The complexities of Living with Ataxia

Ataxia is a complex condition,  that many people don’t understand,  not even ‘medical professionals’.  Learning from a book or a few cases is hardly the same as living with it 24 hours a day for the rest of your life (or your whole life if it is a genetic type).

If you looked it up in a dictionary it would probably say it causes difficulty with balance and co-ordinating muscles and is a symptom of other conditions – such as MS, CP for example.  Ataxia is also a neurological condition in its own right and there are over 40 different types.  Each causes a slightly different set of symptoms and rate of progression. Even within a particualr ‘type’ of Ataxia there is variation in people on how it presents itself.

Ataxia’s of Idiopathic cause (in other words they haven’t a clue why you’ve got it) has an even bigger variation as it depends on what has caused it,  and if that’s not known the symptoms and rate of progression can be difficult to treat or predict.

One of my biggest difficulties is the constant fluctuating muscle tone,  somedays I have enough stiffness in back and legs to stand up as soon as I get out of bed.  I can walk with something to hold onto as long as I can manage to keep my balance long enough to get from the bed to the toilet or the bedroom to the kitchen.  Other days I find it quicker to just slide down onto floor and shuffle on bum to get into bathroom (have en suite doors in bedroom straight into adapted shower room/toilet) saves me having to hang onto rollator while I find my balance and get to the loo by which time I could be back in bed!  this is particuarly handy in middle of night when not quite awake enough to concentrate that hard on staying upright!

I’ve had a few painful falls landing between chair and bed and hitting ribs on push rims when trying to transfer half asleep and desperate for a wee! my theory is.. if I’m already on the floor I haven’t got as far to fall!!!

Getting showered and dressed is a challenge with limbs that don’t go quite where you intended them to.  Trying to desperately get your arms and legs into your clothes quickly cos your freezing is not much fun on a winters morning with minus temperatures,  when its so cold it hurts!

If my lower legs/ankles are still floppy by time I have got dressed I put leg splints on and special boots called Piedro boots these help keep my feet and legs in the right position and I can stand to get onto mobility scooter,  or use crutches or a rollator for a short while.  These each have their own difficulties.

splints and boots I wear so I can stand and walk a few steps

The rollator is great for around the house,  means I don’t have to be sat in the chair all the time as it has a seat on it and can sit and push myself from room to room with feet I can do this without splints on,  but with them on I can also take steps.  Problems I have with rollator cos of its design and the seat is I’m constantly hitting the back wheels with my toes as I tend to have a wide gait  to help me keep my balance.  It’s also nearly as wide as my wheelchair is,  so tight spaces are still a problem and its still difficult to fold.  However I have an instant seat whenever I need to sit.

Crutches are good for some situations cos if I’m struggling with taking steps like over a low threshold I can swing on them,  they are also good in tight spaces,  if just going to brothers house,  they fold to go in front seat with me and can swing a few steps from car into house.  However they are difficult to use around the house as my arms aren’t free to do things whilst using them and I don’t instantly have somewhere to sit when needed.

Vinyl, wood and laminate flooring is more difficult to walk on with crutches,  carpet and deep snow is easier as the depth of the snow supports the bottom of the crutch and your foot and its a soft landing if you fall over!  However you don’t instantly have anywhere to sit so distances have to be planned carefully to where you can stop to prop yourself up against something for a minute or sit down.  It’s also exhausting cos of the sheer amount of concentration involved in trying to stay upright and get one leg in front of the other consistently,  or even swinging on them takes considerable upper body strength.  The shortest walks are exhausting and take a huge physical effort.

A mobility scooter or electric wheelchair helps with reducing fatigue.  My neuro told me many years back that it was ok to use a scooter or electric chair for distance to preserve and manage energy levels as in the early days I was still trying to manage two walks a day with Inca.  It was exhausting,  walking over grass takes more effort to keep your balance or any uneven surface,  I needed a way to manage her walks without leaving myself exhausted and unable to do anything else for the rest of the day.

Ataxia doesn’t just affect my legs it also affects my arms and speech which as a signer as had big impact on communication,  it affects my ability to sign fluently to deaf friends, it makes my arm movements jerky which makes things like trying to use crutches more dangerous,  if arm twitches at wrong time as the crutch is moving you end up on the floor.

Once a fluent touch-typist at over 200 words a minute I now struggle to hit the right letter on the keyboard unless its got a keyguard on, or my forearms are supported by bed covers. I can manage laptop semi reclined in bed,  as front of laptop supports wrists and duvet supports forearms,  making them less shaky than when they are in mid-air.

I think the secret to surviving with Ataxia and developing compensation skills has been in researching and understanding how my body was working (or not working).

For example I recently discovered I don’t need as big buttons on my iPhone version of Proloquo2go as I do on the iPad.  How can that make sense?  Simply.. when it is in the case which makes it chunky and fills my hands to grip it,  I have more control of my thumbs which each ‘work’ their side of the screen.

P2G on iPhone in iMainGo X case

Due to size of the iPad screen my thumbs alone can’t reach every icon/button without me raising my arm, making it instantly more shaky as its unsupported, so the targets need to be a bit bigger.

the buttons need to larger on iPad version to give me a bigger target area

Living With Ataxia for the last 8 years has been a challenge I wasn’t expecting to have to suddenly learn to cope with in my early 30’s but by far my biggest ‘disability’ is other peoples perceptions of me.  What I should and shouldn’t be doing/be able to do.  I’ve had people saying ‘awwh she shouldn’t be on her own’..  I CHOOSE to live independently..  I’ve had people talking to me like I’m 4 years old, talking over me..  this has mainly happened when I have been in the electric chair particuarly if I have also been using the Lightwriter which was my first communication aid.

The iPhone did not originally have the apps/access I needed to be able to use it when it first came out (see iPhone blog), so I was given a Lightwriter by the NHS.  Its a shame it wasn’t out then and the iMain go case, it would have saved the NHS £3,200!!  The case both helps with gripping the phone and making speech output better for using it as a communication aid (full review coming later).

I found I got a different reaction using the iPhone,  I was in sporty style chair at the time as friend had taken me xmas shopping. I got ‘ oh wow.. is it that an iPhone?.. . it talks thats cool’ and got talked to like an adult asking for an item same as anyone else,  (once they’d recovered from the surprise of a ‘talking iPhone’!). I know a few other deaf people who use this program on their iPhone actually who are mainly sign language users but use it just to ask for stuff in shops etc if they have speech that is difficult to understand.  People who wouldn’t normally consider been seen with a ‘communication aid’.

Its odd I seem to be judged as more physically able when in sporty style chair or on scooter than in Electric chair,  but taxi’s won’t take big mobility scooters now and with all the swing gates and A frame stiles the council are putting up all over place accessing places like my local park and shortcuts is impossible on the scooter, so was left with no choice but to buy one.

Another thing Ataxia has had huge impact on is my finances,  luckily we had always been encouraged to save from young and I had to rely on those savings alot as getting equipment from NHS is likely getting blood from a stone!  Their rules for electric chairs is particuarly annoying.  You aren’t entitled to one unless you need it around your house too, so cos of the 90 degree angle between my bedroom and lounge (and scooter in hall)  getting a standard RWD chair from one room into the other is practically impossible.  A FWD however will do it easily,  however the NHS don’t seem to like flexibility they only provide a standard chair.

I had read a story of another woman getting a Genie standing chair funded by her PCT, but I have heard nothing back from mine,  not even a letter of acknowledgement.  So that looks like another £6,000 I have to find myself if I want the chair that would give me the best chance of the most independence and better health (benefits of standing chair)  from been able to stand for at least a full half hour each day. As the chair fully supports my body whilst standing I don’t have to worry about balancing and my arms are free to do jobs standing.

After been trapped indoors for nearly 2 weeks, unable to get mobility scooter out to get around the village and to shops cos of all snow I am reconsidering the X5 frontier all terrain chair, although that starts at £8,500 and doesn’t have a standing feature.  Would I still get up this icy road and my drive with 6″  of snow if I bought one of those instead of the Genie?  Hard to know as when  I rang up the guy he said they were unable to get to me cos of the snow!..  but could do it when it thawed.  so how am I meant to test drive it in snow/ice????

A standing chair would have bigger health benefits and be used daily for physio but also after been trapped indoors for nearly 2 weeks due to snow,  especially has I received no offers of help with walking Inca or getting food I have to consider needing a better way to get out, as winters seem to be getting worse and have virtually no support unless I pay an helper and I can’t see anyone only wanting a job for a few weeks when it snows.  (can’t afford full time helper all year round AND find money for new chair…  especially with all talk of cutting DLA and having to go through the changeover from Incapacity Benefit to ESA).

Maybe the title should have been ‘Can I afford to have Ataxia?’

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7 thoughts on “The complexities of Living with Ataxia

  1. Hi Kati
    I found your comment on ability to use laptop interesting.
    I use the front of L-top to support my palms too.
    I hit the wrong keys sometimes but not too often.
    To steady my arms I keep them tight against my side/body.
    I tried using a standard mouse on the computer in the library
    but it went all over the place and I couldn’t control the cursor.
    Maybe with practice I could use it but I can do all I need with my L-top.
    Bill xx

  2. Hi guys

    @Bill: yeah I try keep my arms tight to body I think thats why iphone in case works, the lightwriter or iPad on tray is wider and needs more arm movement to use them. I wish I’d thought of it before..still having said that.. Lexulous is easier to play on the iPad, cos its way too tiny on iPhone and I find it easier been able to touch screen directly to move tiles than lining cursor up with joystick on computer. I don’t know if a touchscreen would be any easier for you if you have a constant tremor?

    @scott: fancy another game of ‘Words With Friends’?

    KT X

  3. Hi Kati,
    Can you not use the voucher you are entitled to from wheelchair services to part fund a new chair, I am assuming that you know that you can take a voucher instead of the chair offered to you by NHS to fund an alternative chair of your choice.

  4. Hi Faith

    I sent a letter shortly after demo asking about funding or part funding via voucher, I’ve not even had an acknowledgement yet that they have received the letter.

    I sent quotation with it and explained about angle of doorways and difficulty getting RWD around house but FWD could do it.. no reply… so not sure what else can do if no-one answers to say yes or no? KT X

  5. You write so well of your experiences, Kati, and of the methods – old and new, that you find helpful for independence, mobility and communication.
    Great work.

  6. Hi Katie,

    Thanks for your input Katie, very much appreciated. I have had SCA for only 2 yrs, but very much identify with the fatigue you spoke about, I don`t need to do much at all before it sets in.

    Regards,

    Ross

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