CMT Man with rare disease plans walk to Toronto

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Man with rare disease plans walk to Toronto (photo at link)

http://www.durhamregion.com/dr/regions/durham/story/3928584p-

4540079c.html

By Hatfield

DURHAM -- He's unsure if he'll even finish, but Larry O'Leary, who

has suffered his whole life, is attempting to walk from Clarington

to west Toronto.

" I guess the bottom line is, I know I have a disease that will put

me in a wheelchair, a disease that keeps me in pain 24 hours a day,

but I want to raise awareness about it among the public and medical

professionals, " said the Bowmanville resident.

Mr. O'Leary suffers from Chronic Inflammatory Demyelinating

Polyneuropathy (CIDP), a rare disease of the peripheral nervous

system that causes gradual weakness and loss of sensation in the

arms and legs.

" My walk will hopefully bring attention and raise awareness about a

disease that even a lot of medical officials don't know about, " he

said.

But, Mr. O'Leary's story starts long before he was diagnosed with

CIDP. He was born with Charcot Marie Tooth (CMT), an inherited

neurological disorder that affects the nervous system. Over time it

causes the loss of muscle strength in the feet, legs, hands and

diaphragm.

" When I was a kid I was always tripping over my own feet, " Mr.

O'Leary said.

It wasn't until Mr. O'Leary was 40 years old that a neurologist was

able to diagnose him with CMT. The disease isn't fatal and Mr.

O'Leary continued to make his way through life, running a drama

school in Pickering for 10 years until one morning, in 1999, he woke

up and was unable to move. His son got him to a hospital, but the

doctor sent him home. The following morning he awoke unable to even

speak. He spent six weeks in Toronto Western Hospital, unable to

move until he was sent to the Lyndhurst Rehabilitation Centre.

" I literally had to learn to walk again, talk again and write

again, " Mr. O'Leary said. " Everything people take for granted. "

He was diagnosed with Guillain-Barre Syndrome (GBS), an inflammatory

disorder of the peripheral nerves, that causes the rapid onset of

paralysis of the legs, arms, breathing, muscles and the face.

" It is probably one of the toughest diseases to diagnose and there

are probably a lot of people out there who have it and don't know, "

Mr. O'Leary said.

In 2005, a specialist in London, Ontario, diagnosed him with CIDP.

It's similar to GBS except most people will recover from GBS while

there's no cure for CIDP.

In Canada there are only 578 registered patients suffering from

GBS/CIDP, diseases listed under the group of muscular dystrophy.

" My muscles are weak, my balance is shot and I have no feeling from

the knee down, " Mr. O'Leary said.

Despite these obstacles, on April 3, Mr. O'Leary's 67th birthday, he

will attempt to walk from Bowmanville to the national conference for

GBS/CIDP at the Delta Airport West Hotel on April 21.

" If I pace myself, hopefully I can get somewhere, " he said. " If I do

complete it, the walk will take me from the 3rd to the 20th. "

Mr. O'Leary leaves the Bowmanville Town Hall at 9 a.m. He said the

Clarington fire department is escorting him out of town and he hopes

that when he gets to Ajax friends and family will come out to walk

with him. According to Mr. O'Leary, there will also be

representation from the offices of Durham MPP O'Toole, Bev Oda,

Durham MP, and Keast, director of the GBS/CIDP foundation when

he starts off on his journey.

For more information about GBS/CIDP, Mr. O'Leary's walk or to make a

donation visit www.larryswalk.com.