More than a man with ALS — meet Frank Manuel

First Squamish Walk to End ALS will be part of Canada Day parade July 1

On the side table next to Frank Manuel sits a coffee mug with "Santa Claus" inscribed on it.

He has been Santa in Squamish a few times for local organizations and at a couple of local schools.

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All around him in his Valleycliffe home are such knick-knacks from years of activities, trips and adventures with his wife Victoria Morris-Ott.

Clearly, the recently turned 76-year-old has had a storied life so far.

He was born in England and moved to Canada with his family when he was 10. He eventually joined the Royal Canadian Air Force, later being promoted within the forces after he got his degree in mechanical engineering. He even spent a year in England learning about terrorist bomb disposal and working with airplanes in Comox. Later he lived and worked in China teaching English. Combined, he and Victoria have five children and 18 grandchildren.

And that is just a small snapshot of his endeavours.

ALS is also part of his journey.

In 2015, Manuel was diagnosed with the fatal Amyotrophic Lateral Sclerosis, more commonly known as ALS or Lou Gehrig's disease.

It is a progressive neurodegenerative disease that impacts nerve cells in the brain and the spinal cord, slowly weakening its host.

A difficult diagnosis, to be sure, but Manuel has taken it in stride and stresses he is living — and pretty comfortably — with the disease, not dying from it.

The Chief sat down with Manuel and Morris-Ott in their cozy living room for a chat about his life, the disease and the first ever Squamish Walk to End ALS , which Victoria is organizing for Monday, July 1.

What follows is an edited version of that conversation.

 

Q: Can you tell me a bit about your history in the military?

A: I spent 21 years in the Canadian military. I joined back in the days when we had three separate services. I was with the air force and they made me a radar systems technician. It was really quite interesting. It was back in the days when things had vacuum tubes and resistors and capacitors. I had good hands and could solder. I quite like fixing things and I was good at it.

I then went back to night school to get my high school diploma, and then I went to Carleton University to get a mechanical engineering degree. In 1971, I went to England to study ammunition technology and explosives with the British Army. At that time, the FLQ ( Front de libération du Québec) was planting bombs so there was a need for people trained in explosives disposal. England is where I was born so was also interesting to go back.

 

Q: A little off topic, but you have an earring. Can tell me about getting that?

A: When my son Rob was about nine or 10 years old he said he wanted to get an earring. I said, 'It is your ear, you can do anything you want with it."

I took him to a place I knew and Rob picked out the stud he wanted and they put it in.  The lady said earnings came in pairs and she asked me if I wanted the other one. I looked at Rob and he was looking at me with big eyes and as if God had dropped in my lap. So I said, 'Sure.' It made such a difference in our relationship, that I have kept it. It reminds me that it is the little things — not moving the mountain for them — it is the small things.

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Frank Manuel at his home in Valleycliffe on Friday. - Jennifer Thuncher

Q: You found out you had ALS in 2014. Can you tell me about that?

A: In 2013, when we were in China, I knew that something really bad was happening to my body. I thought I had a bad back at first. I would be walking and bend over and would have to lean on a tree to get back up. It slowly got worse. I used to have the most beautiful handwriting, and then I could barely hold a pen. I was praised all over China for my use of chopsticks, and then suddenly I couldn't even pick them up, my hands were so weak. And I would fall down. Neurologists eventually said confirmed it is ALS.  It is slow moving though. I am still tottering along.

 

Q: How are you currently feeling?

A: I feel fine. It is not a painful disease. It is just a very slow weakening of muscles. I am wasting away. My arms look like chicken wings. My legs are wasting away. But I can stand up. I can transfer from my wheelchair. I am doing OK. I am still enjoying life. I volunteer at Hotspot Community Resource Centre twice a week. That is really nice — to be able to maintain my usefulness. I help with computer problems people have there.

 

Victoria: Veterans Affairs Canada has just been amazing. They gave Frank a payout so we could do work on the house for him. The wheelchair out there is worth $27,000. It tips back for when he is not able to sit. We could never have bought that wheelchair.

I also have to praise the ALS Society, the Red Cross, the health unit here, the Squamish Hospice Society and the Hotspot because they have been so instrumental in supporting Frank.

We had no idea what great resources there would be here. There are all these things that just make our lives so easy.

 

Q: When did you come to Squamish and why?

A: In 2014, we knew we needed to get back to Canada. In talking with my son, they had settled in Squamish. When we came to visit at Christmas time, we just loved the place.

 

Q: Victoria, can you tell me a bit about the walk you are planning?

A: We are tagging the Squamish Walk to End ALS onto the end of the Canada Day Parade. The Downtown Squamish Business Improvement Association has been great to let us tag on to that.

ALS is an orphan disease and there are apparently four people with it in the Sea to Sky Corridor. And they don't know what causes it. We want to raise awareness and if people are interested, we can look at doing our own walk next time.

[The parade forms across from RBC on Winnipeg Street at 9:30 a.m. July 1. All entrants to the ALS walk will receive a free T-shirt.]

The funds raised are used for ALS Society of BC patient services programs and for ALS Canada Research.

For more information, to register or donate go here.

 

 

 

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