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Ataxia UK
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moving 'forward'?

At last got an appointment set to see a neurologist at Cambridge Addenbrookes hospital but not until February. I'll have a long list of questions by then. Hope I can still walk about a little by that time. Can never stand up without swaying or losing balance when I get out of the ambulance after sitting for some minutes. You'd think it would rest your legs but it's not so. Next month (if they don't change it again) is the adult squint appointment. Hope it's a positive decision to go ahead. Eye pressure has gone down from 30 to 14 with these new drops. That's a month's treatment.

Jean

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Dear Jean,

My appointment with a neuro ophthalmologist is at the end of January 2018.. Big disappointment for me. xxN

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Hi Neta,

Yes it is disappointing isn't it. I've got another appointment that's also too far away - date wise.

Last time I went to see ophthalmologist, the ambulance driver was 35 minutes late picking me up. I did ask why and he said he was 'busy'. This was booked a week or so previous and he only had one other person in the vehicle from the same town. We drove so fast, I felt a little sickish and he never slowed down for the bumps in the road. I hope I don't get him again next month.

Jean x

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you would think with all this unemployment there would be many drivers to choose from. Can u complain to someone? N

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Yes I'll say something to the coordinator when I book another. The East Herts company is changing to East of England Ambulance. Lots of the drivers are getting laid off. But some drivers tell us to choose the service rather than Community car service which only changes half fare (45p per mile). Even so it leaves a 'bad feeling' wondering if you're gonna get to your apt in time. Is the driver going to be pleasant....

Jean

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Hi Jean so pleased you now have a Neurologists appointment although a way off you can at least be well prepared. I found it helpful to write it all down when we went with my husband. All the best

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