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Ataxic gait
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Fatigue
I have SCA (unknown variant - awaiting blood test results!) and one of the things I'm really struggling with is fatigue. I'm still working full time and I have a fairly sedentary desk job but I've noticed of late that as the week wears on, my level of fatigue on a daily basis greatly increases! It's
I have SCA (unknown variant - awaiting blood test results!) and one of the things I'm really struggling with is fatigue. I'm still working full time and I have a fairly sedentary desk job but I've noticed of late that as the week wears on, my level of fatigue on a daily basis greatly increases! It's
Jay1972
in
Ataxia UK
10 years ago
Undiagnosed!
Hi All, I am in my early 40's and for most of my life, I have been known as 'clumsy' or 'accident prone'. I had a fall in May of this year (the result of nothing more than losing my balance) and thanks to an observant A&E doctor who felt this needed looking at further, referred me to the neurologist
Hi All, I am in my early 40's and for most of my life, I have been known as 'clumsy' or 'accident prone'. I had a fall in May of this year (the result of nothing more than losing my balance) and thanks to an observant A&E doctor who felt this needed looking at further, referred me to the neurologist
Jay1972
in
Ataxia UK
10 years ago
Breakthrough??
I'm new to posting as like many I have been content to read the posts on this site yet have chosen not to air any views. Like all people with Ataxia I await a "magic pill" or at least a significant and publicised step forward in the search for a successful treatment for Ataxia. I was greatly encouraged
I'm new to posting as like many I have been content to read the posts on this site yet have chosen not to air any views. Like all people with Ataxia I await a "magic pill" or at least a significant and publicised step forward in the search for a successful treatment for Ataxia. I was greatly encouraged
philyerboots
in
Ataxia UK
10 years ago
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Ataxia
Does anyone have info about dr. Tom Clouse and his walking with ataxia program? He does tours in the US and maybe Europe? I think someone posted about dancing??? Can't remember who???
Does anyone have info about dr. Tom Clouse and his walking with ataxia program? He does tours in the US and maybe Europe? I think someone posted about dancing??? Can't remember who???
retiree
in
Ataxia UK
10 years ago
Please sponsor me. I'm doing a tandem freefall for Ataxia UK
I have FA, I was diagnosed with in 1992! I have set myself a target of £1000, but have some way to go before the jump in June. Please support me by donating at: http://www.justgiving.com/Richard-Brown2014 Please share this link with friends and family! Please join me on Facebook https://www.facebook.com
I have FA, I was diagnosed with in 1992! I have set myself a target of £1000, but have some way to go before the jump in June. Please support me by donating at: http://www.justgiving.com/Richard-Brown2014 Please share this link with friends and family! Please join me on Facebook https://www.facebook.com
riccib
in
Ataxia UK
11 years ago
Anyone suffer with cold knees??
I have had ataxia for over 30 years & so have got used to managing all the problems it causes, however recently I have found that my knees are becoming very cold (actually feel freezing to touch) particularly at night & the only way to get warm is to sit next to the fire. Unfortunately when I think I
I have had ataxia for over 30 years & so have got used to managing all the problems it causes, however recently I have found that my knees are becoming very cold (actually feel freezing to touch) particularly at night & the only way to get warm is to sit next to the fire. Unfortunately when I think I
glosman
in
Ataxia UK
11 years ago
Frustrated with docs lack of urgency!!!
16 weeks to wait for physio,4-6 weeks to be seen by OT... Mental issues??? Hmmm ok mrs marshall I'll put your husband on a waiting list.... MRI.... We will be in touch!!! Wtf!! So angry if I make it my life's work I'm not gonna stop till people with ataxia are known! And everyone is aware of this condition
16 weeks to wait for physio,4-6 weeks to be seen by OT... Mental issues??? Hmmm ok mrs marshall I'll put your husband on a waiting list.... MRI.... We will be in touch!!! Wtf!! So angry if I make it my life's work I'm not gonna stop till people with ataxia are known! And everyone is aware of this condition
Jayswife-24
in
Ataxia UK
11 years ago
Can dizziness or lightheadidness be be caused by both the 'Cerebellum' and the 'ears' together? Are they both connected in some way?
Just been for a hearing test and told my left ear hearing is very good (deaf in right ear). I have problems with noises in left ear and low or high pitched sounds that instantly change like the flick of a switch. Occassionally I experience sharp needle like pains in both ears although never at the same
Just been for a hearing test and told my left ear hearing is very good (deaf in right ear). I have problems with noises in left ear and low or high pitched sounds that instantly change like the flick of a switch. Occassionally I experience sharp needle like pains in both ears although never at the same
Hidden
Volunteer
in
Ataxia UK
11 years ago
Update from Neurological Alliance. Report Launch-Navigating neurology services: helping strategic clinical networks to be a success story.
Helping neurology networks to be a success The Neurological Alliance has today launched a new report [http://bit.ly/16xvdyy] which sets out our recommended blueprint for the strategic clinical network (SCN) for neurological conditions. Following the announcement last year that neurology would be
Helping neurology networks to be a success The Neurological Alliance has today launched a new report [http://bit.ly/16xvdyy] which sets out our recommended blueprint for the strategic clinical network (SCN) for neurological conditions. Following the announcement last year that neurology would be
HarryB
Administrator
in
Ataxia UK
11 years ago
Another Lovely Day
Smashing day again, bit of a haze, but I`m not complaining. How are the rest of you "unique solders" feeling today? okay I hope. Hospital visit Monday at the Q.E Hospital `Falls Clinic`. Investigation (again) to find out why I keep getting blackouts - that will make a total of four hospitals
Smashing day again, bit of a haze, but I`m not complaining. How are the rest of you "unique solders" feeling today? okay I hope. Hospital visit Monday at the Q.E Hospital `Falls Clinic`. Investigation (again) to find out why I keep getting blackouts - that will make a total of four hospitals
Hidden
in
Ataxia UK
11 years ago
Has anybody been diagnosed with Dyschronometria
I was involved in discussion on another ataxia site about 'time passing quickly and not being aware of it, and memory, concentration, the worry of dementia'. Someone replied that there was a condition associated with ataxia known as Dyschronometria. I'd never heard of it before, the Neurologist
I was involved in discussion on another ataxia site about 'time passing quickly and not being aware of it, and memory, concentration, the worry of dementia'. Someone replied that there was a condition associated with ataxia known as Dyschronometria. I'd never heard of it before, the Neurologist
wobblybee
in
Ataxia UK
11 years ago
Advice wanted
I need a bit of advice about doctors. I have had Ataxia for a long time (i am in my 60s). I am still able to walk around quite well. Although i use a walking stick sometimes. I have a problem with my right knee which has been causing me increasing pain and affects my walking. I have had the knee
I need a bit of advice about doctors. I have had Ataxia for a long time (i am in my 60s). I am still able to walk around quite well. Although i use a walking stick sometimes. I have a problem with my right knee which has been causing me increasing pain and affects my walking. I have had the knee
albion
in
Ataxia UK
11 years ago
Brain Fog anyone?
I have symptoms not necessarily caused by Cerebeller Ataxia, and follow other Healthunlocked sites purely out of interest. Today I read about accounts of Brain Fog, many humorous, some scarily familiar! I used to worry dementia was setting in, now I realise I may just be sort of 'normal'? Brain
I have symptoms not necessarily caused by Cerebeller Ataxia, and follow other Healthunlocked sites purely out of interest. Today I read about accounts of Brain Fog, many humorous, some scarily familiar! I used to worry dementia was setting in, now I realise I may just be sort of 'normal'? Brain
wobblybee
in
Ataxia UK
12 years ago
What (if any) treatment are you getting for your Ataxia
I have late-onset cerebellar Ataxia. I'm 61 and was diagnosed 10 years ago. Now using a wheelchair. I take no medication but worried about my lack (inability) to do physical exercises. Not getting much help or advice from my G P - who I see about 3 times a years for blood pressure checks. Feel like
I have late-onset cerebellar Ataxia. I'm 61 and was diagnosed 10 years ago. Now using a wheelchair. I take no medication but worried about my lack (inability) to do physical exercises. Not getting much help or advice from my G P - who I see about 3 times a years for blood pressure checks. Feel like
SussexDodo
in
Ataxia UK
12 years ago
Hate this!Hard to make plans!! Neta
I was diagnosed with cerebeller ataxia induced by auto-immune issues something in 2010-- this afterignoring the swaying which first appeared in aound 2005-6. The auto-immune issues were suggested by an allergist in NYC, USA, to whom I told about my lengthy, frequent outbreaks of hives. In the summer
I was diagnosed with cerebeller ataxia induced by auto-immune issues something in 2010-- this afterignoring the swaying which first appeared in aound 2005-6. The auto-immune issues were suggested by an allergist in NYC, USA, to whom I told about my lengthy, frequent outbreaks of hives. In the summer
neta
in
Ataxia UK
12 years ago
Would you like to help ataxia research?
Dr Kai Uus’ audiology research team at Manchester University is investigating hearing, in particular the ability to perceive speech in the presence of background noise in people with Friedreich's ataxia. They need volunteers to participate in their research project. Participants will be asked to
Dr Kai Uus’ audiology research team at Manchester University is investigating hearing, in particular the ability to perceive speech in the presence of background noise in people with Friedreich's ataxia. They need volunteers to participate in their research project. Participants will be asked to
AlisonS
in
Ataxia UK
12 years ago
Vibram Fivefinger Shoes
In my series of top-tips (see below) I have a new one! Vibram Fivefingers shoes. They are like walking bare foot - so comfy. They make me a bit more stable too. You do look a bit of a prat! www.vibrams.co.uk I also have trainer socks from toetoe http://www.toesocks.co.uk/anklet-black-and-grey
In my series of top-tips (see below) I have a new one! Vibram Fivefingers shoes. They are like walking bare foot - so comfy. They make me a bit more stable too. You do look a bit of a prat! www.vibrams.co.uk I also have trainer socks from toetoe http://www.toesocks.co.uk/anklet-black-and-grey
Litty
in
Ataxia UK
12 years ago
Walking with Poles - my experiences of choosing and using walking poles. (Dicated using Dragon Dictate)
Edit - Pictures here:
http://i.imgur.com/kOnKT.jpg Having heard how Litty found using the poles and chatted with her about using them, I decided to see if I could find some that might be suitable for me. I went to 'Go Outdoors' as our neighbour had lent me his discount card and there
Edit - Pictures here:
http://i.imgur.com/kOnKT.jpg Having heard how Litty found using the poles and chatted with her about using them, I decided to see if I could find some that might be suitable for me. I went to 'Go Outdoors' as our neighbour had lent me his discount card and there
Hidden
in
Ataxia UK
12 years ago
Neurology Visit
Well i have just received an appointment to see my neurologist this coming Sunday at 9:30. I am hoping for results of any description to be back now. My genetic test has been in Italy for almost 12 months, St Mary's, Manchester sent it there, not sure why though. I have been diagnosed with ataxia
Well i have just received an appointment to see my neurologist this coming Sunday at 9:30. I am hoping for results of any description to be back now. My genetic test has been in Italy for almost 12 months, St Mary's, Manchester sent it there, not sure why though. I have been diagnosed with ataxia
nana23
in
Ataxia UK
12 years ago
What exercises and other benefits people find good for ataxia?
After reading Lits blog on 'find your passion' I have found that in the past I enjoyed and benefitted from going for a sauna and swim. Unfortunately though I can no longer do this for personal safety reasons. I would need someone to be with me in case I slip, stumble or fall. Its a pity my wifes
After reading Lits blog on 'find your passion' I have found that in the past I enjoyed and benefitted from going for a sauna and swim. Unfortunately though I can no longer do this for personal safety reasons. I would need someone to be with me in case I slip, stumble or fall. Its a pity my wifes
Hidden
Volunteer
in
Ataxia UK
13 years ago
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