Biography of Bill Forrest
as of 1998
As a young boy I was always very active doing kid things, playing and having fun. Every day was full of activities with friends and family. We would go to our cottage in Tweed, Ontario and go boating in the tin boats and go fishing from the end of the docks. Watching nature around us, I loved life and all the adventures!
My mother say's Little Bill was a sick kid, though! Even though I was always active and busy, I had unexplained high fevers and also had an unidentified illness that kept my eyes closed for two weeks. She said it was scary. I was hospitalized a few times with fevers that they considered a bad flu. No one really knows what other symptoms were apparent as no one ever really kept good records at the time.
I always disliked cold weather, though, or anything that would make me cold, such as swimming in cold water. I was always the first one to complain if it was the least bit cool. I would back out of swimming and skating when I was a kid because it made me shake, and get sick. I didn't consider this inability to skate or swim in cold water much of a problem, though. Watching everyone from afar didn't upset me. I never thought about it, for I was interested in doing lot's of other things, and my attitude, was, and still is, to just get on with it, do what you can and if you can't do one thing, find something else that interests you.
I was in and out of the doctor's office as a youngster though for Strep throat, or so they thought. It was one prescription after another. I always seemed to have flu's and throat infections along with possible pneumonia.
"Skinny" is a word that I learned to hate! I was constantly being reminded of my physical appearance and was always being told to eat more. I weighed only 100 pounds at the age of 13 but I wasn't concerned about it. I could do work that my friends could not, for my strength was never an issue. I could carry our 15 hp motor to the boat and place it on with ease, that was after pulling the boat from the barn down to the water! So although I didn't like being skinny, or being reminded to eat more, I just shrugged it off. I certainly ate enough, and, in fact ate like a horse!!
I grew up working. It was part of our lifestyle. We were expected to work. My brother and I were trained (or brain washed?) by my uncle at a early age to help with all forms of up-keep around our house and apartment buildings. My father and my uncle own property, and we grew up the sons of land lords...expected to help out every single day. It was their influence that helped develop my personality and skills. I'm a painter, rough carpenter and plumber, just about anything that could be fixed, my brother and I would learn and do it, even as young kids. We worked anywhere from an hour to several hours a day, every single day of the week. I think it helped forge good habits.
I started painting at the age of 10, I think. At 15 I got a job as a bus boy, in a local hotel and I worked long, extreme hours part-time until I was promoted at the age of 18. I was then working in the bar as a bar runner and still as a back-up for bus boy. The jobs entailed lifting tables, plates of 40 or more and carrying 2 cases of beer on my shoulders as I made my way through a crowded bar to restock the fridges....very physically demanding work, long hours and still going to school full-time, of course, and helping out at home. I would often go without sleep, at this point in my life, so that I could spend some time socializing. My busy work and school schedule didn't allow much time to hang around with friends, if I "wasted" time sleeping! I really pushed myself and when I look back, I don't know how I did it, how I coped with such a heavy schedule, but, I did.
At 18 I applied to Algonquin College and I studied to become a architectural technologist, which seemed fitting work for I had a lot of base knowledge and a keen sense for problem solving (a little pat on the back, here! ). I still worked, painting as well as at the bar, and having a good time when I could! I was young and invincible! I spent money like water! Nothing seems to have changed except I found out I'm not invincible!
It was at this stage of my life that my appearance began to bother me. I was only 130 pounds and couldn't seem to gain an ounce, no matter how much I ate. I had friends who were bouncers at the bar where I worked and they convinced me to join a gym. The first step to improving the body or so I was told, by my doctor, who at the time helped with the Ottawa Rough Riders training, was to work-out properly. I was shown all the tricks and how to do the exercises correctly. I was also told, "when in doubt, eat", and so I did just that. I continued the gym for years, getting stronger and a bit bigger. My friends were confused as to why I was not getting bigger, though, so they blamed it on the diet saying I should eat more...but, I just could not put on much weight. If I could have eaten more, I would have.
By the time I was twenty years old, I was into the second year of college and I left the bar for a steel job. The job was crazy, walking on beams and joists 40 feet up with no safety lines, stupid! It was not that the bar wasn't good for me, mind you, but I found work in a field that suited the course I was taking, and that was very important to me. I still went to the gym and saw my friends and I still continued to work-out very hard. And, of course, eat. It is funny but in looking back, I must have eaten hundreds of chickens and pastries! Still, I didn't gain an ounce...and I tried and tried and tried. I followed a strict gym routine. I'd work out 6 day's on and one off.....then the second time around...I would take 2 day's off. I'd rotate this routine. Every workout included chest and shoulders, legs and calves, triceps and abs, and they even had me doing the pull ups with a 25 lb plate tied to me. I ended up weighing 150 pounds after 3 years.
For the next 2 years I continued college and worked painting and various little jobs, such as designing houses. I had fun with new-found friends and continued the gym. I would never give it up, it was now a part of who I was, even though I didn't get any bigger, I enjoyed it. I loved water skiing and skateboarding, and working with my brother. Life was going extremely well.
I graduated in 1986 with a technology diploma and found work with one of the professors, Ovidio Sabrissa, an architect. It was excellent and I worked long, hard hours to prove myself. I once worked 15 hours a day every day for 5 months straight! I loved it. My life was changing, I had my first apartment and new car. Things were going very well for me, my work was displayed in the national art gallery later in 1989 and I was on top of the world. I worked with Ovidio for 18 months, then, had to find work elsewhere. However, Ottawa is like a "network" so I wasn't out of work for long. I worked with Minto, Master crafter, Barry Panofsky and, on the side, was doing work for their other friends in various firms. Finding work was never a problem. I worked, painted, and spent at least two hours a day at the gym. I was indestructible, invincible, you see! Nothing would slow me down, I pushed myself very, very hard and enjoyed my life tremendously!.
Throughout the years I ignored the warning signs, I never took notice of the physical signs that were cropping up, I marginalized or explained away the physical symptoms. For example, I would have episodes consisting of deep chest pains and night sweats, but, I "explained" away these attacks by calling them "panic attacks". The night sweats started when I was 19, but I "explained" them away telling myself they were only a flu or something. I had a repeat of throat infections, and the flu was always getting me in early September. I can remember getting my wisdom teeth out, it took me a full month to get better!! It was a whole month of extreme shakes and the flu. I seemed to get sick very easy, but I'd take Tylenol and various shelved items to cope with the symptoms and chalk it off to the flu, or a "panic attack", and I'd ignore it and go on. Did I think of myself as a "workaholic"? Nope. I just got on with it.
In 1989, I was offered a teaching job. It was over one of the long weekend's before school started and I was at my sisters for the day. Her neighbour came over and talked to me explaining he was short a teacher, and he knew of me and my work through my sister and the simple deck design I did for her and would I be interested? Would I? I was delighted! I was teaching by mid week and had resigned my other jobs in Ottawa.
I thrived on hard work. I was teaching and at Queen's University getting my qualifications at the same time. The first semester is very memorable, for I had one class and was now living and working in Kingston. I found another part-time job with an architect and engineers while teaching and going to Queen's. I was always pushing to do well. I even found a local gym and joined, and it was here I met my wife, Tunde. I was on top of the world. In love, teaching, working, going to the gym. It was wonderful and the first few months went by. I was doing the usual work and having fun. And then, I fell sick, very sick and I didn't understand why. The doctor had me tested for mono and hepatitis along with various other tests.
All the results were normal for me except for liver elevations. As time went by after seeing specialists at the hospital, I came back to life and felt much improved. It was a good 6 months of illness, I had to stop the gym, which caused me to weigh in at 126 lbs by January of 1990. I was devastated with this, for I lost over 20 lbs in mass, in only months, meanwhile I was still teaching and doing the architectural thing. I didn't stop for a sick day. I was glad to put the illness, whatever it was, behind me, and get on with my life!
I went to work looking like death, but I had to push through this.
As time went on I got back to the gym and started suntanning to get the yellow look off me. I still did not have any information as to what just happened. Some doctors thought I was gay or a drug user, this made me mad for they were stereotyping me! I had even stopped drinking all together at that time, not that I had ever drank a lot, in the first place. So as the year ended I was into the gym and going full tilt, but with a small twist, I had lost some stamina. I had to adjust my routine to a lesser endurance. I went to a 3 day on and 2 day off and every second time I took 4 day's off.
Something weird was happening.
My routine never changed for the next year. I found a friend who liked working out at the gym with me because I pushed him to work as hard as he could! We would joke about going into competitions. He nick-named me the "illustrated man". That name stuck with me for years, for all my muscles were so visible during a work out, people thought I was getting ready for a competition. They always found me with food and milkshakes loaded with supplements. A typical shake would include 4 eggs, 3 cups of milk, one banana, ice-cream, and 4 heaps of some powder (usually a mass builder) averaging 2000 calories per shake.
Life goes on, and I did just that. I was doing the Queen's courses and teaching. But I was feeling sicker and sicker. In 1991, I was determined to find out what was happening to me. I seemed to have developed a pattern of getting sick, like the flu. It was a strange thing for me. I had a steady routine of working full-time teaching now because of the capacity of enrollment in my classes and I continued doing the gym thing.
But I needed help and so I talked to Doctor Langley..
I had graduated from Queen's in two years and was now on a straight road, with lots of new and great things happening around me. During all this wonderful life stuff, I was asking my doctor how we can figure out why I seem to be losing some endurance. I was starting to get more tired during a day and at the gym, it was everything was becoming more and more of a challenge. Nights sweats and headaches were a constant battle now, I took lots of pills for pain. And the aches in my legs were new. After the gym, I would get sick, usually the next day, like the flu. It was a total body thing so my wife and I nicknamed it "a total body break down". Even thought this is what was happening to me and I would get run down so fast after the gym, that still didn't stop me from trying to keep it up. I was sure I just needed to "work through it". I was sure working out was a good thing. Now, I wonder, was it really a good thing, or stupidity? Or stubborn pride? They say we have to keep fit for long life. And, I believed that.
But, I kept feeling sicker and sicker. Why wasn't it working for ME?
I had more testing done and was seeing several doctors at the Kingston General. It was during 1991 that a Dr Dewar found a raised muscle enzyme. This opened a new chapter for my wife and I and we became interested in biochemistry. I was a guinea pig for testing, or at least, that's what I felt like it. I continued to get increasingly fatigued after the gym and had to reduce the routine again. At this time I was scheduled to have a muscle biopsy. All the information to this point was normal, except the ck levels which were marked at 3300 or so during a "flu-like episode", or "total body breakdown"..
The muscle biopsy was done and sent to three different places, Sick Children's Hospital in Toronto, Dallas, Texas and Kingston General Hospital.. I continued as normal, but began to experience more symptoms, twitching and extreme ill episodes that would make me burn all over. I was getting tired and fatigued at work now and after only a little effort or exercise, I would get what a I call a "day fever". This is term I use for feeling over-heated and/or running a low grade temperature. The first biopsy I had, by the way, was hell on wheels! They said no freezing. Ouch!..
The reports came in and my doctors were amazed at the diagnoses, some kind of mitochondrial problem. It was new to them and to me. All three labs found the same thing, mutation of some form at the mitochondria level. So how do we deal with this, and let alone, what is it?
My wife and I researched and tried to get a understanding of how to cope with it. It was very complex. Foods and weight training, all were re-evaluated seriously. The conclusion was to keep going as though nothing major had changed in our lives. I kept up the gym and work routine with modifications to the gym. I now knew there was a reason for not holding onto weigh and why the exhaustion set in fast.
A few years later, now 1995, things were progressing to a point where I could not do the gym routine very well, I was down to a big 45 minute work-out and sauna. Night sweats were in full swing and I felt continuously like the flu and me were one. My legs were aching and other weird things were starting to happen. I wanted a cure and I wanted to know which classification of mitochondrial myopathy I had, for now we had children and we were worried about them.
When I asked for more information I was told the next step was Montreal, and the answer would come in the way of another muscle biopsy. It was at this point in time that I had almost completely fallen apart and had been off work and had no idea of how long I would be off. It was something I had never dreamt would ever happen to me. Off work for an unknown illness? And for an unknown period of time? I really felt confused and upset and although my local doctors were and have been very supportive, I was very upset. This time only McGill would have the biopsy and report. The report was not what I expected, it actually sounded better then the first muscle biopsy!! Multicore myopathy, "but we will call it a kind of fibromyalgia for better understanding of the symptoms" the doctor said. What a change!
.Understanding the new diagnoses was confusing. After doing some research, I found fibromyalgia is a far cry Multicore!! This was a serious issue with me, one which lead to many complaints due to the approach McGill was taking with me. The doctors in Montreal prescribed an anti-depressant called amytrypline and told me I had to be "rehabilitated at a physiotherapist hospital due to deconditioning." Deconditioned?. Me? I had worked out faithfully at the gym for years...what on earth were they talking about, deconditioning!!........I can only believe that they did not listen to me or believe me. It was a very frustrating situation.
I got worse on the drug and discontinued it after 7 weeks. And as for the hospital, they discharged me due to the lack of understanding and the lack of information from McGill. The hospital said there was no therapy for Multicore, and exercise may even make things worse.
They never sent information to the hospital and when I asked why there was no comment made.
In 1996, it was time to do something, anything! We were desperate. So we, my wife and I, went to a mitochondrial symposium in Philadelphia where we had a chance to meet up with actual people with mitochondrial myopathies and the specialists that treat them and research mitochondrial myopathies. I was one of the very few that was an adult. The majority were children or young people, under 20 years of age.. My wife and I were engulfed with information that made sense, it was worth the travel and the expense. We met Dr. Robinson from Sick Children's Hospital in Toronto and discussed with him our need to know what was happening to me. A few weeks later I was setting up a new biopsy with Dr. Tarnopolsky in Hamilton. I had the biopsy and was given a new report. The samples went to the Kingston General Hospital, Sick Children's Hospital in Toronto and some stayed at McMasters Hospital where Dr. Tarnopolsky researches. . The results months later were interesting. I had some pleomorphism of the mitochondria, a high mitochondria count, the ATP levels were a bit low, creatine levels a bit low, and there were cores present.
So what does this all mean? . They can not rule out mitochondrial myopathy with a 100 percent certainty and can not classify the cores that were present. Later I was again told, Multicore Myopathy, and, that is where I am at today.
It is now 1998 and I still see the doctor in Hamilton because he is a specialist and is trying to figure out how to live with it. I'm still off work and can not imagine doing it. I have the "flu and total body breakdown" still and have not found a "cure".
I seem to be coping with this in a different way now, it is one day at a time and no real high expectations for returning to work. I find it difficult to climb stairs and do anything physical for a short period of time. My friends call it moderation of life, I enjoy what I can and make sure I don't over do it, which is easier said then done. I feel like I'm skating on thin ice daily though. What little energy I have I spend on my kids and just making it through the day. It has taken me the past year and a half to come to terms with long term disability. Getting an electric scooter has helped me with my daily endurance.
Things have changed for me, but I have never been a complainer, and that is what I think is a big part of the problem. It is very hard to see how I feel, and I will not tell you! No one wants to hear " I FEEL LIKE _ _ _ " all the time, now, do they? So I try to keep a positive outlook. This backfires on me sometimes but it is my nature.