The Doc Project

How early-onset Alzheimer's is forcing me to embrace the moment

At the age of 64, John Alex McDonald received the diagnosis that changed his life, and taught him to live in the present.

As his past and future slip away, 66-year-old John Alex McDonald is staying present

John Alex McDonald is 66 years old and lives in Calgary, Alberta. (Colin Hall/CBC)

By John Alex McDonald

My name is John Alex McDonald. I am 66 years old. I am recently divorced and have a 12-year-old son.

I had a fulfilling career as a schoolteacher. After retiring, I was thrilled to become the primary parent for my young son for the next decade.

Then, things started to change.

At first, my relationship with my wife began to show cracks. These cracks would eventually lead to the end of our marriage. Stress was taking hold of me; I became impatient and had to work to control my anger.

Then I started noticing how absent-minded I was becoming, continually misplacing simple objects like keys and wallets. I would panic, cancelling all my cards. I thought I would die — my head and heart pounding. 

Once when I thought I had lost my wallet, my son was kind enough to point out that it was in my other hand.

John Alex McDonald, two months before his diagnosis. (Submitted by John Alex McDonald)
I started suffering from anxiety. I wasn't recognizing what was happening in my own body and mind. 

As time went on, the memory issues escalated. I went from forgetting where I put my keys to forgetting where I parked my car. 

Once, I was at the second-largest shopping mall in Calgary. I walked and walked around its parking garage, searching for my car for two hours. I eventually determined it must have been stolen, so I called the police. I had never done that before. Two male officers took a description, looked around, and then found my car. They were verging on rude.

"We've better things to do than look for your car," they said.

Going blank

It was another incident that really started me worrying. It was, what I recognise now, my first "blanking experience." It was deep.

I didn't know my name, and furthermore, I was driving down the highway without a clue of where I was. I could have been anywhere, any city.

I quickly told myself: "You should get off the road, now!"

I pulled over, and reflected on it. I didn't panic. I just felt unsettled.

It was like an out-of-body experience. It was 10 minutes before I recovered who I was.

"What's going on? What do you mean you don't know your name, where you are, what city?" I asked myself.

It was like an out-of-body experience. It was 10 minutes before I recovered who I was.  

And then click! It came back: My name is John Alex McDonald. This is Calgary. And I carried on.  

Afterwards, I didn't know what I should do about it. This was a new experience. Could it have been a stroke? I didn't have a clue. Should I share it with my doctor?

It was followed by another incident of blanking, about two weeks later. I went to my bank, and the teller asked my name. 

I looked at her, but couldn't answer. I didn't know my name. I was so embarrassed. I'm sure I was red. I stalled, telling her my wallet was in the car. And just like my son had, she pointed out to me that it was in my hand. I got out, and never went to back that branch.

I went straight to my GP and said, "I think I have a problem."

That's where it all began.

Hearing the truth

I was diagnosed with early-onset Alzheimer's.

Early the next morning, I drove down to an off-leash dog park along the Bow River. It's the kind of place where nature comes rushing in. I watched the birds, the clouds, the river flowing. I thought, "I'm here now. It's an amazing world."

John Alex McDonald finds solace in the nature and wildlife surrounding his back patio. (Colin Hall/CBC)

I knew enough about this disease that it felt very clear. I knew it could progress rapidly, in four or five years, and be fatal. Or it could carry on for 10 to 20 years, and I could live a reasonably normal life.

Since the diagnosis, I take a keen interest in all my medical appointments and procedures. I have up to 10 appointments a week, some as long as two hours.

Becoming a test subject

I participate in a massive Canadian study on Alzheimer's based in Calgary. It's hours upon hours of testing. I am wired up. They test my brain, my reflexes, my walking gait.

And then there are the memory tests. They give me a group of five words to memorize. Then later, they come back to them and ask me what they are. I don't have a clue. There is nothing there. If I were to get a mark, it would be an F.

(Colin Hall/CBC)

I accept I have Alzheimer's. I see the millions of dollars going into research. I believe we are moving ahead scientifically. It is possible there will be a cure. I truly believe that. I am energized with consistently positive thoughts like these.

Highs and lows

Until I am not. I slide down a dark, dark, hole. I'm worried I won't be able to raise my 12-year-old son or be there for him. I am unable to get out of bed for three days, paralyzed by my fears. I want to give up.

But, by the end of the week, the desperate hopelessness that seized me seems to be moving on. I tell myself to never give up. There will come a time when I will not have that choice. But it is not today.

John Alex McDonald in his running gear. Before his diagnosis with Alzheimer's, he used to run marathons. (Submitted by John Alex McDonald)

My physical condition has changed too. I get dizzy due to the Alzheimer's and I can no longer be as active as I was. I used to run marathons. Now I can only walk 20 minutes before the muscles in my legs start hurting, and I have to sit down.

I used to love surfing. The other day my son wanted me to go to the wave pool with him. I couldn't swim because of the muscles in my arms. If I were to go into the ocean now, I would die.  

John Alex McDonald as a teenager in California, in the 1970s. He was passionate about the ocean and surfing. (Submitted by John Alex McDonald)
A young John Alex McDonald, surfing. (Submitted by John Alex McDonald)

Looking ahead

For now, I have moved into a condo with a patio and green space. My sister checks in on me twice a day to make sure I don't miss appointments.
John Alex McDonald with his sister, Judi and son, Alex. (Submitted by John Alex McDonald)

And my son is my tonic. Just being with him is a good thing. Talking about stuff — good stuff. How school is. How his friends are. The little parties they have. Who he is hanging out with. I just like to share his life. We can't walk the dog together any more, but I can drive him around. I'm still a good driver. 

Our time together is precious. I want to be around him as long as I can. I want to see him graduate from high school and whatever comes after. This is a big thing for me.

I never asked for early-onset Alzheimer's, but here it is.

Every day I observe nature from my ground floor condo.

There is one wild rabbit that I have come to know. The other day, as I was sitting on my sofa, magpies started attacking it. I jumped up and shooed the birds away. Ever since, that rabbit comes right up and sits by my patio.

This is my life now.

The past and the future may be slipping away. But I am embracing the moment.

The rabbit that frequents John Alex McDonald's patio. (Submitted by John Alex McDonald)

Listen to the documentary by clicking the Listen link at the top of this page. Or download and subscribe to our podcast so you never miss a show.

Podcast exclusive: Behind the scenes with John Alex McDonald

What was it like making a documentary about early-onset Alzheimer's while dealing with the effects of the disease? This week, Acey sat down with John Alex McDonald and Doc Project producer Alison Cook to discuss their close collaboration on this doc. Head over to our podcast page to download and listen.

About the Contributor

John Alex McDonald is a retired schoolteacher. He taught all ages, from primary through to high school, in the Calgary area. After retiring, he became a full-time father. He was diagnosed with early-onset Alzheimer's at age 64. 

This documentary was produced by Alison Cook.