I have a dream….

We all have dreams,  sometimes it involves visiting far away places,  other times meeting a favourite celebrity.

You never expect something as simple as been able to do things stood up,  to be one of them!

I can stand,  but I have to hold onto something with both hands to keep myself steady which means my arms arent free to use fully.  Trying to balance with one arm on walker whilst trying to get something out a cupboard with the other is no easy task.  The act of trying to balance yourself AND use your arms to do something leaves them extremely shaky and if you already have issues from Ataxia,  it makes a simple task almost impossible or at least very much more difficult than it needs to be.

I was thinking of upgrading my chair to one with a seat riser so I can stay in sitting position with body supported by chair and have use of both hands and arms. I have found through experimenting with different seating positions that I have far better control over my arms if my trunk is full supported and I don’t have to use my arms to help me keep my balance as well as whatever else I am trying to do with them at the time!

I looked at cheap chairs that come with standard van seat same as my Quantum Vibe,  the difficulty is because it doesn’t support me very well around my trunk (standard width seating with several inches each side) I still have to use one arm to steady myself when going up/down kerbs/bumps etc.

Searching for custom coloured chairs (cos I fancied pink)  I came across this pic of a pink dragon chair in the snow.

Snow has been another major Issue for me this last winter and after been unable to get out at all for 2 days this february I had been looking at all terrain chairs.

The problem is they are HUGE,  often much wider and longer than standard wheelchairs with huge wheels,  great if you got a big garage to keep/store one in,  but I don’t.  Even with seat riser function to use in kitchen the chair would take alot of space up in kitchen and it wouldn’t fit in office for charging (even if I could get one through the front door).

Then I spotted these pics (below) ,  this is the only chair on the market which lowers you down to ground as well as raising you up and you can also get a standing frame.

The potential for almost total independence again with this chair is huge.  Imagine been able to lower yourself to the ground at any time to pick up something.. Inca can pick some things up but if I drop stuff like cutlery or food she isn’t allowed to touch them.

I could get on the floor to play with her anytime, or play the sitting games on balance board not just on a good day when I got the strength to get myself back onto the sofa,  without pulling my muscles down my sides (which is absolute agony for weeks when it happens!)

Then been able to raise yourself to get into the cupboard,  without trying to precariously hang on to the walker with one hand and get the item out of cupboard with the other.

Imagine been able to stand to wash up,  change a lightbulb,  play on wii fit (without hanging on to a zimmer frame and having to sit back down every few minutes),  standing to carry washing out into garden and hanging it up from standing.

Things I used to do without thinking everyday and never imagined that been able to stand to wash up and hang out my washing would become a future dream!

This chair has the potential to give you back a level of independence you never believed would be possible again after having Ataxia for 8 years (wheelchair user for last 5).

It would be a good motivator to keep my weight under control as there is a 12 stone limit on the adults chair.  I’m not sure if it be too small,  apparently the adult seat can be up to 19″ width and I know my manual chairs aren’t that wide.. think my travel chair is only 16″ but I might ask to try 17 or 18 ” to allow for winter clothing and fluctuating monthly water retention!!

I’m thinking of asking for a demo so I can try it,  I’d like to know if it would possibly be an option rather than spending the next few years dreaming about it,  if it was never going to be suitable…. and after all it’s free… special offer for the day – a taste of freedom!! ..  so why not…   they also offer to help you with funding if its suitable.. of course it would need to fit through the swing gate into the park which would be the first biggest hurdle,  the next would be finding £16,000 to buy back my independence!

but a girl can dream…….   even total freedom around my own home for just one afternoon would be amazing!

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Choosing the right Equipment for YOU!

My house right now resembles a mobility store with all the gadgets and equipment in it,  but each item plays a crucial role in my battle to stay independant.

From items as simple as jar openers,  hobs built into worktops so I can do my own cooking, thermos cups with lids and straws so I can safely carry hot drinks from room to room without risk of burning myself or spilling it everywhere to High Tech Communication aids containing my medical information so I can be understood by strangers in a medical emergency.

My pride and joy is my beloved shiny iMac which sits proudly in my office and which I use daily with the help of Assistive software and special joystick and keyguard.

My scooter and electric chair are ‘my legs’ outdoors around the village,  to get up the hills,  over the fields and round the little local parks.  They give me the independence to walk my own dog and get to the local shops myself.

My chunky old rollator is great for sitting on and pushing myself around the house backwards to get from room to room and around the garden. Its not easily folded but the sturdy seat means I can put larger heavier things on it like boxes,  laundry basket,  my butt!

The larger castors mean I can get onto the grass with it to play with Inca without having to get electric chair out if I don’t want to and its great strength training for legs as the grass offers much more resistance than indoors.

Although I struggle with crutches for more than a few steps they are handy for getting into smaller toilet cubicles or from car into families houses to save them having to mess about with wheelchair when I’m gonna be sat on sofa all the time anyway!  So handy where I know I am going to have some human help available to steady me.

I have found the key to knowing what equipment was going to be best for me,  was understanding my own body.

When you are first diagnosed with a condition everything seems very overwhelming,  all the long medical names they (doctors/specialists etc) use, the thoughts of how you may end up and what would you do,  how would you pay for things you need like electric wheelchairs,  helpers wages etc.  Will you end up in a care home with no choice?  will you get separated from your beloved companions (pets)  if someone else decides you wont be able to look after them?

my 'little girl' and loyal companion

I thought the best way to make sure we weren’t separated was to train her as my assistance dog,  so I taught her to help me take off my shoes,  bring my slippers,  put them on footplate (if I was in chair),  put things in washing machine/dryer,  take them out,  push and pull things – light switches,  doors open or closed,  drawers open or closed,  help with undressing, carrying things,  put her toys away or move them out of way of my chair/walker.  Together we are a team and I am fully independant.

Of course,  there’s only so much a dog can do,  she can’t cook my dinner for me or help me with the computer mouse so I also studied Assistive Technology to see what was out there.  The problem I had when first looking was there was so much I didn’t have a clue where to start!

Salesmen will always try and sell you stuff you don’t need and convince you their product is exactly what you need,  after all they are working on commission!  So in the early days I ended up with some items that were totally useless for me and got conned into my first scooter ending up paying double for it and by the time I had finished paying for it,  it had broke down and could not be repaired.  Enter another salesman trying to sell me another I couldn’t afford but would only cost me a few pound a week!

Anxious not to make the same mistake twice and by this time online I looked to a forum for people with disabilities to see what they recommended and finally found ‘the real experts’.  However not all the information applied to me,  some people were paralysed which brought with it a whole different set of issues,  some were more mobile so how would I know which advise to follow?

My condition been very rare meant I met very few people like myself over the last 8 years.  I had to go back to study,  not a college course but my own body.  I started by looking up Ataxia.

Although I have had the typical Ataxic gait from the onset I didn’t have the constant shakyness (tremor)  but instead had more jerky movements of arms when trying to do things.  Research only brought up conditions I couldn’t possibly have either mine weren’t as severe or they were things you had to be born with or  not associated with ataxia.  In desperation I got back in touch with the Neurologist who sent someone from the Neurological Rehabilitation Team to my home to assess me.

This one was more helpful,  I learnt about ‘core muscles’ and stability and that I was trying to use my arms and legs to balance my body,  she gave me some exercises to do and I got an old zimmer frame to use with wii fit board (as seat on rollator gets in way when trying to exercise with it).  She noted my symptoms were more similar to a very mild case of athetoid CP.  I had asked her about this as on several occasions in public with strangers they had assumed I had CP. (Cerebral Palsy – usually something you are born with).

At last I now knew where to look and knew some more terms,  equipment that suited people with mild involuntary movements were often made more robust and ones for people with motor- co-ordination difficulties or Fine Motor difficulties often have bigger keys/buttons etc.

I had discovered Facebook and the Daily Strength network by this stage and found a few people with Athetoid CP to ask how they managed things. Again it wasn’t easy finding someone with exact same level,  many were much more severely disabled and needed switches/head mice etc to access computers or couldn’t use their hands reliably for anything and many were children,  younger people who had never known any other way.

Back to the drawing board and more research I discovered Adult onset Dystonia can also mimic Athetoid CP but start to come on in adulthood so emailed Dystonia association whilst waiting for reply I found some clips on YouTube,  again these people seem to have much more severe movements than mine were.  I still haven’t found anyone with a very mild case of this so I discarded that idea as I have no comparison.

One specialist has told me I shouldn’t discount the theory that I could have a totally unique strain of Ataxia due to it not been genetic and been caused by my Hypothyroidism, fluctuating levels could be causing the fluctuating muscle tone or I could have more than one condition and in some cases symptoms from one condition can cancel out symptoms from the other, or I may only have few specific symptoms from each condition resulting in an unusual combination of symptoms overall and causing confusion over my diagnosis (which has changed a few times over the years).

Finding equipment designed with specific set of symptoms in mind when you have a unique combination of symptoms is no easy task!  Some standard equipment has to be adapted and sometimes you can come up with your own solutions.

It has been a steep learning curve over the last 8 years,  but I have accumulated a great depth of knowledge on Assistive Technology and AAC and finally feel I understand how my body is working (or not working).  My creativity skills have certainly developed as I have had to come up with solutions for doing things and one of my greatest enjoyments has been able to pass on this information to help others.

home made grip to hold Nintendo DS stylus

Foam ball adapted to fit powerchair joystick, so can steer chair with wrist/lower arm instead of fingers

Pogo stylus fitted in weighted cutlery holder

.. used to access smaller menu's on iPad

Never Give Up… you never know what’s around the next corner!

I was writing a reply to a member on my Ataxia site,  which included giving background as she was new.  Only when reading it back did I realise how much I have managed to achieve in my life,  despite almost been written off as brain damaged before I had even got to the tender age of 2 years old!

age 2 and half - after 7 months on thyroxine I was able to sit up unsupported

My mum had Toxaemia (blood poisoning) whilst she was pregnant with me, as her blood group was Rhesus Neg and mine is O+

It seems this affected the development of my thyroid, obviously whilst she was carrying me I had access to her thyroxine stores but once I was born I was unable to make my own so was very ill, as they didnt’ find it until I was nearly 2yrs old. My auntie told me they did thyroid check as last thing before I was to be sent down to Great Ormond Street, London for a brain scan as they thought I had brain damage as I was unable to even sit up, totally floppy, not feeding properly, and no where near been able to crawl, walk or speak.

They found after a Thyroid antibody count that my thryoid hadn’t developed properly and had never started working on its own so I have been on thyroxine since 23 months old.

I had Epilepsy as a child too and as I was behind in development I first went to Pinderfields Hospital School so I could receive intensive physiotherapy and speech therapy.  I had to go to hospital every friday for blood tests as it was only way to check my thyroid levels.

My local school also agreed to let me attend part-time which eventually became full-time as the seizures stopped at around 7years old.  After repeating the same year twice,  I managed to catch up and end up back with my original class before moving up to secondary school.

I had about 9 years were I was relatively ‘normal’ for want of a better word!  I had mild stammer and little clumsy but I could walk fine,  ride a bike,  skate,  take part in PE etc.

After changing over from Paediatrics Dept to Adult thyroid specialist at 16, the doctor decided my thyroxine was too high as Dr Livingstone had always had it on the high side as to not stunt my growth (although I only got to 5ft 3and half fully grown!). After this I started to lose hearing and at one point was ‘profoundly deaf’ with over 100 decibel loss in both ears.  Again the dcotors took some persuading that my thyroid levels were connected to this happening.

My mum had to contact my previous doctor who had gone into retirement and ask him to write to the new one,  they restored my dose and my hearing improved a little but I still had to wear two hearing aids and I still struggled to work out what sounds were and particuarly speech. I went to a college for the Deaf so I could learn to compensate and learn work skills.  The then ‘Employment Training’ scheme funded my place there for 2 years.

I learnt sign although I could speak well at the time and this allowed me to access University via a BSL (British Sign Language) interpreter,  where it would have been impossible for me to keep up with lectures via lip-reading and trying to take notes.  For some reason I started getting symptoms of an aura from fits and absence seizures and I was put back on Anti-epileptic medication.  They had me on 500g Epilim and 500g Sabril.  I didn’t know at the time that Ataxia was a side effect of these drugs,  or even what Ataxia was,  but I had some very weird symptoms whilst on the meds.  Despite this I still managed to graduate with a 2:1 BA (Hons)  in Deaf Studies with Special Education and worked with deaf children,  and autistic children and adults teaching them sign to help them learn to understand language.  And to think the doctors almost had me written off before I had reached my second birthday!

By my early thirties I had been off these meds for a few years as the ‘epilepsy symptoms’ had vanished as mysteriously as they had come on. But I started having problems with my sight going in and out of focus,  I was sent for Evoked Potentials test to check for MS but it came back negative and the symptoms had worn off by the time I got the appointment in December 2002. We put it down to stress as my dad had passed away from cancer in august 2002.

In Feb 2003 I woke up hardly able to move and had to crawl to textphone to ring my brother,  I could stand up with help but was extremely shaky and slow the doctor took one look at me and admitted to me Neuro ward for emergency MRI,  again they were looking for MS,  thinking it was possibly a second ‘MS attack’ and the sight incident had been the first one.  By the next day my walking was better with a stick but still slow, it improved a bit over next few days but I always had to walk with a stick from then if was nothing to hold onto or I fell over.

By 2005 I needed a wheelchair indoors and out and used NHS vouchers to get a Quickie Easymax.It was a struggle getting around our tiny flat though,  I couldn’t get over grass with manual chair,  I had Inca by then so had got a scooter to manage her walks,  which was also parked in hall making it difficult to get chair past unless I pushed it past folded in half to get out front door and also bathroom which was by front door and too tiny to get chair in.

I had no idea how I was going to cope and I did on occasion wonder if Inca would be better rehomed,  my speech was starting to be more affected and they still had no idea what was wrong with me as once again they had discounted the damage my thyroid not working properly could possibly do.  I went on housing list to be re-housed and acquired services of an advocacy service for the deaf to help me with telling housing people,  doctors etc my needs and eventually it seems they decided I was right.  A full bloods panel showed my T3 levels were dangerously low and my TSH (Thyroid Stimulating Hormone -in brain)  was sky high as it was desperately trying to send messages to thyroid to make more thyroxine,  which it couldn’t do as it has never worked.

The Ataxia never wore off despite doctors saying I would go back to ‘normal’ once levels were right,  I was eventually moved into adapted housing in July 2006.

After a nightmare encounter with an ‘helper’ which I thought would never end,  I managed to get back to living fully independently in my new bungalow. Despite now also having mild difficulties with my arms  and Fine Motor Co-ordination I manage to do voluntary research on the internet for Living With Ataxia where I am one of the Community Managers,  I also run my own site ‘More Than Words‘ on Daily Strength and Facebook and recently taken post as Technical Advisor for AAC & AT on a forum for Moderators.

Despite my daily difficulties, my days are full with activities and not at all how I envisaged I was going to ‘end up’ in the dark early days when I had no idea what I was facing.

iPad useful for Ataxians?

I have had my iPad since the day before it officially was released in UK (I got mine a day early cos I pre-ordered).  As I have had it around a month now,  maybe just over – can’t remember what official release date was now (I’m hopeless with remembering dates and numbers), I thought I would do an update of my review on how useful I found it.

My main difficulties besides walking and communication is fine motor control and co-ordination so my Blackberry Storm has been getting a struggle to text from, despite using the biggest keyboard size and the built in word prediction and abbreviations.  iPhone’s were not as accessible when I got my Blackberry,  only having the qwerty on-screen keyboard in portrait mode originally and costing considerably more.  (I managed to get my BB Storm second hand off ebay for around £150 and just stuck my PAYG SIM in it).

Buying an iPad brand new for full retail price was a bit of an unknown risk for me,  it wasn’t that long since I was wondering whether I should get a demo of eye gaze to see if that would work for me if I started saving up for it.. I even considered adding windows to my beloved iMac (SHOCK… HORROR!!)  so I could put an eye gaze add-on unit for doing longer blogs.

However it seems my gamble paid off!

I have noticed a small improvement in my targeting skills with thumbs as long as forearms are supported  and games like scrabble (sliding the tiles onto the board) have helped improve this.

Scrabble on iPad

I have been using a small selection of simple free games, and puzzles to work on these too.

A free memory game has been useful and I am remembering more of the sequences in the later levels rather than just pressing randomly cos there was so many I couldn’t remember where they all were.  The enhanced version of ‘Simon says’ for iPad with 12 coloured squares instead of just 4 has been good and plays out similar to Ant and Dec’s Push the Button where you end up having to remember a longer sequence of colours.

One thing both Proloquo2go and my Lightwriter are missing are an ability to upload your own sound files which would be useful for Voice Banking.  when I first started struggling with my speech I recorded Inca’s commands in case I ever lost my speech completely, with the iPad I was able to use an app called ‘Tap Speak’,  you record by either speaking into the iPad (has built in Mic)  or playing/uploading a sound file and you can record your voice for prosperity or your kids/pets.

It currently only has one big button (virtual) to press but I was told by person who created apps that they are working on a new version/update for iPad which will allow multiple buttons on screen. I think this app was around £5.99.

Inca's commands in my voice (pre-ataxia) via the Tap-speak app

As Proloquo2Go doesn’t yet have word prediction either or compatible with textexpander I ended up also downloading a copy of ‘Speak it’ as its only just over a quid. That way if my Lightwriter is unavailable due to been sent away for repair I can also just type into iPad and it will speak.  It will need alot more abbreviations as there is no word prediction on ‘speak it’ either but still possibly be quicker than trying to remember which category to find words in when trying to build a spontaneous sentence on the spot.

In specific scenarios P2G is quicker as long as the exact words/sentences I happen to need are on the page within a few presses.    Having tried using both these system in real life situations I find the Lightwriter more suitable for an adult with a large/advanced vocabulary, who prefer to still ‘speak in proper sentences’ regardless of their method of communication.

The symbol systems are great for kids as children don’t speak in full sentences from the beginning and are often taught language within a specific scenario in speech therapy etc. However as an adult language doesn’t happen like that,  people expect you to reply or ask in sentences.

It would be good if one of the programs (P2G or speak-it) had BOTH word prediction AND ability to create abbreviations,  but the iPad is still fairly new and as these apps were originally only available on iPhone/iTouch with much smaller screens they have yet to reach their full potential as ‘communication aids’.  It is however an adequate back -up system and with a variety of different apps you can add the same features that some of the more expensive machines have,  including now been able to log into other computers and use your iPad as the input.

Overall,  I have found it very useful,  some apps would be useful on smaller device for using outdoors such as calling TapSpeak, P2G although I think typing and texting would still be an issue and not possible without either adding a keyboard which would make it less compact and portable,  or the ability to scan.

I definitely do better with touchscreen (of a certain size)  than a mouse alternative. A touchscreen app version of Intellikeys to access any computer (Mac or windows) would make a great accessibility app for iPad.