I have what? Frontotemporal dementia?

I have what? Frontotemporal dementia?

As I drove us to the 9:00 a.m. meeting with Dr. Didyk a geriatrician, many thoughts ran through my head. Here we go, another appointment with another doctor. One more stupid test. I hate when they ask me to write down the clock time because I know what time it is. I’m looking forward to my Timmy’s coffee.

Once Dawn and I arrived at the hospital, we grabbed a coffee and headed off to the waiting room of the gerontology area. I asked myself, “How can I only be 45 years old and be sitting here?”

Within minutes we were led into the examination room and the nurse arrived. Same old, same old. It really bothered me that after years of battling serious depression, memory loss and behavioural changes, no one has provided me with a sound medical diagnosis. That was all about to change.

Nurse Julie began the mini–mental state examination (MMSE). Sure enough, there were the questions about time. I uttered to her that I don’t have a problem with time. We continued on. Finally, the last of 30 questions lay in front of me. My mind was tired and it had become hard to stay focused. I didn’t have the brain power to answer any more questions – we were finished. After asking Dawn and I a few more questions about my health, she disappeared to tally the results.

Soon, the door opened and Nurse Julie appeared with Dr.Didyk. Everyone sat down.
The doctor immediately started to discuss the results of the MMSE. Six months ago, I had taken the same test and scored 24. Today, my score was 18 – an obvious, significant decrease. I’m not sure of all the things she discussed, but I do remember this: “You have Frontotemporal Lobe Dementia or FTD.”

Whoa…. no one has ever used those words before. I knew I was cognitively impaired but what was this FTD thing?

The doctor went on to explain more about FTD including that my amount of education will help. More blurred talk. FTD is a rare form of dementia and is incurable. Dawn and I looked at each other. Could this really be happening? More blurred talk. You will not be able to drive anymore effective immediately.

Whaaaattttt? O.K. This is now serious. More blurred talk.

I stopped hearing the rest of the conversation. The only thing I could hear in my head was, “You can’t drive.” You don’t have a driver’s license!” I started to see red. I flew out of my chair and threw some papers in the garbage. I stormed out of the office trying my best to slam the door shut. I tried a few times.

I continued on to the hospital hall and stopped. I began to pace up and down mumbling to myself. How could this be? How can I have dementia? How can my license be removed? How can my license be removed? How can I have dementia? How can my license be removed? How can my license be removed? How can I have dementia? My head was in a swirl.

I continued to pace. My cell phone rang and it was Dawn asking where I was, if I was o.k. And for me to come back into the room. No! I’m not coming back into the room because I don’t want to hear anymore. I continued to pace.

Eventually, Dawn came out of the examination room and approached me in the hall. We said nothing and I handed my car keys to her. We headed out towards the car. Dawn proceeded to take my usual seat at the wheel and I took her usual seat as a passenger.

FTD had changed our lives forever.

This article was previously posted on the Alzheimer Society of London-Middlesex blog. Read more from Mary Beth.

fdd8c873df2214bMary Beth Wighton

Person living with dementia

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