Read these amazing patient stories
Debbie Dawson, RN and chronic PN sufferer, wrote this practical, simple guide that can help you work your way through these questions. Make a list for each of the following situations:
“Things I can no longer do. (Examples: Power walking, climbing more than three stairs or steep incline, running a race, driving a car without hand controls, lifting heavy items, standing for any long period, climbing a ladder, holding a job, taking a walking tour, or any major chore around the house).
“Things I couldn’t do before, but can now. (Examples: Have time to write, spend more time with family and friends, spend time listening to teenage grandchildren, have enjoyable dinners with friends, understand the challenges faced by the handicapped and disabled).
“Things I do the same as before. (Examples: Sit in the sunroom enjoying sunsets, watch educational TV, write articles, manage investments and home budget, eat, sleep, read, use my computer and use my cell phone, fish off a pier, watch the deer outside my camper, take pictures, enjoy my dog, help other neuropathy patients, support research).
“Things I can still do, but differently. (Examples: Go to the mall using an aid, walk the dog with the scooter, write using a thick pen, go on an ocean cruise with the scooter, hunt turkey with help and a blind, go camping with automated equipment, drive – but limit driving to not more than four hours, go up a few stairs by pulling with arms on hand rail, stay active).
“Things I can do differently, just not ready to yet. (Examples: Ride the scenic train in Canada, have house modified for handicapped access, purchase a vehicle for the handicapped with hand controls).
With the help of this guide, you can find new meaning and purpose for living. You can go beyond your limitations to a better world where surprise discoveries, new experiences, and new ways of doing things become the foundation for a new brave world beyond limitations imposed by chronic neuropathy.
Coping with Peripheral Neuropathy, How to Handle Stress, Disability, anxiety, Fatigue, Depression, Pain and Relationships; Scott Berman, MD and CIDP patient
The Pain Survival Guide: How to Reclaim Your Life; Dennis C. Turk, PhD, and Frits Winter, PhD
Managing Pain Before it Manages You; Margaret Caudill, MD, PhD
Disclaimer: This Patient to Patient column is intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.