Multiple Sclerosis Society of Canada - Calgary & Area Chapter
Our Story Why We Exist
My name is Fiona Fifield and I was diagnosed with Multiple Sclerosis in September of 2005.
During the May long-weekend of that same year, I was hit by a drunk driver. My symptoms started a few weeks after the crash. Prior to my diagnosis, I had spent three weeks in the hospital with a kidney infection, lost most of the strength in my left leg, as well as the loss of colour vision in my right eye. My diagnosis solidified what we were sadly thinking but not saying.
In my first few months, I found how fast my disease was progressing. I had my first MRI and the results shocked everyone. I had 16 lesions, four of them active disease. I had my second MRI two months later and was up to 19, with seven active lesions.
How I was feeling in those first few months? I was terrified! I didn't understand why my disease was so different from others in my family. My mom had Progressive MS and it slowly progressed over 30 years before she needed a wheelchair. My sister had Remitting Relapsing MS and had been doing well. Whereas I felt like I was racing to stay ahead of the freight train bearing down on me. Within two months, I had to move out of my basement suite as I was no longer able to climb the stairs. Within six months, I had lost my balance.
In my first four years living with MS, I failed three different disease modifying treatments including Cyclophosphamide, a form of Chemotherapy. In the fourth year I had paralysis from my waist down for six months. The doctors tried a Plasma Exchange during my time in Foothills Hospital. It also did nothing. The Chemotherapy did get me walking again, I was promised a year. I was told that when it stopped working there was nothing left they could do for me. The drug started to wear off within eight months. At this point my diagnosis changed to Marburg Variants, the only terminal form of MS. I went to bed on the 8th of April while still being able to pivot myself into bed from my wheelchair and awoke completely paralyzed from my breastbone down. I was raced into Foothills where within a week my paralysis ascended to my collarbone. I was on my deathbed due to my autonomic system starting to shut down and I was sent home and told that there were no more options for me.
However, then a series of fateful situations began to fall into place for me. Within a month I was accepted at Ottawa Hospital for an experimental treatment by Dr. Freedman and Dr. Atkins. The treatment was Autologous Stem Cell Replacement. This procedure saved my life, it halted my disease which nothing else anyone had done before could do.
To my knowledge, over $6 million went into the trial that turned out to have saved my life. (This trial was funded in full by the MS Society and MS Scientific Research Foundation). I wasn’t a part of the trial but I was the 4th person in Canada that had the transplant outside of the trial. Dr. Freedman told me on our first visit with him that “I was lucky to be the sickest of the sick.” For any other person this statement may not bring joy but for this gal, who mere weeks ago had been given a zero chance of survival, I was overjoyed.
I owe my life to the Doctors, the people who participated in trials before me, but most of all to the MS Society for raising all the funds that went into the research. Fundraising has saved me and now many like me. If not for the staff at the MS Society and meeting Dr. Freedman, I would not be here.
I have since my transplant been a quadriplegic twice; once in 2014 and again in September of 2016. These little blimps are due to the massive damage in my system that may or may not heal over time. The nervous system is extremely complex and there is still a lot of research to be done into how it all works. I have not been able to go back to work yet. I am however attempting to change into something my body is able to handle. I do walk unaided most of the time unless fighting an infection. I am able to drive, walk, talk, and shake hands. I have been given 5 years of life that I would not have had. I enjoy meeting all the people that I would not have met if I was not here. I’m excited to have found out that hair is nothing but an accessory and that I AM NOT MY BODY.
Our Impact What We Do
Through every area of our work – research to discover new treatments, advocacy to help people qualify for AISH or CPPD, support groups and social programs – we aim to help people live better with multiple sclerosis.
Multiple Sclerosis (MS) is a chronic and often disabling disease, with no cure at present. It has a profound impact on every area of a person’s life. It is unpredictable and presents in different forms. Many people can live normal lives for many years, others develop more progressive forms of the disease resulting in various degrees of paralysis. We often refer to MS as Canada’s disease because:
- Over 100,000 Canadians live with MS
- Canada has the highest rate of MS in the world and we don’t know why
Through generous contributions from donors, corporate sponsors, and fervent fundraisers, the Multiple Sclerosis Society of Canada has:
- Invested over $140 million dollars in research since its inception in 1948
- Canada continues to remain at the forefront of MS research around the world
- MS Society funded studies have gone the distance in areas such as imaging, diagnosis, genetics, tissue repair, rehabilitation, stem cell research and disease-modifying therapies that have significant positive results for people affected by MS.
- With each passing year research continues to reveal new knowledge around the cause of MS, as well as the mechanism by which MS impacts the central nervous system.
When the MS Society was founded, there were no treatments for those living with MS. Now, with the help of the MS Society, there are 11 different disease modifying treatments available through Alberta Health Care. However, because of the unpredictability of the disease, there is still work to be done.
For the latest in MS research go visit our website.
Our Programs How We Do It
The MS Society has various programs to help those affected by the disease. We support those living with MS and their families through:
- Self-help groups - peer or volunteer led program offered throughout our boundaries in order to reduce barriers and improve social isolation. Groups meet in the community.
- Peer match program through our National office - This program matches peers, and uses the conveniences of telephone or internet thereby allowing individuals access to support and information as needed.
- Friendly Visiting Volunteer Program - This program matches individuals, under 65, living in long-term care with a volunteer in order to reduce social isolation and increase.
- MS Knowledge Network - Nation wide bilingual service that connect individuals with information and support, either by phone, email or on-line. Navigators will have extended hours of service and be link to the most up-to-date information.
- Public awareness/ community presentations/booths - Through our awareness we engage the public and educate individuals about the challenges of living with MS and disability issues in general. Through this awareness we reduce barriers and promote a more inclusive community.
- Provide education for individuals/families in order to empower them to make decisions for their on-going health care and wellness needs.
- Individual advocacy around issues of housing, employment, income replacement. We assist with applications and appeals and advocate for needed services to enhance the individual’s quality of life.
- Work in collaboration with other agencies and organizations to affect change and reduce stigma related to disability. By reducing barriers, we provide an opportunity for individuals to fully participate within our communities.
- Assists persons affected by MS to identify, navigate, and access services and supports, thereby enhancing the individual to access what they need.
- A fund of last resort providing individuals with necessary equipment.
Our Requests What You Can Do
Make a Donation–Donors to the Multiple Sclerosis Society of Canada are making a difference. Your donations mean we can fund MS research that is helping doctors diagnose MS, discover better treatments and find a cure for this disabling disease.
There are many ways individuals can help support the MS Society of Canada. By participating and fundraising in one of our events, volunteering, organizing a fundraiser, or donating directly to the MS Society.
Johnson MS Bike–Airdrie to Olds: www.msbike.ca
Embark on an extraordinary journey with over 800 cyclists through scenic rural Alberta. On this two-day, 180km road ride you will enjoy rest stops along the way stocked with food, beverages and smiling faces. Weekend celebrations include Beer Gardens, live entertainment and more! Bring friends, family and supporters alike to cheer you on. The tour is equipped with transportation, mechanical and first aid support. We invite everyone age 10 and up of all abilities to challenge themselves by registering today. Enjoy a weekend of excitement, fun and profound accomplishment as you join the fight to end MS.
Jayman BUILT MS Walk–Calgary: www.mswalks.ca
Canada has the highest rate of MS in the world. When you join the Jayman BUILT MS Walk, you join our country’s collective effort to help improve the lives of Canadians affected by MS. The dollars you raise are invested in world-leading MS research happening right here in Canada. It’s an exciting time for MS research, and your fundraising will help improve the quality of life of Canadians affected by MS today, and those who may receive a diagnosis tomorrow.
Be part of a movement to end MS by participating in the MS Hike. This guided hike is a perfect way to spend a Saturday, in the beautiful rockies while helping those living with MS. Registration for this event opens in March 2017.
Volunteer–The Multiple Sclerosis Society of Canada is an organization founded by volunteers and continually fueled by the initiative and dedication of thousands of volunteers across the country.
Click here to read the stories of our expeptional volunteers and their impact in furthering our mission to be leaders in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life. If you are interested in volunteering for the Calgary chapter, don’t hesitate and call us today.