Running For Rare Diseases

On April 21st, participants who took part in this year's Boston Marathon, not only paid respect to those who tragically lost their lives or were injured on April 15th 2013 in the Boston Marathon bombing, but together showed  the world that Boston remains strong.

The Boston Marathon is a very challenging course with many participants which can slow a runner down considerably. I heard about a group calling themselves the "Running For Rare Diseases Team" and appropriately the theme for this year's marathon was "we run together", where members of the team are paired with patients representing a variety of over 20  rare diseases. One runner, Andrew Scholte, completed the marathon in an amazing time of 4:01:28. Andrew, a scientist at Genzyme (which is one of the companies making the Enzyme Replacement Therapy for Gaucher patients), was paired with Emma Rooney who is a fellow Gaucher patient.

As Emma is not in Boston at present, she ran simultaneously in the town where she currently resides, proudly wearing green shoe laces which were a creative and novel concept used to symbolize Gaucher disease Awareness Month last year. 

Most of my family and friends enthusiastically joined in by wearing green shoe laces to show support for Gaucher Awareness Month last year. Perhaps this could become a yearly way of marking the month. You'd be surprised how many people noticed the bright green laces and asked about them, creating a great opportunity to speak about Gaucher and spread the word.

I heard from Emma once she had completed the marathon in just over 5 hours - and wished her congratulations on a great achievement. This was part of her message:

"It was a neat experience connecting with the Boston Marathon in my own small way. After just over 5 hours I had completed the marathon distance I set out to do and headed home to track Andrew's final kilometres to the official finish line. It was pretty emotional knowing that he was running for me and that last year he didn't get to finish his run because of the bombings."  

Emma's remarkable story was the inspiration for my article this week in The Huffington Post which is about setting achievable goals.

The Davis Phinney Foundation for Parkinson's

I have been writing once a week for The Huffington Post since November 2012, sticking to my topic - living with chronic disease. My article last week was dedicated to Parkinson's Awareness Month. Around the world people are making a stand, doing whatever they can during April to raise funds towards research and development, in the hope of finding a cure, and bringing the plight of those living with Parkinson's to the world stage. This week I have written about "support" which we all need in one way or another, whether you are a sufferer or a caregiver. Take a moment to read my latest article on The Huffington Post "Internet Support Groups".

Joining on-line support groups is an additional tool that in the last few years has increased in popularity. Particularly for those who live in out of the way places, having little or no interaction with others in similar circumstances, this is where the Internet comes into its own. Bringing people together from around the world with a common thread, I have found it very helpful and of great support sharing information, keeping well informed and in social contact with others in similar circumstances. Even if you feel you are coping well and managing alone, the sense of camaraderie being in touch with fellow sufferers and their families is without doubt of great benefit.

I came across a public charity called "The Davis Phinney Foundation for Parkinson's which dedicates itself to helping patients, their families and caregivers with information and tools to live the best life possible. The Foundation was founded in 2004 by Olympic medal winner cyclist Davis Phinney, who was diagnosed with Parkinson's disease at the age of 40. Today he is a role model and an inspiration to us all. I spent some time reading thoroughly every page on their amazing site and congratulate the Foundation on the marvellous work they do. I have not come across another site quite like this before and urge you to take look at The Davis Phinney Foundation for Parkinson's.

Parkinson's Awareness Day 2014

I've always been pretty good at remembering family and friend's birthdays, after all, they occur on the same date every year, so how hard can it be? When I found Dr. James Parkinson's birthday was April 11th, unknown to this doctor who has long passed, his unforgettable name lives on through every sufferer, diagnosed with a degenerative neurological disease that bears his name; how can I not remember 11th April? I guess it's therefore fitting, that 11th April represents Parkinson World Awareness Day. As much as Dr. Parkinson undoubtedly initiated the huge medical discovery of a disease that today millions suffer from, this is not the legacy by which many would like to be remembered. I would prefer to be remembered for something joyful and wonderful; not have my name associated and marred by a terrible disease.

I try to think positive - always remain hopeful, for at this very moment, someone out there, a doctor or scientist could be making an amazing breakthrough, finally solving the puzzle and finding a cure that we all pray for. Just imagine how wonderful it would be if he or she were to succeed, and we could start celebrating "Parkinson's Cured Day", heralding the name of a person who would no doubt change the lives of all those suffering Parkinson's around the world. Call me a dreamer, but I very much hope we get to see this day soon.

You may think I'm unrealistic and a day dreamer, but sometimes dreams do come true, despite seeming out of reach. Since I was a teenager, I have dreamt of visiting Paris. Never having been, and reaching the age of 50, now accompanied by Parkinson's, my dream seemed to be fading fast after writing about it on 12th November 2013 in my blog; I gave it no more thought. Unknown to me, my devoted husband and dear family, having read about my wish, decided they were going to make it happen, come what may. Individually they all came to the conclusion that I must see Paris now, and not wait till later, when it would be too late, and I'd not be able to travel. So to cut a long story short, they clandestinely forged a plan. Apparently there were many e-mails and phone calls back and forth, yet I hadn't the slightest clue of what wonderful surprise they were cooking up for me. As an extremely generous and totally unexpected  thoughtful silver wedding anniversary present, both sides of our families joined forces and sent my husband and me to Paris for four nights. Paris in spring time - what could be more romantic and memorable? To those family members, I don't know how to express my thanks and appreciation for this most extraordinary heartfelt gift that I will remember for the rest of my life. THANK YOU!

In conclusion, as today we mark "Parkinson World Awareness Day", this year I personally mark it as a day of "hope". I remain optimistic that a cure will be found, for if my long time dream of seeing Paris came true ….. maybe other dreams can also come true!

As April is Parkinson's Awareness Month, you don't need three guesses what my article is about this week in The Huffington Post. Please help me spread the word by taking a moment of your time to read by simply clicking on the link. 
  

Taming Parkinson's Disease

I had carefully planned our garden, deciding to buy only hardy plants requiring little water and maintenance. Wanting to create a calm soft colour scheme of pinks, lilacs, mauve and white - I had a vision in my mind of tranquillity, an enchanted English rambling garden, which I would enjoy, and be a special place reflecting what I love most.

Trying to tame Parkinson's is much like taming my garden, for it's impossible as both took on a life force of their own. The garden has indeed flourished, greenery and flowers exploding out of the rich soil resembling an English garden, a little quirky, it has a touch of enchantment as I'd envisaged. However, the colour scheme I had thought long and hard about has gone out of the window. Every colour flower possible is bursting forth with iridescent colours that are almost florescent. I tried taming the colour scheme by removing the dazzling red geraniums that are so bright, their luminous splash of colour are like neon lights. 

I thought I had removed those robust bright red geraniums, but they returned with full force as if to say, "you can't get rid of us that quickly - we're here to stay!" Yellow and orange flowers that I did not plant, have magically popped up everywhere, creating a kaleidoscope of colours. So just as I have resigned myself to living with Parkinson's, I have grudgingly agreed to a multi coloured garden. Some things are just not within our power to change and taming my garden is as fruitless as trying to tame Parkinson's!

April is Parkinson's Awareness Month, and in Holland, the fields of tulips like roaming carpets of colour that come into bloom around this time of year seem to stretch as far as the eye can see. Very appropriately the red tulip is the international symbol for Parkinson's. The picture here is of a particular strain of red tulip with delicate white tips that was named especially after Dr. James Parkinson.