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.