All I Want for Christmas: an open letter to Santa

Posted: December 19, 2011 | Author: msathlete | Filed under: blind, Christmas, healthy eating, L’hermitte's symptom, ms, Multiple Sclerosis, optic neuritis, Santa, vegan | Tags: Christmas, MS, Mutiple Sclerosis, Santa, Santa Clause | 4 Comments

Dear Santa

This year I have tried to be as good as possible. I have exercised like you suggested, eaten lots of fresh veggies and fruits, done my best to reduce stress, remained positive, and most importantly tried to help my neighbours as often as I can. All in all Santa, it’s been a great year. I have had very few issues with my Multiple Sclerosis (MS) and am pretty darn happy.

Because of your suggestion Santa, I do not need anything this year, however some of my friends with Multiple Sclerosis do. So I was wondering Santa, this year, would you mind helping them out?

And if you can Santa, then could you please help my friends with MS who can’t walk, walk again? It would be great if they could walk on Christmas morning.

And if that is not possible Santa, could you please help my friends with MS who are unable to get out of bed each day because of fatigue, feel energetic? I would really like it if they had enough energy to decorate the Christmas tree with their families.

And if that is not possible Santa, would you be able to help my friends with MS who have seizures, spasms, tremors or spasticity regain control over their bodies? It would be so much easier for them if they could open their Christmas gifts without shaking.

And if you can’t do that Santa, would you be able to give my friends with MS who have difficulty seeing, 20/20 vision? I would really love it if they could see what you look like.

And if that is not possible Santa, I would really appreciate it if you could help my friends with MS who have difficulty speaking be able to carry on conversations like everyone else? It would be great if their sons and daughters, brothers and sisters, mothers and fathers and grandmothers and grandfathers could hear them say I love you on Christmas day.

And if you can’t do that Santa, if it is not too much trouble, please help my friends with MS who are depressed feel joy. Everyone should feel joy at Christmas.

And finally Santa, could you please ask the MS Society of Canada to return the MS Centre to my friends? The MS Society of Canada just closed it and is selling our building. Yes Santa, in a heartless move they did that right before Christmas.

Thanks Santa. Merry Christmas to you, Mrs. Clause, all of the elfs and the reindeer.

susan

P.S. Just in case you do stop by I will leave a glass of almond milk and some vegan brownies for you on the table by the big comfy chair.

MS Inspiration: Blind Vision

Posted: November 1, 2011 | Author: msathlete | Filed under: blind, endurance, iron race, marathon, ms, Multiple Sclerosis, oc6, optic neuritis, outrigger, paddling, Queen Lili'uokalani Ocean Canoe race, racing, visually impaired | Tags: blind, canoe race, Hawaii, MS, multiple sclerosis, oc6, outrigger, paddling, visually impaired | 5 Comments

September 2011, while at the Queen Lili’uokalani Ocean Canoe in Hawaii race I was approached by a young woman by the name of Mackenzie. She wanted to exchange club t-shirts. I was about to say no when she said “I am with the blind paddlers team”.

Mackenzie now had my attention. I listened in amazement as she told the paddlers story and without further hesitation made the t-shirt swap. It was a moment in time I will never forget.

Blindness is a deeply personal subject for me. Although I am not blind, I have been twice in my life; both times caused by MS attacks. I spent years in my own little bubble avoiding everything around me as a way of minimizing the risk of another attack. So when I hear or see the visually impaired getting out there and doing what sighted people do I am flooded with emotions and feel overwhelmed. I am inspired and awestruck.

In the case of the blind paddlers I encountered in Hawaii (NAC Makapo Outrigger) I find myself asking the question, where do they find the courage and inner strength to achieve such an incredible goal?

The Queen Lily race is an incredible achievement for any paddler. The 26 kilometre outrigger canoe race brings together over 140 teams and takes between 2 and a half to 3 and a half hours to complete. In 2006 the first team of blind paddlers made their way from California to Hawaii to compete as part of a six man crew. They paddled alongside other athletes from around the world completing the race in just over three hours.

“They were able to prove to the whole world that the inability to see would never hinder the vision of overcoming a disability and achieving a goal that even sighted people have difficulty with.”

Soon after the race the O.C. Makapo Aquatics Project was formed by two of the paddlers (John Chavez and RJ De Rama) and the club has been paddling at Queen Lily ever since.

I believe these two men could see what many sighted people cannot. They believed in themselves and that they could overcome their disability. They showed the world it was possible. And they shared that vision with others inspiring them to do the same.

Links

Have an inspiring story about someone you know. I encourage you to contact me so we can share it with others.

Delving into the Unknown: MS and Heat Training for Hawaii

Posted: August 23, 2011 | Author: msathlete | Filed under: exercise, fitness, heat training, L’hermitte's symptom, ms, Multiple Sclerosis, oc6, optic neuritis, outrigger, paddling, racing, training, Uhthoff's Syndrome | Tags: heat training, L’hermitte's symptom, multiple sclerosis, optic neuritis, outrigger, Uhthoff's Syndrome | 2 Comments

Heat terrifies me.

Thus far, by working at my fitness level and overall health, I have had very few issues with my Multiple Sclerosis and have managed to minimize the impact of a number of my symptoms. I’ve progressively trained my body to manage the demands of physical stress and have been able to participate in some pretty neat swimming, dragon boat and outrigger competitions. What I haven’t done as of yet is pushed my body in extreme heat.

Two summers ago, I was selected to be part of a crew of women outrigger paddlers who were training for a race in Hawaii. Quite frankly, I was honoured; I was new to the sport and the race would be both physically and psychologically demanding – two things about a race I really like. After extensive consideration, sadly, I turned my seat in the boat down. I just didn’t know if my body could manage the heat in Hawaii.

The hardest part of having MS (for me), is having to say no.

So, in my typical “don’t say no because of MS” fashion I decided that I would one day go to Hawaii to race in an outrigger. I immediately began heat training spending 5 to 10 minutes in the steam room after my workouts to try and build my tolerance to physical heat. I also increased my training intensity so my body would develop a greater tolerance for exercise educed overheating.

It is now two years since I made that decision and I am 1 week away from leaving for Kailua-Kona, Hawaii and 2 weeks away from racing in the Queen Lili’oukalani Canoe Race with 5 other women from Ocean River Paddling Club.

Here’s what I am up against:

I know that I have Uhthoff’s Syndrome, which is a worsening of neurological symptoms related to MS when the body becomes overheated from hot weather, exercise, fever, saunas or hot tubs. In Hawaii, I will be faced with a double whammy: overheating from hot weather and exercise (the race).

I also know that I have had the following symptoms in the past, symptoms I have fought so hard to keep in the past by remaining fit:

optic neuritis – visual problems, temporary blindness
numbness/tingling in my hands, arms, legs and feet
fatigue and weaknes
balance and dizziness
L’hermitte’s symptom is the occurrence of episodic tingling and electric current-like sensations down the back, into the arms and even down the legs

What I don`t know is if the heat training has been enough.