Ataxia; my story and the Mindset, Exercise and Diet that saved me
“When we are no longer able to change a situation, we are challenged to change ourselves.” ~Viktor Frankl
For anyone who is not familiar with Ataxia, it is a neurological disorder that primarily affects balance, coordination, walking, and fine motor skills.
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 and finally a brain MRI, I was informed that I had cerebellar lesions. The cerebellum controls movement, coordination and sensory input which explained why I was losing these senses. I was told there was nothing that could be done, no medication or physio would help, and I would eventually end up in a wheelchair. I had severe ataxia, vertigo, loss of feeling in my hands and feet, couldn’t walk unassisted, very weak, constantly tripping and falling, constantly dropping things, couldn’t write, hold cutlery, tie my shoes, do buttons, etc.. and I 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 basic feelings of hopelessness and doom.
I had 3 small children at the time of my diagnosis and as depressed and dysfunctional as I was, I still had to get out of bed every morning to take care of them, which turned out to be a blessing in disguise because they became a big part of my motivation to fight. After being depressed for quite some time I decided that I would do whatever I could to take care of my children and be strong for them. Once my mindset switched (which didn’t happen over night – it was a one day at a time process) everything changed. I am by nature a very stubborn person, and I became determined to prove the doctors wrong and 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.
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.
Although 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 a chair and using a balance board and doing yoga. I practiced walking, walking around the house without holding onto anything, walking on the treadmill and walking on the uneven sand at the park with my kids. Then I worked on building leg muscle and core muscle so as to help me walk better and help me keep my balance. 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 exercise.
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 food and herbs contain healing nutrients provided by mother earth. My grandmother always knew what herb to boil or what tincture to make to heal almost any problem. I wanted to learn everything I could about nutrition which lead me to study nutrition seriously and ultimately become a certified holistic nutritionist. I learned how to eat in order to achieve optimal health, build muscle, nourish my nervous system and nourish all the cells in my body. I eliminated sugar, caffeine and processed food and focused on eating only whole natural foods.
Fast forward to today. Through sheer determination, practice and repetition, I have retrained myself to write and hold cutlery, do buttons, tie my shoes, etc… even though I still have no feeling in my hands and no proprioception. I exercise regularly, have improved balance and coordination and can walk short distances without assistance. I still fall sometimes, but always get back up with a positive mindset, and I am still not in a wheel chair.
I have discovered that the body is an amazing thing, but to me the mind is even more amazing! I will never stop trying to push myself and I urge anyone who is gong through a difficult situation to never give up and never stop trying to be the best you that you can be!