Advocacy at Altitude

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A year ago I was preparing for my 2016 WPC Plenary when I realized that I had nothing significant to work on when I returned - and recognized that wouldn’t be a good thing.

Casting around in the back of my mind was a long running advocacy project run by Enzo Simone of New York.  Enzo’s whose mom had been diagnosed with Alzheimer’s started his journey into advocacy by climbing the unclimbable “Wai’ale’ale” on the island ofKaua’i, Hawaii in 2005. This project was initially supposed to be a one shot awareness and fundraising event to help champion Alzheimer’s Disease. His father-in-law's diagnosis of Parkinson's became the catalyst for the future “10 Mountains 10 Years” project which championed both Alzheimer’s & Parkinson’s Disease.   

Over the following decade the 10M10Y Ambassador Project spawned ascents of Mt Blanc (France), Mt Aetna (Italy) and Mt Washington (USA) to name a few.  The climb up Mt Kilimanjaro (Tanzania) became the subject of a multi-award winning documentary movie of the same name. 

The challenge in 2017 was to walk the Inca Trail (44 kms, 29 miles) via the infamous “Dead Woman’s Pass (4,212 meters, 13,877 ft) to the lost city of Machu Picchu.  I figured “what the heck?” and committed to the project not knowing much more about the Inca Trail than it was ‘at altitude’.  What was I thinking?

The 9 months following my return from Portland were full of itineraries, lists of things to take, physio sessions + lots of walking, aerobic and strengthening excercises.  A big chunk of time was also devoted to organising the raising of funds so we could make a donation to The Neurological Foundation of New Zealand - an organisation committed to funding neurological research

In Enzo’s words

“We prepare for months in advance, by eating healthier food, and exercising. We draw upon our hope and faith to give us strength and to never give up. We support others around us who struggle as we do. Then from towns, cities and countries around the world we make the journey to the mountain”

And so finally in July 2017 we gathered in Cusco, Peru. 

28 Advocates for Alzhiemers and Parkinson's (7 of us with Parkinson's) from Italy, Argentina, USA and New Zealand. 

Whilst many of the group were strangers to each other at the start friendships were quickly forged due to our shared experience and purpose.  There’s also nothing like blood (noses mainly), sweat (did I mention how hot it was?) and mosquitoes to bring people together.

Enzo again  

At the foot of the mountains while we may look up, we are in fact facing ourselves. There are many, many, many things in our way but we can very often be our own greatest obstacle. Here on the mountain we are all equal. Here it is never a competition to outdo our fellow man. Sometimes we walk ahead. Sometimes we walk behind. Sometimes we are first to reach the summit, sometimes we are last, and occasionally we do not reach it at all.”

Indeed I was one who didn’t “summit”, choosing to return after Day 1 of the hike. This was a tough call to make but I made the right decision for me on my Parkinson's journey.

Silvano & Tiberio Rodas (Italy), Jo Quirk (New Zealand), and Steve Gilbert (USA)

Silvano & Tiberio Rodas (Italy), Jo Quirk (New Zealand), and Steve Gilbert (USA)

Four amazing People with Parkinsons (see picture) walked the full 4 day Inca Trail which is some feat for able-bodied people.  NB : all of them are “Rock-Steady Boxers”.  On the last day the whole team reconvened in Machu Picchu. 

My main learning from being in Peru was that (for life with PD OR taking on a hike at altitude OR on being an advocate) is that preparation is critical .  In my case my preparation taught me my limits and allowed me to step into a Plan B situation.   

The second insight gained was that it’s good to Aim High, but remember that Plan B is ok.

 Also I can see that advocacy is a never-ending journey so I decided I may as well enjoy the ride. Finally I saw how my team mates met altitude with their attitude.  It was a privilege to witness their courage, grit and resilience.

I’ll leave the last words to Enzo.  On being asked if he thought it was dangerous to climb mountains or volcanoes to raise awareness for Alzheimer's & Parkinson's cures? 

"No I think it's dangerous to sit at home doing nothing to raise awareness for Alzheimer's & Parkinson's cures."

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Andy McDowell presented at the 4th World Parkinson Congress and won Grand Prize in the 3rd World Parkinson Congress Video Competition with his video, Smaller.  He is currently an Ambassador for the 5th World Parkinson Congress. You can read more of Andy's musings here.

Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®