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| Gustav |
Yesterday, all my troubles seemed so far away.
Now I need a place to hide away...............
Oh, I believe in yesterday....................
Suddenly, I'm not half the man I use to be....
There's a shadow hanging over me .............
Oh, I believe in yesterday....................
It is with sadness that I listen to this Beatles' song from our youth - because since Gustav got encephalitis in September 2000, it has taken on a completely different meaning to me.
We were on holiday from Kwazulu Natal, South Africa where we live traveling in the USA and Canada. A first holiday without our children
since 1976. It was fun us two fifty-something’s seeing New York, Minnesota etc. Then we met up with my brother and his wife and were
traveling down through the Rockies to Montana (starting in Vancouver BC) when on Wednesday 4/9 Gustav woke up and did not feel well.
Later on during the day he started to run a fever and that night he was bothered by a "funny smell” in the room, though I could not
smell it. The next day he felt better - we went from Jasper to Banff but the fever picked up again. At the dinner table he asked when
I was going to cook the sweetcorn we bought. But we already had that two nights previously.
On Friday 6/9/2000 Gustav drove for about 90 minutes and then decided to hand the car over to my brother and about half an hour later
he had a grand mal seizure in the back of the car. Emergency 911 was called and by the time we arrived at the Cranbrook hospital, he
was talking to me again but not a lot of sense, he had difficulty in finding words especially in English (our second language) and did
not know where he was or what happened.
A catscan, EEG and lumber puncture were done. The results of these tests as well as the funny smell and the forgetting combined with the fever and the seizure put the doctor directly on to encephalitis. The doctor had a telephone conference with specialists in Calgary that night and he insisted that Gustav was to be airlifted immediately to the Foothills Hospital. We were thinking about costs but his words were: "Your work is words and you need the best care we can give you." We will forever be thankful to Dr. Lowden for his insistence that night!
Gustav was flown across the Rockies to Calgary at about 23:30 and on arrival they immediately started him on Acyclovir, Dilantin and also some antibiotics pending the tests for a final diagnosis, as well as Tylenol for the fever - which broke by Sunday morning. In the hospital another lumber puncture, an EEG and a MRI were done. Saturday when we too arrived in Calgary, we found him in isolation but during the day. But in the end the neurologist wrote in her letter that HSE was the "most responsible diagnosis" and he was taken out of isolation.
We stayed for 2 weeks in Calgary while he received the Acyclovir intra veneously. He knew who he was, what the year was, that we were in Canada and knew my brother, his wife and me. But in the two weeks there he could not remember the name of the city or the hospital. To this day the name of the hospital and his memories of the time in Calgary are very hazy.
After two weeks we were allowed to come home to South Africa - with strict orders from the neurologist that Gustav must have adequate sleep during the journey otherwise he could have another seizure. It was scary - first the flight to London and then the 11 hours flight to SA. But we got here safely. Gustav had another week's treatment of Acyclovir in our local hospital (three weeks all together). The neurologist here agreed with the diagnosis and booked him off from work for 5 months. He is still on Dilantin and will have to take it for at least 2 years. He did not drive for 6 months. The neurologist's advice to us was to try to walk for 2 hours a day. The first day out of hospital he just made it around the block. Now he is fit again.
Jobs in South Africa for white males are however so precious, that he had to go back to work in December 2000 (half days) and full days from January 2001. (There was no way that he could stay home for 5 months!), He has to travel 150 miles per day to work and back. It is now 19 months after E.
He still has trouble remembering names of people met in the last few years and sometimes he cannot easily find the right word for what he wants to say. He also finds that things that he always could do without effort (like addressing a meeting or doing pubic speech) it now takes an effort (this has been improving a lot, though). In a meeting he would want to make a point but will forget what it is if he has to wait to speak - (this is where making notes started to come in.... difficult for a person who had a formidable memory!)
He had to go back to work and that was good for him but he found it extremely tiring - especially in the first 6-7 months. Coming home he was so tired
that to go for a walk really took an effort - but it was worth it - afterwards he felt better. Exercise definitely helps for the fatigue
and therefore indirectly for his frame of mind.
He still gets sleepy early evenings and his sleeping pattern is erratic. He also suffers from 'blank' spells from time to time (Just
for a few minutes he cannot remember what happened the day - and the past few days and what day it is) In the beginning he panicked
but now we know he will remember...... We talk through the past few days and then it comes back. The medical people do not know what
this is......his EEG does not show any epileptic signs. There is no pattern but it tends to come AFTER demanding and tiring days coupled
with not enough sleep. We boost him with vitamins & gynkoforce for the blood circulation and a mild sleeping pill when necessary.
For Gustav, our children and I this has been a time of learning and putting our trust in God. In everything that happened we were held in his hands - Gustav not driving when he got the seizure - the doctor in Cranbrook insisting that he went to Calgary where they gave him Acyclovir immediately. The support we got from the staff and neurologist in Calgary as well as from South Africans in Canada. I had access to e-mail through the university library and could keep contact with our children daily and received letters from home. Our travel insurance paid all our expenses and organized our changed travel schedule as well as a hotel at Heathrow where we could sleep for two hours between flights.
Every day we realized that it could have been so much worse! But things did change and we have learned to take it a day at a time " 'n dag op 'n slag " as we say in Afrikaans. I especially tend to try to carry tomorrow's worries with today and had to learn to let go!
For Gustav his work is his life. His job (CEO of his District Municipality) was advertised by law after elections held in December 2000, he was appointed
in an acting capacity but when the final appointment was made, (June 2001) and he was not appointed again. He is now in a tourism post...
the responsibilities are less (unfortunately not the traveling) and he is enjoying the work although the circumstances are difficult.
Our children are 22, 20 and 18 years old. We still have financial responsibilities towards them.
We do not know why this has happened in our lives. I am the one with the cold sores, he never had one in his life! We could not find any one person in the past 19 months here who also had HSE. This is the first case our GP ever had, the neurologist is 275 miles from us in Pretoria. We are pretty much on our own, except for Ingrid's support group and this website which has been our source of information and support.
We would love to make contact with any other South African survivors & caregivers.
We praise the lord god for his goodness in the knowledge that he will not forsake us and that nothing ever happens that will not be for our own good in the end!
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Retha- his wife.
South Africa
Posted: May 23, 2002 |
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