I got the diagnos 5 years ago when I was 41 but it started earlier. Many has died in my family on my mothers side. I have tried so many things to get better and I only try things that doesnt harm me, so never medicine. Since may last year I have tried a protocol that makes me better and now my goal is to be 100%
I am doing the protocol by Anthony Williams, medicalmedium. Please read his books no 1 and the last one. It is about treating the cause and its not the gene blame.
Good luck to all of you :)!
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Maysan71
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If you have SCA7 and this works for you crack on. If you have suffered the loss lots of other folk on here have, then I'm sorry. I think I will continue to put my trust in the nhs for my daughter's care rather than your advertised product!
I dont sell anything I just want to share my experience. And very sadly people react like u do. If u feel what you are doing is restoring your health great for you :)!
I used to have problems swollowing and always had a pressure on my throat and now i dont, i have more energy and my brain is more clear and faster, my walking is more stable and I am faster in my movements. I have still a way to go but now I am doing something that works for me. I dont excercise cause right now its not helping me and I hope to se more improvements in my speach. I speak fine today but cant fast and clear.
THe secret is very logic to me:
No gluten
No dairy
No eggs
No processed food
A lot of fruit and veggies
Some supplements, i am focusing on top 5 for my problems: zink,B12, Lysin, Cvitamin
the books are not expensive and it explains all in a very understanding way. U can also follow him on instagram and see all the people that gets help from this.
I'm just putting this out there ... if people are sadly responding like me then maybe you need to change how you post. If you really want people to be open to what you've got to say then you need to say it in a way that doesn't keep making them respond like me! 😉
People often gets offended when someone goes against the system like I do. I am more focused on the ones that wants to now more then convincing people to try what I am doing. If someone wants to do something to improve health they do theire own research.
We have a lot of difficulties and problems in this community with ataxia and i just want to share som positive news.
Thank u for sharing. Info is always appreciated. My drs. Advise is not good or hopeful...... therefore I will continue to be open-minded and explore alternative therapies. For the cost of a book and some effort I ask what is there to lose. Even hope is beneficial. 😊
You are so right :)! And there is no positive future for us with if usk the doctors. But for the first time in years I am not depressed and I am doing something that makes me better both mentally and physically.
Dear Maysan71, I appreciate your helpful post and have ordered the book! I've had ataxia due to Niemann Pick C disease for 23 years now (I thought I had ataxia due to an unknown cause, but found out a few months ago it's due to NPC). Over the years it's gotten progressively worse and I'm always looking for things that may help! So thank you for posting your story and I hope your SCA7 continues to improve! My best to you..., ;o)
What is NPC? If u want to feel better try to eliminate eggs, diary and gluten, Eat more fruit. You will be surprised when u read the book and that it feels logic that we can feel good or better :)!!
I applaud you for taking your illness into your own hands and trying something. I have SCA1 which is very similar to SCA7, and I am 51 years old (soon to be 52 ). I am very active on Health Unlocked because I believe that there are actions patients with ataxia can take to fight their illness. It makes me happy to see you are trying something. I, had, numerous symptoms of my illness including inability to stand on one foot, trouble going down stairs, slurring speech, diminishing hand writing, and fatigue. Some of these symptoms I didn't even realize were actual symptoms until they went away, but I am not here to talk about me.
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My reason for writing is to encourage you to continue reading as much as you can because although you may be having initial positive results from what you are doing it is not likely that the diet and supplements you are using will help for very long. Without question a healthy diet like the one prescribed in the book is a big step towards a healthier life, but there is so much more I think you can do that is specific to your illness. Mr. William's approach is simply not specific enough to your illness.
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I believe, however, that there is enormous research that IS helpful and available today. I will provide you with a series of links to research and then pray that you take the time to read and watch it all so you can come to your own conclusions, and most importantly talk to your doctor.
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Using a multi-pronged approach to neurological disorders including diet, exercise, and supplements:
and key to the exercise is this enormously important study that shows exercise may actually be reducing the aggregation of mutant proteins in the brain which is the root cause of your ataxia!
and then I have written numerous posts on the evidence in support of Niagen which is a vitamin B3 that is new, more efficacious, and safer than older forms of vitamin B3. The first study is about Huntington's Disease, but that disease is very similar to SCA7 as well since the cause is a repeating mutant DNA triplet or a polyQ disorder just like SCA7
I have more but I think that is enough for now. I will finish by providing you with a list of what I am doing and tell you that I have zero symptoms and am getting stronger month by month.
1) treadmill running 4-5 times a week for 30 minutes at 80% max heart rate followed by 10 minutes cool down
2) a diet like yours, mostly vegetarian with little or no dairy, processed food, sugar or meat and rich in cruciferous vegetables
3) I take these supplements: 40g trehalose in 2 cups of coffee, 3 squirts of trehalose infused water per day in my nose, 500 mg of niagen twice daily, 50 mg of pterostilbene twice daily, 2 cups of green tea daily, 2000 IUs of vitamin D
4) yoga 3 times a week
5) meditation weekly
I would also note that I am currently researching and will likely add a thiamine supplement benfotiamine:
I have been sick for a while now and I know the difference with initial positive results and real changes.
I have always exercised a lot but this last year or two I have been to tired or to weak but still my walking, energy level and talking has improved. I know what I am doing now is making me better and it all makes sense to me.
I totally agree with u on the food and I am a strict rawfood vegan. Even if we all have ataxia in this group we all have different bodies with different setttings. I only focus on food and some supplements the workout and exercise will come.
If u read his book its about treating the cause not symptoms and when we do we start to feel better.
We need people like you to encourage this group so that we can focus more on feeling better or become 100% than just surviving.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
). I am very active on Health Unlocked because I believe that there are actions patients with ataxia can take to fight their illness. It makes me happy to see you are trying something. I, had, numerous symptoms of my illness including inability to stand on one foot, trouble going down stairs, slurring speech, diminishing hand writing, and fatigue. Some of these symptoms I didn't even realize were actual symptoms until they went away, but I am not here to talk about me.
help I am scared of losing everything
I have no questions atm - My Rap 
I have a very wobbly gait
I am having to reduce my working hours and am terrified about the future. How do people cope financially and emotionally?
I am going for the result genetic test tmr
