Friday, September 28, 2012

It's Friday, but my days are all the same...

The Problem with being on disability...

     Is that you don't get holidays or week-ends off. I do occasionally ask Derek if he can take on my pain for me for a day or two, and I'm sure he would if he could...but I know that this is my row to hoe, my river to cross, my lot in life, my cross to bear...I can't think of any more metaphors.

     In Michael J. Fox's first autobiography, "Lucky Man" he uses the metaphor "Everybody's got their own bag of hammers." I don't quite get that one...

    I've got a garden metaphor, even though in real life I hate gardening, but here goes:

Everybody in this life gets their own pile of ... ahem... manure
dropped into their backyard (remember, it's just a metaphor).
What you do with it it your choice.
You can sit on your pile and complain about the smell.
You can look around and compare your pile to everyone else's pile.
You can live in denial and try to ignore the smell.
Or you can spread it on the garden and grow some flowers.


Thursday, September 27, 2012

A Day in my Life

I had planned to make this an ongoing daily post to let people see what life with PD, particularly Young Onset PD; and the hourly changes in what we call 'clinical states'.

Allow me to define some technical terms:

  • on: meds are working at the best I can expect; best of my new normal.
  • off: meds not helping. There are many clinical states that rotate to make my life more interesting. (YOPD is a fascinating topic to study, I just wish I didn't have to learn about it this up close and personal).
  • Dystonia: horrifically painful muscle cramps. Think charley horse pain, multiply it tenfold, then imagine it taking over your whole body and lasting for a few hours.
  • Dyskinesia:  involuntary swaying, dancing (kind of like a potty dance). This state is a side effect of medication.

7am - Woke up to my pill alarm. Took meds (11 pills).  Thursday mornings I don't have any scheduled help, so I had to get my own breakfast. 
10am - Good morning so far. I often have more dystonia when I am home alone, probably because I know it is up to me to feed the critters (and myself) and let the dog in and out.
9pm: Forgot about updates all day. Too much stuff happening in Canada, glued to the CBC news all day. No extreme PD symptoms all day. 

Tuesday, January 17, 2012

How do I feel?

I was at the Movement Disorder Clinic in Winnipeg today to see my DBS (Deep Brain Stimulator) technician, and got a little lecture about not making the most of the technology that they put in my brain. Her job is to adjust the settings and the parameters that I have access to with my remote. My job is to experiment within those parameters, and then report back the results.

I do keep a medical journal, and you would think that since I spend most of my waking hours at this computer, that I would be more disciplined with updating my status a few times a day, but if you thought that you would be wrong.

How do I feel?  Is the medication helping? Is the DBS helping? I know that I am the only one with the answers to those questions, so why are they so hard for me to answer? 

It seems like I have been living with these symptoms for so long that they are normal to be. Not that they are not painful and debilitating, but I have just become accustomed to them. Like the saying goes: "You can get used to wearing a twenty pound sack on your back, but it still weighs twenty pounds." That reminds me of my purse...