I was getting my hair done today. I was getting my hair shampooed by the shampoo girl. She asked me if I injured my back, I said no. then she asked me if I was hit by a car, I said no. then she asked if I was born like this, I said no. At first I got that feeling like “it’s none of her business”. But then after a minute I explained, or tried to explain ataxia to her. She was about 20 years old and after all her curiosity soaked in, I thought, “what a caring person”. So I thought that was cute, and I thought about spreading knowledge about ataxia.
Yes, its odd (and funny) when you can see them picking up the courage to ask whats wrong
have you had an accident ?? is a popular one
I live in a retirement complex and the residents here 'interview' me one at a time. LOL. Bless them.. most of them hard of hearing and bad memory too.
Patsy x
Hi there,
I'm 82 and 6 months old, and have only had Ataxia for 5 and 1/2 years, but since I've had it, I've only had kindness shown by everyone I've met (there's always the first time !!), On slopes, stairs, tiles, woodblock floors, wet surfaces, coloured surfaces, etc - "are you OK", "can I help you" - I then have to explain that I've got a "condition". Nearly all of them have not heard of it, I then tell them how lucky I am to have had it start so late in life, and how most people have it start early in life, and are in wheelchairs, and when I say how many types there are of it, they are really interested.
Anyway - all the very best to you. Doug, Bristol, UK.
I am usually asked if I have had a stroke or MS.
I’ve had the MS question before from an adult.
I’ve also been questioned by little kids - just general questions - which makes it easier to see that it’s just curiosity and concern.
Absolutely NEVER miss an opportunity to educate someone! Every opportunity you have - explain. Just like you didn't know, they don't know. Most are really curious, and they need to be taught. Those that judge, need to be taught. Those that assume and accuse need to be taught....it's fun to watch them trying to take their foot out of their mouth. No one will know unless WE teach them."I have a neurological disorder called 'ataxia'. It is somewhat like Parkinsons ort MS, and wreaks havoc on my muscle control" That will probably satisfy many. If they want more, they'll let you know. "The signals from my brain that tell my body what to do can't get there, so my muscles have their own party." Humor is key. One can't explain ataxia, if one does not FULLY understand it. Always put yourself in their shoes. Wouldn't you be curious?
Lots of good ideas here and I really like your attitude Jonas!
I may have to practice these lines, so I am prepared when it happens again.
Someone just asked me recently if I had MS or Lupus. Most of the time no one asks anything.I recently tripped over a shoe and got a black and swollen eye, and had to wear sunglasses, so everyone assumed my unsteadiness had to do with my eye. By the way, what happened to the gal with news of an "invention" from Iowa State University. She never said what it was. Neta from Jerusalem
I hadn't been to the hairdressers' in ages and things had got beyond a joke, so I forced myself to make and appointment.
It was my first visit using a cane, and questions were asked. The hairdresser was so caring, she gave me a very
relaxing head massage, I could have sat there all day!
Funny, because I just had my hair washed, cut and blown at the hairdresser. I dont have a cane so everyone assumed (again) that my black eye was the problem. But also could have sat there all day--it was so relaxing . Nevertheless seeing all these happy matrons, made me jealous a bit. There was one (older) woman from my former gym "I havent seen you in ages," she said. I told her (a lie) that i have a personal trainer now. She was satisfied.
Regarding the toilet, I always take wads of clean toilet paper with me in case all is lost, and I have to pee into something, and drink and eat as little as possible in advance. The toilet paper functions in a way like a diaper. Weird but do-able if you just cover yourself with a coat and do the deed in a darkened place. A bowel movement is another story and its best to go at home or in some normal toilet before going out. N
Beryl Park said:
I hadn't been to the hairdressers' in ages and things had got beyond a joke, so I forced myself to make and appointment.
It was my first visit using a cane, and questions were asked. The hairdresser was so caring, she gave me a very
relaxing head massage, I could have sat there all day!
Excellent. We should all be ready and willing to educate the population about this disease if They want to hear about it. If you ask or they don’t seem curious Do not burden them or make yourself tiresome.
I have an ataxia denim shirt. Actually two. I frequently wear them because thy are so comfortable. They often cause people to ask questions… Another way to inform the public. Now that summer is here I shall get out my “ataxia is not a foreign country” T shirt. That’s even better because Thayer ask “what is it?”
Whenever I have to talk about it I say it's "no big deal." Then whoever I'm talking to will ask "so what do you take for it?" I say, "Oh I take something to keep my eyeballs from jiggling so I can drive but there's no real treatment." Then they'll ask, "So...will you be okay?" or "So...what will happen?" And then I'll have to say, "Well I'll be in a wheelchair and then it will kill me. But not for awhile so it's okay." Then I'll try to change the subject and they want to know when. I have to tell them I don't know.
I think you guys are a lot kinder about it than I am. I always end up feeling annoyed that the other person gets to feel uncomfortable about it, like *I* made them feel bad when it was THEM who kept prying. Like there's no way I can answer these kinds of questions in a way that makes anyone feel okay. I don't feel like people want to be educated when they ask me I feel like they're looking for me to reassure them and I can't.
No one asks me so I don't say anything. The close circle which does ask (my daughter, cousin) doesn't quite get what I am saying. I am always asked 'are you getting better?' People find it, in this day and age, almost medieval that there "is no cure" for some diseases. N
Marjorie said:
Whenever I have to talk about it I say it's "no big deal." Then whoever I'm talking to will ask "so what do you take for it?" I say, "Oh I take something to keep my eyeballs from jiggling so I can drive but there's no real treatment." Then they'll ask, "So...will you be okay?" or "So...what will happen?" And then I'll have to say, "Well I'll be in a wheelchair and then it will kill me. But not for awhile so it's okay." Then I'll try to change the subject and they want to know when. I have to tell them I don't know.
I think you guys are a lot kinder about it than I am. I always end up feeling annoyed that the other person gets to feel uncomfortable about it, like *I* made them feel bad when it was THEM who kept prying. Like there's no way I can answer these kinds of questions in a way that makes anyone feel okay. I don't feel like people want to be educated when they ask me I feel like they're looking for me to reassure them and I can't.
On Saturday I called in to see my newly married daughter. Her new mother in law was there and asked how I was and had I been up to anything interesting lately (she'd just come back from a holiday in Tanzania) . Before I'd even thought about it, I blurted out I was having problems with short term memory and couldn't remember. This stopped her in her tracks and she quickly changed the subject.
Ataxia is never discussed at all in my family, they accept I have limitations and make allowances but never ask me how I'm actually feeling or what is actually difficult for me. I don't know if it's because they don't take this condition seriously or they feel embarrassed discussing it. Sometimes I'm made to feel as though I'm just being awkward, for instance, not wanting to go somewhere socially if the lightings bad and it makes me feel disorientated.
Thank goodness for sites like this, for support and understanding.
My (older) brother didn't even want to look/see any medical paperwork. My sister(also older) was pissed off that I said "something" to my aging parents. The sense is that I am making a mountain out of a mole hill. No one discusses anything. Even my husband or children can't accept this. Until they see a walker or a wheelchair, it's nothing special. I suspect all these people will always think I "invented" it. N
Beryl Park said:
On Saturday I called in to see my newly married daughter. Her new mother in law was there and asked how I was and had I been up to anything interesting lately (she'd just come back from a holiday in Tanzania) . Before I'd even thought about it, I blurted out I was having problems with short term memory and couldn't remember. This stopped her in her tracks and she quickly changed the subject.
Ataxia is never discussed at all in my family, they accept I have limitations and make allowances but never ask me how I'm actually feeling or what is actually difficult for me. I don't know if it's because they don't take this condition seriously or they feel embarrassed discussing it. Sometimes I'm made to feel as though I'm just being awkward, for instance, not wanting to go somewhere socially if the lightings bad and it makes me feel disorientated.
Thank goodness for sites like this, for support and understanding.
You know Neta I often feel there would be more compassion for a broken arm, because you can see that. When it was my daughter's wedding, I had a good (healthwise) day, and managed without my cane, although very slowly. I managed to dance, passably. So, on the face of things there was nothing untoward regarding any disability. But, days like that are a flash in the pan, people often don't see me when I'm listless, staggering, nil concentration etc. Sometimes I still feel awkward using a cane when I'm with people I know. Because it took me so many years to get a diagnosis, I think my family are just fed up with me constantly not being fit and well, it's not news anymore. From my son being 6yrs old I've had health issues, he's 28 now.