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Ataxic gait
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PIP assessment
Good afternoon Please bear with this as it’s quite long. My name is Beverley and I am 52 years of age. I live in Gravesend Kent with my husband and two sons. In 2013 I was diagnosed with a rare genetic illness called Spinal Cerebellar Ataxia 6 which is an inherited disease causing symptoms akin to
Good afternoon Please bear with this as it’s quite long. My name is Beverley and I am 52 years of age. I live in Gravesend Kent with my husband and two sons. In 2013 I was diagnosed with a rare genetic illness called Spinal Cerebellar Ataxia 6 which is an inherited disease causing symptoms akin to
bevvick1964
in
Ataxia UK
7 years ago
Difference between ataxia and ataxic gait?
Can anyone explain the difference between having ataxia and having an
ataxic
gait
? Thanks
Can anyone explain the difference between having ataxia and having an
ataxic
gait
? Thanks
rankin1st
in
Ataxia UK
7 years ago
Confused and very concerned
I was up until eight weeks ago a very healthy person although I have had ongoing lower back pain for many years. Then suddenly I noticed a stiffening in the way I walked and the inability to walk for very long. I looked up gate and I do seem to have these symptoms I also have strange tingling sensations
I was up until eight weeks ago a very healthy person although I have had ongoing lower back pain for many years. Then suddenly I noticed a stiffening in the way I walked and the inability to walk for very long. I looked up gate and I do seem to have these symptoms I also have strange tingling sensations
PatJean
in
Ataxia UK
7 years ago
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Research trial for SCA3 patients
Dear all, An ongoing research trial is urgently calling for patients with SCA3 to participate. This trial is being conducted across Europe and the UK to create a database of brain-imaging scans, standardised clinical assessments and blood samples from patients who have SCA3. This database will contribute
Dear all, An ongoing research trial is urgently calling for patients with SCA3 to participate. This trial is being conducted across Europe and the UK to create a database of brain-imaging scans, standardised clinical assessments and blood samples from patients who have SCA3. This database will contribute
SMarley
in
Ataxia UK
7 years ago
Drugs Vs Ataxia
Hello, I'm new here.... I have cerebellar ataxia Just wanted to ask people about drugs, is Cannabis and Ecstasy forbidden for me? If 'Gabapentin' and 'Lyrica' is allowed, why isn't allowed MDMA? Thanks in advance!
Hello, I'm new here.... I have cerebellar ataxia Just wanted to ask people about drugs, is Cannabis and Ecstasy forbidden for me? If 'Gabapentin' and 'Lyrica' is allowed, why isn't allowed MDMA? Thanks in advance!
Satkus
in
Ataxia UK
7 years ago
Wanna connect?
Hi I'm Sam, 39 from Bournemouth UK. I had a Brain Tumour removed at 4 with complications, hydrocephalus (I've got a VP shunt put in at 6, revised at 19 and 33). I was also diagnosed with Acquired Cerebellar Ataxia at 27, I'm registered Severely Sight Impaired, go Swimming, Wakeboarding, Canoeing so fairly
Hi I'm Sam, 39 from Bournemouth UK. I had a Brain Tumour removed at 4 with complications, hydrocephalus (I've got a VP shunt put in at 6, revised at 19 and 33). I was also diagnosed with Acquired Cerebellar Ataxia at 27, I'm registered Severely Sight Impaired, go Swimming, Wakeboarding, Canoeing so fairly
Hidden
in
Ataxia UK
7 years ago
Vitamin B
I am posting this information because as a patient with ataxia, I know how hopeless it feels at times and so even a glimmer of hope is better than none, BUT it is critical that people understand: SOME PEOPLE TRIED VITAMIN B WITHOUT A DOCTOR AND GOT VERY SICK. DO NOT TRY ANYTHING BASED ON COMMENTS ON
I am posting this information because as a patient with ataxia, I know how hopeless it feels at times and so even a glimmer of hope is better than none, BUT it is critical that people understand: SOME PEOPLE TRIED VITAMIN B WITHOUT A DOCTOR AND GOT VERY SICK. DO NOT TRY ANYTHING BASED ON COMMENTS ON
sunvox
in
Ataxia UK
7 years ago
Hi I had a RTA in 1980
Hi, when I was 16 I was riding my motorbike as I usually did going as fast as possible. On this occasion I rounded a corner of a single track road, to find my father on his motorbike coming the other way. Somehow we had a head on collision, with my front wheel connecting with his engine. My brake peddle
Hi, when I was 16 I was riding my motorbike as I usually did going as fast as possible. On this occasion I rounded a corner of a single track road, to find my father on his motorbike coming the other way. Somehow we had a head on collision, with my front wheel connecting with his engine. My brake peddle
Hidden
in
Ataxia UK
7 years ago
Child with cerebellar atrophy ataxia 💔
does anyone have experience of cerebellar atrophy? What is the cause/underlying Diagnosis? My son is 4.5. The last 3 years his been having tests, for ataxia, nystagmus amongst other things. His very wobbly and falls. We have just found out his brain scan shows cerebellar atrophy and my heart is broken
does anyone have experience of cerebellar atrophy? What is the cause/underlying Diagnosis? My son is 4.5. The last 3 years his been having tests, for ataxia, nystagmus amongst other things. His very wobbly and falls. We have just found out his brain scan shows cerebellar atrophy and my heart is broken
Mango1983
in
Ataxia UK
7 years ago
Newly diagnosed
Hello I am writing in on behalf of my brother. After many tests he's been given a diagnosis of Cerebral Ataxia. He can't work but has apply for ESA who deemed him fit for work which I find difficult to understand. He is going for another Health assessment next week. Can anyone offer any advice or who
Hello I am writing in on behalf of my brother. After many tests he's been given a diagnosis of Cerebral Ataxia. He can't work but has apply for ESA who deemed him fit for work which I find difficult to understand. He is going for another Health assessment next week. Can anyone offer any advice or who
SM5662RS
in
Ataxia UK
7 years ago
64 with Friedreich's Ataxia
Hi My husband has Friedreich's Ataxia and due to the increasing severity of his condition he moved into a nursing home four years ago. He is hugely compromised by his condition as in addition to the physical limitations he is also blind and has a hearing loss. As his speech is very difficult to understand
Hi My husband has Friedreich's Ataxia and due to the increasing severity of his condition he moved into a nursing home four years ago. He is hugely compromised by his condition as in addition to the physical limitations he is also blind and has a hearing loss. As his speech is very difficult to understand
Mary_Dixon
in
Ataxia UK
7 years ago
Cerebellar ataxia through gluten intolerance ?
I'm new here, my name is John Dobson, I'm retired age 70 and my wife and I recently moved to a bungalow in Sutton-in-Ashfield, Nottinghamshire from a 2-storey stone cottage just outside Holmfirth in West Yorkshire (Last of the Summer Wine country). My mother was diagnosed with cerebellar ataxia in the
I'm new here, my name is John Dobson, I'm retired age 70 and my wife and I recently moved to a bungalow in Sutton-in-Ashfield, Nottinghamshire from a 2-storey stone cottage just outside Holmfirth in West Yorkshire (Last of the Summer Wine country). My mother was diagnosed with cerebellar ataxia in the
Poweruser
in
Ataxia UK
7 years ago
Hi
Morning hope all are well I have just been diagnosed with Cerebellar ataxia plus syndrome MIR SCAN showing disproportionate atrophy of the cerebellar vermis not sure 🤔 what to expect any advice from anyone
Morning hope all are well I have just been diagnosed with Cerebellar ataxia plus syndrome MIR SCAN showing disproportionate atrophy of the cerebellar vermis not sure 🤔 what to expect any advice from anyone
Shahidzak
in
Ataxia UK
7 years ago
I'm 28 male from India
I had head injury in 1996 after 1&half year i had brain surgery in 1997 & was diagnosed with cerebral ataxia my left side of the body is skaking & I have a slurred speech problem there is any chance to recover this slurred speech problem
I had head injury in 1996 after 1&half year i had brain surgery in 1997 & was diagnosed with cerebral ataxia my left side of the body is skaking & I have a slurred speech problem there is any chance to recover this slurred speech problem
Raymond_
in
Ataxia UK
7 years ago
Undiagnosed Ataxia
Hi My son is 4, and has an '
Ataxic
gait
', but he has no diagnosis. He has had lots of tests (2 MRI of brain & spine, lumbar puncture, ataxia gene panel, chromosomes, bloods etc) all which are normal.
Hi My son is 4, and has an '
Ataxic
gait
', but he has no diagnosis. He has had lots of tests (2 MRI of brain & spine, lumbar puncture, ataxia gene panel, chromosomes, bloods etc) all which are normal.
Mango1983
in
Ataxia UK
7 years ago
disturbance
Having been diagnosed with progressive cerebellar ataxia 6 months ago last night I awoke 5.30a.m. with my left leg shaking so violently i couldn't move for about 5 minutes,just lay flat on my back with heart racing and broke into a sweat. My left leg is weakest and causes most trouble but this really
Having been diagnosed with progressive cerebellar ataxia 6 months ago last night I awoke 5.30a.m. with my left leg shaking so violently i couldn't move for about 5 minutes,just lay flat on my back with heart racing and broke into a sweat. My left leg is weakest and causes most trouble but this really
petbar
in
Ataxia UK
7 years ago
For those of you who are parents to young children with ataxia
At what age were your children diagnosed? what were the initial symptoms that you noticed? what kind of genetics and metabolic tests have they undergone and - Is a regular MRI good enough to diagnose cerebral ataxia? or does it have to be a functional MRI?
At what age were your children diagnosed? what were the initial symptoms that you noticed? what kind of genetics and metabolic tests have they undergone and - Is a regular MRI good enough to diagnose cerebral ataxia? or does it have to be a functional MRI?
ritaa
in
Ataxia UK
7 years ago
How does an ataxia terminal stage look like?
Hi, My father is suffering from SCA. He began to have gait disturbances when he was 40. Now he is 54. He can barely walk on his own. He doesn't use a wheel chair but can walk with the support of a person, or holding something fixed, that too very slowly. Although he can eat on his own, he also has some
Hi, My father is suffering from SCA. He began to have gait disturbances when he was 40. Now he is 54. He can barely walk on his own. He doesn't use a wheel chair but can walk with the support of a person, or holding something fixed, that too very slowly. Although he can eat on his own, he also has some
live_your_life
in
Ataxia UK
7 years ago
Cerebellar Ataxia of my 3 Year old son
Hello. My son was diagnosed with genetic cerebellar ataxia. I want to create a community for people who suffer from ataxia and their families, like this one, only in my country- Israel. Does anyone know accidentally of a body that exists already in Israel that gives that option to families or does anyone
Hello. My son was diagnosed with genetic cerebellar ataxia. I want to create a community for people who suffer from ataxia and their families, like this one, only in my country- Israel. Does anyone know accidentally of a body that exists already in Israel that gives that option to families or does anyone
Rosenfeld
in
Ataxia UK
7 years ago
Fundraising
Hello everyone, how exciting about trehalose. It would be great if we all had some hope for our future - the sooner the better! In the meantime I think we should all be fundraising if we can for Ataxia UK - it has been great to have it there for the helpline, information and now this forum where we
Hello everyone, how exciting about trehalose. It would be great if we all had some hope for our future - the sooner the better! In the meantime I think we should all be fundraising if we can for Ataxia UK - it has been great to have it there for the helpline, information and now this forum where we
Zigalig
in
Ataxia UK
8 years ago
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