You can always surprise yourself 🙂

:slightly_smiling_face: It’s been almost 10yrs since I last did it … yesterday I surprised myself (and family) by walking on a beach to the water’s edge… It was scary but it felt wonderful :heart:


Must have been so wonderful. Since I cant walk any more even that part to me sounds life changing. CONGRATULATIONS BERYL


:slightly_smiling_face: There’s so much I find restrictive because my eyesight tends to be ‘unreliable’ due to brightness…But the tide had recently gone out and I was able to access hard-packed sand. While I was standing there looking around it occurred to me how much easier it would be if a path of some sort was available to use over the soft sand…I can recall how awkward it was manhandling a child’s buggy on a beach, never mind a wheelchair.

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I had “photophobia” after the cataract surgery and vaccines. I don’t know what caused it.

:hushed: It’s possible I have similar, bright light definitely affects vision. I’ve had vaccines, but this was happening prior…I find even watching TV can make me screw my eyes to block out brightness…

you do so much for Ataxians, you are a role model for us all. You have got the guts. Build on your success. We are all behind you. Peter Ashbourne


Well done Beryl Several big steps for you and encouragement for many people with Ataxia. I have had
Spinocerebellar Ataxia for 11years and we just have to be positive every day. You are amazing. and an inspiration to us all.

Welcome Barry :slightly_smiling_face: You’re very kind. We all all struggle in our own way, surprises can be few and far between, but you just never know :slightly_smiling_face:

:slightly_smiling_face:How are things with you…

HI Beryl,
AS you know I live in New Zealand and we are covid free currently With the only cases going into managed Isolation the moment they land in NEw Zealand.As mentioned with the combination of going to the gym for about 1 hour 2/3/times per week,
some walking,light Yoga in a class once a week, almost no alcohol eating well;and trying to be positive all the time helps my Ataxia as currently as you know there is no effective medication.I see my neurologist annually .My balance is lousy but with the aid of a travel scooter we holiday regularly .I try not to rely on the travel scooter to much and try not to use my walking stick to often but am very careful of slopes and steps.I am doing ok but have noticed some deterioration in the last year.Self help is alll we can do .Take care and keep up all you do for us fellow Ataxia people.:grinning_face_with_smiling_eyes:


Welcome from me Barry. Its good to share z