Man with rare disease reveals how ‘brain roulette’ changed his life forever

Imagine your brain is a roulette wheel, each morning waking up not knowing which direction the ball that dictates how you walk, talk, and eat will choose to spin that day.

That ‘game’ is a reality for Tim Brown.

The Canadian native was just a regular family man living in the town of Ayr and working in the automotive parts manufacturing sector, before his life flipped upside down.

In the summer of 2014, Tim was diagnosed with progressive supranuclear palsy [PSP], a rare neurodegenerative disease that destroys nerve cells in the brain and consequently interferes with the connections needed to control movement, balance, and gait.

Over time, as the disease progresses, difficulties with speech and swallowing also begin to develop, with the illness often likened to locked-in syndrome whereby people are aware of their surroundings but cannot move or communicate.

Despite the gravity of his situation, Tim remains positive and continues to learn as much as he can about PSP on his mission to educate others.

Speaking exclusively to Uspire, Tim recalls the day he got his diagnosis and how he has learned to adapt living in a PSP world.

Tim said: “My wife and I met with a neuro-ophthalmologist, after my first neurologist referred me and requested a fast-track appointment – that took six months.

“The eye exam from hell was the most invasive eye examination I had ever experienced. The physical exam itself lasted an hour, before the ‘big reveal’ followed.

“Dr Fraser’s diagnosis was PSP. My wife and I were puzzled. He went on to explain that the disease is a ‘parkinsonism’. He continued to talk, but whatever he said was lost on me. In my mind, I had heard Parkinson’s and thought, ‘not great, but manageable’.”

Parkinsonism is an umbrella term used to describe the symptoms of tremors, muscle rigidity and slowness of movement. However, unlike PSP, Parkinson’s can be treated. And as the name suggests, PSP is a lot more rapid in its ‘progressive’ nature.

It was only on arriving home, that Tim and wife Trish realised it wasn’t Parkinson’s at all.

Tim continued: “We did a Google search on PSP. The first response that turned up was ‘Sony’s Play Station 4’, hence the tagline on my book, ‘PSP – it’s not a game’.

“A deeper dive on the search engine turned up a number of sites. The lump in my throat was swelling more and more with each new one and the information it provided.

“A rare brain disease with no treatment or cure, with an average life expectancy of seven years from the time of diagnosis.

“As I continued to read, my wife, who was doing a search of her own, came downstairs and said that maybe I shouldn’t go looking any further, fearing that I might discover it wasn’t a game. Too late for that. This is, and would be, me. The guy with a rare brain disease. My life clock began counting faster that day, the news was surreal, yet sobering.”

However, Tim became determined to put up a fight and found two ways in particular to confront the illness head-on – writing and exercise. The writing became such a success that he is now a published author, having released two books on his journey with PSP.

That’s not to say it was easy!

Tim confessed that writing is a “tedious process” but the idea of giving some insight to fellow patients or their loved ones is what keeps those fingers tinkering on the keyboard.

He explained: “Prior to my first book, I wrote a blog by the same name – The PSP Chronicles. This provided a great deal of written material found in Volume I.

“Early in my diagnoses, my keyboarding skills were better, as was my spelling, grammar and vocabulary. While working on the manuscripts, I continued (and still do) to journal, capturing the day’s events, symptoms whether new and old, anything relevant or not!

“This allows me to have a shelf of information to draw from when required. My thought processes are slow, word retrieval… ugh! Stringing a sentence together is like, ‘wash, rinse and repeat,’ and that doesn’t even address the issue of being unable to shift my eyes.

“I write in Word, and those damn squiggly lines that seem to appear more and more are annoying. I use three different editing programmes to make sense out of the stuff I write, and still there are the WTF times. But if what I write makes sense to caregivers, patients, family, friends or others, then that’s motivation enough for me to continue writing.”

On both books, a hummingbird graces the covers. This is a nod to the ‘hummingbird’ sign that appears on the MRI scan results of those with PSP, where the midbrain atrophies [degeneration] in a profile of the brainstem appear to show the body of the bird.

Tim’s one-man crusade is also to help increase the information available, given that the majority of the medical community have not even heard of PSP, while breakdown jargon written in reports and research papers too that is not accessible for the layperson.

As Tim rightly points out, the PSP campaigner continued: “Most people cannot pronounce much of the terminology, let alone understand it. So, I came up with ways for more people to identify with and even have fun with it.”

And he’s not wrong. His humour is peppered throughout both books, especially while referring to his illness as ‘brain game roulette’ or ‘pinball PSP’ – never quite knowing how the ball is going to land and dictate what symptoms will present themselves that day.

It is believed only three to six people in every 100,000 worldwide have PSP. However, the PSP Association in the UK believe the figure could be a lot higher as people are often misdiagnosed with Parkinson’s or other movement disorders.

It is for this reason that Tim says we must educate the educators and make sure that doctors, nurses, clinicians, and frontline healthcare workers are familiar with PSP.

Last year, the illness reached a pop culture audience as a character in American TV show Zoe’s Extraordinary Playlist suffered with PSP – inspired by the writer’s real-life story.

As well as educating others through writing and raising awareness, Tim continues to work on himself too saying he is a big advocate of neuroplasticity.

He said: “In my mind, I’m PSP free, although my body tells me something different.

“I’m a firm believer in neuroplasticity, the potential to use other areas of the brain to handle the functions of the damaged portions through focusing, visualising and breathing techniques. It’s no cure, but neuroscientists have had successes especially in chronic pain. It requires a lot of work and discipline on the part of the patient.

“Imagine if we could slow down the progression enough until research discovers a cure.”

Ice-cream fanatic Tim also joked he’s “always PSP free” when deconstructing favourite sweet treat (a Dairy Queen Dream cone) as “it requires a great deal of discipline”.

Talking about his advice to someone who might find themselves or a family member diagnosed with a terminal illness, Tim said that getting through the denial process as quickly as possible and accepting the disease is what helps motivate him to keep going.

Tim explained: “I would recommend learning all that you can about the disease, no matter how disconcerting it can be. Get all the practical and necessary legal paperwork – power of attorneys, wills etc. – completed and out of the way.

“Don’t get caught up on the final outcome, we are all going to die one day. If you are able, exercise, exercise, exercise. If you don’t move it… you lose it.

“Live and love like you’ve never lived and loved before, but be sensible about it – even bucket-lists have a price tag. Call on your faith if you are inclined to do so.”

Touchingly, he concluded: “Get involved, be part of the answer to finding a treatment or cure. The first survivor of PSP is out there.”

To grab a copy of Tim’s book, click here: The PSP Chronicles.