to offer support in my day-to-day struggles with PD. Despite this, from time to time, I feel reticent to ask for help. I don’t want to impinge upon anyone or be a burden.

There are also times – particularly at home and with family – when I find myself getting frustrated or preturbed that no one is considering my needs or stepping up to lend a hand (of course, there is always the possibility that my family feels exactly the same way I do – that it is me that isn’t sensitive to their needs. But this is my blog and I’ll cry if I want to!). It could be something as simple as not helping do up a zipper on my coat or taking care of yard work or chores around the house. Don’t they see me struggling with that zipper? Haven’t they noticed the tree debris on the lawn?

Perhaps, since I have always “managed” these parts of my life, there is no sense of ownership to the tasks at hand. Perhaps I have not been as good at delegating or empowering others as I should.  Perhaps the sense of altruism and caring that I’d like to think our family has emparted seems only to apply beyond our front door.  Alternatively, this may be done entirely with the intent of giving me a sense of control, of independence, of ability – to empower me in my present circumstances.

Whatever the case,  I need to be more vocal about how those who are close to me can help out. A tough call to make for one who has been so fiercely independent to date. But it’s also a part of coming to terms with living with PD and the limitations that it sometimes imposes on our lives.