My Ataxia was diagnosed as resulting from my ear... - Ataxia UK

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My Ataxia was diagnosed as resulting from my early alcohol abuse. Is this fairly rare?

jneilw51 profile image
39 Replies

My Ataxia was diagnosed as resulting from my early alcohol abuse. Is this fairly rare?

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jneilw51
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39 Replies
tommi47 profile image
tommi47

Hi, I find it interesting that you have had no replies,alcohol dependency is an Illness that can affect anyone.

Mine too is likely to have been through alcohol and I believe there is always an underlying reason some of us turn to alcohol however once a seaside donkey always a seaside donkey.

So I make this my first post on here,alcohol related ataxia was (or maybe still is) believed to affect one third of alcoholics I have taken recovery groups and spoken to a alcohol nurse at my local hospital and a lot of people involved with alcohol issues and know of only one other out of a lot of people that have acquired ataxia.

The thing is I only have an opinion and I think it is relatively quite rare.

Keep positive !!!.

jneilw51 profile image
jneilw51 in reply to tommi47

Thanks, Tommi. I have been in AA groups, and Dual Diagnosis groups with serious alcoholics, and never met one who is suffering from Ataxia. I also did not post on this site for quite a while because it looked, to me, like everyone here had forms of Ataxia not related to alcohol. So, I felt that it was possible that what they talked about did not pertain to my situation, and that my comments might have nothing to do with their situation, other than maybe some of the symptoms being similar. I think that many things about alcohol-related Ataxia just could be very different from those pertaining to other forms of Ataxia.

SussexDodo profile image
SussexDodo

Hiya :-)

13 years ago when my late-onset Cerebellar Ataxia was diagnosed I was told that too. I was not - and never had been - a heavy drinker so I challenged it and asked for more tests. Turned out the first diagnosis was wrong and my Ataxia was inherited from my Dad!

I know abuse of alcohol is a contributory factor but from the little I know, I think it's quite rare. However, when you 'Google' the causes of Ataxia; alcohol abuse is in the list of causes, so maybe it's more common than the number of replies to your post would indicate.

Hope you stay well and - as tommi47 has already said - keep positive!

jneilw51 profile image
jneilw51 in reply to SussexDodo

Thanks for your reply. What I am wondering is whether the onset, symptoms and prognosis of alcohol-induced Ataxia are different from other forms of Ataxia. Do you have any idea?

HarryB profile image
HarryBAdministrator in reply to jneilw51

Hi

The symptoms of alcohol-induced ataxia do not differ from other causes of ataxia, suffice to say those in alcohol-induced ataxia will not progress as long as total alcohol abstinence is maintained.

Alcohol-induced ataxia can be thought of as a head or brain injury where alcohol has caused damage to the brain, the cerebellum in the instance of ataxia. As long as those affected stop drinking alcohol, the damage to the cerebellum caused by alcohol will not worsen any further over time, so the symptoms of ataxia will not get any worse. This differs from ataxia caused by genetic/hereditary factors where the damage to the cerebellum worsens over time, hence the symptoms progress.

Best wishes

Harriet

jneilw51 profile image
jneilw51 in reply to HarryB

Thank you, Harriet, for that information. I still remain a little confused due to how my Ataxia symptoms have progressed. I was first diagnosed as having Ataxia by a Neurologist about 12 years ago (I was 52 years old). It was concluded to be alcohol-induced after I was given a DNA test. At that time, I was experiencing very mild intermittent periods of dizziness. My Neurologist explained to me that the brain's balance center does, in many people, shrink with age. He explained that some of those people may experience some dizziness. Since an MRI had shown that my balance center did shrink very slightly, he expressed the opinion that a part of my dizziness symptoms could have been brought-on by that shrinking. He added that, because of my earlier alcohol abuse, part, or all, of my Ataxia symptoms could have been a result of the alcohol. He warned me that additional alcohol use probably would make my symptoms worse. So, I stopped drinking. But, over the past 12 years, my balance problems gradually increased, and are still increasing. My assumption was that the brain damage originally caused by alcohol, was being made more and more noticeable by the shrinkage occurring in the brain. But, if you are right that my symptoms should have stopped getting any worse as soon as I stopped drinking. I would guess that this means that some other Neurological problems could be producing my increasing dizziness and vertigo. So, I plan to speak with my doctor about possibly being referred to another Neurologist. I would guess that this would also be what you would recommend. So, thanks again for your information. You may have helped me to identify the possible presence of a physical problem which I was unaware of. I hope that you don't charge too much for your help (Just kidding).

celisandra profile image
celisandra

Hi, it might be worth making a list of questions and asking to see your doctor again. It's unsettling to have unanswered questions about your condition.

I have no diagnoses, except my symptoms are ataxia- so I can guess how you feel.

Also ask for as much support as possible- physiotherapy, dietician, counseling, anything else that might help.

Something you could ask the doctor is - Will progression stop as long as you don't consume alcohol?

How can you encourage improvement through what is known as brain/ neuro plasticity?

If the doctor can't give you answers, then ask him/her to find out and get back to you, or to suggest someone else who can help.

I hope you get the support you need

Celisandra

jneilw51 profile image
jneilw51 in reply to celisandra

Thank you, Celisandra, for your suggestions and encouragement. My Neurologist told me that some shrinkage of the balance center of the brain is normal with aging. But, the amount of shrinkage that happens, as well as the detectable physical effects of any shrinkage that does occur, vary from person to person. I was told that the best promise for treatment of Ataxia was in using stem cells to grow new brain tissue, but science is not there yet. My search on Google also did not yield a lot of information which has been shown to be true in all, or even in most, cases of Ataxia. I actually am hoping to learn much more about Ataxia just by reading what is available on this website.

ninotchka profile image
ninotchka in reply to jneilw51

I agree with you! I believe that embryonic brain cells are the only answer to regrowing the missing cerebellum. But they are years way from this. I keep researching this constantly. Using one's own stem cells will not work.

LBenyon profile image
LBenyon

I have been diagnose with SCA due to my achcol abuse when i was younger,as far as I know this is very rare!! Actually this is a pleasant surprise to me (not for you obiously)

as I thought I was the only one!! Lorrraine

jneilw51 profile image
jneilw51 in reply to LBenyon

Thanks for your reply, Lorraine. You mentioned that you were diagnosed with SCA, but have you noticed any symptoms. If you have, how long ago did they start, and have they become any worse? Did your doctor give you a long-term prognosis, or recommend any type of treatment? I ask these questions because I would really like to see how the development, and prognosis, of my Ataxia compares with those of other persons with SCA. It would be nice if I could, even slightly, see some kind of common pattern which might let me make some predictions about the possible future course of my Ataxia. I do, though, realize that such a possibility is extremely unlikely. I hope that your SCA has not caused you too many problems, and that it never will.

LBenyon profile image
LBenyon

I did have re-occurring slurred speech but thought by my friends and family that it was the achcol,but as soon as I saw a nueroglist who then sent me to see another who specialise in Ataxia I was diagnosed with SCA through the way I walked and the combined slurred speech,i now many years later have trouble with my balance as well,i have been told I will get worst with these sytoms in the many years to come,it does not help as I suffer from Rhuematiod Arhtrist as well.I have the problem now the RA consultant blames certain illness on the Ataxia and visa versa and im the piggy in the middle!!!

jneilw51 profile image
jneilw51 in reply to LBenyon

Thanks Lorraine for telling me so much. It does help me to see how I fit-in with other people having similar types of Ataxia.

I am now 64, and I noticed the first signs of dizziness 14 years ago. I went to a Neurologist for sleep apnea (Which he found that I do have), and he diagnosed my alcohol-related Ataxia 12 years ago. About 10 years ago, I had a severe knee injury, which led to my now having severe RA in my right knee. That has contributed to my having severe balance problems. My dizziness lack of balance has gradually increased to where I now use a walker, but am still not always feeling safe from losing my balance. I have not yet had speech problems, but my Ataxia has always been much worse if I did not get enough sleep. But, however much sleep that I get, I seem to still feel extremely sleepy for much of the day. Like you, I am concerned about how much worse my symptoms could eventually get. Finally, I have not been able to find-out if Ataxia can ever be fatal. I'm not sure if I really so much want to know about that, but my guess would be that it is possible, but very very rare for that to happen. There probably would have to be other illnesses, or injuries (Like maybe a concussion) to make that happen.

LBenyon profile image
LBenyon in reply to jneilw51

I am now 61yrs young and depend already on the of a walking aid,(3 wheel walker in the house) plus several walking sticks and a four wheeled walker when out,i try not to sleep in the day so I can sleep at night,this does not always work as sometimes cannot sleep. I find that stress is a contributory factor in my Ataxia so I try and I do mean try to keep my stress levels low!!!!! I still have the occasional achcol drink but not like I did years ago!!! Although I have heard or read ,I cant be sure,you can just be very unwell with this desease!! I also have to admit I did ignore the desease for some years as ingnorence was bliss to me? so therefore did not read up on Ataxia or attend any meetings,,i do now perhaps it is an age thing,im not sure! I recently fell over after losing my balance and received a badly bruised left knee and a very painful torn ligament, oh well another injection in the knee to kill the pain has worked,this has made me walk even slower as don't want to fall over outside again,haha,its very nice to actually talk about this with someone,so I hope this is not too much for you,keep well and safe Lorraine

jneilw51 profile image
jneilw51 in reply to LBenyon

Ever since my Neurologist told me that any alcohol could make my symptoms worse, I have not been a drinker. A big part of what scares me about getting worse is that I would be more likely to fall. My last fall was about 8 years ago. I had a hose on my garage floor, and I thought that I could walk right over it with no problems. Well, that little bit of unevenness that the hose presented under my feet, was enough for me to lose my balance. I fell to my right on the concrete floor, causing me to break my right leg just under my hip. They put a metal rod in my leg, and up into my hip. That put me in a wheel chair for a few months, and it still hurts where they put the metal rod in. The doctor told me that, at my age(I just turned 64), my bones had become brittle, so any fall, especially on concrete, was likely to cause a break somewhere. So, I have become overly careful about protecting myself from ever falling again. I hope that your injuries heal quickly. Stress does not seem to affect my Ataxia. I think that it draws my attention away from my Ataxia, and onto whatever I am stressed about. I do get headaches related to the Ataxia, and stress does make them worse. The way that I try to look at things is that, no matter how bad that things seem to get with us, it is not hard to find lots of people who have things way worse than us. Just look at Africans with Ebola, refugees from Syria who lost everything and are living under ISIS, or even young soldiers coming home from Afghanistan with legs, or arms, missing. Hang on in there, Lorraine. We still have good things in our lives that we need to be grateful for. Take care, and no falling!!

HarryB profile image
HarryBAdministrator in reply to jneilw51

Hi

Ataxia is not life-threatening, rather life-limiting.

Best wishes

Harriet

LBenyon profile image
LBenyon

too late for no falling haha. I do have a drink now and again as my consultant nueroglist said the damage was already done and as long I don't drink to excess it would be ok? I have changed my drinking habit to accomdate this rule and have followed it for 1 year since my Ataixa was confirmed through achcol!! I did stop drinking so much years ago due to the tablets im on for my Rheumatiod Arthrist,I drunk as my ex-husband was a serious drinker and I think I drunk so I could ignore what was going on in my marriage, i am more in control since he went, which is good as my stress levels has gone down and I am more forcased on the things going on around me!!! yes I do worry about my health getting worse but I will have to deal with that when the time comes?

jneilw51 profile image
jneilw51 in reply to LBenyon

I think that my Neurologist was thinking that, for me, there might not be any such thing as only having one drink or two. I don't think that a drink only occasionally would be harmful. When I was first diagnosed, and determined to stop drinking, my biggest hurdle was trying to ignore that a drink or two seemed to take-away my dizziness or, more likely, took away my ability to realize that I was dizzy. I'm not at all surprised that, being under a lot of stress in your life, and also being around a serious alcoholic, you began using alcohol as an escape. Most people would have done the same thing. Him going was probably a blessing for you. I agree that worrying about our future health doesn't help us, and probably can make things worse by increasing our stress, and maybe even making us depressed. I do hope, though, that you are very careful walking because, at our age, badly breaking a hip, or a leg, is very possible, and takes a long time to heal. Also, if you are not able to walk for quite a while, your balance could get worse, so you would have to walk a lot for a while in order to practice keeping your balance when you walk. I have really enjoyed corresponding with you. I hope that you won't hesitate to write anytime that you feel like you have something that you would like to say, or to talk about.

LBenyon profile image
LBenyon

I will keep up the correspondence with you if that's ok! I am finding that talking to someone diagnosed with the very same as amazing! I am finding out there are many SCAs, and like yourself the doctors have not come up with a number to go with my SCA,not for want of trying on their part, I have had many test to remendy this to no avail? But I am quite glad they haven't really as would look up the number to see what to expect!!!! I still see my ex as he does things for me which I cannot do,we have remained friends which has helped with my stress levels, although he his still drinking I am not living with it , and believe me that's good? I do not get dizzy when I have a drink but I now limit how much I drink. I am going to an Ataxia meeting on the 27th of this month in Guildford luckerly I get picked by a very nice person who uses this site, i am finding out I am fairly young compared with others who attend this meeting so I am hoping for to meet some younger members this time round!!!!! Keep well and stay safe Lorraine

jneilw51 profile image
jneilw51 in reply to LBenyon

It has also been helpful to me to have someone to talk to who knows something about the thing that I am dealing with because of my Ataxia.

I don't think that it would help a lot to be able to put a number with you SCA. It seems like, as much as you could find out by knowing exactly which SCA that you have, there seems to still be a lot of variation in symptoms, and prognosis, among different people with the same SCA. Also, there do not seem to be many treatments available for any type of SCA. In fact, thinking that you had maybe some bad form of SCA would, almost certainly, get your stress levels way up.

It's good that you are on good terms with your ex, but aren't living with him so long as he still drinks. I am pretty sure that I could not stop at just one drink, so I never plan to try. Years ago, I started drinking when I went to bars hoping to meet the right person to spend my life with. I was very shy, so the alcohol helped me to relax a little. Gradually, I needed more and more alcohol to do the same job. At one point, I was drinking 3/4 of a quart of whiskey a day.

I hope that you enjoy your meeting in Guilford, and that you meet some "young people" like us! Take care of yourself.

3chickens profile image
3chickens in reply to LBenyon

Hi Lorraine

I live near you (Aldershot) would be lovely to chat with someone local with he same issues as me. I haven't been given a cause for my CA but I do drink a lot (wine) and although my brain tells me it's not helping the condition I don't really want to stop.

LBenyon profile image
LBenyon in reply to 3chickens

I was told by my nuerlogist at Southampton to carry on drinking but in moderation? so I have changed my achol consumption to just 4 units at the weekend, this is when I treat myself,i do have the odd glass of wine but appentrenly this is a total no no--sorry. I have now heard we are not alone in our achol induced ataxia there are quite a few of us!!! I do attend a meeting of ataxins which is nice as you do learn a lot, in the end you infact know more than the nureogist,do you want the name and contact details of the Farnbourgh meeting? They meet in the Travelodge in Aldershot,i actually get picked up,which I'm very thankfull for! very sorry for the delay in my answering, i go

t a new computer and lost quite a lot of info, Lorraine

jneilw51 profile image
jneilw51 in reply to LBenyon

Hi, Lorraine. I'm glad that you found a convenient meeting if Ataxins, and that you have found them informative.

I saw my Neurologist about a month ago. He told me that everyone's balance center in the cerebellum does shrink with age. But, most people have extra space in their balance center,

so the shrinkage does not affect their balance for maybe several years. Excessive alcohol consumption, though, destroys part of the balance center, so there is no extra space to allow for brain shrinkage. So, when age starts shrinking the balance center, the deterioration of balance begins right away. He said that stopping the consumption of alcohol does not stop the natural shrinkage of the balance center, but continuing the consumption of alcohol will speed-up the rate at which our loss of balance may increase.

It doesn't seem to me that the amount of alcohol which you have limited yourself to should worsen your Ataxia very much. As I have told you, though, for me, a few drinks almost always leads to a few more drinks, so I don't dare allow myself that option.

I enjoy hearing from you. I hope that the holidays will be a happy time for you.

LBenyon profile image
LBenyon in reply to jneilw51

I also have just seen my neurologist with no further update for me, he told my condition has not worsen-which is good news-and he has recommended I see a consultant nearer to me so I don't travel so far to see him,i got a appointment through for next March haha. since speaking to you last ive had the 2nd batch of injections in my spine,to kill the pain,also had key hole surgery on my knee, it was found to be full of Arthtrist,not nice very painful now, ive got a metal plate in my big toe,which has dropped and now hurts like mad,my mum wont give me new body parts for xmas hehe You really wanted to know all this didn't you,i been saving it up haha.i have stopped going to the alnon meetings to churchie/and godly for me? I still go to the Ataxia meetings as I find out something new each time I go!! Hope all ok your end,speak soon Lorraine

jneilw51 profile image
jneilw51 in reply to LBenyon

I love hearing from you because you are so honest and open about yourself, and because you may , like me, have the type of Ataxia that is related to alcohol use. I was happy to hear that you had more injections in your spine to kill the pain. Anything that you can do to make living more enjoyable, you ought to do. I also have bad arthritis in my knee that I badly injured several years ago. If it swells-up, they give me prednosome pills, which reduce the irritation and swelling. I would hope that they can do something about the metal plate in your big toe so that it does not hurt so much. It sounds to me that you are able to pretty-much control how much you drink, so the Ataxia group is probably more helpful to you. I live in Indiana in the US, and we don't have very many Ataxia groups here. Both AA and Al-Anon do pretty strongly suggest that alcoholics, and their families, should ask for God's help in stopping alcohol from damaging their lives. They believe that very few, if any, true alcoholics would be able to stay away from alcohol without believing that God would be helping them. Their system seems to be working, and I'm all for giving alcoholics any tools that might help them to get alcohol permanently out of their lives. Well, try to stay healthy and happy, and keep in touch when you can.

LBenyon profile image
LBenyon in reply to jneilw51

I am so glad I can write to you,sometimes I feel so lonely,i am thinking of going to the docs for anti-depression pills,i have declined them before as I am getting worse with both deases,escepecially the RA with I'm being told now is acute-they didn't tell me that before and most of my health problems are to do with the acute Rhuematoid Arthtrist and not the Ataxia, it certainly does not help the Ataxia? there is one bit of good news after reading your note on alchol I have cut down even more? speak soon Lorraine

jneilw51 profile image
jneilw51 in reply to LBenyon

Lorraine, I would be happy to hear from you any time you feel like writing. I also get lonely at times. I think that it has to do with not feeling well. When you feel ill, you do not want to do as much, or be having people seeing you looking ill. It might not hurt to ask a doctor if anti-depression pills could help you. I'm all for doing what you can to see if you can help yourself to feel better. I'm not a doctor, but I think that an acute illness is one that is very serious, while a chronic illness is one which will be with you forever. My dad had very severe Rheumatoid Arthrits, so I realize what you are going through. His doctors gave him several different drugs, some of which helped him. But, they had to watch closely the side-effects, one main one being a reduced resistance to diseases. So, he had to be closely watched by doctors.

Good news about your alcohol. I really don't think that it would hurt you in very small amounts, but it certainly won't help you, so why take the chance? I hope that you will have a happy Thanksgiving. We just got our first measurable snowfall.

Jim

LBenyon profile image
LBenyon in reply to jneilw51

thanks for your answer I will email you as me very sad at the moment is that ok? I was told yesterday I had severe/acute RA so this very new information for me,and yes I will go to the doctors soon as things quiten down here,alot going on here at the moment family wise? so my ataxia plodding along with my serve RA how unlucky is that! I am now thinking is why my ex let me divorce so easily, did he see me getting worse and he drunk more,one does wonder as he drinks but not like he used to here! I could easily hit the bottle myself but I don't,i stick to my ration of aclchol if you like haha Speak soon Lorraine

jneilw51 profile image
jneilw51 in reply to LBenyon

Sure, your emails are always welcome. If you have a lot of pain with your RA, I would think that you probably knew that a doctor would call that severe. Anyway, severe does not mean untreatable, so the doctors still could find medicine that will help you. My dad's hands got so swollen from RA that they looked like balloons, and they found things that helped him. Most people, as they get older, develop diseases like cancer, diabetes, strokes, alzheimers, or heart disease. So, unfortunately, I don't think that you are alone, especially among older persons, in having two serious illnesses at once. It's hard, but I try to be thankful that things are not worse for me. As far as why your huband drank, and left you, there are so many aspects of his life and personality which could have caused him to do what he did, that I don't think it would be possible for you to know whether your RA was even on his mind. It really don't make much sense to feel guilty about something that you can only guess about. I hope you have a great day!

Guyb profile image
Guyb in reply to jneilw51

I gave up drinking 5 years ago and my ataxia is gettingfar worse and spreading than it did when I drank

jneilw51 profile image
jneilw51 in reply to Guyb

My Neurologist told me that, because everyone loses balance center capacity with age, my Ataxia will worsen with age even if I do not drink. But, he also told me that, if I continued to drink, the alcohol would speed-up the shrinking of the balance center, which would greatly increase the speed at which my Ataxia would worsen. I have accepted that explanation and, so, continue to completely abstain from alcohol. I have been sober about 41/2 years now.

LBenyon profile image
LBenyon

I made a mistake with the date of the Ataxia meeting its next month not this one (silly me)

what a coinindence I used to be whiskey and lemonade drinker!!

I am going to a A-Non meeting tonight for friends and familys of acholics,past and present, although I have heard very famlier stories , i just sit and listen, hearing some of the very harrowing stories have made me feel very lucky and also a lot calmer, the meetings are not my cup of tea, but they don't mind me attending and just sitting there!!

my ex joined me for dinner yesterday and he was Mr Nice not Mr horrible ,so things are looking up there!!

I have had 4 injections due to the spine being crooked, wear and tear of Arthrist,but still walk with an aid as my balance is shot and they cant do anything for that,i have 4 other injections in the right side 0f my spine to go,i find out this Friday when this is to happen? Wouldn't be great if we could be treated for our SCA? perhaps I could go out and meet people then on a social level and not just at meetings ! keep well Lorraine

jneilw51 profile image
jneilw51 in reply to LBenyon

Oh, well, what's a month? I used to like whiskey with 7-up or Coke. I don't know why Al-Anon would mind you being there, unless it was a closed meeting. Most Al-Anon meetings here are not closed. Even some AA meetings here are not closed. I live in a pretty rural area, where everybody pretty-much knows everybody else's business anyway. I used to go to AA meetings until some of the people just wanted to show-up to be able to say that they went, so they rushed people so that they could get home. I'm glad that your ex has gotten nicer. Just make sure that he doesn't start drinking around you.

I was sorry to hear that you have spine trouble. It sounds like the injections help a little. As far as a cure for SCA goes, my doctor said that research is being done on using stem cells to re-grow brain tissue. the problem for us is that actually using that research to cure SCA probably will not happen in our lifetime. I did read, though, that some people can benefit from walking a lot, even if they use a walker, or a cane. They say walking helps to strengthen leg muscles, which help us to balance, and walking also helps us to practice balancing.

Take care of yourself, Lorraine. By the way, my name is Jim Watkins, I live in Northwest Indiana near Chicago, and my regular e-mail, should you ever prefer to use it, is: jneilw51@yahoo.com.

LBenyon profile image
LBenyon

whats the difference between a closed al-anon meeting and a open one ,im showing my real ignorance now!! people do come to the meeting on a one only basis and do not return but they do ask that you attend at least 6 meetings, and from what you are staying I think,is that now I have attended my 6 meetings that I should reveal some of my worries? I don't Jim as when I talk about past happenings I just cry!!! so I say nothing except my name?

I put some pain gel on my knee today so that injection did not work for long haha.

I live in a small county in England-Basingstoke,Hampshire,England and originally from London,England.

I think its a shame there will be no cure for our SCA in our life time, and I find it very interesting that a lot of walking can strengthen our leg muscles as I have been told to do leg excercises to strengthen my leg on my theighs muscles,but conradting them selves im to stop excercising while having injections??? so at the moment I feel sandwich between the various doctors advice!!! again!!!!

will talk soon Lorraine

jneilw51 profile image
jneilw51 in reply to LBenyon

It sounds to me that, because of your back, your dr don't want you to walk. What I read about walking was pertaining to people with SCA only. So, I think that you should do what your dr there says. He may say that it would be ok for you to walk when you are not having injections. In my situation, I think that a big part of the reason that my dr said that I should walk all that I could, is because I told him that I sometimes choose not to walk because I am afraid of walking. Some do claim that the best way to get over such fears is to face them.

My understanding of a closed, as opposed to an open, Al-Anon or AA meeting is something that is decided by the members of those groups. An open meeting is one that allows anyone to attend, although they still might discourage from speaking anyone who is not a member of the family of an alcoholic. It sounds to me that this is the kind of group that you attended. I think that you probably would be qualified to become a member of an Al-Anon group since your husband was an alcoholic. I think that the main concern of an open Al-Anon group is that they do not want people, who are not family members of an alcoholic, to speak at their meetings. In any Al-Anon, or AA, group, people are allowed to attend, or to participate in, meetings whenever, and however often, that they want to. Most AA meetings here are closed. That means that, to attend AA meetings, people must be alcoholics who are trying not to drink. Also, they are not supposed to tell people, who are not members of the group, what was said by anyone in the group. A group member is still free to attend group meetings however often that they want to. The privacy aspect of AA is very important because few people would be willing to reveal very much about themselves if they thought that other members would tell other people what they said in meetings.

I hope that your back feels better soon.

LBenyon profile image
LBenyon

my a lot to digest there Jim,it sounds like I am going to an open meeting as people come to the meeting and talk about there day/week/month problems with acholics,but it sounds there recovering partners and not active acholics ,perhaps this is why I do not speek although I can relate to things in the past that has happened!!! I do know that eventually I will speek but the time is not right yet, still a bit raw for me as I keep crying, if I don't speek no tears?? At least no stress which means no flare up of my RA which s also good for my ataxia? My computer playing ,e up so I may need a computer dr haha!!!!

going now to do my dinner,i will write soon, keep well Lorraine

jneilw51 profile image
jneilw51

I think that you are in sort-of a unique situation in that, having an ex who you are still friends with, and who is an alcoholic, you could go to Al-Anon meetings. But, being an alcoholic in recovery, you could attend AA meetings. And you could probably either attend open, or closed, meetings. From what I have seen and heard, if you decide to go to a closed meeting, then you have to be willing to follow a couple of important rules. First, to be considered to be a member of that group, you should be willing to provide the person who is running the group with your name and telephone number. That is, partly, to show that you are serious about wanting to be a part of that group. It is also in case you say something during the group that makes them concerned about you. They want to be able to call you to make sure that you are ok. Second, of course, in AA, you must be an alcoholic who wants to stay sober, and, for Al-Anon, you have to have a family member who is an alcoholic. Also, if it is a closed group, you must promise never to discuss anything that is said in a group meeting with anyone who is not a member of the group. These rules are pretty-much followed in all groups. But, because each group is run, and participated in, by different people, not every group works the same way. As long as you stay within the general rules, you usually can attend as few, or as many, meetings as you like. But, since people do tend to get to know even people who don't attend a lot of meetings, someone could ask you why you do not attend more meetings. Also, very often, groups will ask everyone if they have something that they would like to say. So, you don't have to say anything, but expect to be asked. My advice would be for you just to attend a few meetings. Then, it's up to you to attend as many, or as few, future meetings as you want. Does that make sense?

So your computer is acting-up? They tend to do that. I just got rid of a virus on mine, and it was really hard to get rid of.

Have fun at your dinner! Take care of yourself.

LBenyon profile image
LBenyon

sorry I have not wrote you for some time,my daughter died in December 2015 of alcohol abuse she was 41. some good news I have seen my nuerologlist and she told me as long as eat healthly and drink alcohol to the minium my CA should not get worst but never get better,  but my severe RA is causing me a lot of problems,my walking etc: hoping you are keeping ok and keeping your chin up      Lorraine 

jneilw51 profile image
jneilw51

Sorry about your daughter, Lorraine. Alcohol ruins a lot of lives. I'm happy to hear that your Neurologist does not think that your CA will get any worse so long as you behave yourself. My Neurologist told me that mine probably would get worse with age, but how fast is different for everybody. I hope that they were able to give you some kind of medication for your RA. Because of my previous alcohol abuse, I would have to be in real pain before doctors would prescribe for me any pain reliever containing Codeine, or anything that could be abused. Actually, abusing and selling prescription pain pills is such a problem here that the government has asked doctors to cut-back, as much as possible, on prescribing them. They have become the number one drug that leads to heroin addiction because buying heroin is cheaper than buying illegal pain medications, so many people switch to heroin. I was happy to hear from you, and hope that you are coping with things ok. I have found that it is usually best to take things one day at a time.

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