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1 Jun 2005

Understanding PC

Not too long ago, Mary, our PC Project Director, asked our friends with PC if they had any ideas to help friends and family understand PC. One of them sent a little “exercise” which I thought was terrific, because it truly is so hard to help people have a clue of what it’s like to have PC. And maybe, others don’t really need to understand, but I think sometimes it helps for people close to you, who are going to be in your life for a significant amount of time, to at least have some kind of understanding. So thanks to this fellow PC friend, who told me I could publish it here.
“An Exercise In Understanding The Restrictions Of PC”
Pick an average day to try this exercise.

You will need: A pair of sensible, flat, thick soled shoes and a pedometer/step counter (or a good memory!).

Rules:
1. You may only walk a total of 500 steps per day
2. You may only stand for up to 20 minutes per day in no more than 5 minute lots.
3. For every solid hour you can stay off of your feet, you may add 50 steps to your total for the day.
4. You are not allowed to tell anyone, other than your close family and friends, what you are doing.
5. You must avoid uneven or rough ground.

Hints and Tips:
Try and park as close as you can to where you need to be, this may involve getting to work or shops earlier than normal to try and get a better space.
Go to smaller shops or order shopping to be collected or delivered.
Visit banks/post offices etc in off peak times to avoid queues.
Take a packed lunch to work to save having to go out.
Slide around on chair to filing cabinets/printer/fax etc.
If you have to get up, think what else you can do at the same time.
Ask others to pass things to you or deliver things for you.

Remember, this is just a lighthearted game, but if you can't do it, then neither can we.

Thanks PC friend for sharing. And as this friend noted to me, the distances and times in the rules may be different for each PCer as our symptoms vary. The only thing I might add is a Rule #6 - All standing, walking, and excess sitting is done with constant pain – and the longer you stand or walk, the more intense the pain is and the more likely you’ll face even more pain, plus blisters and possibly infections later on as a result. But really, we wouldn’t wish that pain on anyone – even if it would help them understand PC better.

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