Who I Am?
Clumsy. Very clumsy. Cerebellar ataxia (SCA 1) will always be with me.
My disease is inherited in an autosomal dominant manner. So when a person with SCA has children, each child has a 50% chance of inheriting the mutated gene. The first confirmed case was my mother, who died in 2020 at the age of 50. I was diagnosed in 2013, and from then on I waited for it to start. It started very gently at the end of 2019. I recognized it from balance problems when walking. I have about 20 years of struggle ahead of me – with no cure.
There is no such thing as a carefree life for anyone. None of us are unique enough to have problems that only affect us, and yet we can get lost in them, convinced that they important enough to let them affect our lives. It’s good while it’s good… and it’s scary to think of the moment when it won’t be good anymore. It’s time to learn to live with a strong wound in our hearts, because some things never heal.
My “self-therapy” does not involve treating myself on my own and without the help of a specialist or according to his instructions, but is a supplement to professional help and preventive health care. I do not replace traditional methods of treatment with medical diagnosis. However, the whole thing is very individual, because although the disease is the same for many, their pace, my body and how I deal with it are different.
As a disabled person, I must strive to find the best means to support my efforts. I want to describe everything: what my current difficulties are; how others react to me and my body and mind; how I am affected by long-term professional help from various doctors…
…and then face it!
Because real life begins after you leave the doctor’s office.