Ataixa support groups

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Permalink Reply by Patsy on February 27, 2010 at 4:04am

I bought some ladies golf shoes with cleats on eBay to help with walking on icy ground - they look like trainers. Havent ried them yet but think they will be useful on country walks.

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Permalink Reply by Kati on February 27, 2010 at 4:44am

LOL Patsy I'm laughing at thought of your husband pushing you up a hill by your bottom! I can't walk that far anymore but we have a similar scenario when my brother is trying to get me over the doorstep into his bungalow on crutches.

He holds me on right side so I don't lean too far as I always tend to start with getting left foot onto step first then puts his hands behind my bum and shoves me upwards as I try to get other foot into house usually with sister in law infront so I don't go to far forwards, just as well they only have one small step into bungalow! The in-laws house is harder cos step up is alot deeper and then if I need to go to loo I got to go up and down their stairs on my bum one step at a time, cos I just don't trust my balance when standing to not come hurtling down the stairs! Have hard enough time staying balanced on a flat floor even holding to things.

I think that has to be one of the most frustrating things cos I know I remember how to walk but if i tried and jumped up off sofa and set off walking, I just landed in a heap. (I'm over trying this now to see if memory would make it work! - but had lot of falls in early days from attempting this)

Kati
p. s. I think I just had idea for new post!

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Permalink Reply by Carol Gow on February 27, 2010 at 4:00pm

Hello Kati
Why does one step cause so much trouble? The bungalow I live in has one step into the porch, then you go through the front door. I have grab rails in the porch but getting in is still a military excercise. You'd think I was tryng to scale Everest!!! There is a step from the lounge to the conservatory, if you saw me trying to negotiate that - well!! The garden was flat except for a step that was about the thickness of a paving slab ( it was concreted in yesterday, now it gently slopes away) and that was murder!. I can see me getting threshold ramps in the near future.
Oh well, battle on....
Regards
Carol

Kati said:

LOL Patsy I'm laughing at thought of your husband pushing you up a hill by your bottom! I can't walk that far anymore but we have a similar scenario when my brother is trying to get me over the doorstep into his bungalow on crutches.

He holds me on right side so I don't lean too far as I always tend to start with getting left foot onto step first then puts his hands behind my bum and shoves me upwards as I try to get other foot into house usually with sister in law infront so I don't go to far forwards, just as well they only have one small step into bungalow! The in-laws house is harder cos step up is alot deeper and then if I need to go to loo I got to go up and down their stairs on my bum one step at a time, cos I just don't trust my balance when standing to not come hurtling down the stairs! Have hard enough time staying balanced on a flat floor even holding to things.

I think that has to be one of the most frustrating things cos I know I remember how to walk but if i tried and jumped up off sofa and set off walking, I just landed in a heap. (I'm over trying this now to see if memory would make it work! - but had lot of falls in early days from attempting this)

Kati
p. s. I think I just had idea for new post!

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Permalink Reply by Kati on February 27, 2010 at 5:28pm

I think cos when you take a step you not only have to move your leg, but your centre of gravity changes especially if you tend to lean further in opposite direction in order to lift your leg over the step, then you got to readjust your balance with one foot in an higher position than the other, keep it whilst you try lift your other foot off the floor onto same step or further forward just over the threshold.

I guess we take it for granted when we can do it so easily as soon as the thought comes into your head (before we got ataxia) but described as above i guess it sounds like some technical scientific exercise.. lol. Speaking as well, is said to be one of the most complex things our brains do due to the multiple muscles and areas that are involved just to say a word or sentence. I saw it explained once step-by-step I'll try and find it again for you tomorrow.

we take it for granted when we are young and fit and dancing or doing karate etc (just think how much co-ordination they take to do) but when everything is working as it should, it happens so seamlessly. Even things not as physical like playing a musical instrument or been able to touch type fast, this is why Ataxia seems to affect so much of our daily lives. I think it must be an interesting condition from point of neuro scientist etc as it shows how things work together and what can go wrong when even one small part of the brain is out of synch with the rest.

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Permalink Reply by Patsy on February 28, 2010 at 4:57am

Yes indeed Kati and that is why there is a lot of late onset ataxia - as we grow older we cant do things as quickly - what we used to do on overdrive, we now have to think about. It's exactly that thought process that you are explaining which knocks are confidence and makes things worse.

I know that I can do things as speed but if I fall, I injure myself more severely - bones break more easily when we are older too. ;o(

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Permalink Reply by Kati on February 28, 2010 at 6:55am

Hi Carol
Here it is, thought I had covered it before
http://www.livingwithataxia.org/forum/topics/ataxia-and-speech

KT X

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Permalink Reply by Kati on February 28, 2010 at 7:09am

Hi Patsy

Yes, I relaise things get harder as we get older, but I have only just turned 40 and things started getting noticeably difficult at around 33 when I was still quite active, doing around 5 mile a day with Inca and 4 hour on sunday morning at working dog trails, plus walking there and back. It's not something I was expecting at that age given that I was quite active.

Late Onset Ataxia was at first dismissed as I was told it usually starts in persons 40's/50's, they were originally thinking it was MS as I was in wheelchair by time I was 35. I still consider that as quite young! Wasn't quite part of my life plan, I was kinda expecting to still be able to walk and speak until at least pension age!! Though it sometimes feels like I'm already near the end of my life as not got many other facilities left to lose... lol!!

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Permalink Reply by Patsy on February 28, 2010 at 7:24am

Yes Kati it is sad that you have been affected so young - I do feel quite humbled when joining in discussions with those so much younger and more severely affected than myself. However, hopefully, you enjoy the contact. The joy of online communication is knowing that if I say too much, it can be ignored and deleted without my knowing. In face to face conversation, I get quite paranoid about saying the wrong thing and consequently keep quiet. I have always been over sensitive. Online groups and forums have made such a difference to my life - I like to think I have mellowed in 'old' age [whatever old is!]
A very dear girl friend has recently been diagnosed with Motor Neurone's and that has made me count my blessings.
Your input is of immense importance to many on here Kati - bless you xx

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Permalink Reply by Carol Gow on February 28, 2010 at 7:28am

Hello Kati
Thank you much appreciated. I am off to a 'Bling' sale held in aid of Gables Farm, so I will read and inwardly digest when I come home. Andrew is dreading it, he knows I will end up with a lot of something I don't need. Still all in a good cause.
Regards
Carol

Kati said:

Hi Carol
Here it is, thought I had covered it before
http://www.livingwithataxia.org/forum/topics/ataxia-and-speech

KT X

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Permalink Reply by Carol Gow on February 28, 2010 at 3:23pm

Hello Patsy
Whilst I have not taken your message lightly I did laugh when you said you had mellowed over the years. It reminded me of a conversation I had a few years ago with a Catholic priest in Glasgow. During the conversation, he said that most people mellow with age but just occasionally some will 'mature', he went on to say 'unfortunately my child you have two' - My Husband hails from Glasgow and my Mother-in-law lived there all her life - enough said!!!
Regards
Carol
PS the stories I could tell, little Alice pales into insignificance!

Patsy said:

Yes Kati it is sad that you have been affected so young - I do feel quite humbled when joining in discussions with those so much younger and more severely affected than myself. However, hopefully, you enjoy the contact. The joy of online communication is knowing that if I say too much, it can be ignored and deleted without my knowing. In face to face conversation, I get quite paranoid about saying the wrong thing and consequently keep quiet. I have always been over sensitive. Online groups and forums have made such a difference to my life - I like to think I have mellowed in 'old' age [whatever old is!]
A very dear girl friend has recently been diagnosed with Motor Neurone's and that has made me count my blessings.
Your input is of immense importance to many on here Kati - bless you xx

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