Common Sense Ataxia Facts

COMMON SENSE FACT #1....Many need to stop blaming ataxia for all of their woes, and take some responsibility. Lack of any kind of movement or even moderate exercise is hurting you tremendously. Just like the person who sits on the couch eating ice cream and Twinkies will never lose an ounce, an ataxian who doesn't move will never make anything happen.

COMMON SENSE FACT # 2...Every little ailment or ideosyncrasy you experience is not a common symptom of ataxia. Don't look for trouble where there isn't any.

COMMON SENSE FACT #3...It's not always a balance issue. Many times an ataxian trips because they don't lift their feet off the ground high enough. The body moves, but the foot has it's own agenda.

COMMON SENSE FACT # 4...Weather has absolutely NOTHING to do with you catching a cold or getting the flu. They are viruses transmittted from person to person. You can stand outside naked in freezing temp with wet hair, and all you will get is laughed at.

COMMON SENSE FACT # 5 -There are THOUSANDS of conditions/diseases that have no cure, and that you never heard of. YOU never heard of ATAXIA before it hit you between the eyes. YES, most drs. know nothing about it. There is no benefit in complaining. DO SOMETHING ABOUT IT!!!!

COMMON SENSE FACT #6 - Exercise is ANY type of movement...You don't need equipment, or a gym membership. Walk, swim, bike, stretch, yoga, play with dog, mow the lawn, shovel snow, sit and just flex muscles, wiggle toes, laugh out loud...ANYTHING you can do beats doing nothing. Hold on to furniture, lean on a wall, crawl around on the floor...Use your noggin.

COMMON SENSE FACT #7....Ataxia has caused your body/muscles to not work like they used to or nearly as much. Your feet,, legs, back, shoulders, etc. all hurt because of this. USE THEM, MOVE THEM, EXERCISE and STRETCH!!!

COMMON SENSE FACT # 8...Medical school does NOT have ataxia in their cirriculum is HIGHLY specialized. Dissing on a nurse or primary care Dr. or ANY medical person for not knowing is like taking a high end Bugatti with an intermittent problem in the computer that controls braking and acceleration to your local Midas or Pep Boys, and being mad they know nothing about it.

COMMON SENSE FACT #9....Supplements and vitamins can make your body FUNCTION better. They are not a medication that can make you FEEL better. Exercise, with some supplements and a healthy diet however WILL make you feel better!

COMMON SENSE FACT #10....Results require action. Do what you will with information given...put it into practice, or be like the smoker that says they need to quit while firing up another coffin nail and hacking up a lung. Doing nothing gets you nothing.

You are so right!

I wouldn’t say I am overkeen on this post as explaining common sense to a 4 year old who as attaxia maybe hard. Maybe could bear in mind that all attaxia sufferers and patients are not always adults

I liked your common sense facts and they made me feel a whole lot better because sometimes reading what’s on this site makes me depressed as I think I am going to end up with all the symptoms mentioned and I am sure this will not be the case!

I couldn’t agree more.

Sorry Katherine....all posts don't apply to everyone. The majority of ataxians are adults. It does however give you some info as a parent. I am an ataxian, son to an ataxian, brother to ataxians, uncle to ataxians, and also father of an ataxian. I know it's hard as hell to watch your kid go through it.

Right on Jonas! Thanks for posting.

Yes, while the majority of ataxians may be adult, and we all should know your common sense facts- WE NEED TO BE REMINDED once and awhile. I esp like fact #3. One of my feet does have it's own agenda. LOL!!!

Yes!! My right foot is convinced it is always right, not matter WHAT it is doing!!

Snoozy said:

Right on Jonas! Thanks for posting.

Yes, while the majority of ataxians may be adult, and we all should know your common sense facts- WE NEED TO BE REMINDED once and awhile. I esp like fact #3. One of my feet does have it's own agenda. LOL!!!

Although a lot of what you say is common sense I do find it sometimes consoling to share some not all symptoms with others on this site.

I do not have all the symptoms.

Sometimes people need time to reach the same conclusions.

Most people on this site do exercise in many different ways.They will agree with you and they do use it or lose it.

I found it a great help to understand why movement is difficult.Your legs do get weaker but why are we reluctant to take both feet off the floor?Is it loss of balance?

Some just like emotional support and want to help others by sharing what they have found.

Some just like to be useful and know all the common sense stuff anyway.

There may be different reasons for going on the site.

Hi Jonas, I agree with some of your ataxia facts, others, not so much. People handle ataxia in different ways, as there are many types of ataxia, different degrees of symptoms, and different causes, some hereditary, some not. I was diagnosed 10 years ago. I had always been active and healthy, so I have no idea why I have ataxia. No one in my family as far back as we know had this, except me. Guess I'm special...,ha! For instance, I use to be an avid skier and am married to a man who is a ski patroller. I miss not being able to ski! Although I tend to have a positive nature (glass half full rather than half empty), I'm a realist. I try to embrace the things I can still do, rather than focus on what I can't. I fell in my kitchen November (not because I didn't pick up my feet, but because I lost my balance) and hairline fractured my pelvis. I also fell in January (lost balance again) and hit my head on the corner of the wall. I sported quite a lump on the back of my head for some time...,ha! My gait/balance, dexterity, speech and swallowing are really compromised, although I'll NEVER give up or give in! I exercise (safely) for strength and balance, as that is the only thing that helps my ataxia (and allows me a sense of control). My husband and I are attending the National Ataxia Foundation (NAF) conference this weekend in Detroit, Michigan (I live in Michigan). I'm looking forward to hearing the neurologists, researchers and other health professionals from the University of Michigan, as well as others from out-of-State. I'm also excited to meet other people with ataxia, as I've never met anyone face to face with this. I will post any worthwhile information from the conference. This site is for advice as well as a place to "vent", due to understanding and support. It's a good place to realize you're not alone in this journey!

Rose please let us know about meeting people with ataxia. That would be so neat.

Lori, I definitely will !!!

Hi Jonas, You spoke of how you feel. Now we all can. You are right about some things. But it comes off as were not so smart. Ataxia SUCKS!!!!!!!!!! If I exercise in a day I am done. I'm tired. I need a nap. I cannot take care and do for my 3 children. My two grand kids. ( I babysit 3 days a week) Cook dinner. Clean up. Clean the house. Do the wash. Take the kids to 100 places. Shop. Ect, Ect. Now ataxia makes all this very very hard. We know to pick our feet up when we walk. (Doesn't work) Yes its a balance issue. Everyone does do most of this stuff. ataxia is so unfair and degrading. If I want to wine to somebody who knows what I am going threw. It shouldn't be classified as common sense!

Rose...I'll see you in Detroit.....Let me say this to everyone. Every aspect of every post is not for everyone. This is experience I've gained since my diagnosis 20 years ago, and 15 members of my family being affected. I am friends with Dr. Christopher Gomez at the U of Chicago...probably one of the best ataxia minds on the planet. I run the Fight Ataxia Project at We fundraise for the U of Chicago ataxia rersearch center, and I've helped at some of the classes there. The Fight Ataxia Project puts on various workshop/seminars 3 or 4 times a year in various cities, and I run the Chicago Ataxia support group. Not to say I know it all, but I'm pretty well experienced with many ataxias. Just sayin' if a non smoker sees an anti cigarette post, there's no need to get upset......the post doesn't apply to them. As far as ataxia itself is concerned, we all have different flavors of the same thing...some not so bad, some horrible. Basics however are pretty similar. Anyway I'll see you in Detroit, as I'm DJing the Saturday banquet/party.

Jonas, Is Dr. Gomez a speaker at the conference? If not, he should be, seeing how he's one of the best ataxia minds on the planet! Yes, I hope to meet you in Detroit..., ;o)

Well said Lori. Ahbee

Not this year, though he is on the medical board for NAF. He usualy does the medical pre conference portion. There is a medical conference before the AMM meeting. The conference speakers are mostly from the host area, in this case U of Michigan.

Jonas, Too bad, as I would have liked to hear what he had to say. FYI, my neurologist/researcher, Dr. Vikram Shakkkottai and speech therapist, Karen Kluin are speaking from U of M. There are some others that my husband has worked with, as he's a Health Physicist at U of M. There are a couple others from California that I've spoken with, via email, that are speaking, neurologist/researcher, Dr. Perlman and physical therapist, Cindy Corn, who invented the weighted vest (that's sold thru BalanceWear). Anyway, I'm excited to hear what the speakers have to say about ataxia! ;o)

Never said it doesn't suck. I agree it makes things hard. The problem is that many make it worse than it needs to be. Many do what they can, however many should do more. Many ataxians don't have a REAL understanding of whatt ataxia is, and why their body reacts the way it does. Peopple think of exercise as working out, and gym memberships. Nothing is better than walking, housework, and daily activities. You don't need to do stuff that makes you tired and out of breath. Stretching, basic YOGA, etc. Many are in wheelchairs, so there is chair yoga, Sit and Be Fit, isotonics(just flexing different muscles) any water exercise is can't fall. Meditation! Remember you are no longer in the box, so you have to seriously learn how to think way out of the box. Live life, andd don't be concerned with what others think. So many become depressed and reclusive. Don't want support, information, and are embarrassed at themselves, shamed by their families. I'm not here to talk down to anyone. I'm here to educate. Everyone is free to do what they want with the information I put out. Like I said, everything doesn't apply to everyone, but many things apply to most.

Perlman is great. Another good one is Sarah Ying from Johns Hopkins. Did an event in Baltimore with her. She is also presenting. Gonna be good.