The Journey Begins

A story of Diagnosis

I was diagnosed with Younger Onset Froto-Temperal Dementia in mid-2013, a few days after my 59th birthday. It took over a year of persistence on the part of my GP and myself to get to that point. My experiences getting to that point make me ask “How many people do have a form of Dementia that is NOT being diagnosed until much later in life or not at all?” I suspect that there at least as many people with early or mild symptoms that are not diagnosed as there are who are successfully diagnosed.

My First Suspicion

The first suspicion I had of a problem occurred sometime in 2011. Someone I didn’t recognise ran into me in Bunnings and began to talk about work. I quickly realised that it was someone who worked in the same location (TAFE) as me but not in the same section. It was very worrying and somewhat frightening because it was obvious that they knew me, but I couldn’t recognise them. I then became aware that I didn’t recognise a lot of the people I worked with on a daily basis if I came into contact with them outside of work. This also extended to most of my students. The majority of who I could not recognise outside the class room.

I was aware that the problem was facial recognition. The clues I was using (and still use) to identify people were things like voice, dress, and body-shape, as well as the physical context or location.

I approached my GP at this point. She was sympathetic to my concerns and referred me on to a local phycologist for a battery of tests around facial recognition.

Visit to the Witch Doctor

I made an appointment with the appointed gentleman (I can’t dignify him with the title Doctor), and at the arranged time presented myself for the tests. In hindsight I can see that his administration of the testing was un-professional and conducted with a preconceived idea of the result. I failed the test totally. I did not recognise any of the facial pairs, though I did notice some similarities between some of the faces. This esteemed gentleman, told me I was wasting his time, no one could do so poorly in his test, and to bugger off (this didn’t stop him from sending me a substantial bill for his services).

The Technology Begins – A Cat Scan

My GP then arranged for a CAT scan of my brain. These results were interesting. No Cats or any other animals were found, but it seemed I might be missing a bit of my brain. Obviously it was not an important bit nor a big bit, but enough to warrant referring me onto a real neurologist.

I told some of the people that I worked with that a bit of my brain was missing, and that this explained why I worked were I did.  They thought this likely.

The Neurologist

A month or two latter and after several hours travel I had an appointment with a neurologist in Sydney. He basically said that without “good” test results from someone like the psychologist and a good high resolution MRI he couldn’t do much. A small battery of general tests showed no obvious problems. So after a 2 ½ hr drive a one hour wait in the waiting room and a 20 minute consultation and 2 ½ return drive we got home and I made an appointment for a MRI at a local imaging centre for a MRI scan of my brain and arteries. This was arranged for the last working day before Christmas, a good 6 months after my first noticeable symptom.

Technology II MRI and Pink Floyd

My first MRI was an interesting experience. Stripped of metallic objects I was fed into the MRI. I was given a set of headphones though which to technician played “mu-sick”. After a minute or two I requested that silence might sound better. I laid back and listen to the delicate sounds of the MRI and began to hear snippets of Pink Floyd amongst the background noise. This experience became quite enjoyable and relaxing. I latter discovered that it was not supposed to be relaxing, but they don’t know what they could have experienced with an open mind.

The Neurologist Part II

I made the pilgrimage back to the neurologist, to have a bunch of electrodes attached to my head and to review the results of the MRI. The result, I have a problem, but it doesn’t show up in any of the tests. So away and come back when something falls off.

It had now been over 12 months since my first concerns were expresses to my GP. Good thing I don’t have something serious or fatal – er no I do.

The Geriatrician and More Test

My GP in her wisdom (and I suspect having an idea of what my real problem was) referred me onto a local Geriatrician. He and his staff were wonderful. They ran a small battery of standard tests that confirmed my impaired facial recognition. I had a good time doing the tests and discussing the original airing of Doctor Who etc.

The result was that I was to be sent for a PET scan (Positron Emission Tomography).

PET Scan

This was not as much fun as the MRI. The scanner couldn’t muster a decent piece music, just thumpity thump noises. All this after being pumped full of radioactive tracers. After the scan I asked if there were any issues with the radioisotopes used. The technician said they were harmless – just don’t go near pregnant woman for a week or two. At this point I was hoping to glow in the dark, but unfortunately I didn’t.

My Geriatrician took a look at the scans and decided that he couldn’t convince himself that he couldn’t see anything wrong. No Cats, Dogs, Ferrets or any other pets were visible. After consultation with another colleague he said there might be something abnormal about the scans and it would be best to refer me to someone more experienced and expert in the field.

I was contacted by the NeuRA group to arrange an appointment and further testing. NeuRA are a research group located at the Prince of Whales Hospital/University of NSW complex.

Neuroscience Australia Building Sydney

NeuRA  and Discovery

At last after nearly 2 years we arrived at the NeuRA research centre in Sydney for two days of pocking, prodding, testing and fun. At the end of day one, after another MRI, we were ushered into the inner sanctum were the results/diagnosis was revealed. There on a MRI image slice – standing out like the proverbials (or at least one of them) was a golf-ball sized anomaly. I had frontotemperal dementia. The advice was that I should exit work and prepare for the end – sometime in the next three to twenty or so years.

This was the happiest moment in the last 2 years. At last I had a plausible explanation for what had been happening to me over the last few years. An hour or so later we met up with my youngest son, who was studying electrical engineering nearby at the UNSW. When I told him my results, he appeared somewhat confused, he was taken back by my prognosis, but couldn’t quite fathom my happiness.

Later a friend (now with less than 3 months to live) said “You may as well enjoy what you do, as you spend a long time dead”.

Now What – Telling People

Now to tell people and arrange my departure from paid employment. My GP prepared a nice sick note “From this time forward – until his death, he is not fit to work”. I presented this to my supervisor at TAFE. His reaction was interesting, a bit of a double-take then a question – “What’s the punch line ? Where’s  the rest of the joke?” After a bit of a discussion, I left, never to look back except in jest.

Life goes on and now I tell people I have two main symptoms –

  • “Lack of facial recognition” and most importantly –
  • “Impaired tolerance for wankers”.

I return to NeuRA every twelve months for a follow-up and to participate in their research.

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One comment on “The Journey Begins
  1. Lynda Henderson says:

    Love it Dennis! It also makes me wonder why it all took so long…maybe we should start a campaign of “Get them to NeuRA & find out” amongst our GPs.

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