Becky cook
Forum Replies Created
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before I found out about the FA, I had surgery for my scoliosis (Afterwards had to wear a neofract jacket (Made from plaster of Paris) for about six months afterwards ,) when I was 13 I am now 45 when I was about 17 (I was quite vain) I had six ribs removed so my back looked straight, it was amazing and although I do not get pain often I find sleeping without a pillow kind of resets it. over the last five or so years has started curving below and above the rod so I kind of look a little crooked I read that the Rod has a shelf life of 36 years It’s still not painful so I’m hoping mine is the exception to the rule, although if I sit on a hard chair I can feel it sometimes(It’s very weird)
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My speech is definitely a lot more slurred when I am tired so if you’re working in hospitality maybe a bar for example and anything after say 9 pm might be difficult. When I was working in a call Centre I was referred to a speech therapist who said keep things brief don’t say 25 words wen 10 will do and sometimes you don’t need to say very much, it’s difficult well first but after a while believe me it gets easier, there were certain words such as my mum I couldn’t say so instead of my mum I would say mother . Xx
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I have found that mine is at its worst 2 weeks into my cycle it affects both feet I know I’m in for an interesting night when they are warm worse still when they feel normal, they are always cold paracetamol helps
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I think this will be amazing when it comes out but after having FA diagnosed in 2001 ( now I am 44 and in a wheelchair full time, only balance and coordination affected touchwood) and always looking on the bright side, we have been told for many years next year next year next year and now because of the pandemic , to be honest I am getting a little disheartened as the goal post always seems to be moving there is only so much time but you can be optimistic for! Surely I cannot be the only one that is wondering how much longer the carrot will be dangled.
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Yes unfortunately I understand exactly what you mean, for some reason ataxia doesn’t like anything special you do look special it doesn’t like nails being done at all so about eight years ago I had to stop my nails looking fantastic and I just keep at natural because it hurts so much when you catch them and it gets worse when you are fully in a wheelchair don’t even get me started on wearing a watch!! Ataxia hates them a the amount of faces I’ve smashed is a joke. Hate the way it’s dictating everything can and can’t do so annoying that others don’t understand.
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I tell them what kind of like m.s and most of them get it.
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omg this was amazing its the most positive thing i have ever seen about FA. I am 100% going to sign .its so nice to think others may not have years of FA robbing them daily .
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Hi ,i did try to attend but when i clicked the link it was blank, how did it go
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diagnosed at 22 had 2 kids in 2008 and 2012 only started using chair after little girl was out of her buggy as i found pushing it good for me, in the end it was easier and safer for everyone with me in the chair,i still refuse to use it in the house , i found if i went shopping i could get more done and go to look at far more, however most heart breaking thing ever is having to make the decision and getting your head around it and deal with the “petty looks”.good luck
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I have phillips sonicare they are brilliant as I don’t have to move much and my teeth are beautifully clean and feel clean. I am obsessed with my teeth I always have been because it is the only thing I am currently in Control of since I was about 14 I cleaned them for six minute but I was told not to by my Dentist and only do 2!!! But touchwood I have no fillings yet (Now 42)
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i find two things help 1 ) drink loads of water ideally 1 litre a day 2) don’t touch caffeine switch to decaf, i was puscribed tablets from doctor but decided not to take them as once you start you had to gradually stop and i wasn’t happy with the thought of it after reading the advice that came in the Box as its not constant. I find i feel worse about 2 weeks into my menstural cycle ,i know when im in for a bad night when feet are boiling hot to touch or even worse “normal” freezing cold to me is perfect .as i get older its worse now 43 .xxx