My Story:

Graham Long

Although his PC has been a lifelong challenge, Graham Long is moving forward with his goals.

My name is Graham Long. I am 50 and have had PC all of my life. It has not been easy. School days were difficult, people continuously asking why do I walk with a limp and “what’s wrong with your nails?” and “what’s that on your hand?” Worst of all was being asked to leave a public swimming pool when someone noticed my feet. In fact another boy’s mother went to my school complaining that her son might catch PC off of me!

My PC-K16 has not improved in any way. My hands aren’t great at the moment and I have had a few infections caused by Acetretin. I find that Acetretin helps for a while but I have to stop when the blistering gets bad and I end up on yet another course of antibiotics. So nothing’s changed really. I ought to lose some weight but I’ve decided to just enjoy myself, my feet are knackered as they have been for 47 years (since birth) and I have resigned myself that I will have PC until God takes me.

For the past three years, I have been studying the Knowledge of London, one of the most difficult and grueling subjects you could imagine. I thought that being a London Taxi Driver is something I wanted to do more than anything (apart from curing PC) and the studying and training was far harder than I thought.

I ended up travelling 32,419 miles on a moped (in all weathers), had 15 appearances (oral exams) in front of Knowledge of London examiners, learned 320 basic routes off by heart, and an additional 150 other routes, found approx. 12,000 points of interest, passed an advanced driving and wheelchair test and learned 146 suburban routes. Did I let PC stop me? No! It may have slowed me down from time to time but I got there in the end.

So if you or any PCers come to London you can have as many free taxi rides as you like!

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PCers have a great attitude

It is "do all you can, as long as you can despite the pain!" We definitely cheer that approach. However, stories from young PCers (those age 12 and under) who have mild plantar pain and few cysts or other PC symptoms may seem to show you can just be 'tougher than PC.'  That approach is not the most effective, since when full grown, PC pain will increase to the point that being tough isn't enough. It's important that youth develop and find 'off the feet' activities and skills. Most PCers are very, very high achievers and find a way to excel although PC pain has a definite impact on quality of life. That's a whole story in itself!

Jan's Corner

The "Living With PC: Jan's Corner" posts from 2003-2012 were very popular and are now accessible in the Living With PC Archive. You may read individual topics or use the free download link for the complete collection of Jan's Corner in E-book formant. Also, these posts are indexed and available on the PC Wiki so you can search for a specific word or topic. You may also Connect With Us to order a printed bound copy of the blog.
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