Thursday, August 4, 2011

Seven things I hate about Parkinson’s disease

#7 – Retiring at 35. Some people might think it would be a good thing to leave the work force at the age of 35, and there are times when I would agree. Except for the constant pain and the inability to do much of anything, yeah – not having to get up in the morning and go to work is kind of a perk.

#6 – Not being able to do housework. This one sounds a bit like a perk as well. The problem is, I would like for the house to be clean. Clutter screams at me, especially when it is not my clutter. Clutter barely whispers to Hubby, and I don’t think that the kids hear it at all. This is my punishment for always being in a hurry when I was healthy – I had the “It’s faster and easier for me to do it myself” attitude. There is a window where the kids want to help, but their help is actually more work for Mom than doing it myself. That window closes, snaps shut really, without any warning, and then the window in which they are perfectly capable of helping but they don’t want to opens up, and that’s the window that stays open forever. Or at least until they grow up and have families of their own...
(I need to add here that my girls are helping a lot more now – they don’t volunteer their services, but they can be bribed. Cash is good.)

#5 – “Restless and Exhausted. I hate it when I am too restless to stay in a chair or in bed, but I am too exhausted to get up and do something. This is a dichotomy that causes insanity.

#4 – The constant vacillation between “on” and “off.” I know – the medical jargon is rather tricky to navigate. “On” refers to the state in which my medication and whatever it is that the deep brain stimulator implant does, and you wouldn’t even know that I have Parkinson’s. “Off” is when my brain/body connection is severed, and I go though one of the various states of being that I have come to accept as normal.

#3 - The loss of impulse control. This is apparently a side effect of one of the medications that is helping me to be able to walk when I am “on.” This medication has been shown to create or exacerbate gambling addiction. I am blaming it for my shopping addiction – especially since I have discovered the joys of online shopping. I also had to notify the drivers’ license people that I am on this drug, which led to #2...

#2 – Loss of my drivers’ license. This has seriously hampered my shopping addiction, driving me to the underground world of online shopping, that miry pit – such a tantalising enticement – I just order stuff and they bring it to my house...and:

#1 – The number one thing I hate about Parkinson’s disease is the isolation that it brings. I am not even going to church because of the dystonic muscle spasm attacks that I experience almost every morning. The only thing I can do during these attacks is to lie in bed (if I am lucky – otherwise the floor) and just wait it out. Sometimes they last a few minutes, but often a few hours. A group of my friends from church invited me to go for breakfast with them one morning, and I really tried. One of the ladies came to pick me up and I managed to get dressed and put on make- up, but then the spasms started again. They only lasted only a few minutes, so my friend waited, and then I got up – and they started again...twice. I eventually had to give up and just stay home.
And now my voice is affected, so that sometimes my speech is halting, and sometimes it is gone altogether. This makes phone conversations almost impossible; especially when I call my friend who also has Parkinson’s and has the same problem with her voice. Our conversations would be hilarious, if they were not so exacerbating.
That is my rant for today. Thank you for reading. I must add that the symptoms come and go, in a daily cycle, and most days I have several hours when I have hardly any symptoms at all. But it is a nasty disease.

1 comment:

  1. I can't even imagine. Thank you for the insight into your days. I remember how little your girls where when this all began. And now your baby is in Grade 12??? How did that happen. In spite of all they had to do without - things you just couldn't do as a Mom - they have turned out to be lovely girls. You are a treasure for sure. Love Susan