Hi, this is my first post to this group. My husband was diagnosed with ataxia (non-genetic, unexplained) a little over 2 years ago. Prior to that time, he has been a daily drinker (since about 2001). Since that time I only remember 7 days in 2006 he did not drink. Anyway, I have experienced all the typical affects of living with an alcoholic including the blackouts, verbal abuse, etc. My husband has been honest with the doctors about his drinking, and 2 neurologists have stated that his drinking did not cause his ataxia. My youngest daughter is a Pharmacist and is 99% sure his alcohol abuse did cause it and is very angry at him and at me for being an enabler (which through al a non, counseling for past 7 months, etc. I am working hard to not be an enabler).
My question to the group is this, I am taking him to the neurologist today and was curious are there any questions I should ask, information I should request in regards to applying for disability (which he has not done), information in regards to helping with Home Health, remodeling a bathroom for handicap capability, etc.?
Also, I was seriously considering leaving him prior to this diagnosis, I have been unhappy for years. My daughters (grown) do not enjoy being around him due to his depression, alcoholism, and fear of his falling with alcohol, etc. It's tearing up my family. His immediate family has lost all respect for me because I am working in a job which requires me to be away most of the time, travel, have an apt close to the office in a different city, etc, however, I supply income, benefits, etc.
Any insight is appreciated. My health (physical and mental) is starting to suffer and I am scared. Sorry to ramble.
You’re obviously under a lot of pressure, feeling responsible for someone you
perhaps have lost feeling for.
Your husband needs professional help for both your sakes. It is actually a
commonly held belief that alcohol does effect symptoms of Ataxia, from
personal experience I can say even one glass of wine effects my legs.
I live in the UK so can’t pass a comment on where to go for disability info,
but get as much advice as you can from the Neurologist regarding the
alcohol abuse. Think long and hard on your own situation, how you’ll be
able to cope should your husband need you as a carer.
Best wishes to you both. xB
Wish I could say something constructive but words fail me. Just wanted to say hello .. I really admire your strength and hope someone on here can answer your questions.
I am 72 years old and my husband is very caring. I think it is very different when its the husband with ataxia but with heavy drinking too. that's difficult for me to imagine.
Hugs to you x
Tough situation to comment on. All I can say is that his ataxia shouldn't be the reason you stay with him and it shouldn't be the reason you leave. Go by his behavior and character before and after. I hate to say this but alcoholism isnt something that tends to fix itself when things get tough so I wouldn't hold my breath for that to change. Just the fact that he regularly gets drunk while having ataxia is hard for me to understand....why would you want to make symptoms worse voluntarily? The slightest chance that drinking might of caused-contributed to it should of stopped that.
I guess the real thing is that you wanted to leave before and for whatever reasons you stayed. Now if you do it he will be able to say its the ataxia that's making you do it and he will probably get some sympathy from some and some people might have a bad opinion of you for leaving a disabled person. But like I said base it on his character and actions both before and after the ataxia. Alcoholism is a lot of times driven by avoiding problems so how is that going to change now that he has health problems? I see a lot of people on here with spouses that stay and are helpful but those people are usually facing their issues and working to help themselves which in my view makes them have a strong character that is admirable. Staying and taking care of this man will put you in the spot of enabling his drinking, his denial, his depression, etc etc and will just end up making you miserable.
Alcohol affects the same part of the brain as Ataxia. Apparently, he will not do anything about his disease of Ataxia because he is still drinking and has not filed for disability and it is also clear that he will not (or perhaps can not) do anything about his drinking. If he WILL not then you need to ask yourself why you see it neccesary to stay in a situation that you can do nothing about. However if he CAN NOT stop drinking there are options. Alcoholism is an illness that can be arrested.Have you tried asking him if he WANTS to stop? I am a sober alcoholic and I was diagnosed with hereditary ataxia in 1988. They just found out a few months ago which type of ataxia I have, it is called ARCA-1 and is extremely rare. My ataxia progresses and there is nothing I can do about that. My alcoholism also progresses but I have a treatment for that and as long as I don't drink it is not an issue. If HE would like more information have HIM contact me privately at ■■■■■■■■■■■■■■■■■
I'm sorry for your situation and I may be able to help with some info. Yes, chronic alcoholism does cause deterioration of the cerebellum as well as the cerebral cortex. Many doctors are unaware of this, but if you google alcoholic ataxia (specifically anterior vermis syndrome), you will find many articles related to it. Quite simply, if he doesn't stop drinking, he will die. If he does stop, he may stop the ataxic progression with physical therapy. He probably will not get all his functionality back (cerebellar tissue doesn't grow back), but it may stop the progression. Get his vitamin B and E levels checked. As for you, you should know only one person can get him to stop drinking...him. No amount of cajoling from you or his family will stop him, only he can. You can support him if you like, but ultimately you have to think of your own personal well-being. Verbal abuse is always unacceptable and his depression will not get better without treatment and alcohol abstinence. Suggest inpatient rehab for at least 30 days. If he refuses, stop the enabling and, sorry to be harsh, move on with your life. Good luck.
Hi Iwhite - First, what an awkward position to be in. I’m sorry that this is an additional obstacle for you to hurdle.
Also, it sounds like there might be some confusion on what caused your husband’s ataxia.
Maybe because of this and because it might be helpful to separate the issues, a third-person professional could help with moderating, help with separating the issues, etc. Is there a social worker or an domestic abuse hotline that you could call to seek out additional professional help?
This is my first post too. I see parts of my story in yours. I am engaged to a wonderful man with ataxia that wasn’t so wonderful when he drank. His doctors have told us the same thing –his drinking didn’t cause or make his ataxia worse. My feeling is this: if they can’t tell me what has caused your Ataxia they can’t tell me that your drinking isn’t somehow involved. I told him I could only handle one thing, his drinking or his Ataxia. Dealing with both would be way too hard. He gave up drinking, 100% just on willpower. Our relationship has been great ever since. But that is because HE wanted to change, I couldn’t make him. My advice to you is to separate and list your issues with him. 1. Alcoholism 2. Behavior and treatment toward you 3. Impact on the family from Ataxia etc. Then if he works on them with you great, if he doesn’t you have to have a different discussion. Listing out problems really helped break apart the issues and then we handled them one by one together. It was not easy by any means, but in my case it was worth it.
I hope this helps.
All I can say right now, is WOW, you all (or ya'll as we say in Texas) are amazing. I never thought I'd receive any responses, much less this many in such a short amount of time. Thank you so very much! I have felt so alone in this journey, you all have lifted my spirits!
I still welcome additional discussions/replies and hoping I can someday help others from my experiences.
Have a great Wednesday!
Allthe above posts I think say just the right thing but I want to add one more thing, whatever you ddecide let your children know tell the truth dont give a chance to alienate you for your decision because tthey do not know wwhy you maid it.
My husband Tumbles 83 was diagnosed with a hereditary Ataxia in 1988. There are 6 children in his family 3 of them have Ataxia, all in different stages of progression, all with different attitudes towards the disease. My husband fares the best of them all. He is a recovered alcoholic 30 years sober and STILL active in his program of recovery. Alcoholism is progressive and does not go away, Ataxia is progressive and will NOT go away either. Genetic testing of the eldest sibling determined they had ARCA 1 which is VERY rare, less than 100 world wide. It is Autosomnal Recessive Cerebellar Ataxia 1. He was first diagnosed with Friedreich's Ataxia, but that was the late 80's, little was known about this baffling and relentless disease. He falls down every day, he has been using a wheel chair since 1993, I hear him fall, all i can do is pray he does not get seriously hurt... I am powerless over David's Ataxia, and you can bet my life is unmanageable because of it. I am not trying to be callous, I am a recovered alcoholic also, have my own litany of health concerns and am in a wheel chair too. David and I have been married 23 years as his Ataxia and it's problems have progressed his RECOVERY from Alcohol with it's solutions have increased too. There is a solution to live with and manage BOTH diseases. Whining about the disease will not remove it, if you are an alcoholic and you drink you will get drunk. If you are an Alcoholic with Ataxia you will get drunk and fall down, ALL people with Ataxia will fall down, it is not a matter of if, it is a matter of when. Physical therapy, lifting weights, specialized diets, OR any pharmaceutical GENIUS presently known to man will NOT halt or reverse the progression of Ataxia. in any of it's forms and for what ever reason it has occurred Ataxia cannot be stopped. Ataxia is NOT only a disease but Ataxia is a symptom. It is your responsibility as a person seeking the best quality of life possible to find out what exactly your Ataxia is. If it is a Disease, then admit powerlessness over it and accept the gift of life you have with gratitude and JOY... My husband does and this man is miraculous in my eyes. He is not now nor has ever been a whiner. If your Ataxia is a symptom caused by other disease, alcohol. drugs. environmental toxins, food or whatever then determine what causes it and get out of it, or stop doing it. WHINING will not work and squats will only strengthen the legs if a person with Ataxia does not fall over and break them... Be real people WE ALL KNOW THE PROBLEM... FIND A WAY TO YOUR SOLUTION !!!!! TRY FORMING A 12 STEP GROUP... ADMITTING POWERLESSNESS AND THE UNMANAGEABILITY OF A LIFE RUN ON SELF WILL is not defeat, but the jumping off point to becoming empowered in a positive way... Have a great day, and non affected spouses of Ataxia need Ataxanon... Ataxia has affected me, my life and my health for 23 years... I don't have it, but I do live with it!!!!! Good LUCK!!! Rosemary LeBlanc ■■■■■■■■■■■■■■■■■
Dear Iwhite, There is really nothing I can add to all the wonderful posts, as I agree with the comments/advice thus far. I just wanted to welcome you, and tell you I admire the way you're trying to deal with a very difficult situation! I hope everything works out for you and your husband! Post anytime, as there are great people on this site for support and understanding! No, you're not alone in your journey..., ;o)
Roz, I think you underestimate the fact that physical therapy will improve a person's quality of life, primarily in prevention of atrophy. Additionally, if you stop ingesting the toxin that made you ataxic (provided this is the only cause), you will stop damaging your cerebellum further. The cells that were already damaged will not repair themselves. What's done is done. However, strengthening your core muscles will help with balance issues. You may never walk again unassisted but you may (or may not) stand supported. Also, the mental benefits of trying to help oneself are tremendous. No one is talking about a cure, just better management of symptoms. I see little evidence of whining here. Peace to you and yours.
My husband Tumbles 83 was diagnosed with a hereditary Ataxia in 1988. There are 6 children in his family 3 of them have Ataxia, all in different stages of progression, all with different attitudes towards the disease. My husband fares the best of them all. He is a recovered alcoholic 30 years sober and STILL active in his program of recovery. Alcoholism is progressive and does not go away, Ataxia is progressive and will NOT go away either. Genetic testing of the eldest sibling determined they had ARCA 1 which is VERY rare, less than 100 world wide. It is Autosomnal Recessive Cerebellar Ataxia 1. He was first diagnosed with Friedreich's Ataxia, but that was the late 80's, little was known about this baffling and relentless disease. He falls down every day, I hear him fall... I am powerless over David's Ataxia, and you can bet my life is unmanageable because of it. I am not trying to be callous, I am a recovered alcoholic too and have my own litany of health complaints, BUT David and I have been married 23 years as his Ataxia and it's problems have progressed his RECOVERY from Alcohol with it's solutions have increased too. Whining about the disease will not remove it, if you are an alcoholic and you drink you will get drunk. If you are an Alcoholic with Ataxia you will get drunk and fall down, ALL people with Ataxia will fall down, it is not a matter of if, it is a matter of when. Physical therapy, lifting weights, specialized diets, OR any pharmaceutical GENIUS presently known to man will NOT halt or reverse the progression of Ataxia. in any of it's forms and for what ever reason it has occurred Ataxia cannot be stopped. Ataxia is NOT only a disease but Ataxia is a symptom. It is your responsibility as a person seeking the best quality of life possible to find out what exactly your Ataxia is. If it is a Disease, then admit powerlessness over it and accept the gift of life you have with gratitude and JOY... My husband does and this man is miraculous in my eyes. He is not now nor has ever been a whiner. If your Ataxia is a symptom caused by other disease, alcohol. drugs. environmental toxins, food or whatever then determine what causes it and get out of it, or stop doing it. WHINING will not work and squats will only strengthen the legs if a person with Ataxia does not fall over and break them... Be real people WE ALL KNOW THE PROBLEM... FIND A WAY TO YOUR SOLUTION !!!!! TRY FORMING A 12 STEP GROUP... ADMITTING POWERLESSNESS AND THE UNMANAGEABILITY OF A LIFE RUN ON SELF WILL is not defeat, but the jumping off point to becoming empowered in a positive way... Have a great day, and non affected spouses of Ataxia need Ataxanon... Ataxia has affected me, my life and my health for 23 years... I don't have it, but I do live with it!!!!! Good LUCK!!! Rosemary LeBlanc firstname.lastname@example.org
I agree, David I Pandorf! Also, my neurologist said there's been successful studies in rodents showing their brains can make new neural pathways. The key to this is to exercise an hour each day (if possible) and keep challenging yourself. For instance I do an exercise for balance, where I stand at the ledge between my kitchen and family room, in case I lose my balance and start to fall, I have something to grab onto. Anyway, without holding on, I balance on one foot for as many seconds as I can, and then the other. I keep challenging myself to up the seconds, and am up to 20 now, whereas I could only do about 5 when I started several months ago. There are other exercises I do for strength and balance, that have improved over time. I also stretch my muscles each day (yoga/pilates), as that helps too.My neuro says to just keep moving, safely, of course (easy for him to say...,ha!). If you're unable to stand, there are effective exercises you can do while sitting... ;o)
My heart goes out to you. You're on the right track. Go to Al Anon and before all else decide what's best for you, not your husband. That sounds cruel, but as a mother myself and a triple winner (alcoholic, daughter of an alcoholic, and mother of an alcoholic/heroin addict), I can tell you that you are no good to anyone if you don't have good physical and mental health yourself. So take care of your primary concern first, you. Then decide if you have strength to help anyone else - family, husband, etc. David has the best advice of all who have contributed here. My mother died without ever getting treatment at 82. Her only sobriety was the result of spending 10 years in a nursing home, unable to get any booze. She was diagnosed at age 50 with first, MS, then Ataxia. They didn't have MRI machines then. When I was diagnosed with hereditary ataxia at about the same age after 20 years of no drinking I was stunned. No one told me there was a hereditary ataxia and as a child I always believed my mothers falling was from booze, and the doctors made up a condition, Ataxia, in order to not deal with her alcoholism. Doctors have a very high rate of alcoholism and drug addiction as a profession and many totally enable their patients. Your neurologist is not an addiction specialist and is not the best person to talk to about your husbands drinking. Neurologists I've seen (many) really don't know much about Ataxia and won't admit it. Alcoholism depletes the body of B vitamins and most alcoholics are very nutrient deficient. Vitamin deficiency does cause certain types of Ataxia. Until your husbands alcoholism is dealt with and treated, I believe it's impossible for a neurologist to say anything certain about his Ataxia. If you want to leave, do. If you don't, Al Anon will help you know how to live happily in your situation. Either way your husband will drink or not drink as HE choses. I'm a big believer in in-patient treatment for longer than 30 days. If you can find a treatment program or private individual (professional interventionist) who you could hire to coach your family in how to put together an intervention for your husband, that may be something to consider. I did this for my son and his wife (both heroin addicts) and I found him on the internet. Both my son and his wife went to treatment as a result. Don't try this without a professional to lead the way. Many treatment programs have someone who will help you with this. Wives threaten to leave their husbands and this sometimes is enough motivation for an alcoholic to go to treatment, or AA, or whatever they need to do. Don't threaten if you don't mean it. But it won't keep them sober. Once sober the alcoholic has to do the real work to stay that way and whether you enable or not it won't make any difference. Take care of yourself. If you want someone to talk to feel free to email me @■■■■■■■■■■■■■■■■■
When you see your neurologist tell him your husband might have Wernicke's encephalopathy do to his alcoholism. What happens when you drink alcohol every day it blocks the absorption of thiamine vitamin B1. The cerebellum is the most susceptible to thiamine deficiency. The cerebellum is in charge of walking balance coordination speech etc. Here are some articles on thiamine deficiency by PubMed and Wernicke's encephalopathy. Your husband needs to be treated with high dose of thiamine immediately. http://www.ncbi.nlm.nih.gov/pubmed/16527765
Whether or not the alcohol causes his ataxia is probably immaterial at this point.
My ex is an alcoholic so I get it. Abuse verbal and physical were normal days then. I was not an enabler....that drove my ex crazy. He wanted me to be an enabler. I would agree that his having ataxia shouldn't be the deciding factor for you to stay or go. Abuse is NEVER OK. NEVER. :-)
Keep going to Alon-non as it is super helpful. Get healthy people around you who are willing to speak truth into your life (and listen) for support before you make any decisions. You'll need it moving forward.
Take care and keep us up to date.
I was an alcoholic too.10 years sober.Irecovered through AA.My nephew has just done a stint in rehab and loved it. I was diagnoseed withC Ataxia about 6 years ago. the mentaal torment of this disease doesn't feeel as bad.Neuros get all excited about alcohol but in my case i don't think alcohol was related to my Ataxia.
There is a lot of wisdom inAA and al anon.Rely on a higher power for help..Alcoholism is a disease not a moral issue..
In my case it was undiagnosed depression and I have been better since taking anti depressants. The Ataxia has made me a much better person mentally but not physically. There is hope. Before getting into AA I had one finger on the self destruct button.I havee seen the most awful cases get better.There is hope but you must do what is right for you.
It is a long and heart breaking road you are on but Al Anon and AA are a loving caring group.Sounds as if you have got in the right place.
Update...........during my husband's appointment yesterday, all went as normal with typical tests, etc. however we did receive a surprise. Towards the end of the appointment the doctor said my husband would have to meet with an occupational therapist and be assessed through a driving simulator, then if he passed he would take a driving test. He said he drives fine and he does. The doctor said he must have his driving assessed (not an option) now that the need is documented in his medical records.
You can only imagine the disgruntlement being told your driving capabilities might cease! Is this normal? After a period of time is driving not possible or is only a rule protocol in Texas? The doctor said she was protecting her own liability as well as the safety of others.
Other results of the visit were.........doctor said he has all the indications of a genetic form of ataxia and also alcohol induced ataxia. He did not have genetic testing done because our insurance does not cover and 2 panels total $20,000. He reported he had cut down on drinking (which is true) but was encouraged to stop, of which he will not. Once I got him home, he started drinking, so I know he will never stop. He also was angry and said I was not to go to the doctor with him because I talked too much and created more problems.
If any of you out there could comment on the driving, that would be great.
Thank you again!
Your husband should realize himself that he can't drink with Ataxia. The two don't mix. Having ataxia, which affects your balance, is hard enough without alcohol. Alcohol will just add to the problem. If he won't quit drinking on his own, or you can't get him to quit, you may need help from a third party. Maybe a professional counselor. As far as the disability goes, I think it all depends on how the paper work is filled out. Most people are denied the first time. I was lucky and got it the first time. During your disability interview, just tell them the truth about your husband's problems. I don't know if he has ever fallen, uses a cane or a walker or has difficulty walking, but all this will go into their decision. Does your husband go to a neurologist? They will also have him fill out paper work about his condition. I don't know what my neurologist put, but he must of made me sound like a mess because I got disability the first time, which is very unusual. I use to work in insurance and one thing I do know is that companies do not want someone working for them that could fall and hurt themselves on their premises. Hope this helps. Good luck.