I was diagnosed with SAC5 Ataxia. My Neurologist explained to me that it was degenerative over time for sure, & that it was effecting & causing my Cerebellum to get smaller. She also mentioned that it was Heriditary, & not alcohol related in anyway. But told me to stop drinking alcohol, because it could possibly speed-up the degeneration process over time. What has me confused, & a question that has been on my mind for some time now. If this Ataxia I've been diagnosed with is degenerative in the first place, how will not drinking alcohol effect the degeneration process any more or less. The degeneration process is going to happen over time anyway, & no Neurologist or Doctor can tell when or even give you an educated guess of when it will take place(within 5, 10, 15, 20, etc. years?). So how could they possibly know, how alcohol plays apart in speeding-up the degeneration process of SAC5 Ataxia or any form of Ataxia for that matter? & if the consuming of alcohol is such a big deal, what about smoking some Marijuana. I never hear them talking about that, especially in any harmful or negetive way? Or, could it possibly be. That since it's my Cerebellum that is effected by the Ataxia which already causes what may be mistaken as a drunken state, it just wouldn't be to wise to purposely impair that area any futher due to fallen & a increased injury risk?
I think we covered this before at http://forum.livingwithataxia.org/forum/topics/sac5-ataxia-2 Did you have a specific question now that was not addressed then? Or were you wanting to canvass a wider range of opinions?
As far as the marijuana question goes, the difference between alcohol and marijuana is that any long-term effects of heavy marijuana use appear to be in the hippocampus (ability to remember words), whereas long-term heavy alcohol use can affect the cerebellum. As SCA degenerates the cerebellum, it doesn't need any help. However, there's no reason why marijuana use would contribute to SCA degeneration.
I looked at your profile and noticed you basically made the same argument in 12-13, here the URL to that discussion http://forum.livingwithataxia.org/forum/topics/sac5-ataxia-2?xg_sourc... . You more or less asked the same question then but now you've added smoking pot in. I hate to jump to a conclusion but the way it appears to me is that your looking for someone to tell you that drinking wont affect the disease and to go ahead and do it. That you've asked twice sort of indicate that drinking is something you value more than whatever small amount it might slow progression.
Trust me you aren't unique in wanting to do something despite any potential harm it might cause. Ive seen cancer patients smoke before chemo, diabetics who don't eat right or monitor insulin, obese people that eat enough food for 3 people in a day. The only conclusion it makes me have is that most people do what they want to do despite any effect on their health. Nobody does know how long a progressive illness might take under the best circumstances so how would they put a number on how much drinking will speed it up. And also someone could follow every health tip exercise program and drug or supplement routine and progress faster than someone who doesn't even try. With my ataxia I was late 20s before it got really bad my cousin hasn't walked since he was 12, his brother is in his 20s and is a heavy drinker and they both have FA just like me.
The point is that if you want to drink that much just do it. If you want to smoke pot do it. If a neurologist saying it might accelerate progression isn't enough to stop you then nothing will be. I don't drink but that's because I don't feel like falling and getting hurt. I don't take every supplement I could and don't eat great all the time and probably have hobbies that could kill or hurt me (4 wheeling, snowmobiling, hunting, walking down stairs lol) that's just the choices I make. I would rather do the things I enjoy now than stay safe and maybe extend life out a little longer. So I say go ahead and do whatever you want to do even if it might be "bad" in the long run and as long as you grasp what effects those things might have later on.
BTW its extremely late and Im half asleep so sorry for rambling.
I like to have a cocktail every night. I know its not good for me. But having Ataxia is depressing. I know the drink a night makes things worse. But I really don't care about that. Nothing I do makes it better. I tried it all. Nothing helps mine. I did try medical marijuana. That nobody can tell me it helps. It does not work with ataxia at all. Nothing good about it. You have to do what makes you feel best!
Dear Steven, Good feedback everyone has given! I LOVE this site, as you get a variety of opinions and views, and can agree to disagree, safely! Alcohol effects the cerebellum directly. Therefore, I will have a glass of wine or a fu-fu drink occasionally socially. I prefer not to drink alcohol as a rule, as it causes my speech to be even more slurred than it already is, and my balance to be more compromised. I don't like how I feel, as I like to be as "in-control" as I can be with my ataxia. That's just me. Can't speak of marijuana, as I've never tried it. I do as much physically as I can, although I've taken some pretty nasty falls (hurt myself), which I don't relish!!! Therefore, it comes down to how one feels about whatever, as long as it doesn't hurt anyone else! Just my opinion..., ;o)
They told me the same thing, I asked should I eat more vegetables, drink more water, do not eat red meat and more things I asked and they do not know what its good or bad for you, I live in Houston, Tx , and I went to see the best that I can find at Baylor and another ones, the only thing is they said is new and do not know yet what medicine to give you and there is no money to do the research,
At least that's honest, hopeless. I've been having a rant this morning about the "Ataxia Diet FAQ" issued by the the National Ataxia Foundation. I know they're trying to help, I really do, but at least one set of their suggestions is based on junk science - not really what I call science at all - along with a bunch of false assumptions.
Now ordinarily I'd just day "live and let live", but the thing that bothers me is the possibility that some ataxia sufferers might take false hope from the dietary recommendations, and think they can avoid or skimp PT and/or exercise if they just figure out what food not to eat, when there is zero solid evidence (as opposed to individual anecdote) for dietary changes improving ataxia, except for a very few, very specific exceptions (e.g. gluten or alcohol ataxia; some supplements for FA). It's particularly annoying that they've just extrapolated from a (junk science) book on possible dietary migraine triggers, to a suggestion that removing those foods from the diet might reduce dizziness.
Tell us more about this, Lute. You are a scientist, yes? I would like to hear your thoughts on the recommendations. I have an open mind on this one.
Hi dancermom,
Yes, I'm an epidemiologist. I do my best to keep an open mind, and I don't think that science can answer every question.
However, the "Ataxia Diet FAQ" bothers me intensely. My particular problem is with Table 1. Yes, the document starts with qualifiers "for discussion purposes... "not been proven to work with all forms of ataxia, nor ... tested with a sufficient sample of ataxia patients to recommend their applicability for any specific patient. ... ", consult with your doctor, etc. And the title of Table 1 includes the additional qualifiers "Foods that if avoided MAY reduce dizziness and improve a sense of balance in SOME ataxia patients".
May? Some? Says whom? Where's the evidence?
The list is clearly lifted almost wholesale from the David Buchholtz book "Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain" (NewYork:Workman Publishing, 2002). That book is populist science (It's the "some people told me they find these things to be triggers, believe me I know what I'm talking about") school of medicine, not the "we have tested migraine sufferers and found diets excluding these foods reduce their headaches" school of medicine, nor even the "we have systematically surveyed these patients and they report the following triggers" school of medicine. It reports current hypotheses on migraine without referencing the studies they come from. There is therefore no way of checking the quality of those studies of whether the author has correctly interpreted their findings. So he's a Neurologist at Johns Hopkins, so what? Scientists have to trade on the quality of their research, not the reputation of their institution.
Most importantly, however, that book is about headaches and migraines. It's not about Ataxia. Yes, they both happen in the brain, but so what? All sorts of things happen in the brain. That doesn't mean the two things are connected. Migraines can be hereditary, and migraines and SCA may appear in the same family. That still doesn't mean the two things are connected. And it certainly doesn't mean that things that MIGHT (where's the science?) trigger migraine even might reduce dizziness or improve balance.
If there is any quality evidence of an anti-migraine diet helping with Ataxia (and I haven't found any), then the FAQ should be referencing that, not populist junk.
Sorry, that's all pretty harsh, but it really does annoy me. The thing is, I know NAF are trying to help, and are probably dong the best they can, and I'm glad they're there and doing what they do. But that only makes their publication of that table all the more disappointing.
Of course, someone's going to come along and say "I tried that diet and it really helped", and I'll say "Good, keep it up then, if you feel like it's making a difference to you, but remember to keep doing your exercises too" But as a scientist, I'll be thinking "Nice anecdote, not evidence", and "placebo effect?".
The worst of it is, as ataxia studies go, it probably wouldn't be a hard study to do. They're making a general claim rather than limiting it to some Ataxia types, so you'd get a good sized bunch of people with hereditary ataxia, and you'd give one set the Ataxia Diet FAQ Table 1 restrictions, and the other set a random set of other dietary restrictions (No Pears. No Sesame Seeds. No Pumpkin. etc., would need to be a similar length list.) Then you come back in 6 months and ask them how well they've kept to the restrictions, and whether they've found it helped. And if there's a statistically significant difference between the two groups, then the diet makes a difference, and if there isn't, then it doesn't. And regardless of whether the Table 1 restrictions have any statistical effect, some people from the other group will continue to exclude pears and pumpkins and sesame seeds for the rest of their lives, because that's how the placebo effect works.
Also, the FAQs have internal contradictions. Table 1 says avoid alcohol and chocolate; Table 2 recommends red wine and chocolate milk for flavonoids. But that's a minor complaint compared to the main one.
Anyway, that's my rant about over for tonight.
Thanks. Lute, I can definitely see why the recommendations give you pause. Yes, it's too bad there isn't a proper double-blind study so we can get some evidence-based results, probably because no one stands to profit much from patients avoiding chocolate and alcohol. Thank you for sharing your perspective on this; it gives all of us food for thought (ok, I guess that was a bad pun).
No. Puns are good. I like puns. And bad puns are the best.
Lute, I loved your “rant” because I was thinking the same thing, but not having any scientific background, I did not dare say anything.
Thank you for posting your opinion. Take care.