Is anyone else having problems with people accepting they have ataxia.And if so do they seem like you should just get over it.They also don’t want to discuss it or change the subject on you.
I think people respond this way because they fear if they accept the fact then they will be used as caretakers and just dont want to be involved in extra work. Usually the same people will turn away if they see you are having a problem so they can not be used as gophers or have to help clean up when you are clumsy or sick.----Jerry
Dear Earlene, Although I personally have not experienced this, my theory is most people have never heard of ataxia. I don't talk about it to most people I know for that reason. Unless you have it, it's difficult for anyone to understand that doesn't, and also difficult to explain. I reserve deep conversations for my husband, best girlfriend and a few others with ataxia. At my age (61), I don't care what anyone else thinks about my ataxia...,ha! I have it, bottom line! My best to you..., ;o)
I care less what others do or don't know about Ataxia. Like Rose I have to deal with it.
That's a shame Earlene. It's important that you have someone you can talk openly to. My son's father, a jazz bass player, had tons of people assume he was drunk on gigs secondary to his unsteady gait. Now my son has been diagnosed with the same genetic mutation and will have to face the same thing down the road. What might be toughest for him is that his wife is in deep denial. While intellectually she is quite capable of understanding the disease, emotionally she is not at all ready to accept it. She needs time.
I worked as a rehabilitation psychologist and neuropsychologist in rehabilitation hospitals for 30 years and more. I often told patients that they might need to educate others about the changes that have taken place in their lives. It's kind of sad because when those terribly bad things happen to thoroughly nice people, we don't want for them to have to deal with anything more than they already have to deal with. But educating others may be the best way to help your friends, family and/or colleagues better understand the nature of your ataxia.
Also, remember your own reactions to others' stories about sad life events. As a rule I find that most people want to say the magic words to make everything all better and they don't know what those words are because they don't exist. But our attempts to make someone feel better often lead us to say things like "Well, it could be worse" and "You should feel happy because ..." and "oh well ...", or "uhhhhh.....". In general, people aren't mean and most aren't stupid, either. But rare, or unusual or devastating life events can make even the most well intended adults sound like real twits sometimes. Educate them, give them wiggle room when it comes to poorly phrased condolences, and, if necessary, confine your discussions to those who are able to 'hear' you and offer assistance.
I try to be respectful of people who ask about my Ataxia and then offer opinions about fixing the affliction or suggestions you should do this or that. I just thank them. I could care less if they do not accept my condition. To me the important thing is for me to accept and keep doing what ever to make this new adventure I am on as safe and interesting as possible.
Earlene I was frustrated over this many years ago & the hardest thing was getting my own immediate family to accept ataxia. They'd say things like "can't you just walk over here?" Walking to most people is so simple like breathing or drinking -- it's something they can do without even thinking about it. Now adays I agree with pgillenw & the other posters, I could care less what other people think --- and they better get out of my way when they see me & my walker coming through.
I thought I didn't c;are what others thought but sometimes their words are hurtful. Have a friend who is a nurse, so she should know better, will ask "what brought this one on?" and it is the way it is asked and the tone in ther voice that is hurtful. My husband will do the same or make comments like "let me know when you are done rocking and rolling so we can go". Like I have the ability to turn them on and off at will. I have EA2 so my episodes do come and go but lately they come to often. I am getting tired of educating people about ataxia but will continue because I don't want people thinking I am drunk. I agree with you some people really don't want to discus it or learn about it. Those people are not worth my time and I try not to do a lot with them. You're not alone.
..Thanks for your Blog Earlene and thanks,Nancy, for a wonderful response....Remember Kermit the frog ?
'It's not easy being green"..
I am still learning how to explain Ataxia. My husband, though very supportive, just learned how to pronounce Ataxia. My friends ask all the time how I am but that’s from my having had two strokes. When I say okay from the strokes but have been diagnosed with Ataxia, they change the subject. I don’t think it’s done to purposely hurt me, it’s like saying I have headaches, THAT people understand. My family and closest friends care enough to find out about Ataxia on their own.
Ataxia's come in varieties. In the big scheme Ataxia's are considered rare as you know. It seems to me it is normal for people to won't an answer for everything. Throughout the time of humans on the planet if they can't explain an event guarantee some individual will offer a reason and outright attempt to fix. So if what I said has any validity whats left to the Ataxian? Well I hope medical research keeps trying to find a way to address -- complicated -- and the non researchers of science well just smile and let them have their moment of reasons for taking the stage.
I agree with Nancy.Most people are well intentioned.They just don't understand and even some Neuros are confused.Ataxia seems to have diffrerent causes and symptoms.For me my Ataxia started with mild speech and balance probs and in the space of 5 years or so now I have no mobility,poor speech and the last 2 years a violent tremor and poor deteriorating vision.The latest MRI correlates with the symptoms. No fatigue,pain or swallowing probs.I felt vindicated not confused anymore.How I explain it to myself and others is to say only one part of the brain has shrunk;the rest is ok.It is however debilitating for me now.
My husband still can’t accept this.My mother refuses to talk about.And first neurologist just keeps trying different meds.He even told me he was grasping at straws.He keeps asking optic neurologist what to do.Now seeing a neurologist that optic neurologist sent me to.Hopefully will get answers.Since her specialty is ataxia.Friends just keep telling me that they think it will get better.One friend thinks it’s like a broken foot and will go away.They ask out of noseness not concern.Just to talk and say stuff to other friends.Then other friends tell me.Very hurtful.Thanks for everyone’s encouragement.Earlene
I was diagnosed with an unspecified SCA 6 years ago - since then I (and others around me) have noticed things getting worse. Some around me I tell what I have - others can think what they want, since I don't really care. If someone has a hard time with it that's their problem. Yes, their words can be hurtful at times - but if they have a big problem with it then they are someone I don't really want around!
A disappointing aspect of some is to Blame the Victim. People did it for years with rape victims. Indeed, even in what one would hope were more 'enlightened' times and even with the amount of education available in regard to women's issues, Gubernatorial candidate, Clayton Williams, recently said in regard to someone being raped: "''If it's inevitable, just relax and enjoy it.'' So there's an area where one would hope that education or at least cultural pressure would inform Clayton to keep his mouth shut. But can he do it!?! Nope. I agree with you all that if you're dealing with petty or mean-spirited folks who'd rather gossip than learn about something, find others to associate with. Life is too short to deal with creeps.
Dear Earlene, I already posted a comment, but thought of something else I wanted to say, in response to what you said, "my husband still can't accept this", and "my mom refuses to talkn about it". I just want top say I think it's harder for anyone who loves us to accept something is wrong. Although I am able to talk to my husband about my ataxia, he is very concerned and sad for me. My mom is like yours, therefore I don't talk about it with her. I think seeing her child with this is too much for her to take. And, to make matters worse, my neurologist just told me he suspects I may have a recessive type that was passed down from my mom and dad, who would be asymptomatic carriers. If I find out this is true (I'm hoping to have recessive genetic "genome"(spell ?) testing), believe you me, I'd NEVER tell my parents, as they'd be soooo upset to think they passed a faulty gene to me! Of course, I would not blame them, as how would they have known, but at their ages (85 and 87),'m very protective of their feelings! My best to you..., ;o)
The main and pretty much only care taker I have is my daughter.My husband only helps me very little when she is not around.So most of my friends and family that is not the issue.They just don’t believe me or want to accept it.Not sure why
Thanks rose my mom has said in the past she doesn’t think that this is permanently.So because it has gone on she doesn’t want to talk or acknowledges it has.I think if she thinks she dies that it will just go away.
That is true Bw green.But if you have to be around them sometimes and their family or family friends that’s hard.
Good advice Nancy.But hard when family and family friends.That you have to be around sometimes.