I received an email a couple of days ago which really made me smile and has had quite an impact on me. So much so that I wanted to share it with you all so you can see Siobhan’s warm heart and gratefulness.
I found your email on your blog. I hope you don’t mind me using it.
I just stumbled onto your blog yesterday and absolutely love it because it gives me a sense of what is happening to others living with ALS/MND in the world. I find the stories very inspirational.
I am from Canada and have started to share my own journey with ALS in hopes to raise awareness. I have helped organize many fundraising events. One that I am very proud of was done last March 2011, an aerobic-a-thon at the University of Ottawa. Last year it captured media attention and over 100 people participated dancing and wiggling for four hours. We raised just under $10 000. Well, at least it is a start 🙂 Here is a link: http://www.cbc.ca/news/canada/ottawa/story/2012/03/09/ottawa-als-siobhan-rock-aerobics-marathon.html. We hope to raise more awareness and more money this year.
Also, I am working on a YouTube blog. I just want to share to help raise awareness I would be honoured if you had a chance to view it. Your feedback is more than welcome. If you think it is appropriate, I would be happy to share the blog with others. Here is the link: http://www.youtube.com/channel/UC41Sp7kgOsQStFbB_UPgHTA/videos?view=0
Hope it works, if not I can be found under my name Siobhan Rock or under “conversations with siobhan”
Warmest regards and thank you for this incredible blog you have created.
As mentioned in the email, Siobhan now has a video blog on Youtube (link is above):
In her videos Siobhan answers a lot of key questions about MND/ALS such as, ‘does it hurt?’ ‘What’s the hardest part?’ ‘What has changed?’
From 2.45 of Episode 4 for me is a very key part – she shows the thought process of being given a glass. She thinks she can hold it and outstretches her arms but shortly realises she can no longer do this which usually ends in dropping it. A very good visual demonstration of how MND affects people.
I really hope you take the time to watch some of these documentaries as I think everyone can learn a lot from them.
A little message from Siobhan:
“My name is Siobhán and I live in Canada. I have always loved the great outdoors (except for mosquitoes), playing sports and teaching Physical Education. In summer 2011, at the age of 39, I gave birth to a baby boy, celebrated my daughter’s 2nd birthday, my eldest son’s 20th birthday, my wedding anniversary — and I was tragically diagnosed with MND/ALS.
At the same time, despite the challenges this disease is placing on me, I strive to live my life as fully as possible. I am thankful for my children, Jérémie and the two little ones, Ella, 3 years, and Dominik, 18 months and for my husband, Tom. The support from my family and friends is precious and provides me with much strength. This uncertain journey, of course, is rousing some anxiety and fear but I am determined to meet these challenges with serenity and a smile.
Thank you for visiting this YouTube video blog where I share my journey living with MND/ALS in hopes to help raise awareness.”
The following video is a happy-sad story. It tells of her sporting history, her young children, her older boy, how the disease affects everybody mentally and physically, and it really hits home how devastating the disease is. This is a very moving and powerful clip.