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Living With Ataxia: How Having a Positive Mindset Saved Me

I am a mother, a nutrition guru,a fitness enthusiast, a cat lover, an aspiring novelist and a poorly coordinated neurological mystery.

With ataxia, even a simple movement like walking is extremely difficult.

With ataxia, even a simple movement like walking is extremely difficult.

What Ataxia Feels Like

My symptoms began 16 years ago when I woke up one morning, got out of bed, and discovered that I couldn’t walk properly. I couldn’t figure out what was wrong, but suddenly, putting one foot in front of the other seemed like the most insurmountable task.

After several tests, including a brain MRI, the doctors informed me that I had cerebellar lesions. The cerebellum is the part of the brain that controls movement, coordination, and processes sensory input. This explains why I was losing these senses. I was told there was nothing that could be done—no medication or physiotherapy would help, and I would eventually end up in a wheelchair.

I had severe ataxia, vertigo, and loss of feeling in my hands and feet. I couldn’t walk unassisted. I was very weak, constantly tripping and falling, constantly dropping things. I couldn’t write, hold cutlery, tie my shoes, fasten buttons—I even lost my hearing completely in one ear. For about a year after my diagnosis, I rarely left the house. I went through depression, anger, anxiety, and feelings of hopelessness and doom.

At the time of my diagnosis, I had three small children to look after. So as depressed and dysfunctional as I was, I still had to get out of bed every morning to take care of them. Although it was a struggle, it turned out to be a blessing in disguise; they are a big part of my motivation to keep fighting. After being depressed for quite some time, I finally decided that I would do whatever I could to take care of my children and be strong for them.

Once my mindset changed, everything else changed as well. To be fair, this did not happen overnight; it was a process, and I took it one day at a time. I am, by nature, a very stubborn person, so I channeled my stubbornness into determination. Determination to prove my doctors wrong. Determination to not to be a victim of this strange disease. I had no idea if I would ever be able to do "normal" things again, but I tried.

Adopting a Positive Mindset

This is where my healing began. Without the right mindset I never would have been able to achieve any of the things that I did.

“Stop focusing on what you can’t do and focus on what you can do.”

Those were the words that I said to my daughter who was three at the time when she was complaining that she couldn’t do all the things her older sister was able to do. As I was saying the words to her, I had a light-bulb moment A voice told me to take my own advice. That was the beginning of my turning point. I had spent a long time wallowing in depression over all the things I had lost and never once focused on all the things I still had and could still do.

Instead of thinking of myself as a victim I began to think of myself as a fighter, a survivor, a conqueror,

My second light-bulb moment came when I was helping my 5 year old practice writing. At that time, I could no longer write or even hold a pencil in my hand properly, but….at one point I took the pencil from my daughter and began tracing the dotted letters in her homework book attempting to show her how to properly form a letter and to my shock I had formed a perfect letter. I realized that I had been so focused on teaching her that I kind of forgot that I could no longer write, and some part of my brain kicked in and did it from memory. That day I realized that there was hope, that maybe if I just practiced a lot maybe I could retrain my brain. I had read articles about brain plasticity and how the brain has the ability to form new connections when one part gets damaged, so I attempted to retrain my brain.

"Big Red": This is the tricycle I ride around my neighborhood to help me build my leg strength and improve my coordination.

"Big Red": This is the tricycle I ride around my neighborhood to help me build my leg strength and improve my coordination.

Staying Physically Active

Although my doctors told me that physiotherapy would not help, I decided to challenge my body anyway. I began doing balance exercises, like standing on one leg while holding onto a chair. I also used balance board and practiced yoga.

I also practiced walking around the house without holding onto anything, walking on the treadmill, and walking on the uneven sand at the park with my kids.

Eventually I moved on to building muscle strength in my core and legs to help me keep my balance and improve my ability to walk. I am lucky enough to be married to a personal trainer who is very supportive and helps me train to maintain maximum strength.

I also ride around the neighborhood on a red 3-wheeler that I call “Big Red."

I was (and still am) amazed by the significant changes in my balance, coordination, and strength as a result of doing simple exercises every day.

Eating a Healthy, Nutritious Diet

I spent many hours pouring over nutritional information on the internet trying to uncover anything that would help “cure” my condition. I grew up with the understanding that foods and herbs contain healing nutrients provided by Mother Earth. My grandmother always knew what herb to boil or what tincture to make to remedy almost any ailment.

I wanted to learn everything I could about nutrition, which led me to study nutrition and ultimately become a certified holistic nutritionist. I learned how to eat in order to build muscle, nourish my nervous system and all the cells in my body, and achieve optimum health. I eliminated sugar, caffeine, and processed foods and focused on eating only natural whole foods.

When we are no longer able to change a situation, we are challenged to change ourselves.

— Viktor Frankl

Though I Am Not Cured, I Am Doing Much Better

Fast forward to today: Through sheer determination and perseverance, I have retrained myself to write and hold cutlery—to fasten my buttons and tie my shoes—despite the fact that I still do not have feeling in my hands and no proprioception.

I exercise regularly and have improved balance and coordination tremendously. I can walk short distances without assistance. I still fall sometimes, but always get back up with a positive mindset, and to this day, I am still not in a wheelchair.

I have discovered that the body is an amazing thing but that the mind is even more amazing! I will never stop trying to push myself, and I urge anyone who is going through any difficult situation to never give up and never stop trying to be the best you that you can be!

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Comments

Imogene Tyrrell (author) from Montreal, Quebec on February 13, 2020:

Thank you for reading JC.

JC Scull from Gainesville, Florida on February 13, 2020:

Very good article Imogene.

Miebakagh Fiberesima from Port Harcourt, Rivers State, NIGERIA. on April 06, 2019:

Hello, Imogene, you are welcomed. Thank you.

Imogene Tyrrell (author) from Montreal, Quebec on April 06, 2019:

Thank you very much Miebakagh, I really appreciate your thoughts, I sincerely hope to motivate others who are in need of motivation as I once was. I wish you a wonderful day too!

Miebakagh Fiberesima from Port Harcourt, Rivers State, NIGERIA. on April 06, 2019:

Hello, Imogene, this is the best personal motivational story I have come across online. Thank goodness, you do practice what you preach. This is a bonus. I like the way you go the extra mile by doing exercises and eating a healthy nutritional diet. Thanks for sharing, and enjoy the day.

Imogene Tyrrell (author) from Montreal, Quebec on April 06, 2019:

Thank you for reading RT - I appreciate the kind words, I wish you a wonderful day!

RTalloni on April 06, 2019:

How wonderful that you've pushed through instead of giving in/up! We live in a fallen world where disease happens, but God created these bodies (and minds) with amazing ability to heal. Thank you for sharing your story of continuing to learn and grow with the goal of improving/healing. Thank you for reminding everyone "...never give up and never stop trying to be the best you that you can be!"