Even though I don't know what it is like to live with this condition, I hope that you will be able to stay strong and fight back. Science is developing so fast these days so a cure might be just around the corner. Keep up the amazing content on this channel.
My name is Laura and I live in Missouri in the United States. I too have spinal cerebellar Ataxia. I loved watching your videos and I know exactly what you're going through! I have had tremors my whole life and I'm in my 50s now and unfortunately the Ataxia is progressing. It is unfortunate that we have to get out the word about what Ataxia is! We definitely need more research in the US and in the UK on Ataxia! I hope we can keep in contact! I wish you the best!
watched your cooking stuff then found this a great insight wow amazed but more impressed by your command of expression and language and intelligence a great guy live long and prosper (humbled)
There is an older genteman, named Dr. Clouse, who inherited this disease many years ago. He travels world wide to give physical therapy to people. Last I heard from him he was near Canada. He has it, but somehow people can not tell. I'm trying to see him but I'm from the South of the USA.
“Just finish speaking to a friend of mine who was suffering from Ataxia 🤒🤒for years but after a recommendation of Madida herbal center’s treatment to him, all his symptoms and ataxia was reversed with him completely restored to he normal self.”
Well firstly sorry to hear that and yes I had a few thoughts about it a while ago but every doctor I've seen including the head neurologist at the hospital in london I go to has said that there's little to no chance of it affecting anything other than your bank balance.
My mother has been diagnosed with spinocerebellar ataxia. Which type it is we dont know. Suggestion medical wise is to drink very very expensive drug called "Riluzole", to control symptoms (she actually appears to have only gait problems, nothing else really). Have you tried these? Did you consider them? We are on the fence about it now since its very expensive and we are not sure about the diagnosis (it might be that other symptoms will appear later on, but if not? Maybe it will do more harm than good in the long run).
ElzabetOwlpaw I haven't tried any of them to be honest I prefer just to try exercise and a healthy diet. I have been tempted to try something different but until anything is proven to work I think I'll stick with what I'm already doing.
Are the speech issues and eye movement symptoms unique to all SCA sufferers? Or can someone have this disease and not display those particular symptoms? I ask because my father can hardly shuffle very slowly when he walks, and he tells me he's not in pain, except his back hurts, but I read this can target your spinal cord too. Parkinson's medication did not help, no one knows what is wrong with my dad, and it's like the doctors don't care.
Hi, sorry for the late reply! As far as I know those are symptoms of SCA but i'm not definite. It's quite disheartening sometimes talking to doctors and it can seem like they don't care but they are just aas new to this as us. In my experience no medication has helped for me so far, hard work, healthy living and exercise is always good though. it will be hard and you can't expect too much but don't give up!
My father was from Lancaster PA from an Amish family. My mother was not. I grew up in the environment and there have been working with my father's family since 2007. I have a mutant dna. I have a son that shows no signs of this. Would enjoy speaking.
![fellow fellow - พรุ่งนี้ไม่มีใครรู้ feat. INK WARUNTORN [OFFICIAL MV]](http://i.ytimg.com/vi/QP6JyjYx_W0/mqdefault.jpg)
Even though I don't know what it is like to live with this condition, I hope that you will be able to stay strong and fight back. Science is developing so fast these days so a cure might be just around the corner. Keep up the amazing content on this channel.
Amy thanks for watching and you never know!
Yes. Know that there are people who will always support you.
My name is Laura and I live in Missouri in the United States. I too have spinal cerebellar Ataxia. I loved watching your videos and I know exactly what you're going through! I have had tremors my whole life and I'm in my 50s now and unfortunately the Ataxia is progressing. It is unfortunate that we have to get out the word about what Ataxia is! We definitely need more research in the US and in the UK on Ataxia! I hope we can keep in contact! I wish you the best!
Hi Laura, the best place to keep in touch would be my facebook page myshakylife, Thankyou and the same to you, lets keep spreading the word!
watched your cooking stuff then found this a great insight wow amazed but more impressed by your command of expression and language and intelligence a great guy live long and prosper (humbled)
martin g cheers my friend
There is an older genteman, named Dr. Clouse, who inherited this disease many years ago. He travels world wide to give physical therapy to people. Last I heard from him he was near Canada. He has it, but somehow people can not tell. I'm trying to see him but I'm from the South of the USA.
animebrit amazing I'd love to meet him some day
“Just finish speaking to a friend of mine who was suffering from Ataxia 🤒🤒for years but after a recommendation of Madida herbal center’s treatment to him, all his symptoms and ataxia was reversed with him completely restored to he normal self.”
I have cerebellar Ataxia ,We are all in this Together friend
John Colyer sure are
What are your symptoms? How did they start? How long did it take to progress?
It's been a gradual progression all my life really, I've had it since I was born.
Lol 😂, yes, SCA is the best! We are special! It's our super power!!! 👍✌
my mother passed from SCA1 and my sister has this also. im yet to be tested. have u looked into stem cell therapy. I see alot about that online?
Well firstly sorry to hear that and yes I had a few thoughts about it a while ago but every doctor I've seen including the head neurologist at the hospital in london I go to has said that there's little to no chance of it affecting anything other than your bank balance.
thats a shame. the progress videos look so convincing.
They do but every doctor I've seen has been in agreement that ataxia is just too complex for it at the moment.
My mother has been diagnosed with spinocerebellar ataxia. Which type it is we dont know. Suggestion medical wise is to drink very very expensive drug called "Riluzole", to control symptoms (she actually appears to have only gait problems, nothing else really). Have you tried these? Did you consider them?
We are on the fence about it now since its very expensive and we are not sure about the diagnosis (it might be that other symptoms will appear later on, but if not? Maybe it will do more harm than good in the long run).
ElzabetOwlpaw I haven't tried any of them to be honest I prefer just to try exercise and a healthy diet. I have been tempted to try something different but until anything is proven to work I think I'll stick with what I'm already doing.
Are the speech issues and eye movement symptoms unique to all SCA sufferers? Or can someone have this disease and not display those particular symptoms? I ask because my father can hardly shuffle very slowly when he walks, and he tells me he's not in pain, except his back hurts, but I read this can target your spinal cord too. Parkinson's medication did not help, no one knows what is wrong with my dad, and it's like the doctors don't care.
Hi, sorry for the late reply!
As far as I know those are symptoms of SCA but i'm not definite. It's quite disheartening sometimes talking to doctors and it can seem like they don't care but they are just aas new to this as us. In my experience no medication has helped for me so far, hard work, healthy living and exercise is always good though. it will be hard and you can't expect too much but don't give up!
It would be great if you joined our SCA support group on facebook.
Acquired Ataxia is another form.
My father was from Lancaster PA from an Amish family. My mother was not. I grew up in the environment and there have been working with my father's family since 2007. I have a mutant dna. I have a son that shows no signs of this. Would enjoy speaking.
Sounds complicated but if you have any questions then feel free to ask me and i'll do my best to answer them.