Notes from Portlandia

          This weekend I made a quick trek back to Portland, Oregon – the city I left in 1993, after graduating from medical school and seeing my last Blazer basketball game.

                          

          My wife and I always thought we would return to Portland, but it is now 20 years later and we still have not made it back.  My daughter, however, is now a Portlander – having started her freshman year at Lewis and Clark College this year.  It is amazing to see her all grown up when compared to her first tour of Oregon Health Sciences University, 18 years ago.  Even more incredible to think of all she has accomplished over the years.

         

           Portland will always be a special place to me personally - the city that Lila and I first lived after getting married, the city where I went to medical school and the city where I made some of the best friends of my life.  It is also an important place for the Parkinson’s Disease community, highlighted by being chosen to host the next World Parkinson Congress in 2016.  Given the impact the World Parkinson Congress had on me this year and my ties to Portland, I am adding an option for those wanting to support “Run-the-World 4 Parkinson’s Disease”.   In addition to being able to donate to Team Fox to support Parkinson’s Disease research, you will soon be able to donate to 444 Parkinson’s Foundation to fund travel costs for those with Parkinson’s Disease around the world to attend WPC in 2016.   444 Parkinson’s Foundation has been chartered and once tax-exempt status is established, the foundation’s website will open with a link to accept donations.  I anticipate having the site set up just after first of year for those who may be interested and will keep you updated via this site and the 444 Parkinson’s Traveler Facebook page.

         

          Finally, I would like to mention a person with special connection to the World Parkinson Congress, the cause of Parkinson’s Disease awareness and the city of Portland.  Brian Grant is a former NBA player, who spent 3 seasons with the Portland Trailblazers.   He was diagnosed with Parkinson’s Disease at the age of 36 and has created the Brian Grant Foundation.  For those that were able to attend the WPC in Montreal this year, you may have seen the video of Brian summiting Mount St. Helen’s which won the 2013 World Parkinson Congress Video Competition.  If not, you can find out more about the video and the Brian Grant Foundation at www.briangrant.org.  Undoubtedly many in the crowd at the WPC were moved by the story and images in the video.  For me it added clarity to “Run-the-World” and the idea that my project might be able to shed some light on the lives of those affected by Parkinson’s Disease around the world.  So I’d like to thank Brian Grant and his foundation for the motivation, the city of Portland for all the great memories and opportunities that it has afforded me and hope that “Run-the-World” will allow others to experience this wonderful city in 2016.

www.worldpdcongress.org

Why “RUN” the World?

Why “RUN” the World?

          When I first considered “Run-the-World”, a running theme seemed natural given the popularity of road races - I know because my closet is full of charity race t-shirts.  In addition, I knew I wanted an athletic challenge and I have a modest background in running.  However, this week the reason to “RUN” the World took on a new meaning to me.

          Last night I ran the Rock-n-Rock Half Marathon here in Las Vegas.  My wife was attempting to run her first half-marathon, something she would not have imagined doing just months ago.  We participated in the ceremony to review our wedding vows prior to the race and then ran the full 13.1 miles together.  I feel so fortunate to have been able to run with my wonderful wife and share in her great accomplishment. 

          Unfortunately, this week also highlighted the affect that Parkinson’s Disease can have on one’s ability to run.  Early in the week we had dinner with one of my wife’s friends, who we just discovered has Parkinson’s Disease after I announced my plans for “Run-the-World”.  A former avid runner, our friend hasn’t run for years now.  Later in the week, I received a friendly reply to my request to meet with the Dubai Support Group when I am in their city in April.  This person graciously offered to support my project, but let me know that unfortunately they would not be able to run with me because of the impact Parkinson’s Disease has had on their balance.

          I have a distinct memory of the day I became a distant runner.  As a sophomore in high school I was considering trying out for the high school track team to run the 1600 and 3200 meters.  However, I wasn’t sure I could run that distance, let alone race it.  So I used my car’s odometer to map out a 2 mile course – this was long before GPS and Mapquest. I still remember the fence that marks the 1 mile marker from my childhood house and served as my turn-around point that day.  I struggled a bit, but completed the run and gained the confidence to pursue track and cross country in high school.

          Since that time I have continued to participate in road races with a commitment that has waxed and waned over the years.  However, it has always been reassuring to know that when I have the motivation to train – I can run the races I want.  Nowadays, I notice a very slight lack of coordination in my right leg when I haven’t taken meds, but can’t image that I may not be able to run one day because of  Parkinson’s Disease.  Therefore, in April I will be “RUNNING” the World, because I can….and because many people with Parkinson’s Disease can’t…but hopefully one day advances in medicine will allow everyone with Parkinson’s Disease to be able to “RUN” their own World.

444 Parkinson's Foundation and other updates

A real brief message to let everyone know about exciting progress for Run-the-World 4 Parkinson’s Disease in the past month

-          444 Parkinson’s Foundation is now incorporated in the state of Nevada  (see logo and charter!).  We will be proceeding with measures to be granted tax-exempt state from the IRS and Nevada.  More to follow on the Foundation's goals.

-          Local Parkinson’s Disease organization contacts established in Singapore, Macedonia, Croatia and Slovenia.  I can’t wait to meet and work with those affected by Parkinson’s Disease all over the world.

-          I promise to open the 444 Parkinson’s Traveler Facebook page by the end of the weekend.  Looking forward to connecting further with everyone as we move forward with this project.

Take care,

Mark

World Parkinson Congress

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.

-          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.

-          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:

-          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

First I want to thank everyone for all the wonderful messages of support for myself, my family and Run-the-World 4 Parkinson’s Disease.  Lila and I were so happy to hear from all of you, including so many who have personal connections to Parkinson’s Disease.

               

To answer a few of your questions:

-          My idea for this project developed over about a 2 week period.  For the past few years I have been planning to take a trip that would circumnavigate the globe around the time that I retire from the Air Force.  My plan was to divide the trip into 3-4 segments and have different family members meet up with me for the different segments.  In addition, over the past year I have been trying to find a Team Fox event to participate in - originally thinking about doing one of the triathlons in which they are involved.  I am not sure how I merged these two ideas into one project, but once I did the basic frame work for Run-the-Word was put in place pretty quickly.

-          The 444 theme was Lila’s idea to give us a unique identity for this project and the foundation that we are in the process of establishing.  As she likes to tell me - she is full of good ideas!

-          Packing for the journey, will be light.  A small backpack that I can run with and essentials including, a few of my Run-the-World  t-shirts, extra running shoes, tablet, camera and just a few other items.  The heaviest item might be my passport, with all the extra pages for visas.

               

I am currently on my way to Montreal to attend the World Parkinson Congress.  I became aware of the conference a few months ago, shortly after I began considering this project and it seemed like a great meeting for me to attend for several reasons.  In addition to providing continuing medical education credits for medical licensing, the conference offers a look at the latest research activities, sessions designed for patients and hopefully will be a great opportunity to network and find opportunities to promote my project.  This will be the third time the meeting has been held, with previous conferences in Washington, D.C. and Glascow, Scotland.  You can see my photo in the meeting photo album and learn more about the meeting on the meeting website: 

World Parkinson Congress - my photo on the website

In addition to learning more about Parkinson’s Disease and promoting my project, I’m going to use this trip to test drive some of my travel blog plans.  In the coming months I hope to build a community with an interest in travel to help me plan Run-the-World – designing the run courses, selecting landmarks for my “official country photos”, recommending foods to eat, and generally planning an itinerary for the tourist that has 3 hrs to explore a city (I am pretty sure that guidebook does not exist).

                I will be in Montreal Monday afternoon to Friday afternoon, but my time to explore the city will be limited by a full conference schedule.  I have 2 personal goals on my “to do” list in Montreal:  1) See Olympic Stadium, which hosted the 1976 Olympic opening ceremonies, and 2) see a  Montreal Canadiens hockey game  (their season opening game against their rival, the Toronto Maple Leafs, happens to be on Tuesday and I already have my ticket).  I’ll write more about my reasons to have these items on my personal travel checklist in my post from Montreal.  Beyond that I am looking for suggestions for sites to see, things to do, places to eat, etc.  If you have been to Montreal, know someone that has been to the city, read something about the city…please post a comment and give myself, and others that might visit the city in the future, some ideas.

               

Finally, I am planning to use surveys to select a landmark site for an “official photo” in each country during Run-the-Word and will try this for Montreal.  Here are the DK Guide thumbnails for each site on my Montreal poll:

-       Hotel de Ville:  the city hall was created in grand French Empire style in 1872-78, and restored to its glory in 1922.  The marble hall features a statue of the first mayor.

-       Basilique Notre-Dame-de-Montreal:  in the center of Place d’Armes sits the Basilica, Montreal’s oldest and grandest Catholic church. Originally built in the 17^th century, a new building was commissioned in 1829.

-       Centre d’Histoire de Montreal:  this museum is housed in a handsome red-brick fire station, which has a gracefully gabled roof built in 1903.

-      Olympic Stadium:  finished in 1976, this magnificent hall does justice to the world stars and players who performed here.

Check out the poll in the margin and place your vote.  I’ll include a photo from the winning site in my post from Montreal later in the week.

               

As always thanks to all for your interest and support.

-Mark

To my family and friends - this post will probably contain some information about me that you did not know, so please don’t hesitate to contact me with questions/concerns.  To those I have not met – please understand that the following provides just a small snapshot of my very fortunate life.  To all - I look forward to sharing my story and this journey with all of you.  

I am currently a physician in the Air Force.  Three years ago, on 24 September 2010, I became a physician in the Air Force with Parkinson’s Disease.  Although the typical, subtle symptoms of Parkinson’s Disease began well before that date and the pathologic process that leads to the symptoms of Parkinson’s Disease certainly started long before that date – 24 September 2010 was the day I first took medications to establish the diagnosis, and the last day that I did not take medications to treat the symptoms.  Therefore, 24 September 2010 is the day that I became one of the estimated 7-10 million people world-wide with Parkinson’s Disease.

This disease that threatens my two favorite hobbies, sports and travel, has now given me a cause toward which to apply my experience and interest in medicine and humanitarian relief.  As I enter the 4th year since starting treatment for Parkinson’s Disease at the age of 44, I am planning a project to raise awareness and funding for Parkinson’s Disease research titled, “Run-the-World 4 Parkinson’s Disease”.   During the challenge, I will attempt to run 4 miles in 44 countries in 4 weeks/4 days, during the Parkinson’s Disease Awareness Month of April, with a start date of 4/4/14.

The idea for this project was a merger of two trains of thoughts - plans to do some traveling around the time of my retirement from the Air Force and a desire to get involved in Parkinson’s Disease awareness.  As the concept developed in mind, it took me some time before I considered telling my wife, Lila, and even longer before I told any other family members or friends and thus became committed to the pursuing the project.  Over the past 3 months, my small personal challenge has led to Team Fox enrollment, this blog, a Facebook page, t-shirts, business cards and a bunch of airline reservations and now there is clearly no turning back.

In the coming months, I hope to work with those of you that are interested to develop running courses, share travel experiences and recommendations, learn more about Parkinson’s Disease and promote Parkinson’s Disease awareness and research funding.  I am definitely not an expert writer and not particular tech savvy - it is a small wonder I have made it this far in creating a blog - so I imaging relying heavily on our interactions and your feedback to make the most of this blog and the project as a whole.  As I stated in my profile, I have traveled to over 80 countries and competed in many road races and triathlons over the years and I am excited about this challenge.  However, I am a bit anxious about my itinerary and I greatly appreciate those that will follow me as the 444 Parkinson's Traveler and provide advice and support.

Thanks, Mark