I am interested to know how others who suffer this condition deal with alcohol in terms of a social pint of beer or a glass of wine with food. I haven’t had any alcohol since I was diagnosed with SCA around three years ago. The basis of my decision was an assumption that any alcoholic drink could worsen my condition either by encouraging the atrophy of the affected area in my brain and or making me even more unsteady. In my previous life however I did so much enjoy a glass of wine with food and the occasional pint with friends or my sons.
I wondered if my response to the diagnosis has been too drastic in this area. How do others in a similar situation to me approach this issue?
I do have an occaisonal glass of wine with my dinner as well as beer feeling as "what the hell; the worst has already happened". I don't do this if I know that I have to walk alot. If anything, it makes me sleepy. It's probably not the greatest thing in the world but it does have a calming effect, and neither neuro said dont touch the stuff. N
OMG I wish I didn't like the taste so much. I have a cocktail every night at home. Yes I sager all over. But nobody can see me. As far as going out. Since I dont use a walker I make sure someone is with me. Yes I walk funny. But I have been seeing a guy that takes me out pretty much. 2 weeks ago I had a very embarrassing night. But He got me threw it. I do have my cocktails even thou I shouldn't. Now last month I used my daughters stroller to walk with when I had a drink. Worked real good. I only had one person ask. Why I was pushing an empty stroller. lol Dont know what to say. But Im the same way!
Lori
I have shifted my thoughts in consuming whatever kind of alcohol from what I consider my “pre” way of being.
In my “before” life, a drink would pretty much do the trick in numbing any kind of feeling that I had…which at where I was in my life, was pretty desirable. I was no stranger to a dirty vodka martini straight up.
Now, I enjoy and desire to feel both the good and the bad - no matter how bad; knock on wood - so I don’t really enjoy alcohol like I did before.
I’ve experienced many people going from one or two drinks to like ten; and with that, personality changes. I’m currently questioning how much of my limited energy I’m willingly choosing to spend on the alcohol issue and how it affects -not me necessarily but - someone who I might be dependent upon - b/c it has taken up far too much of my energy in the past. I’m finally to a place where I can laugh at certain alcohol-related things, but it’s been a journey in itself in getting to that point.
I’m not a tea-totaler, by any means; I just give more thought as to 1) what goes in my body; and 2) what goes into others’ bodies who I choose to surround myself.
My feelings of alcohol did start with how it affected my cerebellum, my balance, my over-all functioning, etc., and my thoughts and feelings have evolved into more of a thing of trust and much more than the surface stuff.
This is probably TMI, but the issue of alcohol ignites a fire in my belly.
I have occasional wine or beer which lifts the spirits. I cant tell the difference with my walking except maybe I have more confidence so have to be careful.
I don't know whether I have SCA or not. I have stopped drinking alcohol because it increases the risk of breast cancer. I have a breast fibroadenoma, and since having one of those means my risk of breast cancer is increased already, I figured one increased risk was enough.
I'm not a complete purist though. I will have a sip of my husband's beer occasionally. And on special occasions I might have a half glass of something. But not more than that. The increasing suspicion that I may have inherited SCA has made me firmer in my commitment to not drink more than the limits I've now set myself. I figure if my brain cells are quietly dying on their own, they don't need any help.
Fortunately I've never been a heavy drinker, so it's no great sacrifice or lifestyle change.
Because the same are of the brain is affected by alcohol as is affected by ataxia (in fact drunkenness is a way of chemically inducing ataxia) I can't imagine a logical reason for this. There are other non alcoholic drinks that can be imbibed in socially . However we all need to make our own decisions.
Tumbles
There is a difference between drunkenness and having a drink.
This question haunts me. It's a guilty pleasure. My neurologist has only asked how much I drink. My primary doctor said, "No alcohol". But I like to have one drink, before dinner. I'm at home or in a restaurant and not walking about. I drink wine infrequently and beer hardly at all. My unsteadiness is probably somewhat worse, but I try to be careful. The thing is, I am 75. How much longer do I have.? My cerebellum has already atrophied (saw it on MRI).Was it alcohol that caused it, or something else? There is alcoholism in the family. My father was alcoholic and my brother's son has the problem. So the haunting question is: did I inherit an alcohol gene which caused my ataxia?. Or, was there some other reason for my ataxia.? I will cut down though. I actrually feel better in terms of energy when I am not having any alcohol.
My dad and uncle had ataxia. They did not drink alcohol. I really started the cocktail thing after I got ataxia. I wont say alcohol causes ataxia. It just makes it worse at the moment you are doing it.
I am an ex alcoholic so don't drink anything noow but when I went to the Dr today about intention tremors he told me alcohol helps with this aspect.When I was drinking 10 years ago but not heavily I had the quivers caused by alcohol.You can't win.
I personally cannot drink but I think everybody's mind and body is different.,
It is not the drink that was to blame ;it was a state of mind.ie depression and drink don't go well together and I don't think Cerebelllar Ataxia and alcohol go well together either for the same reason as tumbles83 suggested.
I am not very strict though and even though I don't drink I still have a bottle or so in the house for visitors.
I have 2 drinks socially, i do drink them very slow . Yes it does effect my gait, my friends know this, I do drink water in a wine glass as well.... The water really got my through my 30 year reunion and i had the drinks at midnite.Neta is right the worse has already happened. but it is to each his own.
I don't think it's been drastic at all! I stopped alcohol also and haven't had one sip since 2006 when I was diagnose with ataxia.
I also read and confirmed it with my Dr. (Nero) that having any helped the degeneration of the cerebellum. So I thought so why would I want to hurry it along then? I've been working on slowing it down if not stopping it (which by the way has helped me I think in stopping the progression). I weighed what it was doing for me, yeah I liked the taste but it was more worth it for me to let it go because of the balancing effects I got from having some of it. Not worth it to me! So then I learned about all refined sugars. That is what alcohol is anyway refined sugar. So it made since if I let go of alcohol I should let go of all refined sugar so it would have the same effect on my brain. I think the medical community is finally getting that too.
Good one! Because of 3 neurosurgeries and radiation, my life has changed so much, even before ataxia was dx’d, at age 57. To Lori, please get a walker and always a good cane- when that extra arm is available. Period. I was a believer after three hideous falls, including a concussion. I was mad and discouraged, but blamed myself for not getting a walker. I am on my second one, that is so cool, it’s also a wheelchair. It’s not that bad. Now 61, I even enjoy comparing walkers and canes with 80-90 yr olds in the mall or restaurant. Re. Alcohol…I want to say pulleeze, haven’t we lost enough? It is a good question, though; I guess depends on your age. I try so hard not to be defined by my health issues. I drink champagne only, for low alcohol content and bubbles help my nausea. Whatever! The amt. depends- but definitely not every day nor more than a glass, unless I am out to dinner w/ my husb. Or GFs. Even then, I don’t overdo. but, I honestly to this question, I just feel this bad luck in our health will do what it wants. Maybe that is fatalistic to some, but I just want to be myself. Not long ago, I was a runner, tennis-player and golfer. Sometimes, I just cry. I can’t believe it. Then, I get myself out of it. All in all…good question; listen to your docs. Be careful, love yourself- inc that “interesting” body of yours. Laugh- not by alcohol or artificial means; but by being around loving/caring people- esp. kids- who make you laugh, and for whom you return the favor! Be grateful for the blessings of BFFs, inc Spousers and Fam, as applicable. But, okay, yes! I drink when the spirit moves me! Umiak and Colin, thanks for the probing questions. Great site. Thanks, everyone.
I find that alcohol just magnifies my symptoms, the speech becomes very slurred and the walking balance also goes down hill. I enjoy a good red wine !I do not deny myself, still need pleasures in life, just don't hurt yourself when a bit tipsy
To each his/her own! I find if I have one glass of wine, my ataxia symptoms become much worse! I slur my speech even more than usual, etc. I don't appreciate this feeling, therefore I chose not to drink, as a rule. Also, I've never enjoyed the taste of alcohol, therefore I don't feel like I'm missing out. ;o)
hi i used to live on red wine but have changed to white wine totally diluted with soda water or at home where its ok to look drunk i mix white wine with lots of ice. I have already had to give up lots. So drink another way
Fahareen
On a personal level I have had Ataxia for 41 years now so through out my 20's and 30's I drank alot of alcohol. Now in my 40's I have a glass or two, socially although I have noticed I don't sleep as well. Now I have a diagnosis of arthritis I see this as a bigger disability now than the Ataxia I grew up with.
On a professional level I have seen/known too many people die from coming off alcohol i.e. choking on own vomit or the risks associated with alcohol i.e. being run over however I have never heard of anybody dying from coming down from Heroin. (Just makes you think, doesn't it) Also alcohol interferes with the important REM sleep we need to 'refrag' our brains converting our short term memory into long term 'memories' which also helps our psychology well-being. Those deprived of REM sleep, have shown behavioral problems, and permanent neurological problems in more rare cases.
Given this I still enjoy a social drink with friends having about 3 - 4 glasses or wine a week, its getting the balance right between enjoyment and looking after yourself long term.
I started cutting down on alcohol consumption about ten years ago and, by the time I was told of my ataxia about four and a half years ago, was at the stage that I would maybe have two cans of weak lager over a weekend once or twice a month generally or maybe three or four pints if 'out on the town' - occasionally.
I had started to cut out alcohol as I came to realize (with a gentle nudge from my sister) that I was drinking rather a lot. I would drink two to four pints with 'the lads' just about every week night, have wine with almost every sit down meal and think nothing of spending almost all of almost ever weekend drinking to excess. I never wore the amount of booze I could consume as a badge or thought proud of myself for boozing. However I'm not ashamed either! That is just how I was way back then.
About eighteen months ago I cut out alcohol almost entirely. I occasionally drink 'alcohol free' beer / lager when I'm out socializing (which is not often) or very occasionally at home. Such drinks contain no more than 0.05% by volume of alcohol. I have no problem drinking lemonade or fruit juice while out for the night with friends though and my friends respect my choice to not drink booze. At home if I want a 'drink' with a meal, I just get in some grape or fruit drinks that are not regular fruit drinks but are more like wine or perry that has not been fermented! There are many brands available and many are sold in bottles that make them look like wine.
The reason for my decision to cut out booze (almost) entirely was made after talking with my GP and changing my medication. The GP advised me not to consume alcohol not because that's what doctors do! Rather it was because one of the medicines I take is a muscle relaxant that I take mainly to aid with sleep. Basically, while taking the medication in question, I can either drink alcohol or wake up in the morning! I choose the latter. I was already cutting way back on my alcohol intake - so stopping altogether was no big deal.
As for the questions relating to alcohol consumption and general health or ataxia, I can say that since I cut out alcohol I have felt generally better for it health ways. I do wonder if something else in the alcoholic drink was making me feel bad though! I base this on two things. First red wine was always a big 'no, no' for me as it made me feel very ill (even in small quantities) and seemed to be a migraine trigger. Secondly, I sometimes feel rather ill after drinking non alcoholic beer or lager - particularly one or two brands that taste strongly of wheat. One brand in particular that I have drank both alcohol and alcohol free versions of is a German brand that I very much enjoy drinking but have stopped buying as even the non alcohol version now makes me very ill and has a very detrimental impact that makes my ataxia seem very much more pronounced.
I suppose we are all different! I would say drink alcohol only in moderation and only if it has no bad affects (apart from the obvious) on you. I would also say that the best advice for you on this matter will likely come from your GP - go have a chat with him / her (that's what they are there for!).
Best regards,
Michael.
I thank my son, who lives with me , for noticing that my gait was more staggering when I had two drinks before dinner So, down to one immediately, and I use lots of ice! I realize it would be better to stop completely, but I find that hard unless I'm not feeling well. I wish I had more will power, but I suppose it is a way to gloss over my troubles, and enjoy something that so many others enjoy without a problem.