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ALS or Lou Gehrig Disease

February 06, 2018 by lexsmid

For several years Anne had made a trip to her doctor in Richmond who asked her asked her how she was doing, knowing the answer before she answered, after giving her only one look

“Doing fine,doc.”

If all his patients were as healthy as she was, he would be out of work. He'd give her an examination, wrote out a prescription for a year supply of pills and send her on the way – 'see you next year!'

When she was in in her early thirties the doctor caught Anne with a thyroid problem and advised her to have the gland partly removed, he had looked concerned and let it slip that because she was so young, there was a 'good' change it could be cancerous.

It would also take six weeks before he would be able to operate on her.

I was more upset than Anne, at least she wasn't showing her anxiety. During that time we frequently went out to the airport in Richmond, trying to forget what we perceived as a death sentence hanging over her, by watching airplanes starting and landing. At the end of those six weeks, which were probably the longest we ever experienced, Anne saw the specialist again, who asked her to take her favorite necklace along.

The specialist, whose name I am forgotten, drew a line under the necklace-rounding where he made a cut from side to side on her neck to take partly out the offensive gland and stitched her up, using a new system that hardly left a scar. What was left was hidden under the necklace-rounding. I am thankful for that considerate doctor for doing such a great job and after some time the scar had totally disappeared. Anne stayed with that doctor in Richmond after we moved to Tsawassen, then Ladner, and for several years after we had moved to Abbotsford.

I suggested to Anne to find a doctor in Abbotsford instead of traveling all the way to Richmond but she didn't mind the traveling and had several friends and business connections there and in Vancouver, which she regularly visited, but finally she relented and made an appointment with Dr Egolf, my doctor, who had promised to take her as a client. (it was quite difficult to get a doctor in Abbotsford at that time)

The visit proved not a success for Anne when she learned that she would get pills for only three months at a time, the time limit Dr Egolf used to prescribe medicines for all his patients.

She protested, wanting the same yearly prescription she was used to from her Richmond physician.

It was important to her for one or another reason, so tears were flowing, and Dr. Egolf finally met her demand halfway by changing the time of her prescription to half a year 'for one time only,' which did not make things any better for Anne, feeling she was treated like an infant.

As she was tear-stained on the way out, the doctor asked if he could help her with anything else, which made her stop.

“Yes,” she said “when I am bowling the ball falls out of my hand sometimes, without reason.”

After examining her her hand Dr Egolf said

“I want you immediately to see a specialist Anne, because I suspect you have ALS, Lou Gerich disease.”

He made arrangements for her to see a local specialist who was to call her after a few days for a definite appointment to diagnose her, but time went by and no call was forthcoming, so Anne contacted Dr Egolf about it who was furious about the delay, demanding to speak with the specialist.

Anne would have never received a call because her requisition 'had probably fallen behind the desk' said the receptionist, but the specialist the explanation that they were in the process of moving to G F Strong (hospital) in Vancouver, where Anne could see him the following week.

Already precious time had passed without any action taken.

I was quite anxious but Anne, who had the most to loose stayed calm and said,

“Look, I am the same as I was yesterday, lets just play it by ear and do whatever we can do.” She was so strong.

When we arrived at G F Strong the specialist beamed

“Anne, I have great news for you, I am sure you have no ALS after all, you have...” he named an illness I have forgotten, “which we can treat successfully.”

My spirits soared, thinking that maybe…maybe, God had heard the prayers of the church members, but my mood ranged from hope to despair. 

He went on to say that by chance they had a team of four doctors together in the hospital to test Anne, 'just to verify his diagnosis.'

Immediately Anne was put on a table and hooked up to a computer. The poor woman lay on that hard table for more than two hours without a complaint, before they concluded that after all it 'seemed they had been in error and had to treat her symptoms as being ALS after all.'

My hopes, raised so high were rudely dumped by hearing the outcome of the exam.

The specialists estimated that Anne's probable time to live, was from 2 to 5 years, and then we started thinking – when did she get 'it'?

Initially Anne counted back to our 50th wedding anniversary celebration in April of 2005, when she had difficulty climbing the long stairway to the reception area, but then she remembered also the even longer stairway from Timberlane street to Canterbury, where she had to rest halfway the sixty-odd steps, when before she just raced to the top of the stairs, waiting for me.

Our Fiftieth Wedding Anniversary with our youngest grandsons Jesse and Tyler as ring bearers.   

Our Fiftieth Wedding Anniversary with our youngest grandsons Jesse and Tyler as ring bearers.   

That was around 2004, which co-en-sided with the time she was having trouble dropping the bowling balls. If indeed that was when 'it' had started then two years of the maximum five years were already gone. Had Anne only three more years to live?

My heart cringed.

“So what are we going to do now,” I said more as a faith-a-complete than a question.

“Let's go camping,” Anne said, amazing me as so often with her upbeat attitude.

“I can still out-run and out-climb you,” she laughed “get packing,” and to frustrate me even more she used a phrase we sometimes used when making a sales contract for a house -

“Time is of an essence!”

I had made two drawers the length of the box of my Mazda ½ ton pick up, accessible from the rear, in which we put all we needed for camping, including a two person tent and food. We found that the drawers actually acted like a refrigerator keeping the food fresh for days.

The drawers were covered by plywood and over that a six inch thick mattress made to the size of the trucks box. (4' x 6') Two chairs on top of that and what we never forgot - a large electric frying pan in which we (I) made breakfast and Anne bannock, dinner, including steak and vegetables, even boerekool.

As soon as we arrived at a campground we set up our two person tent, then shoved in the mattress, clothing bags on each side, an ice cream bucket, pillows, sheets and a quilt we had received from our children as a wedding-anniversary gift, hung in a light bulb for reading at night and – were ready to camp and relax.

Only this time it was not to be.

February 06, 2018 /lexsmid
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