As I sit on the train from Montreal to Quebec and reflect on the last
four day at the World Parkinson Congress, a few thoughts stand out.
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I am now fully a member of the group of people
with Parkinson’s Disease. A fact that
will not change until if/when I become a member of the group of people cured of
Parkinson’s Disease.
-
There are many people willing and interested in helping
me with Run-the-World 4 Parkinson’s Disease – many of who attended the World
Parkinson Congress.
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There are many who could benefit from this
project – the overwhelming majority of who would not have known anything about
the World Parkinson Congress.
From the time I arrived at registration on the evening before the
Congress began, to the time I left on the last day, I struggled to define my
role at the Congress. Was I a patient,
trying to learn more about the diagnosis and current/future treatments? Was I
a clinician and/or researcher trying to gain information to guide me to a
specific career path? Was I an advocate,
looking for my opportunity to raise awareness for those affected by the disease? Although at times my tremor was obvious and I
could certainly associate with the long list of non-motor symptoms that were
frequently the topic of presentations– I didn’t have the age or obvious
disabilities that most would use to recognize those at the conference that were
patients. Although I often introduced myself
as a physician, I was quick to let people know that I was an Endocrinologist
and not a Neurologist. Although I have
some background in research and understood the methods applied in the various
studies – I was not familiar with the volume of literature that encompasses
Parkinson’s Disease. And although I wore
a shirt and passed out business cards to promote Run-the-World, I was very much
a novice when it came to world of advocacy and fund-raising. One speaker equated the path a Parkinson’s
patient takes to become an advocate to the role of the members of a sports team. That seems an appropriate analogy for
me. I am in a somewhat unique situation
in that I can play all positions on the team, but am very much a rookie now and
time will tell in what role/position I end up fitting into on the team.
Most people had a similar reaction when I told them about
Run-the-World. First they were a bit
surprised that I was a patient and quick to add that I “must be doing well”, if
I was so active. The next statement was
usually something along the lines of “How is that possible?”, when they realize
the actual itinerary for the project. Finally, everyone provided words of
support and where possible offered assistance.
This reassured me that the project might have the substance to create
interest.
It was evident during the
conference that many individuals and organizations have projects addressing
research fundraising, research priorities, patient advocacy, etc. and it will
be challenge to find a important niche for this project. However, a few observations and discussions
have taken me back to my original interest in humanitarian medical projects
(even before I was diagnosed with Parkinson’s Disease). As international health efforts in the
developing world achieve success in treating the infectious disease and
malnutrition causes of death and as life-expectancy increases, there will be an
increasing need to address chronic diseases in these populations, including
Parkinson’s Disease. For the past few
years I have been considering a model that could be used to deliver simple,
inexpensive treatment to areas in the developing world where these treatments
are not currently available. Looking at
my itinerary for Run-the-World, the majority of the countries that I will be
visiting did not have speakers at the World Parkinson Congress and undoubtedly
have limited capacity to provide treatment to their Parkinson’s Disease
patients. With that in mind, I plan to
spend the next couple months try to establish partners in the countries I will
visit who might be able to benefit from the exposure my visit to raise
Parkinson’s Disease awareness in their countries. It is clear to me that I need to focus on
this aspect of the project now and get back to the travel blog and fund-raising
aspects in due time. I will post updates
on my progress and plan to restart travel planning around the first of the
year.
If you happen to be from one of the countries that I will be visiting or
have more thoughts on the direction of this project and opportunities to
advance Parkinson’s Disease care in the developing world, please post your
comments here or email me at the address above.
Of
course, I can’t end this post without mentioning some of the tourist aspects of
my trip to Canada even though touring time was limited. My night in Ottawa was probably most
memorable for the approach to the airport.
I have heard how spectacular the fall colors are in this part of the
world, but it is truly impossible to describe the sight of flying just above
the trees at sunset – the contrast and brilliance of the colors was amazing! In Montreal I was able to do the two things
on my checklist. The Canadiens’ game was
a great experience. Prior to the season-opening
game, downtown was transformed into a big fan zone with sponsor tents, a stage
(Kings of Leon performed) and interview sessions with former players. At the stadium, there was the annual ceremony
in which each player on the Canadiens’ roster is announced individually, skates
to center ice and takes hold of a torch from the previous player, until the
captain is called and takes the torch to the coach on the bench. The game was
close throughout with the rival Maple Leafs winning 4-3. The night was marred only by a Canadiens’
player suffering a concussion when he landed face-first on the ice during his
second fight of the night – not surprisingly igniting another debate throughout
the league on the role of fighting in the sport.
While the hockey game exceeded expectations, the visit to the Olympic
Stadium was largely disappointing. After
a quick subway ride from downtown, I spent the 30 minutes before the next
hourly tour walking around the stadium looking at the weeds, trash, and
crumbling cement of a stadium that is obviously aging and underutilized. Along with three others, I took the “tour”
which involved a 15-20 minute opportunity to walk inside the stadium, listen to
a 5 minute overview of the history of the stadium and take a few photos. To be fair to the guide - there really wasn’t
anything else to see or do. There are no
images or monuments to the Olympics of 1976 (apparently what is left is hidden
by construction areas and plans are in place to expand exhibits in the future). It was hard to imagine that I was at the site
of all the Olympic events that I had preserved in my scrapbook when I was 10
and cut out every Olympic photo from the local newspaper. However, this is not unique to Montreal. I have posted a slideshow above with photos of
all my visits to summer Olympic stadiums. I had to steal a few photos from the internet
to recreate old non-digital photos that I can no longer locate. If I can’t keep my own photos organized – I
guess I can’t blame the sites for their lack of memorials.
After only a few hours in Quebec
City, I am ready to add it to my list of top 5 most beautiful cities that I
have visited, which currently include:
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Venice, Cusco, Cape Town, Bruges and now, Quebec
City.
I would like to again close with thanks to everyone interested in this
project and an invitation to anyone in the countries that I will be visiting to
let me know if my visit can help you get raise Parkinson’s Disease awareness in
your country.
-Mark
