Linda here - I've known of Brian Christie for many years through letters from his parents, Mabel and the late Charlie Christie, but I've never really heard Brian's entire story. I found it fascinating. I think you'll agree Brian is one stubborn, gutsy guy! He spoke to me by telephone from his home.

He's got his life back!

Brian Christie, 51, of Nova Scotia, Canada, is a husband to Linda, the father of three children (two girls, Rhonda and Kathie, and a son, Robert) and grandfather of three grandchildren, Chris, Cassandra and Holly.

When diagnosed with CMT 20 years ago, he was working as a diesel mechanic and had worked until five or six years ago.

How did his foot problems begin?

I had plantar's warts originally and I couldn't feel them. I had no feeling in my feet and in order to get rid of them they had to be cut out. When they cut them out, thanks to CMT, I didn't heal. Nobody had put a name to what I had, so they didn't realize that I might not heal well at the time. The incisions didn't heal; in fact they got bigger and I developed large open ulcers that I walked on for 18 years.

How could he stand the pain!

I have a pain tolerance that the doctors say is ten times that of the average person and I've lost all feeling in my hands, legs and feet. The treatment was painkillers and antibiotics. The surgeon who did the work on the open ulcers told me that he would have been in a coma if it had been him. The intensity of pain was so great that it likely would have hospitalized me instantly, if I could have felt it.

How did he live with open ulcers on his feet all the time?

My feet were always bandaged... for 18 years. I'd come home from work, take off my safety boots, cut off the bandages, wring the blood out of my socks, clean up my boots, and rebandage my feet for work the next day. If you can't feel what you are walking on or you can tolerate a lot of pain, this is hard to believe but possible.Quitting wasn't an option. I had a family to look after and I had to do something!

What finally stopped him?

Finally, I began to feel the pain big time. The painkillers I took weren't doing the trick and I couldn't do my job safely. I was working on huge tractor trailers and you can't take those on the road and not be fully in control. You've got to have all your marbles for that!

By this time, maybe 15 years ago, I went to apply for Canada and provincial pension. I had been diagnosed as having CMT Type 1 with what my doctor calls a "Wild Card"... my CMT does things it isn't supposed to do. My doctor, Joe Dooley, has researched this disease for many years and is still at it as far as I know. I have extremely limited sensation in my hands, lower arms, lower legs and feet. I'd say, I've lost 90% of the sensation in those areas and 80% of the strength.

I got into an argument with a table saw three years ago and cut off four fingers. It took six hours for surgeons to sew them back on. I only had one shot of morphine and that was immediately after I did it. I had general anesthetic while they managed to sew three of them back on but I couldn't feel much of anything when I first cut them off. Fortunately, I have about 90% movement in those fingers although my hand is very weak.

From the beginning, when I first developed open foot ulcers after the plantar wart surgery, I was running back and forth from the hospital three times a day to have the ulcers packed and my dressings changed. Needless to say, there was no time for anything else with the hospital and work. Then the doctors showed me how to change my own dressings but insurance wouldn't pay for the bandages. The cost was about $350 a month. I finally bought them from a medical supply outfit and did them myself.

I tried to make the provincial health people see that going to the hospital three time a day, 31 days a month, cost them far more ($3,000 to $4,000 a month) than it would opposed to just giving me the bandages and letting me do it at home. They said no, they didn't want to set a precedent. Four years ago, the government began paying.

To close these open wounds, they gave me every type of oral and IV antibiotic known to man, along with hyperbaric oxygen treatments which was a big waste of time. The IV antibiotics made my veins collapse so they installed a Portacath, a permanently implanted catheter, in my chest that lets them put a needle into it without interfering with my veins. The drugs didn't work although they damaged my stomach, my liver and kidneys.

Twice they tried skin grafts and they just fell off. I've tried home remedies, just everything. Anything anyone told me, I tried. I had nothing to lose.

In September of 1997, I woke up one morning and was walking from the bedroom to the living room and my son asked me, "What's with the blood?" I took off my sock and bandage to see what was happening and apparently I had an infection so bad that it had literally exploded the end of my foot. The skin was all off.

I went to the hospital and the surgeon looked at it and admitted me to try a course of antibiotics to see if he could control the infection. Five days later he said he couldn't, that amputation was my only option. At that time he didn't know how much he would have to take off. I still had these big ulcers on the sole of my foot.

He amputated right behind the ulcer on the ball of my left foot. It was called a forefoot amputation. He left the amputation open, put a couple of stitches in each end and the rest was packed with Kaltostat, a seaweed dressing. You could actually see that stuff drawing the infection out of the rest of my foot. Within three months my foot was totally healed over, the first time in 20 years. I can actually sleep without a sock on!

The right foot was worse. Between Christmas and New Years 1997, the open ulcers got infected. I went to the doctor on Jan. 2, was admitted to hospital the same day. The surgeon took one look at my foot and told me it was gas gangrene and he didn't know what he could do with it. They couldn't amputate because of the gangrene but they did operate on that foot to try to clear the gangrenous tissue. It took three months for it to heal although it still had the open ulcers. All they did was remove the gangrene. Three months later, March 1998, they did the same procedure on the right foot that they'd done on the left. I was walking on it three months later. I was even walking around a campsite, up and down hills.

After 20 years, they finally described the organism they couldn't identify in the swabs they had taken of my ulcers for so many years. Apparently, it takes four or five organisms combined to create gas gangrene. The one element that was missing was in this right foot. When they had my actual forefoot in their lab, after the amputation, they found the element they needed to confirm the diagnosis of gas gangrene. To look at me today, and if I had on a pair of boots, you'd think I had nothing wrong with me but one finger missing. In reality, I have both feet partially amputated, and I can't feel anything from the knees and elbows down although I can move those areas. The major things that are wrong with me just don't show.

How does Brian feel about the amputations?

No problem. Best thing that ever happend to me! They have allowed me to get up and move. There is no more bleeding, no swelling and a whole lot less pain. I can sleep in my bare feet (I wore socks and bandages for 20 years) and I can get on with life. The only thing I can't do is swim because of the Portacath in my chest. I could tear it lose. It has been almost a year and everything is fine.

I was offered prosthetics to replace the parts of my feet that are missing but they wanted $1,400 apiece for them. So, I buy a pair of high-top sneakers, stuff the end of the sneakers with gauze bandage, put 'em on, tie 'em up and walk. I use a cane for balance sometimes. I have a wheelchair and a walker and a ramp on my house that I fought for years to get and a bathroom specially made for me all done through grants I had to fight for but I'm doing okay, I'm stubborn.

I've never used my CMT as an excuse. It is not an excuse. To me and my family it is an inconvenience and that's all it is. We're doing fine.

My wife, Linda, is a personal care workers (PCA) and has worked in nursing homes all her life. She takes all this in stride, but without her, I wouldn't be where I am now. I don't think she realized the marriage vows included what she's been through. I love her so much!

My family doctor, Dr. Yvonne King, has kept me alive. She is incredible. The two surgeons, Dr. Ralph Burnett and Dr. George Sanson, and Dr. Walter Shlech, head of the infectious disease centre for the Maritime Provinces, and Dr. Joe Dooley, the CMT researcher, are all to be highly commended. If it wasn't for them I wouldn't be here. To me, family is everything, without it nothing else matters. I hung on for me and for them. Failure was not an option and now things are good.