I am always looking for new ways to describe my feelings when trying to stand and walk; a recent visit to neuro physio gave a new idea.

I was explaining to neuro physio, Leona, how feeling upbeat and positive caused me to have two falls. I would not have fallen had I been using walking aids.

Leona replied that her skiing instructor once told her that, if you dont have falls, you are not trying.

I think this is a good analogy as I do feel like I am walking with ski's on.

I cannot make a turn of direction without careful thought which is why I fall over. My mind is turning direction but my feet are not.

Know what I mean?

I know what you mean I have to treble think before I make move.

Yes I do and you are right on regarding the skiing analogy. One of my worst falls, with major cuts and bruises was when I forgot about my CA and started running after some litter let loose by someone in a parking lot. OUCH! What a fall!

I try to live with the CA without focusing on it all the time - but the falls have been less severe - my cane serves as much as a reminder as a walking aid now.

I know what you mean - I'm the same way! I really have to think about where I am going, and try to plan ahead if there are turns coming. I also have to consider the type of ground I am walking on.

We’re all different and experiencing ataxia differently, but I feel safest w/my walker, both inside and out!

Then, if I walk legs far apart, I don’t look so funny! Hope this helps. Best to you for trying!!! XO

thanks for all your responses. I too prefer to use walker outside so I 'look' better and feel more confident but am trying to manage without walker indoors now. xo

Hi Patsy, I know exactly what you mean! I too must think before turning! Ataxia causes me to think about moving in general! ;o)

I think you are speaking for all of us who are fortunate to be able to walk if only for a short distance. The concentration on walking and changing direction has to be complete. Unfortunately sometimes we fall over, we have to be like stunt men/women and know how to fall without doing too much harm. (another line of work for us!!!!)

I am going to imagine I have ski's on now... I think that will help me make better turns ;) and yes! I do realise how lucky I am to still be walking at my age. I always thought SKI-ing stood for Spending the Kids Inheritance but... it has taken on a whole new meaning now. Actually, we have already squandered the kids inheritance. :(

I learned in working with Dr. Tom Clouse to point and lift my knee's in the direction I want to go. That not only helps me walk but not to trip at all anymore. I shared his thought with a friend that uses a walker and she tried this, and was thrilled she could turn around because she couldn't for years. At first it was challenging to concentrate on using my knees but it works so I've gotten used to it. It works for any movement disorders not just SCA ataxia.

Try it to see if it will work for you. You don't have anything to loose right? Just make sure you will be safe doing it.

Check out his website about that. He address that in #3. He really has great thoughts that seem to work well.

Thanks Jeannie.. sounds logical but havent heard it before. xo

it's a pretty good analogy too about being aware of lifting your feet. Trying to step over things or up (on to steps etc) I frequently misjudge even when I'm having a pretty decent day as far as balance. I can no longer just move about without thinking. I may be able to walk by my own power but it takes effort and concentration.

I shall try this out I panic stepping over a leaf.or our wonderful pavements the council maintain so lumpily well.

Exactly so.. that's how neuro explained it to me.. there is a delay in tracking messages from back brain to front brain. We can do many things on 'autopilot' but once we hesitate and engage brain, we stumble or shudder. We need to concentrate on every movement which is why we are so exhausted.

If only my parents had told me to pick my knees up instead of 'pick your feet up' !!

I tell people that my gyroscope has stopped working. It usually gets a laugh but I know they really don’t understand. When I fall it’s as if it’s because I have forgotten to remember that I have Ataxia and I have responded like a pre-ataxian and there’s nothing will stop my falling except for a wall or floor. I agree it’s much safer with a walking-aid.

People often ask me to try and describe the sensation I am feeling and the description I use is imagine having someone holding your feet to the floor by your ankles and trying to walk. My mind still tells my foot to move forward but the result "feels" as though there a force hindering my efforts.

Ataxia feels to me like walking with pillows on the bottom of my feet!

yes, I always think before moving, not automatic anymore. neurotransmitters./coordination messed up.