Are Parkies the same in London?

After a long flight, of which I slept most of the way, my Dad and I arrived in London, Heathrow Airport around lunch time after taking the red-eye  from California.  We had been told by our tour guide, that it would be best to stay awake until that evening, to allow us to assimilate to the new time zone.  How did I do you ask?  I made it about 3 hours then fell asleep!  It  apparently didn’t matter that the twin size bed in our hotel was covered by a light cloth that allowed you the pleasure of feeling every coil, spring and bed bug that might be sharing the mattress.  The “pillows”….if you can call them that, were basically like a towel mashed into a pillow case.  But that didn’t stop me from nodding off.   It was one of those naps where you don’t realize that you weren’t fully awake until you open your eyes and feel confused as to why it’s dark outside, while drool drizzles from the side of your mouth.  We find our way to the street to get something to eat.  The first thing I notice is that London has many pubs…..like ALOT.  The drivers are crazy and people are walking in front of cars, double-decker busses, and taxis without giving it a second thought.  Oh, and I hope you like meat and potatoes, because you can find that at almost every meal, with all the gravy your little heart can take!

London is a beautiful city, with friendly people who are eager to offer their assistance.  I couldn’t help but notice that I felt under-dressed wherever I went.  The men were gorgeous, like they cat-walked right off the fashion show stage and landed on the cobblestone roads of England.  But let me tell you, I just can’t trust a man who takes longer than me to get ready in the morning.  I would become competitive with his perfect hair and freshly pressed clothes.  We would be stealing each other’s beauty products and sharing tips on the best way to maintain a fresh manicure.

As my promise to Live On and Give On, I made arrangements to speak to the PLOG’s (Parkinson’s London Group).  As we had an informal chat around the table of a local pub, I noticed some differences in London Parkies from the American community I was familiar with.  Very few had Deep Brain Stimulation (DBS) surgery and it appeared that seeing a Neurologist, let alone a movement disorder specialist, was not easily accessible.  The public healthcare system can be limiting and DBS was usually reserved for Parkies who were at a more advanced level of the disease, not responding to medication or a lower level of mobility.  The group was amazed by my early on intervention of DBS, (which I got the following month after my diagnosis in 2010) and had many questions about my experience.  One thing that was common with all the Parkies I meet, regardless of where they live, is that they are eager to share information and crave reassurance that they are not alone.

The next day, I would be traveling up the tube (subway) to the headquarters of the Parkinson’s UK to meet the staff and see what their role was in the United Kingdom.  I was greeted by a man named Luis, who would be my guide for the day.  The office had multiple floors, but to access them, we had to use the lift (elevator).  After brief introductions and proper hand shakes, we were directed into the lift with Luis.  As I stepped in, I realize that it is incredibly small.  We all squeeze in, toe-to-toe, nose-to-nose, I was just praying I didn’t sneeze.  You know that awkward silence that happens when people are on the elevator.  Proper etiquette states that nobody makes eye contact, we are all to be facing the same direction and no one dares pass gas.  Not  in this lift, those rules don’t apply, well except the last one.

I spent the next few hours meeting the staff that runs the mothership Parkinson’s UK.  I was very impressed.  Teams of people made up departments who are designated to manage certain parts of the non-profit organization from financing to social media.  Every person I had the honor to meet that day had such a passion for their work.  Many had never been directly impacted by Parkinson’s, but after getting a job at the office, they became passionate about people impacted by this disease….. and boy did it show!

As we sat around a table eating adorable little sandwiches, I had the opportunity to get information about the differences between London and my home in the United States.  There is only one large organization, the Parkinson’s UK, which is then broken down into geographical districts, where services are provided throughout the community, which meant there were not the politics that many of us Parkies in America struggle with.  People donate to the Parkinson’s UK to support Parkinson’s research, fund support groups and aid in providing community events to raise awareness.  This is unlike much of the support in the states, where you can see many programs, organizations and non-profits that do not work together. This leads to overlapping resources, having multiple services in the same area, while other regions have no support.  It was obvious we lack the synergy that I felt at the Parkinson’s UK offices.

I was also impressed of how strongly they relied on the Parkinson’s community to guide them in the direction of what they felt was important or missing.  This applies to areas of research, topics that would benefit from more education and what services are needed that are not being provided in the UK.  Some states in America view the multitude of Parkinson’s organizations as competition and do not consider how they can compliment each other, leading to a larger impact.  Like I always say, we are stronger in numbers.

As I spent a couple more days in London, I got to enjoy the culture. Explored Windsor castle where the Queens apartment was located, stood out front of Buckingham Palace, (weird nobody invited me in…. I feel like a Royal) learned some of the English lingo and even found a Frozen Yogurt shop to feed my addiction.  I enjoyed meeting new friends and look forward to being able to go back to London one day, because I this city was top of my list!  Cheerio!  Next stop…..Paris!