Thursday, September 20, 2018

Post Parkinson SuperWalk



The Parkinson Superwalk 2018 is all "Done and Dusted" for another year. No more walking around my neighbourhood with a clipboard - as my neighbours all breath a sigh of relief! I got more walking done getting sponsors than I did at the walk itself.

For most of my neighbours, that is the only time of the year that I come knocking on their doors. It is kind of sad that I don't know most of my neighbours, can anyone relate to that?

My grand total for this year's campaign was $1900! My goal was $1000, so I was blown away by the generosity of my friends, neighbours, my huge extended family, and my husband's co-workers.
Fortunately, my Mom's family still gets together for a summer BBQ in August, just before the annual Parkinson's fundraiser Walk, so my aunts and uncles and cousins all come ready to pass my clipboard and envelope around the circle.

I am sorry that I did not take any pictures to post.

A huge thank you to Cyndi Toews for walking with me. I have to confess: we didn't get even the short course finished. We got back to the parking lot where I left my poles, and by the time Cyndi and I got back to the starting point for the short course, I was too exhausted to walk any more. Some speedy able bodied walkers were just coming in, so we joined them making their way back to the courtyard. Good thing it isn't a race.

We had beautiful weather: cool and overcast, but not raining or snowing. This is Manitoba, and we never know what type of weather to expect in September - could still be hot, or raining, or snowing.

Hope to take part again next year.

Friday, August 31, 2018

Parkinson SuperWalk 2018


Dear Friends;
                                                 
Thank you for helping to blast past my goal of $1000!

Are you ready for this? I am astounded by this number!

My current final total: $1,900.00!!!

Planning  to walk with me?  Join me Saturday, Sept. 15
at the Canadian Mennonite University, 500 Shaftesbury Blvd in Winnipeg.  
Registration starts at 9:00 am, the walk at 10:00. 
You don't have to register, or do any fundraising. If you want the t-shirt, then you do need to register and raise at least $50.00.

Contact me if you would like to preregister to walk , or if you have any other questions.
Check out My Personal page for an up to date list of all the wonderful people who are helping me to help fund the research into better treatments, and maybe someday a cure for Parkinson's disease.


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More Days
See you next year!


Please Note that the image below is a screenshot of my fundraising page. The links are not live. Use the link above


Saturday, August 25, 2018

This is Karen's brain at night:


[This is an unedited blog post that I just noticed in my rapidly expanding "Drafts that should never be sent" file. I thought, just for fun, that I should share this episode of  "What Karen is writing late at night." Enjoy the glimpse into my brain: . ..]

I'vllllldllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllll\llllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllllll///////////



[I'm thinking that I don't do my best writing at night anymore!]

Original text, written by me late one night in April, 2018, finally posted instead of deleted like I usually do with posts of this quality and craftsmanship, on August 25, 2018.



























































































































































































































































































































































































































































































































































































































































































































































































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Wednesday, May 2, 2018

A Day in my Life – February 15, 2009



Every now and then I fire up my Way-Back Machine (the data that survived my thlrd great laptop melt-down). It's in a file on my desktop labelled, oddly enough, "Karen's Keep". I mine it for gems like this blog entry from nine years ago.



A Day in my Life – February 15, 2009
My typical day starts around 3 or 4 am when I wake up from the pain of restless leg cramps. I get up, walk around a bit, and then I usually work on the computer until about 7. Then the dystonic cramps start, usually when it’s time to get the kids up and ready for school. For dystonic, think “stone”. It’s like human pretzel syndrome. My toes curl under, my feet curl inward, my left arm goes up, my back and neck twist, and my right side goes down. The pain is excruciating. If I am carrying anything like a bowl of oatmeal or a cup of coffee, I have to be rescued.


As soon as the kids get picked up by their carpool, I crawl back to my bedroom (literally!) and pull myself up onto the bed to lie down until I untwist, usually about 45 minutes. If I have managed to make coffee that morning, I try to pour a cup and then push it in front of me while I crawl. Then I have a few good hours when I can work on the computer again, or crochet, or if someone takes me, I can do a bit of shopping. I can walk almost without pain.

Then about 5 or 6 in the evening I start shutting down again. My left side drags. I usually manage to make supper, but the kids have to do the dishes and housework. This is almost more work than doing it myself – just a matter of being emotionally difficult instead of the physical pain of trying to do it myself. I spend most of the evening in bed, and when the kids get to bed around 11, I take sleeping pills to get a few hours of sleep. Then rewind to the beginning of the paragraph and repeat.

Right now it is 4:45 am, and I have been up since 3. My neck is starting to twist already, so hopefully I can get back up the stairs and get to bed. Today is Saturday, so I don’t have to up early, but my body doesn’t let me sleep for long.

It’s not the life I would have chosen for myself, but it does have its perks. My usual line is that if weren’t for the constant pain and the inability to do much of anything, it’s not such a bad life. I get to stay home; I have indulged in some luxury items like a jetted tub and an ultramatic bed that healthy people usually have to wait until they are elderly to buy.


It is amazing to think that I have been living this way since that long ago. I am getting more sleep now that my doctor has found a medication that eases those restless legs at night, and I no longer have to get the kids up and  ready for school. Instead, my mornings now start at 7:30 when my home care worker brings me breakfast in bed. I have discovered that I have fewer dystonic mornings when J get some food in my stomach before I take my 8:00 meds and then stay in bed  until the meds kick in, usually by 10 or 11. And I still say that if it were not for the constant pain and disability, it's not such a bad life.


Saturday, March 3, 2018

Impulse Control and Parkinsons



Mirapex was the first drug I was prescribed after my diagnosis as "Parkinsonian". It was a relatively new drug back in 2005 when I started to take it. One of the known side effects was lowered impulse control for people with problem gambling. I told the neurologist I don't gamble. I don't even buy lottery tickets. (Lottery tickets are a way for the government to get poor people to pay extra taxes. IMHO).

When I started on Mirapex, I didn't get a sudden urge to go play Bingo or buy a lottery ticket. But when it came to behaviours I already had impulse control issues, like shopping I think that the drug has made it much more difficult to control myself.

My husband says that I have always had a problem with impulsive shopping and he is right. I can't count how often I have come home with a new dress or earrings or something. I would tell him my side of the story: how the dress attacked me as I walked by the store. Those bright red "SALE" signs would lure me in, and then "HieeYaah!!!" The dress jumped down on me, grabbed my credit card right out of my purse, and dragged me to the cashier.

After taking Mirapex, I am sure that these attacks got worse. Fortunately for me, I wasn't actually getting to the stores as often, because I had to surrender my drivers license. (Mirapex has to be declared when you renew your license, and my driving abilities were also at risk because of the other symptoms of Parkinsons). But then I discovered online shopping!

Wow, what a world we live in. I can buy dresses from a factory in India, and they come right to my door! I had better stop writing this, my fingers are itching to go to Cyber India. Cyber India is nice anytime of year. Not too hot or too cold, just room temperature. And I can go there in my pyjamas.