September 10th was the three month anniversary of my CCSVI treatment, and what better way to celebrate then to head over to Sidney on Vancouver Island to attend a conference put on by the National CCSVI Society: New Discoveries New Beginnings. The purpose of this event was to bring together people from across Canada and deliver the latest in CCSVI research.
Prior to the start of the main conference, various groups from across Canada that have been working on CCSVI related issues (fundraising, activism, research, awareness raising etc.) came together to meet for a roundtable discussion to share what we have been working on and collaborate on how we might be able to work together. Walk a Myelin Our Shoes foundation CEO Carmen Amundsen and I were both invited to the meeting to represent WAMS, which we did with great pride. My friend Michelle Walsh, who I have previously only spoken to via the internet, was also at the roundtable discussion. Finally getting to meet her was an emotional moment, and I felt like the conference was off to an amazing start!
While each group at the meeting varied widely in terms of the work they do, all of us share the common goal of improving the lives of people living with MS, and supporting the CCSVI movement here in Canada. The meeting ended with the decision to form a collective; working together wherever possible, and providing each other with mutual support as we endeavor to help people in the MS community. I see wonderful things coming out of this new collective, and I am excited to be part of a group of Canadians who will be making a difference for the rest of our peers. It is wonderful to not only be part of this new team but also know that I have made new friendships within the group across the country; great for when you want to travel and have people to visit along the way! Red Wine in Alberta, a visit to a farm on day in Saskatchewan and shopping in Toronto awaits : )
Sandra Birrell, President of the National CCSVI Society, and her team did such a wonderful job and I commend them for their hard work, as I know how hard it is to put on large scale events and organize speakers, food, rent space etc. I’d like to give a standing ovation to everyone at the NCS!
The highlight to my day was meeting Dr. Kirsty Duncan. I have long since admired her from afar, watching all of her speeches about CCSVI, reading about her efforts and cheering her on from the sidelines. When I introduced myself I was not prepared for how emotional the moment would be, I definitely shed a few tears as I said thank you to her for all the support she has given to those with MS. She asked me my name and my story, and as I told her she too began to cry, and hugged me with such warmth. She asked about how my strength had improved since the surgery, and she got even more excited when I showed her how I am now able to walk. She grabbed my hand and started to tell people that they needed to hear my story; that six months ago I went from being fitted for a wheelchair, to walking down the aisle in July! It made me blush to see someone who I look up to get so excited by me and my story.I guess as I have been living it I don’t get as excited by it as it has been more of a struggle then an excitement. It is true that more people should hear these positive stories, which is why I blog here. I made sure to introduce WAMS founder Carmen Amundsen and Member of the Board Jennie Defoy to Kirsty Duncan as well, as I had to introduce Kirsty to the wonderful WAMS Foundation team who helped me!
I ended up being interviewed for a documentary that was being made that night, thanks to Kirsty asking them to add me in. I’m not sure if I’ll make it into the documentary, but it will be a really big honor if I do. What was really touching was that at the end of her speech that night, Kirsty Duncan mentioned me by saying she will always remember a girl she met who was fitted for a wheelchair six months ago and in July walked down the aisle thanks to her CCSVI treatment. Our entire table was crying, and I was so flattered to know that she was speaking of me.
I hope you get to read this blog post Kirsty, as I would like to say thank you again for taking the time that day to talk with me, for getting excited about my story, and for sharing it with others during your speech. It meant so much to me, you are a true inspiration and I am so grateful for having met you!
Dr. Arata and Dr. Hewitt, the two doctors from Synergy Health Concepts where I had my CCSVI treatment, one of which did actual treatment (Dr. Arata) and the other was the one who did my intake and post treatment visit (Dr. Hewitt) were also there. Dr. Arata seemed quite moved by the fact that I managed to get well enough to walk down the aisle at our wedding, without assistance, as he remembers how progressed my MS was when I came into treatment. Oh and I won the Dr. Bill Code’s books in the silent auction that I have been wanting for a while so that is the next up on my to do list is read them! I got to meet him the next day, and have him sign them for me, yes I am a nerd like that : )
I am happy that I went to this conference. I left feeling full of energy, ready to get even more active in the MS community and in the CCSVI movement. Not to mention it was a beautiful weekend and the ferry ride both there and back was lovely, and we had the chance to enjoy fresh Island air that I often miss, being an Island girl myself.
I encourage everyone to try and get out to any type of conference, workshop, gathering, rally etc. related to CCSVI if you can. It’s a great way to learn about MS and meet other members of the MS community. Even if you have not had the CCSVI treatment, or if it is not something that you are considering at this time, I would still recommend you go and check these opportunities out.
The things you learn, and the connections you make, will never fail to surprise you.
Happy Fall everyone!