From the Editor
The PRP Survival Guide is designed to be a repository of experiences and insights shared by PRP patients and their caregivers. Collectively, the PRP community possesses a wealth of practical knowledge about pityriasis rubra pilaris. Only we are best positioned to harvest that knowledge.
Share what you have learned about PRP and mobility. Share articles you feel might be worth reading or websites worth visiting. Here is the first question we ask.
In what ways has PRP affected your physical mobility?
Bill McCue (Plano, TX)
It was bad enough to be bedridden for awhile. Then one day I ventured out of the carpeted bedroom and shuffled across dark hardwood floors leaving white flakes and dust in my wake.
Weeks went by and I ventured out the front door and felt the cold air of winter.
But the first time I was driven to Walmart I needed one of those scooters. It was a defining moment for me. The scooter wasn’t going to be a crutch.
But for nearly a year I did use a handicapped sticker. It was very helpful to get close to the entrance of Walmart or any store for that matter. I kept looking at the date on the sticker and wondered if I should get it renewed in October 2013 — 14 months after onset.
When the time came I didn’t renew the sticker. I added the retirement of my handicapped sticker as a Healing Milestone.
My advice: If it helps, get one. When you don’t need it, get rid of it and do the Happy Dance.
Pam A (Devon, England)
“My balance has been useless with PRP.” Comment. 01/13/2020. Editor’s note: “I never thought of BALANCE as an element of impaired mobility. Learn something new almost every day. Thinking back (circa 2012-13) the balance impairment wasn’t in my head, it was a reaction to the sensitivity of my feet. Even today, I walk fine in my walking sneakers but almost hobble barefooted on hardwood floors. It was the same — but worse — during PRP.”