Life with cerebellar Ataxia is not simple. Just as a roller coastar ride we never know what may happen to us. How can we predict the unpredictable!!!
But if we panic or think something untoward has happened and always be gloomy or brood over our life that is wrong. That’s not the right way to battle out Ataxia. Mom always says that we both brothers are not abnormal but actually we should feel we are above the normal world – far better than other guys and gals as God has bestowed us with super natural powers!
It’s a small side effect to be born with Ataxia. It is like we always preside over special a throne like a king (wheel chair) & we are proud to be on the “hot seat”! Why should we feel embarrassed as we have worked very extremely hard in our past life thus now enjoying a luxurious life. We are actually unpolished stones whom society has to help and bring out diamond like qualities which we have been given! Then see us how we change or lead a good life in a bit different way!
So please show us some occupational therapists who can extract the talents the suppressed or hidden talents in us.
Few common problems which an Ataxian faces are many – uncountable – walking, speech daily routine etc bathing, dressing up, injuries spice up our pain, mockery by society, no or less social friends, usually neglected or under estimated, schools & colleges refuse to accept us to give education which is most important. While talking due to our slurred speech people run way and avoid us or make faces and tease us which make us more sad. It indirectly effects whole system.
By grace if we study no later use of it in earning livelihood no one gives us chances, mainly lack of guidance because unless tested how can world know our worth??? So, few chances ought to be given to prove ourselves to you…
Only selected Ataxians are lucky to get help from organizations. I feel I want to grow up once again, rewind my life and start in new way. Whats the use of talent unutilised? Some platform is required.
I also cannot understand that why people don’t understand that marriage is not a solution to Ataxia. It increases our trouble.
Stop discussing in front of us about our dark, unknown future! If u cant help don’t make us feel sad by saying you are so so suffering due to etc etc problem’s…..
We too are humans and we have the right to fight n live life with pride. Come on its 21st century now! Please wake up fella! Raise your voice ask for help. If not fight for it!
Life is not to be wasted by sitting idle!
Come on dear Ataxians! We are not sufferers, we live with Ataxia with a smile… why create more mess by confusing or misguiding us giving vague stupid suggestions?
It hurts our heart badly. We know crawling is not good but when no choice is left what can we do?
I slipped in washroom commode plenty times…our whole body shakes….quivers if we take tensions or brood a lot. Also frequently its awkward to unable to control nature call 1&2 due to which clothes get spoilt. We further get more work to clean but we try to just enjoy our pain – think of them as .some comedy funny moments and just overcome the incidents. We think how we fell and next time ensure we don’t fall in the same way….improve or innovate new styles to fall down slowly….
Few Ataxians face slow detoriation failure of body organs limbs. Its all momentary or for short while. Once we regroup our will power aall izz well is what we sing!
Don’t worry in any mode of life just give your best fight and knock out every bad untoward desires. Its difficult but not impossible to cope or curb all bad feelings but it may aggravate to other disaster so be careful as God is there to protect us. Just a small step from our side too is mandatory.
When we accept ourselves we have no problem. Why doesn’t society feel so? Just give us a helping hand lo! may be we could utilize for creating or inventing or be witness to history of achievements!
Many times when we need some thing which parents don’t know like books or CD’s magazines, medicines as we are unable to step out whom can we share with when none understands our talk. May be speech therapy will improve it but how can we go without money and even if money is there we need some workers to start our group SAMAG Pune chapter.
We need solutions, not pity.