Gordon's Story

Yours truly was married in 1962. Full of vinegar and all that at the time. Became a teacher and went to work for about 28 years before having to stop due to illness.

I had been just getting sooo tired and played out, so knew something was wrong. Went to doc and they tested me but didn’t do any blood work! A few days later my wife checked my blood pressure and found it to be too high so sent me to emergency. They puzzled over me quite a bit but eventually diagnosed polycythemia rubra vera. Too many red cells being made out of control!!

It was rather a shock to say the least, but I was assured I could live a reasonably normal life for quite a few years. They took 500cc of blood from me for 10 consecutive days to bring my Hct. down from 83% (Wow!) to a more near-normal 45%. I was sent home for the week-end and suffered a burst vein in my brain at 10:00 that night!! Pretty gruesome stuff-you get really nauseous etc.

Of course I went right back to hospital. I did manage to survive the night. The next morning they flew me out to Edmonton for specialized care, where I was observed for a few days. I had drains put in my head to relieve pressure etc., but developed a massive blood clot on the brain. Emergency surgery saved me, but I had to have a shunt put in later to relieve pressure permanently - like a permanent check valve!! It works fine, but gives me headaches as the body thinks the tube from it, which runs under the skin to my abdomen, is a foreign object! So it "splints" around it and that causes a tension headache. It got a bit better with time but it is a permanent gremlin I have to try to get used to. It sort of freaks out the barbers too when they feel this bump in my head and have to cut my hair carefully so as not to disturb things!!! A side effect of brain surgery too is that you always have a sensitive scalp after - it doesn't change either!!

Anyway, I survived, although did have brain damage to the frontal lobe, the "personality" center!! They say I am a very different person now - probably a good thing though - I was A PRETTY TYPICAL TYPE "A" personality. This is not usually healthy anyway....

I was then put into a rehab hospital where I was given rehab exercises for muscle strength, vision, perception etc. After a month or so I got a bit better and they sent me home. I was counseled on my disorder and sent on my merry way!

I actually felt pretty good, as my regular doctor kept my Hct. in line and I connected with a hematologist who suggested 42% as my Hct. target. The hardest part really, was the brain damage and personality change... I thought I was fine and unchanged, but of course I wasn't.... I went back to Edmonton University Hospital for 3 months of therapy re: memory, humor (yep), and general counseling to "accept" my condition. I don't think you ever really do completely accept such a thing, but it did help me some.

Then one evening, about 2-3 months later, I got extremely dizzy and disoriented in bed at night after retiring early. Was really nauseous again too. I saw a doctor again, thinking some ear wax had dropped down and closed off my ear!! No such luck though-he found everything normal to a cursory glance at least. So I went off to see an ENT doctor, and he said he thought I had an infarction of the vessels leading to my inner ear!! Man---nothing is ever simple eh? Anyway, this lack of blood killed off all the little hairs in the inner ear that send balance signals to the brain! Sooo, for the years 1993-1996 I was quite dizzy! I am supposed to walk 30 minutes per day to try and prevent further vascular "accidents". Hard to do when you are dizzy and also fatigued all the time from the brain injury!!

I try my best though, and have now got 30 minutes of walking a day into a sort of a routine. It gets to -40C here in the winter so that part is much harder!! I have, nevertheless, started to jog as well as walk, and am up to a mile now (1997) finally!. I feel fairly good, and the dizziness is much better, as I am off of Tegretol, which is routinely given after brain surgery, to guard against seizures.

All in all I feel pretty good, although slightly dizzy and quite fatigued most of the time. I have tried to develop new interests but found it really hard, as I had no starting point...did I mention that after the brain surgery, ALL of my MANY interests were just like erased from the old noggin'!?? Eventually though I did rekindle an interest in computers, and now write lots of letters to friends and family, even from 20 years ago! I also continue to do Family Tree research, and have got back to 1502 in my family, and back to 1102 on some other branches! I also scan photos and insert them into the program. So this keeps me fairly busy. It also "exercises " my brain, which is supposed to be good for me.