Maggie d’Entremont shares her story of having a rare disorder – even among Ataxians – called ARCA1.
I’ve been diagnosed with Ataxia for @ 2-1/2 years. I’m currently fighting against the effects of Ataxia.
As far back as I can remember, I had always been battling with clumsiness.
Although growing up in Toronto, Canada, I remember ice skating as a child. I was pretty athletic, all of my life, practicing ballet, gymnastics, the balance beam, and yoga. I used to love to run & jog.
I never really noticed any unusual symptoms until I was close to 40 years of age. I loved walking and hiking in the North Carolina mountains. But near the age of 40, I noticed that I was losing my balance quite frequently.
I received a diagnosis of Ataxia in December 2017, at the age of 57. Up until then, I kept seeking and wondering why I had such a decline in my ability to maintain the balance that I previously had.
It was around 2005 when I really began seeking answers.
I was first diagnosed with a form of Meniere’s disease, affecting the balance center, in my .inner ear. But even the Ear, Nose and Throat Specialist, suspected that there was more to it, that there were other reasons, as well.
It wasn’t until after a complete right knee replacement, in September 2017. that I had such terrible symptoms, that I sought more answers. Throughout the recuperation from my knee surgery, my husband was very supportive. He encouraged me to find a neurologist, and undergo genetic testing.
After extensive testing, I was given a diagnosis of Ataxia, in December 2017. More specifically, ARCA-1, also known as SCAR-8.
These medical terms were all very new to me.
I’ve been told by my doctor, that general anesthesia had magnified and accentuated all the symptoms of Ataxia. I had become extremely dizzy, with muscle tremors, and had very poor muscle control, in my right leg. Luckily, all of the tremors and lack of muscle control have subsided. I still have vertigo and dizziness, though.
I’ve learned to embrace each day, fully. Some days are easier to navigate through, than others. A bad allergy day makes dizziness and vertigo much more prominent.
Ataxia has changed my life. I can still walk, unaided, so I try to work out, and practice balancing exercises, almost every day.
This disease is too unpredictable in its severity, day-by-day, to commit to work.
I can no longer enjoy the activities that I used to love.
I have a bachelor’s degree in Food and Nutrition. Have worked as a Dietetic Technician, worked in Retail Sales, and worked as a Dementia Care Expert, Certified Nursing Assistant
I still enjoy playing the piano.
Now, I am part of a prayer ministry and I’m involved in other ministry work.
I’ve started an online Bible study class, which has really been satisfying to do.
I have a very supportive husband (Jim), and 3 grown children. I am told that none of my children, or grandchildren (3), will have to suffer from the effects of having Ataxia.
Jodie Kawa and I lead the Western North Carolina Ataxia Support Group, where we can all empathize with, and support one another, in this disease. We can understand each other, and what we are going through, on a daily basis. We offer each other friendship and some solutions to answer some of the many challenges that face us daily, because of our Ataxia.
There is always a hope of finding some type of cure for Ataxia.
That’s what keeps me going… and fighting against the effects of Ataxia for me, and others like me.
Focusing on what we can do, with God’s help, and less on the limitations of Ataxia.
My advice to others with Ataxia, is to look for the positive, in each day, and to keep moving forward in your life.
I believe that a strong faith is essential to keep you moving, in a forward direction, even when there are setbacks, such as a fall….
My dream is to see a greater awareness brought to Ataxia, similar to the awareness that Parkinson’s disease or Multiple Sclerosis, has.
Thanks Maggie d’Entremont for sharing your story and helping us to raise Ataxia awareness!
Please consider sharing your story – whether you have Ataxia, are a caregiver, friend or relative. You may fill out the form below to get started.