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Ataxic gait
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A new way to walk
Hi all, I just want to share with you all how I have changed the way I walk recently. I have a SCA unknown gene, and I have quite a lot of spascitity. From last November I have had a lot of trouble with walking and I started to use two walking sticks most of the time. Walking was becoming very dangerous
Hi all, I just want to share with you all how I have changed the way I walk recently. I have a SCA unknown gene, and I have quite a lot of spascitity. From last November I have had a lot of trouble with walking and I started to use two walking sticks most of the time. Walking was becoming very dangerous
ww-wibblywobbly
in
Ataxia UK
4 years ago
Gene variant in 2005
Hey everyone!! I have a diagnosis of Episodic Ataxia and recently seen my new neurologist that’s very knowledgeable in the area and knows my entire family history , took care of my other family members with Ataxia. I’ve recently had my appointment and got straight up answers on what I was seeking for
Hey everyone!! I have a diagnosis of Episodic Ataxia and recently seen my new neurologist that’s very knowledgeable in the area and knows my entire family history , took care of my other family members with Ataxia. I’ve recently had my appointment and got straight up answers on what I was seeking for
Episodic_Ataxia
in
Ataxia UK
4 years ago
New Ataxia photo ID cards
Good morning guys, hoping you’re all well in this horrible miserable wet day-well that’s what it’s like here in West Yorkshire! Just a query really. - My husband received his ataxia ‘friend’ ID card but the photo I included is missing from it, I myself who have C.A with atrophy an still awaiting mine
Good morning guys, hoping you’re all well in this horrible miserable wet day-well that’s what it’s like here in West Yorkshire! Just a query really. - My husband received his ataxia ‘friend’ ID card but the photo I included is missing from it, I myself who have C.A with atrophy an still awaiting mine
Legs-alive
in
Ataxia UK
4 years ago
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About tandem Ataxia and vertigo
What does tandem Ataxia mean exactly? Also, does anyone else have vertigo attacks that last 2-4 hours when you can't move because of the spinning sensation, and what medication can help this?
What does tandem Ataxia mean exactly? Also, does anyone else have vertigo attacks that last 2-4 hours when you can't move because of the spinning sensation, and what medication can help this?
Polly101
in
Ataxia UK
4 years ago
Mild cerebellar atrophy
Hi My husband had a scan for suspected tia/strike after temporary loss of vision back in November 2019. The results of the MRI came back with mild cerebellar atrophy and 2 microbleeds. The stroke consultant said not to worry and try to blame alcohol as a cause although my husband doesn’t drink. After
Hi My husband had a scan for suspected tia/strike after temporary loss of vision back in November 2019. The results of the MRI came back with mild cerebellar atrophy and 2 microbleeds. The stroke consultant said not to worry and try to blame alcohol as a cause although my husband doesn’t drink. After
Burtie-bengal
in
Ataxia UK
4 years ago
Who can be prescribed medical cannabis
Medical cannabis (and cannabis oils) "Medical cannabis" is a broad term for any sort of cannabis-based medicine used to relieve symptoms. Many cannabis-based products are available to buy online, but their quality and content is not known. They may be illegal and potentially dangerous. Some products
Medical cannabis (and cannabis oils) "Medical cannabis" is a broad term for any sort of cannabis-based medicine used to relieve symptoms. Many cannabis-based products are available to buy online, but their quality and content is not known. They may be illegal and potentially dangerous. Some products
wobblybee
in
Ataxia UK
5 years ago
Are you diagnosed with MSA (Multiple System Atrophy)
MSA trial into dizziness relief treatment seeks participants Do you suffer from dizziness, light-headedness and feeling faint? The SEQUOIA Study is a clinical research study looking at an investigational drug called ampreloxitine (also known as TD-9855), for people with Multiple System Atrophy (MSA
MSA trial into dizziness relief treatment seeks participants Do you suffer from dizziness, light-headedness and feeling faint? The SEQUOIA Study is a clinical research study looking at an investigational drug called ampreloxitine (also known as TD-9855), for people with Multiple System Atrophy (MSA
wobblybee
in
Ataxia UK
5 years ago
Another study supporting Niagen for Ataxia.
Nicotinamide Pathway-Dependent Sirt1 Activation Restores Calcium Homeostasis to Achieve Neuro- protection in Spinocerebellar Ataxia Type 7 https://pubmed.ncbi.nlm.nih.gov/31859031-nicotinamide-pathway-dependent-sirt1-activation-restores-calcium-homeostasis-to-achieve-neuroprotection-in-spinocerebellar-ataxia-type
Nicotinamide Pathway-Dependent Sirt1 Activation Restores Calcium Homeostasis to Achieve Neuro- protection in Spinocerebellar Ataxia Type 7 https://pubmed.ncbi.nlm.nih.gov/31859031-nicotinamide-pathway-dependent-sirt1-activation-restores-calcium-homeostasis-to-achieve-neuroprotection-in-spinocerebellar-ataxia-type
sunvox
in
Ataxia UK
5 years ago
Guanabenz for Ataxia: Caution, conspiracy theory ahead.
EDIT: Cliff Notes version of my post. Guanabenz cured SCA3 in worms. Guanabenz is an FDA approved medicine used to treat high blood pressure. - - So a few days ago I learned of a new drug Hydromethylthionine that was in Phase 3 clinical trial for treatment of Alzheimer's Disease: Concentration-Dependent
EDIT: Cliff Notes version of my post. Guanabenz cured SCA3 in worms. Guanabenz is an FDA approved medicine used to treat high blood pressure. - - So a few days ago I learned of a new drug Hydromethylthionine that was in Phase 3 clinical trial for treatment of Alzheimer's Disease: Concentration-Dependent
sunvox
in
Ataxia UK
5 years ago
Retirement
Hi Well I've finally done in, I handed my notice in, am taking early retirement at 58. I was diagnosed with Ataxia about 12 years ago. I had 2 boys and didn't work till 40 odd so have worked 18 years and I'm tired. I know from posts on here a lot of you are still working and I wish you well but my partner
Hi Well I've finally done in, I handed my notice in, am taking early retirement at 58. I was diagnosed with Ataxia about 12 years ago. I had 2 boys and didn't work till 40 odd so have worked 18 years and I'm tired. I know from posts on here a lot of you are still working and I wish you well but my partner
weegiz12345
in
Ataxia UK
5 years ago
My Sheffield Visit update
Hi guys.My appointment with Sheffield, they were amazing, however as I was given it appears a cancellation appointment there was no info from Salford or paperwork. I had to go through everything whilst Dr Prire made notes. I then had an examination very thourgh and more discussions. Basically I have
Hi guys.My appointment with Sheffield, they were amazing, however as I was given it appears a cancellation appointment there was no info from Salford or paperwork. I had to go through everything whilst Dr Prire made notes. I then had an examination very thourgh and more discussions. Basically I have
Pacitto
in
Ataxia UK
5 years ago
Possible causes of Ataxia
🙂 This is a ‘long read’ and may be difficult to interpret, but never the less it’s interesting. What processes can cause ataxia? The pathophysiology of cerebellar ataxias is as diverse as the various neurological and systemic diseases affecting the cerebellum. Broadly classifying ataxias into genetic
🙂 This is a ‘long read’ and may be difficult to interpret, but never the less it’s interesting. What processes can cause ataxia? The pathophysiology of cerebellar ataxias is as diverse as the various neurological and systemic diseases affecting the cerebellum. Broadly classifying ataxias into genetic
wobblybee
in
Ataxia UK
5 years ago
Research and Trials
www.ataxia.org.uk Over the last week there have been some great articles about research and trials from all around the world, which we have shared on our Twitter page. If you don't follow us on Twitter already, here are the links to some of these: 📚Revolutionary DNA test: http://bit.ly/30hX3j0 📚Investigation
www.ataxia.org.uk Over the last week there have been some great articles about research and trials from all around the world, which we have shared on our Twitter page. If you don't follow us on Twitter already, here are the links to some of these: 📚Revolutionary DNA test: http://bit.ly/30hX3j0 📚Investigation
wobblybee
in
Ataxia UK
5 years ago
Not all Rollators are suitable for taller people
Rollators for Tall People Why Should I Buy a Tall Rollator? A rollator can help you to maintain your independence by allowing you to continue walking by yourself without the help of a friend or caretaker. Instead of relying on an unstable cane or letting yourself get slowed down by an awkward walker
Rollators for Tall People Why Should I Buy a Tall Rollator? A rollator can help you to maintain your independence by allowing you to continue walking by yourself without the help of a friend or caretaker. Instead of relying on an unstable cane or letting yourself get slowed down by an awkward walker
wobblybee
in
Ataxia UK
5 years ago
Niagen and or Trehalose Mannitol experiences? Please share
Does Anyone has experience with Niagen and or Trehalose/Mannitol for SCA or Huntington? What was your experience? Anyone took Trehalose as a nose spray or eyedrops? Did you ever try NAD+ transdermal patches? I appreciate all feedback. Thanks in advance.
Does Anyone has experience with Niagen and or Trehalose/Mannitol for SCA or Huntington? What was your experience? Anyone took Trehalose as a nose spray or eyedrops? Did you ever try NAD+ transdermal patches? I appreciate all feedback. Thanks in advance.
hope778
in
Ataxia UK
5 years ago
Adrenaline is not my friend!
I have noticed that any rush of adrenaline, from a sudden shock to delivering training for a large group of people for work, makes me super wobbly. I couldn’t walk at all for about an hour after a mouse jumped out from behind my curtain. Anyone else have this?
I have noticed that any rush of adrenaline, from a sudden shock to delivering training for a large group of people for work, makes me super wobbly. I couldn’t walk at all for about an hour after a mouse jumped out from behind my curtain. Anyone else have this?
dansybelle
in
Ataxia UK
5 years ago
Looking for any suggestions that may help
Hi new to this site, my hubby was diagnosed with cerebellar ataxia in 2018 and looking for any advice my husband is finding sleeping a problem when his knees touch I know this sounds really random to me but could anyone suggest anything to help
Hi new to this site, my hubby was diagnosed with cerebellar ataxia in 2018 and looking for any advice my husband is finding sleeping a problem when his knees touch I know this sounds really random to me but could anyone suggest anything to help
Blueoscar
in
Ataxia UK
5 years ago
Belated Happy Christmas Everyone and a few questions.....
Hi. I hope you all had a great Christmas. It was my first one as a full wheelchair user and a bit difficult in different houses; but we managed. I now have my new bedroom and wet room downstairs which is amazing; well worth the wait 😍 Does anyone on here have an abnormality of their basal ganglia? If
Hi. I hope you all had a great Christmas. It was my first one as a full wheelchair user and a bit difficult in different houses; but we managed. I now have my new bedroom and wet room downstairs which is amazing; well worth the wait 😍 Does anyone on here have an abnormality of their basal ganglia? If
Grapes12
in
Ataxia UK
5 years ago
Sulforaphane. Now in supplement form. Best sup yet to cure SCA?
I recently stopped taking Chinese Skullcap and have replaced that supplement with BroccoMax by Jarrow. This supplement is being heavily studied by scientists as a general anti-aging supplement and clinically as an anti-cancer agent. Human studies show that it does in fact reach the brain, and researchers
I recently stopped taking Chinese Skullcap and have replaced that supplement with BroccoMax by Jarrow. This supplement is being heavily studied by scientists as a general anti-aging supplement and clinically as an anti-cancer agent. Human studies show that it does in fact reach the brain, and researchers
sunvox
in
Ataxia UK
5 years ago
Promising news re FA
🙂 Progress can be followed by logging onto www.clinicaltrials.gov NCT04176991 About CTI-1601 Discovered by R. Mark Payne, MD, at Indiana University School of Medicine, CTI-1601 is a recombinant fusion protein intended to deliver human frataxin into the mitochondria of patients with Friedreich’s ataxia
🙂 Progress can be followed by logging onto www.clinicaltrials.gov NCT04176991 About CTI-1601 Discovered by R. Mark Payne, MD, at Indiana University School of Medicine, CTI-1601 is a recombinant fusion protein intended to deliver human frataxin into the mitochondria of patients with Friedreich’s ataxia
wobblybee
in
Ataxia UK
5 years ago
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