Not Giving Up

I am now 76 years old. Until the onset of neuropathy I had been very active, throughout my life. Competitive running, soccer, golf, and squash were sports I enjoyed. The first realization that something was happening to me occurred in 1995 during my regular walks with my West Highland terrier: other people walking overtook me, and I couldn't keep up with them. Then I noticed the beginning of a foot drop.

My general practitioner sent me to a neurologist who sent me to a senior consultant, who, after numerous tests including a foot biopsy, declared I had chronic inflammatory demyelinating polyneuropathy (CIDP). They tried prednisone, intravenous immune globulin (IVIG), and other pills, but nothing had any effect.

Over the course of two years, the foot drop became permanent and the muscle weakness crept up my legs.  Nothing affected my hands; at another hospital with another specialist it was suspected that the cause was probably in my genes. This has been confirmed recently at McMaster University Medical Centre in Hamilton, Ontario.

As my condition worsened and the leg muscles continued to decline, walking became very difficult until I was fitted with orthotics from knees to toes. I am now on my third set (one every two years), and I can get about with the help of a cane for balance. I have foot pain from time to time as I walk predominantly on my heels as if on stilts.

How do I explain to people what is wrong?  I say "I have a disease called peripheral neuropathy, and it is causing my muscles to weaken progressively. My feet are already without muscles and my legs grow weaker by the month."

I have not given up, and I try to use my feet and legs as much as possible in an attempt to conserve some muscle strength. I will not get a wheelchair until my orthotics fail me.

- Donald P.