Category Archives for "Carmen’s Story"

2011 in Review

2011 was an amazing year for the WAMS Foundation, but also for me personally. In March, I travelled to San Diego with a group of very supportive family and friends (including WAMS co-founders, Melanie Pump and Jennie deFoy) to receive the CCSVI treatment. The treatment was successful. The Cognitive Fog that I had lived under for 2 years was lifted and my sight which had never returned to normal after my MS-induced bout with Optic Neuritis returned to normal. I could see red again!

One of the other supporters on this trip was Brian Nykon of Captured Films, a documentary film-maker. Based on footage from my experience before and after the treatment he has begun a documentary on MS & CCSVI. The documentary is in the beginning stage, but we’re very excited about his progress and the future of the project.

Prior to obtaining the

CCSVI Treatment, I had worked hard to support and assist MS patients, primarily through fundraising for the MS Society. However, I now wanted to help more directly, which is how the WAMS Foundation was born. One of the first steps in the building of the Foundation was reaching the public, which today requires a website. For that, we thank Lewis Communications, who graciously offered their time and advice. They continue to help us today. For getting the word out, I want to thank Kumiko Umeno for inviting us to her client appreciation evening and introducing us to her community and particularly, a big, big thank-you to Michele Mateus, our first recipient, who has played a huge part in our communications team. Michele is a social media genius and without her Twitter and Facebook skills, we wouldn’t be as known as we are today.

The first WAMS Fundraiser was held on May 13, 2011 and was kindly sponsored by Richmond Autobody. Additionally, I was overwhelmed by the incredible resources and support that were brought to us: the room looked fantastic thanks to the materials provided by Sweet Beginnings, the lighting – (who knew this was such a huge endeavor?!) –  was all taken care of by Kitty Hoffman. We also had many, many generous donors contribute silent auction items which helped bring this event to a resounding success raising nearly $18,000. Some of these funds were used to set up the Foundation as a formal not-for-profit, but the majority of the funds went to supporting Michele to have the CCSVI Treatment.

Michele’s symptoms were much more pronounced than mine had been. When we met her she was off work after suffering a major MS relapse that had left her unable to walk. You should see Michele today! She is now walking and living a full life. You can read more about Michele in our past blogs.

The success continued with our first corporate sponsorship brought to us by the Commercial Division of REALTORS® of the Real Estate Board of Greater Vancouver. They helped up raise further funds which combined with the existing reserves allowed us to support two more MS patients to receive financial assistance. Jena and Jane. Both women elected to undergo the CCSVI treatment and have had successful results. You can read Jayne’s blog post about her treatment on our website.

It goes without saying that we are very grateful to these generous sponsors and definitely encourage you to contact them should you require any of their services – please click here or visit the “Sponsor” tab for their contact information. We’d also like to thank all of our wonderful volunteers who have dedicated time to our cause. We are honoured by your dedication and are so very appreciative.

My own treatment was the start of an amazing year, but helping Michele, Jena and Jayne were really the highlights. I look forward to helping more MS patients in the upcoming year.

-Carmen

A Group Hug for Success! Jennie deFoy, Myself, Michele Mateus and Melanie Pump at our first fundraiser

New Discoveries, New Beginnings

The past couple of months have been very busy for WAMS, hence the lack of blog post from me. However, we recently had a wonderful experience that I want to share.

WAMS was invited to attend a conference organized by the National CCSVI Society http://www.nationalccsvisociety.org/ and very appropriately called  ”New Discoveries, New Beginnings.” The intention of the conference was to provide a platform for leading Canadian researchers and physicians to present medical research and patient education on how CCSVI is emerging as a new vascular disorder linked to many poorly understood diseases, such as MS. Second and equally as important, it was a networking event for all those working in the CCSVI community.

The first part of the conference was a roundtable event for groups active in the CCSVI Community. I attended the event with our first recipient, Michele Mateus. We were surrounded by people, like ourselves, who have been committing hours and working hard to support MS patients and/or advocate the benefits of CCSVI. Other attendees included, Siobhan MacQueen from CCSVI Alberta, Sandra Birrell from the National CCSVI Society and Debra Golden from CCSVI Grand Prarie (Just to name a few). It was very inspiring to hear the efforts made and the successes these groups have had. Through the discussion, we realized we would be more effective if we worked together and consistently shared information. To facilitate this, we formed a collective, which will regularly meet via conference calls and through social networks.

Also, at the roundtable event, we were fortunate to make a special connection with Linda Molyneux from the CCSVI Coalition. Her group focuses on achieving the recognition of CCSVI as a treatable medical condition, not solely as it relates to MS. WAMS has since become a Partner in this coalition as we support their goals. Linda has already shown that mutual support by meeting our next recipient, Jayne Thomas, as we were unable to travel to Ontario to meet her ourselves. After their meeting, we committed to helping Jayne fund her CCSVI treatment (to be discussed in the next blog post. Promise! J) We wholeheartedly thank Linda for her devotion to the cause and for her support.

We made another great connection at the conference with the honourable Dr. Kirsty Duncan<http://kirstyduncan.liberal.ca . She is the Liberal MP for Etobicoke North and she’s been courageously advocating for MS patients at the Parliament in Ottawa.  Yet another inspiring person working tirelessly for our cause. If schedules allow we’re hoping for Kirsty to attend our next event, so all our supporters will have the pleasure of meeting her and hearing about the bill she has recently tabled in parliament to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency. http://kirstyduncan.liberal.ca/release/dr-kirsty-duncan-tables-bill-to-establish-a-national-strategy-for-chronic-cerebrospinal-venous-insufficiency-ccsvi/

All in all the conference was a success and we left feeling part of the community that is working to improve the life of MS patients. Our sincere thanks to the National CCSVI Society http://www.nationalccsvisociety.org/ for organizing the event.

Thank you for taking the time to read my blog and for supporting our foundation. As always, please feel free to contact the Foundation should you have any questions, we continue to be here for you guys and will always help in any way we can.

As I mentioned, Michele Mateus also attended the CCSVI conference and she’ll be sharing her experiences in the blog as well. Thanks to Michele for again taking the time to share her experiences with our supporters!

Carmen’s First Post

I figured that it was about time that I put a blog post up on the website so that those of you who don’t know me and the story of the Walk A Myelin Our Shoes Foundation can learn about why we are here and why this organization was started.

Two and a half years ago I was diagnosed with Multiple Sclerosis. It was a devastating time for me and was completely unexpected. Unlike many, I did not experience very many symptoms. I was in Mexico at my sister’s wedding and went completely blind in my right eye. As I was in Mexico, I did not have the luxury of visiting a hospital immediately so wasn’t able to seek proper medical attention until a week after the blindness occurred. I still remember the day so vividly at St. Paul’s hospital in Vancouver; I went in by myself thinking I simply had a sinus infection that was impeding my vision. The last thing I expected to be told was that I had Optic Neuritis, a symptom indicative of MS. Within months I was officially diagnosed with MS, a diagnosis that has changed my life forever.

Over the next year I began to experience other symptoms including vertigo, fatigue, vision loss, heat sensitivity and pain in my legs. My life had been completely turned around, I went from being an active person to someone who needed to come home and take a nap after 8 hours of working in an office. I had cog fog and was forced to cut back my hours at work as I just could not get out of bed some mornings. I went for my yearly check up and was told that I had new lesions appear on my MRI and that I needed to begin on a beta interferon in order to hopefully stop the disease from progressing.

I attended an info session on the number of drugs that were available to me; unhappy with all the choices I began seeking alternative therapies. I started going to a naturopath and taking supplements that helped gain some energy back. I went to a massage therapist and changed my diet. Nothing made a significant difference. Then, one night I saw an episode on W5 talking about the liberation treatment discovered by Dr. Paolo Zamboni, I began to look into it further and decided that this is what I wanted to try.

On March 1, 2011 I attended the Hubbard foundation and was liberated by Dr. Ponec, all I can say is I HAVE MY LIFE BACK. I don’t need to take naps after work anymore, I no longer experience cog fog or pain in my legs. 2 weeks ago I was able to walk a full sized golf course! I didn’t need a cart!!! This was huge for me as I hadn’t been able to do this since my diagnosis.

With my new found energy I decided that I needed to help those that could not help themselves. My cousin Melanie and my girl friend Jennie shared my sentiment, and as a result we began the Walk A Myelin Our Shoes Foundation. I was fortunate that I could afford my surgery, now I wanted to help those that could not. As I began researching into how to start a foundation I realized that the liberation treatment/CCSVI was not the only alternative therapy available to those with MS, it made us see that this disease affects everyone so differently, and as such, so do the various treatments. That’s why we are here, to help those that cannot afford those various alternative treatments, because everyone deserves the chance to get their life back.

Today I am over 4 months post op and I feel better than I have in ten years. I am so excited to be helping others like Michele (our first recipient) and I can’t wait to help even more. As devastating as my diagnosis was I wouldn’t change it even if I could. It is what gave me the strength to start this organization and help those that need our help!

Thank you all so much for taking the time to read my blog. Please feel free to contact the Foundation should you have any questions at all, we are here for you guys and we will help in anyway we can.

All the best

Carmen Amundsen