I was recently diagnosed with SAC5 Ataxia, even though the symptoms has been around for some years? It was suggested to me not to consume any alcohol, but I like to drink wine. What, I can't understand. If my diagnosed condition is proggresive degenerate, with no certain time factor known or explained. Where does alcohol factor in to this, & why does it seem to matter much in the first place? Any help or advice, would be greatly appreciated.
Do a search on internet - alcohol and ataxia. There are some articles that might help. Apparently alcohol makes ataxia worse.
I understand the effects alcohol, may have on Ataxia. But what I don't really understand, & confuses me to this day. & when I ask this question to my Neurologist, she never gave me a straight answer..."Was since my SAC5 disorder is a progressive degenerate anyway, that will apparently get worse over time. If it's not known how-long or exactly when the degeneration maybe or take place? How do you or is it known, what the effects of alcohol on my condition are? Does it just slow the enevitable down, or will it just make the symptoms that your already faced with worse(is. stumbling, falling, & such)? PS. & thank you once again, for all your time & patience. :-)
I feel* your frustration. I read on your profile you are newly diagnosed. It is very frustrating when the doctors can't tell us anything for sure. I'm like you in that I too would like more answers to my questions but I think the doctors just don't know what to tell us. I've been through the frustration of not knowing. I like you am trying to find out about disability. The first several months are very frustrating and the not knowing what to expect or when to expect it can be overwhelming. Depression can creep in so watch out for that one. I have finally resigned myself to just get up each morning and go from there. All I know is that some ataxias are caused from alcoholism so only figures that alcohol might not be good for us. Have you drank and did it make your symptoms worse? Have you been able to participate in physical therapy after diagnosed? That was tough but it helped me some.
PG said:
I feel* your frustration. I read on your profile you are newly diagnosed. It is very frustrating when the doctors can't tell us anything for sure. I'm like you in that I too would like more answers to my questions but I think the doctors just don't know what to tell us. I've been through the frustration of not knowing. I like you am trying to find out about disability. The first several months are very frustrating and the not knowing what to expect or when to expect it can be overwhelming. Depression can creep in so watch out for that one. I have finally resigned myself to just get up each morning and go from there. All I know is that some ataxias are caused from alcoholism so only figures that alcohol might not be good for us. Have you drank and did it make your symptoms worse? Have you been able to participate in physical therapy after diagnosed? That was tough but it helped me some.
I still may have a drink, ever now & then, but I have cut back quit a bit here lately in my opinion. Especially after my diagnosis & even before, so that made the cutting back a little more easier to deal with(Now I can go for days before even having the urge to drink, & when I do drink its still moderate to light. But with cutting back on the alcohol & with beening more aware of my actions, I've definitely noticed a difference in the way I feel & move. I've also noticed that with my limitation & awareness of my drinking, it doesn't seem to be so bad to have an occasional drink every now-&-then. Probably once or even twice a week in moderation to light, that seems to workout for me for the time been. & I did talk to my Neurologist, about any therapy I can take?
As for
Steven said:
PG said:I feel* your frustration. I read on your profile you are newly diagnosed. It is very frustrating when the doctors can't tell us anything for sure. I'm like you in that I too would like more answers to my questions but I think the doctors just don't know what to tell us. I've been through the frustration of not knowing. I like you am trying to find out about disability. The first several months are very frustrating and the not knowing what to expect or when to expect it can be overwhelming. Depression can creep in so watch out for that one. I have finally resigned myself to just get up each morning and go from there. All I know is that some ataxias are caused from alcoholism so only figures that alcohol might not be good for us. Have you drank and did it make your symptoms worse? Have you been able to participate in physical therapy after diagnosed? That was tough but it helped me some.
I So want to hear answers to your question also. My primary said, "no alcohol". My neurologist has never mentioned it. I only have a drink at home, and before dinner at a restaurant. Never if I am going to drive. It is bad enough that I weave when I walk, I don't need to add to this sight. Does alcohol make the progression of symptoms any worse? Seems right that I curtail drinking to just one, but do I have to give up everything?
Hi Steven, I like my alcohol to. And yes ataxia does get worse. But I still do it. Only one or maybe 2 out. But I make sure someone is with me, since I don't use a walker. One time out I used a kids stroller to push. That helped a lot. I cant help to give you the good advice not to drink. Because I do the same. Just be careful!
Lori
I posted a blog on this very subject about two months ago. If you'd care to seek it out, the responses were I recall numerous and helpful. I think that it would be fair to say that with one or two dissenting voices, the advice was not to drink alcohol.
Umigal, Giving up everything is up to you. Me personally. I will not. Do I get worse for the moment? Yes. Ataxia is depressing enough. It makes me forget for a while. I would say 2 max!
Lori
Umigal said:That, is my question as well Umigal. I hope that this question can be answered, with some kind of consistency & no contradictions from different Doctors & Neurologist in the near future. Cause, that can be very confusion at times. It has me thinking that this is my body, & I can pretty much tell what's within & out of my limitations. But with that been said, I don't want to add to the problem(who would really want to?. But, in my opinion. I honestly don't see were drinking if one chooses to, would make all that much difference. Rather than just give it up all at once because someone tells you to, but fail to give you a straight or complete answer. Rather than saying it alcohol will make the SYMPTOMS of the disorder worse(which that may already be known & understood, more than likely?). But what about alcohol & it's effect on my DISORDER since you are the one telling me I must give it completely up?
I So want to hear answers to your question also. My primary said, "no alcohol". My neurologist has never mentioned it. I only have a drink at home, and before dinner at a restaurant. Never if I am going to drive. It is bad enough that I weave when I walk, I don't need to add to this sight. Does alcohol make the progression of symptoms any worse? Seems right that I curtail drinking to just one, but do I have to give up everything?
My neurologist has told me the cerebellum (of the brain) is atrophying (progressing) if one has certain ataxia's (some ataxia's are not progressive, mine is). Alcohol effects the cerebellum, therefore it's not recommended one drink alcohol. I will have a glass of wine socially, very infrequently. Due to my balance being compromised and slurring of speech, I don't like the way I feel (worse) even with one glass of wine. Alcohol really effects me..., ;o)
rose said:Thanks, for your reply Rose. My Neurologist told me aswell, that my Cerebellum is atrophying aswell. I'm in no way trying to defend, alcohol & it's relation to the disorder I was diagnosed with(SAC5 Ataxia). Or how drinking any amount of alcohol, may or does make one feel worse with this disorder. I'm just trying to understand more(in the form, & basis of general knowledge), how does stopping any form of alcohol intake can & will effect my disorder. If 1). My condition is going to progressively degenerate with or without alcohol. & 2). If it's not known when, how long, or even give a time frame on just how slowly the degeneration maybe. How can one honestly say or be told, that alcohol consumption will make the condition worse or even over time. With, that been said. I have cut my alcohol consumption down to when I feel like taking a drink I will, & when I don't I won't(my, choice). & even when I decide to drink, I can tolerate 1-4 glasses of 5oz glasses of wine(I did find it best for me, to drink with in my limits when it comes to the conditions I'm faced with). :-)
My neurologist has told me the cerebellum (of the brain) is atrophying (progressing) if one has certain ataxia's (some ataxia's are not progressive, mine is). Alcohol effects the cerebellum, therefore it's not recommended one drink alcohol. I will have a glass of wine socially, very infrequently. Due to my balance being compromised and slurring of speech, I don't like the way I feel (worse) even with one glass of wine. Alcohol really effects me..., ;o)
I am not a drinker at all, but during a family gathering I had a wine cooler and it may me feel even more unbalanced, more nervous and I felt very uncomfortable and felt I was going to fall so I do not drink any more wine coolers.
My mom was a chronic alcholic. She was diagnosed with Ataxia and in those days we were told it was from her alcholism. Alcohol destroys brain cells. I was shocked to learn when I turned 50 that her Ataxia was a hereditary condition. I had quit drinking entirely 15 years earlier. It was a cruel irony to find myself staggering around and feeling drunk at this point in my life. Ataxia is said to be progressive but the rate of progression is not at all predictable. My first neurologist confirmed this. Alcohol does affect the nervous system and brain negatively. If you don’t know how fast this will progress why risk adding toxic substances to your diet (alcohol is only one substance that may affect your nervous system)? Doctors are really just beginning to learn about this condition. Don’t expect them to have definitive answers. They don’t have them. For the most part we are all guinea pigs in their great reseatch project. They are mostly interested in observing your progression. My mon was in a wheelchair within 5 years of diagnosis. I have had this for 13 years (diagnosed for 11) and my balance and other symptoms are actually improving! My brother too is now showing symptoms. I no longer use walking poles and am now nearly able to put one foot in front of the other to walk that elusive straight line. I catch myself now often before taking a fall. I don’t know exactly what is helping my improvement but I have some theories. If giving up alcohol is a tough sacrifice you may want to look closely at why. If the doc told you not to eat brocolli would it feel the same? It may be that alcohol has a high priority in your life that is greater than others place it in their lives. Regular drinking can cause depression. You are already at risk for depression simply because of this diagnosis. Why risk depression? My suggestion is to try to do everything you can to improve your overall health anf forget about this notion that its progressive. I don’t know that this is true in every case. Give up what you have to gradually over time and plan to enjoy your life every day starting today. Substitute things you love for those things you decide to give up. I give myself many things now that I would not have before diagnosis and am giving up many foods and substances in return. I hate exercise but love to swim in the ocean in Hawaii so I go there several times a year with the help of kind friends. I’m not rich, but live on a small fixed income. It can be done if you are focused and determined. I try to enjoy my life and stay active -out of the chair. Its working. My friends are remarking how much better I am.
Hi Steven,
I think you have answered your own question in your profile. When asked what seems to aggravate your condition, you answered " alcohol consumption to a certain point". So alcohol does affect you.
Alcohol has been scientifically proven to damage brain’s, particularly cerebellum’s, cells. So, it might accelerate the degeneration of cells, precipitating the ataxia progression.
I used to drink a little glass of wine with supper before ataxia, but my tolerance for alcohol has always been very low and it had to be a very small glass 
Now, I am literally scared of feeling any dizzier than I already am, so I do not drink at all. Because so little is known about ataxia, I doubt that you will find a doctor willing to give you a definite answer about anything concerning it, especially since everybody’s ataxia is different…
Why not put all the chances on your side and keep the wine for special occasion?
Take care and best wishes to you. Life with ataxia is one day at a time. No looking back anymore at what you could do. Don’t look ahead either, do what you can at the present moment and enjoying it. Ataxia is a lesson in acceptance… That’s my philosophy.
I have not yet been diagnosed with SCA, but my mother and uncle have it (type unknown). I have noticed what I believe to be very early signs of it in myself. I have not completely "given up" alcohol, the way alcoholics must, but in a practical sense I have mostly given up. I have a sip from my husband's beer if he's having a glass. And I will have a glass of something at Christmas or on birthdays. I originally made the decision not to drink in order to reduce the risk of breast cancer. I became firmer in that decision after noticing the SCA symptoms, in the (common, but, as I've just this morning discovered, mistaken) belief that any alcohol consumption kills brain cells. However, I'm happy with that decision for me.
There are two things I find fascinating in these threads about alcohol.
The first is just how resistant people are to giving up regular drinking. It's clear the people resisting are not alcholics, so there's no addiction involved in the way there would if doctors had told them to quit smoking, for example. So I wonder if drinking is for some people symbolic of other things they are afraid of losing to SCA - social engagement, perhaps? Living the same life is spite of SCA? I'm not sure.
The second is people's frustration at the medical profession's inability to provide concrete answers. Again, I can completely understand this frustration. I have felt some of it myself. I have an appointment with a neurologist some time in the next four months, and I know s/he will not be able to give me a concrete answer as to whether I am developing SCA, despite the fact I really really want to know.
However, as a (non-medically trained) epidemiologist, I work among medical professionals and biomedical scientists. We will rarely give concrete answers to anything:
First, scientists, if they are any good, rarely think they know anything for certain. All we can do is give advice based on our best guess according to current research. If we think we know something, we stop questioning. But what we think we know may be wrong, and if we stop questioning, we may miss poor health outcomes that could be preventable.
Second, human biology is hugely varied, so even when we know that something is really bad for people in many cases, we still can't say what any individual person's health outcome will be. So doctors can now entirely confidently say "smoking is really bad for you. If you value your health, don't smoke." They give that advice because smoking is an avoidable and dangerous health risk. Nevertheless, the doctor can't be certain that if someone does smoke, they won't be one of those people who live to old age in spite of their smoking.
Getting to the point where doctors can say "If you value your health, don't smoke" took a really long time. Partly that was because the tobacco industry put up such a fight to protect their profits (and I wouldn't be surprised if the alcohol industry put up a similar fight against the rising evidence of alcohol-related harm.) but in general, doing the sorts of studies that give results strong enough for doctors to say things with confidence, takes a long time. That's particularly true with conditions like SCA, which are very rare, with huge variety within the condition, and as yet poorly understood causes, contributors, progressions and outcomes.
Because SCA is as yet so unexplored, doctors can only make educated guesses. We are pretty confident (see how I'm avoiding saying "we know"?) that in an average brain, only severe alcohol abuse kills brain cells. We're also pretty confident that in most people, alcohol intoxication affects the cerebellum, so for someone who has SCA symptoms, intoxication with alcohol will likely make their symptoms worse. But I don't think we know whether an SCA brain reacts differently to alcohol than non-SCA brains.
We can't say with anything like certainty "drinking won't make your SCA progress faster". To do that we'd have to find a whole lot of people with SCA - preferably about 1000 of one SCA type - in the early stages of their disease, and interview them about their drinking habits. We'd have to observe them over the period of their lives, monitor the condition of the cerebellum with brain scans, and see their SCA outcomes, and any changes in their drinking behaviour as their condition progressed. We'd then have to see whether there was any statistically significant difference in SCA progression by drinking behaviour. We'd also have to make sure that there wasn't some other factor that made the difference, e.g. if the sorts of people who stopped drinking were also more likely to take regular exercise or change their diet, we'd need to make sure it wasn't that exercise or diet that made the difference rather than the drinking behaviour. We'd need to do that for ideally 30 years, but certainly at least 10, depending on the type of SCA. And at the end of that, we'd still only be able to say whether or not drinking alcohol was "associated with" faster degeneration of the cerebellum, in that one type of SCA. Note that "associated with" doesn't mean "causes". And we wouldn't be able to say anything about the other SCA types and alcohol.
Another option would be to advise half of the 1000 people to stop drinking, but not the other half. We'd probably need to provide some counselling, training, or other intervention to help them stop drinking. We'd probably need to advise the other half to stop doing something else, to avoid the placebo effect. We'd then observe all the SCA participants in the same way, for about the same period of time, and see if those who were advised against drinking had, on average, lesser disease progression than those who didn't. And at the end of that, the best we'd be able to say would be whether or not stopping drinking was likely to slow down the progression of the disease.
The point of this very long post is to show that there are very few concrete answers in medicine. Doctors give the best advice they can based on their experience, the currency of their reading, and their specialty (if you've got a heart problem and you ask a GP, a cardiologist and a heart surgeon what you should do about it, you'll get 3 different answers: the GP will recommend exercise and diet change, the cardiologist will recommend aspirin or anti-statins, and the surgeon will recommend surgery).
Taking all that into account, my observations are these:
1. Drinking beyond moderation is bad for you regardless of whether or not you have SCA, so don't drink beyond moderation (what moderation is depends on your age, weight and sex, so I can't say how many drinks that is).
2. Drinking in moderation can increase your risk of other conditions, and reduce the risk of others, so whether drinking in moderation is a good health choice depends on your family history and personal health risks other than SCA.
3. Drinking in moderation might make the symptoms of your SCA worse while the alcohol is in your bloodstream, so if your symptoms are already a health risk (falling, choking) then even drinking in moderation is probably a bad idea.
4. You'll likely figure out for yourself whether that's a problem for you, as other posters here have. But I think it's worth thinking about what alcohol consumption is best for you, taking into account your whole life and wellbeing, not just the SCA.
Thanks for the helpful info., that was a most helpful reply. Thanks, again.
Lute said:
I have not yet been diagnosed with SCA, but my mother and uncle have it (type unknown). I have noticed what I believe to be very early signs of it in myself. I have not completely "given up" alcohol, the way alcoholics must, but in a practical sense I have mostly given up. I have a sip from my husband's beer if he's having a glass. And I will have a glass of something at Christmas or on birthdays. I originally made the decision not to drink in order to reduce the risk of breast cancer. I became firmer in that decision after noticing the SCA symptoms, in the (common, but, as I've just this morning discovered, mistaken) belief that any alcohol consumption kills brain cells. However, I'm happy with that decision for me.
There are two things I find fascinating in these threads about alcohol.
The first is just how resistant people are to giving up regular drinking. It's clear the people resisting are not alcholics, so there's no addiction involved in the way there would if doctors had told them to quit smoking, for example. So I wonder if drinking is for some people symbolic of other things they are afraid of losing to SCA - social engagement, perhaps? Living the same life is spite of SCA? I'm not sure.
The second is people's frustration at the medical profession's inability to provide concrete answers. Again, I can completely understand this frustration. I have felt some of it myself. I have an appointment with a neurologist some time in the next four months, and I know s/he will not be able to give me a concrete answer as to whether I am developing SCA, despite the fact I really really want to know.
However, as a (non-medically trained) epidemiologist, I work among medical professionals and biomedical scientists. We will rarely give concrete answers to anything:
First, scientists, if they are any good, rarely think they know anything for certain. All we can do is give advice based on our best guess according to current research. If we think we know something, we stop questioning. But what we think we know may be wrong, and if we stop questioning, we may miss poor health outcomes that could be preventable.
Second, human biology is hugely varied, so even when we know that something is really bad for people in many cases, we still can't say what any individual person's health outcome will be. So doctors can now entirely confidently say "smoking is really bad for you. If you value your health, don't smoke." They give that advice because smoking is an avoidable and dangerous health risk. Nevertheless, the doctor can't be certain that if someone does smoke, they won't be one of those people who live to old age in spite of their smoking.
Getting to the point where doctors can say "If you value your health, don't smoke" took a really long time. Partly that was because the tobacco industry put up such a fight to protect their profits (and I wouldn't be surprised if the alcohol industry put up a similar fight against the rising evidence of alcohol-related harm.) but in general, doing the sorts of studies that give results strong enough for doctors to say things with confidence, takes a long time. That's particularly true with conditions like SCA, which are very rare, with huge variety within the condition, and as yet poorly understood causes, contributors, progressions and outcomes.
Because SCA is as yet so unexplored, doctors can only make educated guesses. We are pretty confident (see how I'm avoiding saying "we know"?) that in an average brain, only severe alcohol abuse kills brain cells. We're also pretty confident that in most people, alcohol intoxication affects the cerebellum, so for someone who has SCA symptoms, intoxication with alcohol will likely make their symptoms worse. But I don't think we know whether an SCA brain reacts differently to alcohol than non-SCA brains.
We can't say with anything like certainty "drinking won't make your SCA progress faster". To do that we'd have to find a whole lot of people with SCA - preferably about 1000 of one SCA type - in the early stages of their disease, and interview them about their drinking habits. We'd have to observe them over the period of their lives, monitor the condition of the cerebellum with brain scans, and see their SCA outcomes, and any changes in their drinking behaviour as their condition progressed. We'd then have to see whether there was any statistically significant difference in SCA progression by drinking behaviour. We'd also have to make sure that there wasn't some other factor that made the difference, e.g. if the sorts of people who stopped drinking were also more likely to take regular exercise or change their diet, we'd need to make sure it wasn't that exercise or diet that made the difference rather than the drinking behaviour. We'd need to do that for ideally 30 years, but certainly at least 10, depending on the type of SCA. And at the end of that, we'd still only be able to say whether or not drinking alcohol was "associated with" faster degeneration of the cerebellum, in that one type of SCA. Note that "associated with" doesn't mean "causes". And we wouldn't be able to say anything about the other SCA types and alcohol.
Another option would be to advise half of the 1000 people to stop drinking, but not the other half. We'd probably need to provide some counselling, training, or other intervention to help them stop drinking. We'd probably need to advise the other half to stop doing something else, to avoid the placebo effect. We'd then observe all the SCA participants in the same way, for about the same period of time, and see if those who were advised against drinking had, on average, lesser disease progression than those who didn't. And at the end of that, the best we'd be able to say would be whether or not stopping drinking was likely to slow down the progression of the disease.
The point of this very long post is to show that there are very few concrete answers in medicine. Doctors give the best advice they can based on their experience, the currency of their reading, and their specialty (if you've got a heart problem and you ask a GP, a cardiologist and a heart surgeon what you should do about it, you'll get 3 different answers: the GP will recommend exercise and diet change, the cardiologist will recommend aspirin or anti-statins, and the surgeon will recommend surgery).
Taking all that into account, my observations are these:
1. Drinking beyond moderation is bad for you regardless of whether or not you have SCA, so don't drink beyond moderation (what moderation is depends on your age, weight and sex, so I can't say how many drinks that is).
2. Drinking in moderation can increase your risk of other conditions, and reduce the risk of others, so whether drinking in moderation is a good health choice depends on your family history and personal health risks other than SCA.
3. Drinking in moderation might make the symptoms of your SCA worse while the alcohol is in your bloodstream, so if your symptoms are already a health risk (falling, choking) then even drinking in moderation is probably a bad idea.
4. You'll likely figure out for yourself whether that's a problem for you, as other posters here have. But I think it's worth thinking about what alcohol consumption is best for you, taking into account your whole life and wellbeing, not just the SCA.
Great post Lute! Thanks !