I think one of the most difficult aspects of having Ataxia is the amount of energy it takes to do things.
Here's just an average day, involving going to local shop and walking my dog.
I wake up around 7am yesterday, stretched out in bed for a few mins, stretching arms and legs and lifting them off bed. sat on rollator seat next to bed and used feet to push myself to back door, let Inca out then push myself through doors into bathroom. I find this easy way to move around house…
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Added by Kati on September 1, 2010 at 6:38am —
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The iPad has now been released in US and will be in UK at the end of May. Despite all the media hype you may be interested to learn of some features and apps that would be particularly useful for some Ataxians.
It has built in Screenreader which in itself can be an expensive product to buy for a computer costing a couple of hundred pounds. It also has a zoom feature to make pages easier to read and also to make smaller links etc bigger and easier to click on.
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Added by Kati on April 27, 2010 at 7:11am —
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I haven't written a blog on here for ages, didn't realise how long ago it was!
I have had my 'head in the books' so to speak or rather glued to the computer screen, doing some serious research in hope of finding further options for myself and others with Ataxia.
A difficulty for adults with acquired conditions is finding the funding for things they need especially communication aids which even the cheapest can be £2,000 or more.
As communication is particularly impo…
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Added by Kati on April 1, 2010 at 11:51am —
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As you may have read on previous blogs, I had some remaining issues with Lightwriter SL40 for some time after purchase. I am happy to say they have all been resolved!
My SL40 was one of the first off the production lines and we initially had problems getting the Environmental Control to work, though it didn't help that we were pointing the remote at the wrong bit for it to learn the codes!
I also originally only had single line display and it didnt scroll, this was problem…
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Added by Kati on March 18, 2010 at 11:54am —
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Glad the snow has cleared, although someone told me more is forecast, hopefully it will only be light again and won't settle for long.
I couldn't remember whether pancake Tuesday was last Tuesday or next Tues but they were selling the stuff in shop to make them so I got some stuff and made
them today (just in case I missed them tuesday.. lol) If its this
Tuesday coming, I'll have them again for lunch on Tuesday!
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Added by Kati on February 6, 2010 at 6:23am —
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You may remember a while back I did a post on the then dubbed 'MacTouch' by apple and its potential for Ataxians as a portable communication device.
It is almost here! Announced on 27th Jan by Steve Jobs (big apple man.. lol.. not sure of his official title!) the new 'iPad' will be released in two versions.
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Added by Kati on January 30, 2010 at 8:30am —
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We have really deep snow here, so I haven't been able to get out for 2 days, the snow in drive is half way up Inca's legs so no way I can get the scooter or powerchair up there.
She has been playing in the garden though, I sit in doorway (my bedroom has door into garden) and chuck some of the snow that's in…
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Added by Kati on January 6, 2010 at 7:35am —
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Well... I made it through christmas! I wasn't sure after pulling my side Christmas Eve. I had just been getting dressed but my back muscles were stiff and I was cold I always seem to pull the same side I don't know why.
It was very painful, even getting to loo was a struggle i spent all day laid on hot water bottle and with painkillers. Luckily it had eased off by christmas morning and no more snow either so I managed to get Inca around the village by sticking to the main roads on scooter and I…
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Added by Kati on December 26, 2009 at 2:30am —
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When your condition seems to progress fast from the onset and you aren't sure how much you are going to be left able to do it is easy to give up and think 'there's no point starting that new hobby as I wont be able to do it for long' etc.
So finding a new hobby based on what I like now and what is adaptable to many levels of physical ability has proved a challenge but I think I have found it!
Based on my enjoyment of water colour painting but difficulty with the finer aspects of drawing detail…
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Added by Kati on November 28, 2009 at 7:30am —
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Got up this morning to go to shop, scooter had been on charge since 6pm last night.. well over 12 hours (9am when we set off). Before we even getting off estate needle was going into red and by time we were reaching main road I was worried about getting stuck on main road with traffic so turned round and come home.
As I needed milk I had to risk getting to nearest shop with chair. Problem is with it been a country lane I cant get on the pavement until half way down, there's a blind bend with ca…
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Added by Kati on November 8, 2009 at 4:37am —
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The problems I had with NHS chair and the chair I swapped it for with vouchers was they didnt fold small. Even with wheels off and frame folded in half you still had awkward length to lift and it took both me and helper (i had one at time) to lift it into their boot and they had to keep folding back seats down.
At the time I could just about balance holding on with one hand onto side of car whilst helping to lift chair in with other.
When my brother announced he was getting married and the rec…
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Added by Kati on November 6, 2009 at 5:53am —
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Been a busy few weeks here.
Two weeks back I went xmas shopping with a friend which is always exhausting but good for a change of scene. We go to a shopping centre which is about 30 mins from me (depending on traffic). I'm not that good at travelling these days and always seem to feel travel sick even with short journeys but fine as soon as I get out of car.
I have to go in my manual chair that folds small to fit in her car so just getting the chair together with levers on is a bit of a workou…
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Added by Kati on October 27, 2009 at 9:30am —
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Its an old saying that children adapt quicker to disability than adults do. Is it only the age factor? Or is it something they do that we don't tend to alot as adults?
I'm talking specifically about PLAY.
It's known that children learn through play, so I'm sure that children with disabilities also learn to adapt through play too.
As an adult who acquires a disability later in life, we are often bogged down with issues of how we we will do the housework, get to work, get the kids to school, wa…
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Added by Kati on October 7, 2009 at 6:21am —
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After going deaf in my teens and having friends who were born deaf and relied on sign language I was aware for years before my speech was affected by ataxia, of the ‘communication barriers’ that existed between non-verbal and speaking people.
I was often ‘interpreter’ for my friend and people would speak to me rather than her. Been young and inexperienced at lip-reading myself at the time she would teach me tricks like going round shops looking for the assistant who looked easiest to understand…
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Added by Kati on September 26, 2009 at 10:02am —
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I thought I had posted about these after I got them but must have forgot with everything going on.
I got some Weighted Wristbands made from the Helping Hands company, they make gripping aids for quadriplegics for gym equipment etc and also gripping gloves for children to use on bikes and people with other conditions that cause weakness of grip so that they could do things like holding gardening tools.
Originally these items are not weighted so they had to make these for me specially. They are…
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Added by Kati on September 14, 2009 at 9:43am —
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I got the Headmouse Extreme dropped off last Friday, it came with laptop mount so connected it to Macbook.
Ideally that was the one I would want it for, as idea was to use that when pain is really bad in which case I am usually laid in bed. I don't have a phone point in there so can only get online with wireless from bedroom.
However since that day I lost my network it took me two days to get back online and soon as I reconnected Headmouse for another practice Sunday I lost it again.
I've man…
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Added by Kati on August 11, 2009 at 5:00am —
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Apparently a green government paper is going through to stop paying disability benefits to the person and instead give them to social services to pay for what ever level of help they say you need.
This would make it impossible to remain independent, if you saying you don't need social services then they are going to question why you aren't going to work etc, but what if you prefer to use your money to get equipment to stay independent like buying a scooter with it to get to supermarket yourself…
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Added by Kati on August 7, 2009 at 3:42am —
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This weekend I started work on the painting I wanted to have a go at.
I worked on the outline friday, so I had a rough idea of placement, I used the wrist weights to help steady hands and remembered advice to keep arms closer to me and supported so I had easel board rested on my lap on top of V cushion which supported under arms too. This helps to reduce tremor and/or jerkyness
Today I did the base wash which was wet on wet so you have to work fast but it doesn't take as much detail just putt…
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Added by Kati on July 12, 2009 at 6:25am —
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I got my first Mac off Ebay 5years ago. I didn't have any co-ordination problems at this time so had no trouble with the keyboard and smaller trackpad on the Clamshell iBook.
The older style iBook had keys closer together and small trackpad
As my ataxia started and progressed I s…
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Added by Kati on July 3, 2009 at 5:30am —
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Its been a while since I have written a blog with one thing or another going off.
Had a hectic weekend for my 40th birthday which took a week or so to recover from then had equipment breaking down, latest is my cooker hob which trips the electric at mains everytime i try and turn it on. Waiting for Housing association to come back and repair it or replace hob.
Then I noticed a bump on Inca's head it just looked like a spot you get, the vet took her to surgery to lance it and gave her some anti…
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Added by Kati on July 2, 2009 at 9:54am —
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