about mary
Hey everyone, welcome to my new site! I suppose I should tell you all just a little bit about who I am. Well, to start at the beginning, I was raised in Northfield, Vermont, where a lot of my family still lives. I went to a small high school, Northfield High School, and then went to Colby-Sawyer College. After two years there, I transferred to the University of Vermont for a bigger more diverse atmosphere. In 2002 I started to think that I might be a candidate for scoliosis surgery (diagnosed in 8th grade) based on some of the symptoms that I was having: Increasing back pain, lack of coordination, off-balanced gait, stumbles and falls. After an appointment with my doctor, I was referred to a neurologist for further assessment.
After several appointments I was first informed that I may have a brain tumor. What an awful feeling. I was so scared. That turned out to be incorrect (what a sigh of relief). Then it was thought I may have Charcot-Marie-Tooth, or maybe Parkinson’s Disease. After many diagnostic tests and switching to a new neurologist, I was finally diagnosed with Friedreich’s Ataxia, a rare form of Muscular Dystrophy. I finally had a reason for what was happening to me. I knew what was going on. Once that thought set in, then I began to think about what that meant. I had a disease, one that I had never heard of. So, the research began. It was almost kind of nice to read all of these stories and research articles. I felt for the first time in a long time that I wasn’t alone. I started to feel like I wasn’t the only one with this disease, and that felt kind of nice.
I encourage you to check out some of the links I have provided to learn more about the disease Friedreich’s Ataxia. There is an immense amount of information out there on the web, and I am sure there are many other helpful sites. One of my favorites is a site about Gabe Ford. Some of you may remember her story on Animal Planet a few years ago about her and her dog Izzy. Gabe also has Friedreich’s Ataxia, and was the first person I met that was just like me. Occasionally I find myself going to her site just for comfort. Even though I have so many supportive friends and family surrounding me, once in a while it’s nice to talk with someone who has been in your shoes.
When I was diagnosed in 2002, it was in my sophomore year of nursing school at the University of Vermont. I was told by some professionals that I would never make it. Some said I would not graduate from school, and I wouldn’t be able to have a career as a nurse. I could not believe what I was hearing; I had wanted to be a nurse for as long as I could remember, I wanted to be there for people and help others. So, I got determined. I was not going to let these people get me down, I was going to prove them wrong, and make my dreams of graduating from college and becoming a nurse come true.
A year after my diagnosis, I met my husband. He is such an amazing man. He knew from the beginning about my diagnosis, and rather than scaring him off, he was right there by my side. We had a long distance relationship (I was in Vermont, he in Arizona) for about a year, then I graduated in 2004 with a Bachelors in Nursing. He moved to Vermont that summer to care for me after I had spinal fusion surgery for my scoliosis. He surprised me with a marriage proposal the night before the operation, and of course I said “yes”. When my last x-ray was cleared from my Orthopedic Surgeon, we moved out to Arizona so that I could be a nurse in the warm weather (thinking it would be easier on my health).
We lived in Arizona for 2 years, where I got to be a floor nurse on a Telemetry/step-down ICU floor, and a Geriatric/Psychology floor. Once floor nursing became too hard for me I started to work at a Neurology office. In 2004 I was using a walker part-time, and by 2005 I was using a walker full-time and a wheelchair part-time. In 2006 I began to realize that although the weather was nice, it was hard for my husband to live with my disease alone and that we missed the support from my friends and family. So, I realized that a move home to Vermont was something I needed. Back in Vermont, I got a job at the Visiting Nurse Association of Chittenden and Grand Isle Counties, as an Intake and Referral Nurse. This was great for me. Doing administrative work allowed me to be able to work from my wheelchair and use the skills and knowledge I had obtained from nursing school.
But as time went by, and doctors appointments, therapy, and my physical needs increased, working became even more difficult. There were more MRI’s, CT scans, EMG’s, Echocardiograms, Sleep Studies, Swallow Studies, Neurology and Orthopedic appointments, and so on. Using a manual wheelchair became harder for me because of the lack of strength in my arms. So, I had to get a power wheelchair. Then other medical equipment was being suggested: A bed rail, an up-grade from my shower bench, commode, a grabber, a ramp for my power chair into a vehicle, a van with electronic hand controls so that I can drive, a computer with a modified keyboard, and much more.
As of April, I have been out of work for medical reasons and have dearly missed using my nursing knowledge, and doing what I went to school for. I have recently started to receive a form of Social Security Disability, which is helping with some of the costs of living, but not all. The medical debt that I have incurred is huge; it’s daunting at times.
With all this in mind, I am also so thankful and hopeful. I am blessed with the best group of friends and family that anyone could ask for. I feel like I am surrounded with unconditional support and love. I am determined to pay off my medical debt, and to make my life and all its possibilities more accessible to me. I feel that it’s time to be more active and vocal about what this Foundation stands for. I want there to be more awareness of this disease, and more support available to those that are affected by it - whether they are diagnosed, or are a family member or loved one of someone who is.
The treatment I have found is to have lots of faith and optimism. Always remember to live your life to the fullest today, as tomorrow is not a promise. Thank you so much for all of your time, interest and support. I hope this can be shared with others who may be in a similar situation as I am.
