Kelly Campbell

I was diagnosed with Kennedy's Disease in December of 1998. "What a Christmas present?" It all started about 9 years ago at the age of 29. I was employed with a mining contractor in Northern Saskatchewan. The mining company I worked for was in British Columbia. They contracted with a company that owned and operated a gold mine in Saskatchewan. I took a course in mineral resources, underground mining, operating a Scoop-tram, haul truck, production mining, and development mining -- pretty much everything to do with being a miner.

When we were Stope mining, we used Stoper drills for rock bolting in the Stopes on drifts. Anyhow, working in that kind of environment, dark and damp, I began to experience severe muscle spasms all over my body. I didn't mention this to anyone of my supervisors at the time and mainly avoided the drilling aspect and stayed on haul trucks or Scoop trams because I knew labor work would take its toll on me as well as the cramps.

I decided I could not be an underground miner because of my muscle cramps and spasms. So I went into open pit mining October of 1995 as a heavy equipment operator -- still not knowing what was wrong with me. I have a twin brother with the same condition as me, except he was determined to find out what was wrong with him -- seeing all kinds of doctors and doing different kinds of testing. Genetics came up with Spinal Bulbar Muscular Atrophy, known as Kennedy's Disease. I had the same symptoms as he, so I went to get tested. Guess what? I have it too.

I was a little depressed for a while, but just threw my Kennedy's Disease on the back burner after I was diagnosed in 1998 -- and left it there until March 2001 when my condition started to progress.

Today I have severe muscle spasms all over my body, severe hand and body movements, my calves cramp, especially when I'm tired, and I get spasms in my neck that affect my breathing and swallowing. I play out easily when walking upstairs. I fall down sometimes. Also, my fingers close by themselves on both hands, not to mention I "shake, rattle and roll". I'm quite embarrassed about it. Especially in front of people. With me, I find if I get stressed or nervous, Kennedy's really affects me in terms of my speech, shaking, and cramping.

I'm 38 years old now. And I'm on short-term disability, pending my neurologist report to my doctor. Also, I do have Gynecomastia, bulbar signs. I am currently taking the medications: Baclofen and Clonazepam.

July 2001- I returned to mine operations, lite duty and from there resumed my original duties. The company trained me on the o and k shovel this was the best and most important job in operations, after I month of training, the mine trainer cut me loose, and wow I was on my own high wall scaling was the most dangerous. Also loading haul trucks, production and good housekeeping; good grade ,cut and fill trenching u name it I could do it with our 2.5 million dollar piece of equipment I sure loved it being a shovel man. I always dreamed of becoming a shovel operator and the company gave me the opportunity. Being the production man that I am I gave mine operations what they wanted, production. I am very proud to say it and then Kennedy's kicked in again attacking my arm and legs and shoulders. I would get so sore that after about 3 or 4 days of 11 hr shifts I was so weak in my uppe and lower extremities I could hardly lift my arms. I was eating my meds like candy so I could continue the job that I loved so much.

May 2002- Well mining came toa halt and there were layoffs. We had more than enough ore stockpiled to keep the mill going for about 2 to 3 yrs, so mining was suspended. The company kept me based on seniority and I was transferred to camp services. This job required a lot of strenuous physical labor but I motored along fairly well. The hardest job was mill feed in the winter months when the ore was frozen it was a tough job no doubt.. Basically, I pushed myself to my limit and beyond. I always wanted to be number 1 and ahead of the ball game lol. Finally on night shift one night, I was climbing down a 16 foot ladder on my way to see the grinding operator cause we had the red light and wanted to find out what the hold up was, and as I was climbing down the ladder my arms and legs gave out due to muscle weakness and the atrophy. I was climbing down and I slipped and fell landing on my back and jarred my neck reasonably good but didn't feel anything until the next day when I couldn't move my neck had to use my shoulders to turn my head. I was kind of freaked out because the last thing I wanted was to pull muscles in my neck. Anyways, now I have severe muscle spasms in behind my neck to this day. I can tolerate any muscle spasms that I get except the one I get in my neck, that's the one muscle spasm that scares me the most cause it totally affects my breathing, chewing and swallowing. It's enough time to make a person think about death not to mention the severe pain that comes with it. I ended up taking medical leave from work .

January 2003- These are the medications my neurologist and doctors gave me since my diagnosis. Every kind of ANTICONVULSANTS MEDS DILANTIN, CARBAMAZIPINE, TEGROLTOL ATENOL, TOPAMAX, MYSELINE ,NERONTIN GABAPENTIN, BACLOFEN. , BENZODIAZEPINES of all kinds and one ANTIARRITHMIRA, MEXITILLENE This med kind of helped a little with all these meds that I tried and kept a journal on them and their side effects didn't help at all just a lot of side affects that made my condition worse. I am truly grateful that I have an excellent outstanding supportive general practitioner. My doctor is the best in Saskatoon as far as am concerned. Although I haven't much to say about my Neurologist sometimes I feel tha neurologists need more medical practice on this extremely rare condition I guess its a hard disease for them to understand reason being that its so rare to pin point all the problems that comes with the disease. I am 40 yrs of age now and still progressing and often wonder what the future holds for me?. My grandpa passed away with Kennedy's Disease at age 57, he got pneumonia and his lungs collapsed and died peacefully back then doctors and neurologists didn't now much about KD. I am most of all grateful to the Kennedy's Disease Association and Terry and Susanne Waite. I will update my story again in 5 yrs time to see how much I progressed.

I would love to hear from anyone with this condition to talk or write letters. Thank you.