June – John Lake

Looking back, some indicators of PD had been there for maybe up to two years before my diagnosis in April 2019. Principally my hand writing (I am R hand dominant) was becoming more and more laboured. Some eight months earlier I had decided to learn the violin, so the clincher became that I could not bow smoothly with my right arm, which became increasingly frustrating for me and my teacher. My father was afflicted with Parkinson’s late in his life, so all added up, the diagnosis was just a confirmation of what I already suspected.

My neurologist told me that as it was an early diagnosis it was too soon to start on levodopa replacement medication. His advice was to visit the Parkinson’s NSW web site and read up on the symptoms and the process. This I did, but it didn’t take long to start feeling pretty depressed about what was possibly in store for me. Apart from telling immediate family of my diagnosis I tried my best to cover it up so that I was not labelled as a Parkinson’s patient with the public perception of the old bent over shaky person needing a walking aid.

My wife and I were planning a trip to the UK and Turkey, built around a 310km walk across England starting in the Lakes district in September/October 2019. So I put the PD diagnosis aside and threw myself into the fine details and bookings for this trip. An appointment was made to see the neurologist the week following our return in early November 2019 with my thought being to get serious about my PD then.

The holiday went spectacularly well and despite my respiratory problems (I am asthmatic) we completed the Cost to Coast walk, although the effects of PD were biting a bit with my balance and endurance being affected.

A positive from my November visit to the neurologist was a referral to a program run at the day rehab unit of Port Kembla Hospital. I attended the program in February this year and this was my turning point as for the first time I was given encouragement and hope. Their catch cry is “We give you the tools to allow you to control Parkinson’s, rather than Parkinson’s controlling you”. With this new found attitude I was then able to cast off my feeling of shame that I had a neurological condition and have the confidence to tell others that I had PD, join a local Parkinson’s support group and join a local gym that has an exercise program specifically for Parky people.

At the end of that four week program which included physiotherapy, occupational therapy, speech therapy, diet, social services and education, of course my question was “How can I build on this – what’s next?” Fortunately there was an answer to that question, which was “You should do PD Warrior”. This answer was also echoed by the trainer at the gym class for Parky people who also gave me a lead to the Insights 2020 online conference run in April. The Insight 2020 conference was a revelation to me – there was so much to learn. I was like a sponge soaking it all up. As a direct result I have not only adopted amplitude specific exercise as a way of life, but also changed my diet and my eating pattern. Thank you Melissa and your team for what must have been a mountain of work in putting that conference together.

Thereafter followed an avalanche of emails from PD Warrior urging me to sign up for the 10 Week Challenge. I had some hesitancy though as many of the core exercises sounded very similar to what I had done, and was still doing daily, as part of the rehab program at Port Kembla Hospital, plus the prospect of doing the same 10 exercises for 10 weeks did not sound too appealing. But as the program was so highly recommended I decided to put my doubts aside and sign up. I need not have been concerned as there is a very different emphasis to the exercises, and there is much, much more variety than just the 10 core exercises. Plus the cognitive tasks to make us think and to hopefully promote neuroplasticity.

My short term goals are;

  • Smoother bowing when playing violin
  • Type properly with my right hand and write faster
  • Brush my teeth with my right hand only

And my long term goals are;

  • Walk 20km in a day
  • Walk the full (800km) Camino de Frances at age 80

I am coming to the understanding that my short term goals centred around regaining full functionality of my right hand/arm will not be achieved with exercise alone but in combination with the right medication. In consultation with my neurologist we agreed to start medication, which happened to be at the start of Week 4 of the 10WC. One month on the dosage has been increased, but at this stage not sufficiently to bring significant improvement.
My first WOW moment came before starting the 10 Week Challenge when I had my first online session with Coach Marize Newnham (who I had selected randomly) and found out she is a viola player. Marize asked me to play a piece and was able to immediately spot deficiencies in the action of my right hand and arm. She set me Challenge Tasks which have yielded small improvements. Her advice is practice, practice, persevere and persevere some more. I have really enjoyed subsequent sessions with Marize and have benefited from them. A coach makes the difference between just fumbling through with an exercise and doing it with poise, balance and assurance.

More recently I was able to complete a 16km bush walk with a mate, including some bush bashing when we lost the track. This was certainly another WOW moment and gave me the assurance that my goal of a 20km walk in a day is not too far off. This follows a two week hospitalisation in late January with a serious respiratory condition (no, not Corona virus). I am also feeling quietly confident that my long term goal of walking 800km at age 80 on the Camino de Francis, although ambitious is achievable. I walked it with Julie (my wife) and some friends in 2017 taking 34 days. What a buzz it would be to do it again in 2029 and also finish it in 34 days!

A lot has happened this year and on one level it could be said that not much has changed – I still have Parkinson’s. But on a deeper level I know inwardly that a hell of a lot has changed. By taking on activities including the 10 Week Challenge I am acquiring the tools to live out the rest of my life the best I can. To be able to continue to take part in the activities I enjoy and to be able to interact with my children, grandchildren and friends at their level, not at the level of a dottery old man. Perhaps the most important change is to be able to acknowledge I am a Parky person, and to Live Brave.

Related Articles

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…

January – Julio d’Escrivan

Julio is the perfect example of dreaming big and not letting Parkinson’s Disease put a ceiling on what you think you can achieve. Remember your goals and achievements are specific to YOU. Your marathon might be successfully walking around the block. Your Ironman might be climbing a set of stairs with more confidence. I hope you find Julio’s story as motivating as I did:
I am a composer of music for audio=visual media and a Senior Lecturer in Music and Sound for The Screen at the University of Huddersfield in West Yorkshire…

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