September – Stephen Knox

Stephen attends our ARC clinic weekly for PD Warrior group sessions and you will also recognise him from our Thursday online gym sessions.

He is tenacious in his commitment to exercise and fighting Parkinson’s and does an outstanding job putting into words his Relationship with Parkinson’s…
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Past, Present and Future, by Stephen Knox:
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“Writing a story about something that occupies your past, present and future, changes with your advancing age.  Life is like an old fashioned slide rule where the cursor represents the present. As your age advances, the cursor is moved to the right, extending the past and compressing the future.  The slide rule stays the same length!
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I am at a stage where my past is much bigger than my future. Many of the relationships I have had – friends, parents, clients, jobs, homes, cars, etc – are memories, past but with no present or future. It restricts what I can write about in a ‘past/present/future’ way.

One thing that does fit those criteria is my Parkinson’s disease.  It has a past, longer than I realised, a present of which I’m aware daily and a future which is both worryingly predictable and tantalisingly unpredictable.
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I’ve read a lot about Parkinson’s and the good news for me is that it is slow moving and to a large degree treatable, albeit not curable.  Yet!  I’d rather have PD than a lot of other illnesses.

Parkinson’s disease – past, present and future.
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PAST
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May 24th 2018 is a date I’ll never forget. It was the day we collected Jill’s new BMW in the afternoon.  Oh, and I was diagnosed with Parkinson’s disease in the morning. That date became a metaphor for my life from that day – bad news, but with a side serve of good news.
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I’d been feeling tired for some time and my GP, Geoff Thompson, sent me for an overnight test for sleep apnoea.  In hindsight it was like hoping your chest pains are caused by indigestion.  During the test I slept like a log. At a follow up session with the sleep specialist at the Mater, the doctor asked me to walk along the corridor while he observed me, saying he thought the problem was neurological.
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It was on the referral to a neurologist that I first saw the words ‘please test for parkinsonism’, although I’d had my suspicions earlier.  I’d had a few twitches and was conscious of my left arm not swinging when I walked.  I had other symptoms but didn’t recognise them at the time, things like a wooden, expressionless visage, a shuffling gait, an excess production of saliva wetting my pillow at night and, one which surprised me at the time, smaller and less legible handwriting.
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Dr Thompson offered two highly regarded specialists in PD.  I chose the one I could reach via the M40 bus route.  It was a virtual toss of the coin, as I’m sure either would have been excellent, but a bus from the bottom of my street in Chatswood to St Vincent’s door swung it for me.  I became a patient of Dr Stephen Tisch and have happily remained with him for more than two years.
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The root cause of PD is the loss of the brain cells that produce dopamine which controls movement.  One of the disturbing aspects of the disease is that by the time the symptoms appear, as many as 80% of these cells have already died.  It’s as though your body has been covering up the loss of brain cells for years but reached a stage where it throws up its arms and says, “That’s it!  I can’t do this anymore.  You’re on your own.  Shake it up, baby.” When I think back I can identify other symptoms such as the loss of the sense of smell and a tendency to walk with small steps like David Suchet in ‘Poirot’.
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Something I promised myself from the start was that I would never say I suffered from Parkinson’s.  I live with it but I don’t suffer from it.
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I needed a name for ‘us’.  The late Oliver Sacks, author of the million-seller ‘The Man Who Mistook His Wife for a Hat’, refers to us rather grandly as ‘Parkinsonians’, making us sound like students at an Ivy League school in the USA.  Jon Palfreyman in his book, ‘Brain Storms’, calls us ‘Parkies’. I settled for that.
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My D-for-Diagnosis Day came when I was one month short of my 74th birthday, a good age for diagnosis – the later the better.  While PD usually affects older people, some fall victim to it much earlier.  Actor Michael J Fox, one of the highest profile people living with Parkinson’s, was diagnosed at age 38.  (Other well-known Parkies are comedian Billy Connelly, singer Neil Diamond, actor Alan Alda and of course, Muhammad Ali.)
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Dr Tisch prescribed a drug called Sinemet (or its generic version Kinson) and for me it’s been a wonder drug.  Within weeks, my facial expressions returned, my hand writing shifted up from ‘illegible’ to ‘scrawl’, my cognition improved and I moved more freely.  He also encouraged me to attend an organisation called Advance Rehab Centre (ARC) to do PD Warrior, an exercise regime targeted at Parkinson’s.
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PRESENT
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My life now revolves largely around my condition.

Everything written on PD these days emphasises the importance of exercise.  After all, PD is mainly one that affects movement.  Unfortunately, statistics indicate that Parkies are not the greatest exercisers, tending to give in to their condition.
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The importance of the PD Warrior course is not just because it is exercise, but because it is exaggerated exercise, with gross motor movements aimed at retraining the brain – the science of neuroplasticity.  When we walk we raise our knees above waist level, when we swing our arms we go beyond shoulder height.  When we go up stairs we stomp on the way up and come back down as gently as possible.  While exercising, our EP will ask questions or set tasks like calling out girls’ names in alphabetical order, because PD reduces our ability to multi-task.  (Or does that apply to all men!)
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My regime is an early morning walk of 30 to 45 minutes every Monday to Friday. On Monday, Wednesday and Thursday I attend a one hour session of PD Warrior, one in the clinic at Artarmon, one hybrid meeting and one Zoom only.  No alarm clock on the weekends.
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I also volunteer as a guinea pig when ARC conduct PD Warrior training sessions for physiotherapists and exercise physiologists.  I have taken part in a games day at ARC and spend some time with a friend whose condition is more advanced than mine.
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There are several studies going on into possible causes and I have participated in two, run in conjunction with Sydney University, with my wife as ‘control’. One was a twelve-month investigation to see if PD is caused by a bacterium that migrates from the gut to the brain. The other was part of a vestibular physiotherapist’s master’s project looking at balance using, amongst other tools, VR goggles.
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My last visit to Dr Tisch was in June 2020 and I’m pleased to say he prescribed no increase in Kinson.  I told him I was getting spasms, mainly in my left arm and only at night, in bed. I am trialling Rotigotine patches but the jury is still out.
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Every six to nine months I have a physical assessment at ARC. My most recent overall score was similar to the previous tests. I had improved in some areas, deteriorated in others, but none was significant.  (This session evaluates motor skills, balance and gait, dual tasking and cognition .)
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One of the difficulties of diagnosing PD is that some of the symptoms are suffered by most elderly people, particularly men.  Forgetting where you left the car keys, needing to have a postprandial nap, finding it difficult to rise from a chair, feeling the cold more than before and experiencing a loss of balance are things that can affect older people, PD or not.
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The good news for me is that PD has not restricted my activities too much, so far.  I can still drive (I drove 3,500 miles in the USA in May/June 2019 and continue to participate in activities put on by my car club, of which I am the president.  A European holiday was planned for later this year but Covid-19 put paid to that.  I am extremely fortunate to not suffer tremors, the most recognisable sign of Parkinson’s, nor any of the more debilitating effects such as freezing of gait and falling.

Best of all, I am very lucky to have a supportive and loving family, especially Jill, my wife of 52 years.
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FUTURE
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This is the hard part.

A cure for Parkinson’s is unlikely to appear in my lifetime, or at least in time to be effective for me. While my symptoms have worsened, they are mainly minor and don’t stop me from doing most things.  I am not as stable on uneven ground as I was, so mountaineering is out.  Fatigue is constant and my days are often punctuated by an afternoon snooze.
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Will that become worse?

I have had no change in medication for two and a half years and yet the dopamine-producing cells continue to die.  Will I have to increase it and be more regimented in the frequency of taking the tablets? If the dosage is increased, will I suffer side effects?
Will my balance deteriorate leading to falls?  Will I have to give up driving my beloved cars?

Will I succumb to some of the more debilitating symptoms of PD such as tremors or freezing of movement?  Will my muscle spasms get worse?
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The most concerning thing at the moment is having double vision.  It’s not all the time and it doesn’t happen in critical times, particularly driving.  When it happens, often when talking with a group of people, I feel as if my eyes are spinning around, but I know they are not.  (I have a palsy which affects my right eye.  Is it related to PD?). I can’t imagine losing my sight and I’m fairly confident I won’t, but it may deteriorate.  I hope I can handle that if it happens.

My voice has lost much of its power and it might be that which has robbed me of some of my self-confidence which I used to have in spades.  I don’t want to retreat from my usual life and I’m determined not to.

I used to be amazed when I would hear people with horrific injuries, serious illnesses or have been victims of life-changing events say they were lucky – lucky to have lost just one arm, lucky to have been given another year to live, lucky to be alive after their house burnt down.  How could those people call themselves lucky?

I understand that now.  Life is a wonderful journey despite, or perhaps because of all its challenges. There is nothing more valuable than life itself and challenges can reinforce its worth. Parkinson’s disease is a walk in the Park(ie)for me, compared with other illnesses and injuries.

I’m very lucky.”