First I had meningitis which doctors believe may be connected. I was first diagnose with A/syndrome when my son was being tested and diagnosed. I then began having Epileptic Fits and then later was diagnosed with Cerebella Ataxia that they believe is Heredatory. It seems to big a coincidence that all my deseases of the brain are not connected in some way. I just have to get on with it!!! I found when I listened to a motivational speaker at my sons gold Duke of Edinborough award that things were put in perspective Fight Fight Fight and you will and will continue to achieve minor successes. Peter Ashbourne Derbyshire England.
Peter, my wishes are with you! I have recently been diagnosed, mild cerebellum ataxia. Am going to an expert tomorrow and will share what she says if it is valuable enough.
Its the first time I have made any comments although I read them as they come in my inbox. With my full house of problems and recently depression I do not want to moan or feel sorry for myself. Ataxia can be a lonely disease as there is nothing for other to see to see other than a person who appears drunk, people will be cautious of you and give you a wide birth.. Its a rare disease and not understood. List questions you want answered, Is there a need for a MRI scan Yes there is regularly to note the spread of the disease. How fast is it spreading what can You do to slow its progress? There is also a need for genetic blood testing and a muscle biopsy. I must have had an arm full of blood taken. Get some phisothopy and speech theropy if you need it. I wanted answers for which there are few. Doctors are trying there best and genetic medicine is improving. We are all waiting for the cure or at least a medicine to slow it down.I have recently decided to burn rubber and have all the holidays I have always wanted Canan Safari etc. Live life. Listen to the answers to your questions record them if you can. Keep strong I and a lot of others are always here to listen and help in any way they can. I mentioned motivational speakers look on the net for Reg Vardy polar explorer and listen to him. Stay strong regards Peter.
very inspiring advice Peter! Thanks so much.
just out of interest where are you. Peter
I never thought about the order of things in everyday life but this got me thinking about orderly things. I take my meds in a certain order. I have a walker and when I put it away I fold a certain way also.I also don't like to make changes, if something works I keep it up. I know my wife tells me I don't need a stool softener that I have been taking for 8 yrs, but it has been working. A lot of little things like this make me feel in charge I guess.