A Diary

[Ostap]

Did anyone keep a diary marking the progress of their condition? I didn’t, but I wish I had because it’s been an interesting as well as an appalling experience, one that I didn’t expect and wasn’t prepared for. I have been diagnosed with Cerebellar Ataxia.

[edfosho]

I started, but it didn't last, too many good and bad days. Also for me, (fortunately) it's a slow progression. I decided not to fixate on journaling progress and to instead get on with stuff.

[Guardsman68]

I agree with edfosho so many good and bad days and you will only focus on the bad and negative bits yesterday has gone tomorrow isn’t a guarantee so try to focus on today and try and smile your way through it even though it is tough.

NO SURRENDER

[Buffergirl]

I generally keep a diary but usually about everything else going on around me. As there is no respite from my condition or evidence of improvement, even just for a day, I'm afraid my only written observation is calculating time between falls and trying to exceed the last interval. After the longest period of just over 11 weeks (taking extreme caution and being practically house bound), I was blown over yesterday by a gust of wind whilst walking with sticks in my drive. A greater indignity was the huge difficulty in getting up again!

[Ostap in reply to Buffergirl]

Thank you for the reply. Falling is scary and confidence crushing. I’ve tried to understand why I fall as an aid to avoid it happening. Obviously if you do nothing it helps, but at a terrible cost in other ways. Turning and making sudden movements I’ve found to be perilous. Getting up is always a struggle! Good luck!

[PatsyIpswich]

I started keeping journal of medical consultations but 20 years on, I've lapsed.

[wobblybee]

🙂 Although I’ve never kept a ‘diary’..I used to be able to have very good recall.

[Ostap in reply to wobblybee]

I wouldn’t say that keeping a diary is necessarily a good thing, it may even be a bad thing if it draws your attention painfully to what you have lost. I was just curious. In my case photos sort of work as a diary in retrospect, and they are frequently bittersweet. Thank you for the reply.

[february]

I have cerebellar ataxia due to Niemann Pick C disease. I’ve had ataxia 20+ years and found out in 2017 it was due to NPC disease. I’ve never kept a diary because my ataxia keeps getting worse. I say ataxia is the gift that keeps on giving! I prefer to remember the time when I could do everything!

[coat2003]

EXCELLENT IDEA. I am positive. my bro less affected, i use a walker he a crutch, but rather negative as a person.that gets yo NOWHERE FAST.IT IS WHAT IT IS, ENOUGH OF SELF PITY.WE NEED TO GET OVER IT AND ACCEPT HOW IT IS....IT IS A PROGRESSIVE AND DEPENDS ON ATTITUDE TO LIFE.