I'm sure I've seen Q10 mentioned on here in relation to ataxia. I was just wondering how exactly it helps with ataxia and what symptoms it relieves?
Thanks
Kati
yes - it was question from Jess
Patsy
I was taking it, as is my Dad and several of my family members, but it was costing me too much $ per month. My neurologist said if I could continue it, do it...if not, fine. It has shown improvement in some and not in others from what he told me. I'm in a study at UCLA also. I've taken fish oil 1200 mg 3 x a day for years now. My Dad also takes it. The neurogeneticist who runs my program told me that I should continue that.
what benefits did you get from the fish oils? did it help with ataxia symptoms or just health in general?
Honestly, I've never been able to "detect" any noticeable symptoms or relief. A doc prescribed it well before my diagnosis.
I was told by neurologist that the only thing I could do for CA would be to eat healthily and get some exercise.
I have extended this advice to taking supplements and minerals in whatever form seems best - you cant do more than that can you?
Nothing is going to work miracles but if living 'healthily' and taking supplements, stops or even slows progression, that has to be a good thing.
Sometimes any benefits can be attributed to psychology but that cant be a bad thing either.
Some people spend their money on shoes and clothes, handbags etc - I spend whatever I can spare on supplements.
Right?
Patsyx
True, however I would ask the doctor if there are any side effects from adding certain ones together when you add a new one you haven't tried before, as herbal medicines aren't regulated like ones we get from doctors.
I'd rather take something that is found naturally in the body, that my body might not be making enough of (like thyroid hormone, Q10) rather than drugs like anti depressants and stuff that aren't naturally found in the body, as I'm convinced that my ataxia has come from the epilepsy meds I was put on in last year of university.
I prefer to spend my money on technology that will help me stay independant whether thats a scooter, computer programs or a games console for daily physio!
sounds good to me - I was surprised to see co Q10 on special offer in Tesco today - you never used to be able to find it in there. I am a little sceptical of the make up of super market own brand supplements - have always felt more comfortable about buying from Natures Best.
Patsy
You and I think a lot alike! Since my diagnosis, I practice whatever it is they say I can't do, or did slowly, etc. until I make improvements. I'm a realist so I know I can't forever and always do these things, but for now, it really helps my mood. This past Friday was my 6 month followup at UCLA and I did better than the 6 months earlier and improved again! I don't work now so my job is taking control of my health (through exercise, positive people, grateful for all I am able to do).
Patsy said:
I was told by neurologist that the only thing I could do for CA would be to eat healthily and get some exercise.
I have extended this advice to taking supplements and minerals in whatever form seems best - you cant do more than that can you?
Nothing is going to work miracles but if living 'healthily' and taking supplements, stops or even slows progression, that has to be a good thing.
Sometimes any benefits can be attributed to psychology but that cant be a bad thing either.
Some people spend their money on shoes and clothes, handbags etc - I spend whatever I can spare on supplements.
Right?
Patsyx
Another point the sticks in my mind - I heard at ataxia conference - questions and answers panel - that invariably when a patient is showing worsening symptoms, it is not due to the cerebellum showing further shrinkage but the body's inability to cope as well as he had done. This is either due to ageing or depression.
Patsy
I have made improvements over this last year and I think its cos of the research I've been doing that I understood what has happening and worked out how to compensate.
My neuro never explained that my body needed to readjust for each new symptom, neither have they been able to explain why I get a new symptom every 18month-2 years or an existing symptom getting worse since onset. Despite all the exercise the last year my newest symptom has been getting mild spasms in my tongue either after drinking alcohol or when I've had to try and talk alot... yet I am fitter now than I have been for years since this all started! My doctors are baffled!
I know what you mean Kati. I was diagnosed Sept 2010 and from Feb-May 2011 had horrible symptoms all at once (falling, stammering, losing balance a LOT, etc). Then May-Aug I went to physical therapy and speech therapy and learned a lot. Now I do it on my own. Since taking control of my health (no longer working) I've made huge strides. My first symptom began in 2007 with migraines (I'd never even had headaches before). Feb 2011 my neurologist began botox injections at the base of my neck and above my brows. My migraines went from 4/week to 2-3/month! That's when I was able to finally do the physical work (getting out of bed before the migraines were under control was impossible). I also reduced my stress by about 150%. I stay away from family drama (as much as possible of course), steer clear of negative people or try to help them see the positive side in things and really just do what I can to prove my docs wrong. I see Dr. Susan Perlman at UCLA for a clinical research study on the natural history of SCA-6 (although I'm transferring to UC San Francisco since it's closer for me). It's really helped me just by seeing WHAT they test on me because then I know what to practice, what to look for, etc. Another thing that helped me was taking my husband with me. We also went to visit my aunt and uncle who were side by side and that was an eye opener. It was like looking into my future so it again motivates me to do as much as I can for as long as I can. I'd only seen my Dad and how he was but he is super positive, does physical therapy/speech therapy, everything he CAN do. It was truly eye opening and motivating. I can only do what I can do, but that's a LOT right now! No one else could even tell I have anything wrong with me now, compared to a year ago.
I love to read this - you ar both so inspiring. x
Hi Michael,
My strong family history made it very easy to determine the SCA-6 diagnosis and of course the genetic testing confirmed it. Sounds like you had the same reaction as me....worse 1st then better once I made the effort to take control of my health.
My Grandmother's brother was thought to be a drunk due to stammering, falling, and yes - he did drink....but now we know he had SCA-6.
Hi,
What should I suggest my 18 yr old do to help with his hand shaking? He draws (studies Fine Arts) and is so bummed out that he can't achieve the same results he used to get.
http://samkasirer.tumblr.com/artwork
Thanks for suggestions.
-Katherine
Katherine have a word with Kati Lea - she has good advice on this subject
um, I'm confused because this discussion got off-track from Q10....
Kati, if you're talking about the supplement Q10 or CoQ10 (in the US), i discussed with my neuro and genetic counselor and many others and they did not think it helps too much in general.
I tried it early on but it did not help me at all.
I think a lot of ataxians take it and some say it helps so I'm not sure. I guess it depends on the ataxia one has.
Online literature says POLG1 cases are helped by it, but that seems to be only a theory to me.
ok, I'm still researching and have to wait for money to go in anyway, I'm not sure if it will go in until the benefits office have decided whether I will get the new benefit or not.
I have found exercise has worked for me, but again I guess it depends what type of ataxia you have. I don't have a constant tremor just very jerky movements overall, for me I found splints with the metal weight over the top of hand/lower arm instead of under wrist, so it has the effect of steadying hand (like as if someone had their hand over yours to steady it) rather than restricting movement of wrist.
Katherine: Can your son use a computer to do art instead? as maybe he can find an alternative way to control cursor and get results he can't get drawing with a pen? Here's some examples from a guy who learnt to use an headmouse after been left paralysed from neck down in car accident.
http://www.laesieworks.com/tekeningen/index.html
He has his own business and does art, photography, designs icons for Mac software and T-shirts on Cafepress etc.. so if your son can find the right access method for him (may not necessarily be an headmouse) he could still go into the field of computer art and design or something like that?
Kati
That's a massive dose and my expectations would never be that great.
Patsy