Friedreich’s Ataxia

What Do I Do Now?

These are very frustrating times for me as I struggle to come to terms with the fact that I have become a writer who can no longer write.

Friedreich’s Ataxia has robbed me of many functions that most of us take for granted, but the deterioration of my dexterity and inability to type freely is the most heart breaking aspect of my progressive condition. I have tried voice recognition technology and Eyegaze systems, but found annoying time consuming glitches with both of these potential solutions that deem them unworkable.

My Occupational Therapist is trying hard to find a solution to this problem, but she can’t perform miracles and keeps hitting the same brick wall that has been impossible for me to hurdle since publishing Every Silver Lining has a Cloud in 2013.

A few weeks ago she came up with a great idea when in discussion with the company Remap – who are specialists in coming up with new technologies to help disabled people live independent lives – she was advised to encourage me to be featured in the next series of The Big Life Fix with Simon Reeve. This programme brings together some of the brightest brains in Britain to try and solve problems that are affecting the lives of individuals and communities across the country.

This just shows the scale of the problem that I face – it needs a specialist team of inventors to conjure up a bespoke design to suit my individual needs. Nevertheless, I decided this was to good an opportunity to miss and with the help of my PA’s I wrote the following application:

 
I would like to register my interest in being featured in the next series of the Big Life Fix with Simon Reeve. 

I am a 40 year-old male who lives in Wrexham, north Wales with a progressive genetic disease known as Friedreich’s Ataxia.  I use a wheelchair for mobility purposes and I am an author and disability activist. 

My condition has deteriorated quickly since I published my first book in 2013.  I would like to write another book but I am having trouble with my dexterity and find it difficult to write.  it can take me up to 15 minutes to write a simple Tweet.  It is very frustrating to feel trapped in your own body. 

I have to rely on my PA support to help me type lengthy emails such as this by dictating my thoughts.  This is the best solution I can find at the moment as I have tried Voice Recognition Technology, but as my voice changes throughout the day – becoming increasingly slurred as I get tired – the programme does not recognise my voice.  I have also tried Eyegaze Technology but found problems when trying to use this software.  I found that I would be quicker trying to write by myself and also had problems with the light reflecting off my glasses. 

This is a scary time for me as I currently receive 86.5 hours of care and support per week but in these times of austerity this is likely to come under pressure following the recent announcement that the Welsh Independent Living Grant (WILG) is due to close in April 2019.  For further details about this please see the link below:

http://www.bbc.co.uk/news/uk-wales-politics-38385381?SThisFB

Subsequently, my support is under threat at the time when my progressive condition means that I need more assistance.  At the moment I am left alone between 14:00 and 19:00 which is  extremely frustrating.  Not only am I unable to type but I am also unable to communicate on the telephone due to my poor hearing and slurred speech.  I am also unable to go out of the house during these periods as I find it impossible to use the toilet on my own or access my wallet. 

I could dictate much more, but I feel you now have a basic understanding of the problems that I face every single day as I struggle to fulfil my potential and live life as I choose.

I watched the first series of the Big Life Fix and was very impressed.  It would be a dream come true to appear on the programme and for the team of inventors to help find a life changing solution to my specific needs by tailoring technology to suit me in a world where technology seems to be hindering and not helping me – for example I can not use touch screen technology due to my dexterity. 

I look forward to hearing from you soon. 

Many thanks

Nathan Lee Davies

After composing this email I was fairly confident that I would receive a positive response and daydreamed about appearing on national TV, forgetting that I am a left wing activist with a vocal dislike of the BBC and status quo in general. Subsequently, it can be no real surprise that I received the following email yesterday afternoon:

Hi there,

Thank you so much for applying for this series of BBC Two’s Big Life Fix.

Unfortunately, we will not be progressing further with your application at this stage, but if anything changes then we will of course get back in contact with you.

We would love to keep your details on file here at Studio Lambert so we can get back in contact with you should we come back for another series, or if there are any other shows we make that we think you might be interested in.

If you would like for us to remove your details, please let us know by replying to this email.

Very best wishes,

The Big Life Fix Casting Team.

I am now disappointed and without hope for the future. I will keep plodding on and dictating my words of frustration to my support staff while remembering that there is always someone worse off than me. I will keep fighting and do what I can to rid this land of the Tories and give disadvantaged people such as myself the opportunity to progress and thrive in a more balanced and progressive society.

 

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Sexual Functioning in Friedreich’s Ataxia Questionnaire

On my to do list…

A previously-circulated questionnaire on the sexual function in individuals affected by Friedreich’s ataxia have received a wonderful 80 responses so far. Researchers would like to thank those who have already participated in the survey, and encourage those who have not to consider doing so.

If you’re interested, the online questionnaire will take approximately 30 minutes and your answers are completely confidential and anonymous. You can withdraw from the study at any time before you have submitted your answers.
If you:

 
– Have Friedreich ataxia,
– Are aged 18 years or older,
– Are able to understand written English,

 

and would like to participate in the study you are welcome to proceed by clicking here. Your input will help to improve services for people with FA.

If you would like more information, please contact Principal Investigator Professor Martin Delatycki on martin.delatycki@vcgs.org.au or +61 3 8341 6290.

The Man on the Telly

I made my TV debut today and have spent the day enjoying plaudits from friends and family who are all very proud of me for coming across well.

BBC Wales Today: My TV Debut

After conducting the interview a few days before I flew into a blind panic as I’m my own worse enemy. On Facebook I wrote:

Been interviewed by the BBC. I suppose it went OK, but I’m never happy with my TV performances. It was all over in about two minutes and really I could have talked for 30 minutes about how Welsh Labour have sold former ILF recipients down the river. I did manage to have a go at Welsh Labour though so I shouldn’t worry too much.

Why didn’t I say this? Why didn’t I say that? I had a sleepless night…

***

The report was actually well-produced and presented with my name being thrown about as a well-known disability campaigner across Wales. I’m more than happy to accept this mantle and my five-foot Wrexham AFC badge was clearly visible on the wall behind me [Surely this makes me the most exciting talent to be associated with the club in the last couple of seasons?].

So job done, surely?

Yes, but..

I’ve never fully faced and accepted my own disability and it was a struggle to watch myself fighting to put a sentence together while sitting in a powered wheelchair. This is not how it’s supposed to be. I could see that Friedreich’s Ataxia is eating away at me, limiting my abilities and proving a tough opponent. This was difficult viewing for me as although I embrace and celebrate difference in others, I can’t accept my own.

Still, yet again I overcame the odds to put words into the mouths of BBC reporters and presenters while adding to my reputation as an activist who is not afraid to speak out.

In 2017, I will learn to accept Friedreich’s Ataxia is embedded in my body and even though it may have won a few internal battles, it’ll NEVER rob me of my spirit and win the war.

As long as we beat the English

stereophonics-1000-2

I should be on cloud nine. Wales have reached the semi-finals off Euro 2016 and I have tickets to watch Stereophonics performing at the Racecourse. I didn’t think anything like this would happen in my lifetime, but why did it have to happen now when my thirst for celebration is so low?

A lot of things are going on at the moment. Obviously, I am still gutted about Brexit and the consequences that this will undoubtedly have on my life, the implosion of the Labour Party over the future of their democratically elected Leader is also a cause for concern, while the progression of my genetic disease is causing great concern.

To be honest, I would have sooner have seen the UK remain in the EU and Wales suffer humiliation in qualification. This is something that I am used to and I am at a loss to know what to do when Wales are playing so well. Oh, how I long for the days of shit Welsh football under Bobby Gould when at least I could move about easier on crutches and throw a pint glass at the TV when we lost 5-0 in some Eastern European country. I cant even hold a glass nowadays.

My crippled body does frustrate me, but I think that the worse thing about living with a disability is the loneliness that it brings. Everyone seems to be partnered up except me and all of my best friends live hundreds of miles away (maybe that’s why they are still my friends). On top of this my best mate in Wrexham has just put his house on the market and is planning a move to the Wirral.

Apologies for being so glum when everyone else is so happy, but that’s the way it is at the moment. After all, it was the Stereophonics who said:

“As long as we beat the English, we don’t care”

We didn’t and I do care, but I just don’t feel like celebrating at the moment…

***

I just got back from the gig. It was a satisfactory way to spend a Saturday. I thought the second support act, Pretty Vicious, were the outstanding performers of the day. I was a little disappointed in the Stereophonics as I feel they were better on the previous three occasions that I have seen them.

I was impressed with the massive stage erected in the Racecourse Ground and it was a good atmosphere, but I was again hindered by Ataxia, especially in terms of my hearing. I did not like having to watch couples canoodling and am uncomfortable with joining in with a compulsory mass celebration. Individualism is what I was missing.

I wish I could stop thinking and just relax, but then I wouldn’t be me.

My Racecourse

Taken from the Wrexham AFC official website

Nathan Davies is a key member of the Wrexham Disabled Supporters Association, who is right behind our My Racecourse campaign. Despite a debilitating condition he does all he can to contribute to Wrexham AFC’s success.

He has agreed to pen for us a series of short stories over the summer detailing what the Racecourse means to fans and former players alike.

Here is the first and it the shares Nathan’s moving story of his My Racecourse memory against Barnet from nearly 25 years ago:

26/09/92

Wrexham v Barnet

Division Three

Racecourse Ground

Result: 2-3

Wrexham: Hughes, Jones, Pejic, Phillips, Humes, Sertori, Bennett, Owen, Connolly, Thomas, Paskin (Taylor)

Goalscorers: Bennett 35, Thomas 78

Barnet: Phillips, Howell, Cooper, Bodley, Barnett, Horton, Payne, Carter, Bull, Lowe (Stein), Showler (Naylor)

Goalscorers: Bull 21, 47, Carter 33

Attendance: 3,078

School days are supposed to be the best days of your life, but I can assure you that in my case nothing could be further from the truth. Academically there was no problem, but I was the victim of merciless bullies who I would do anything to avoid due to their repressive catcalls and punishing fists.

The problem was that I wasn’t like everyone else and in the black and white world of childhood being different is impossibly isolating.

I walked with a involuntary drunken stagger, which caused much amusement to my immature class mates. I was later to find out that my lack of co-ordination was caused by a progressive, genetic disease of the nervous system known as Friedreich’s Ataxia, but at the time clueless doctors just labelled me as lazy and clumsy. I had few friends and felt that no one understood me.

As you can imagine, I lived for the weekends and had started going to the Racecourse in the late eighties. One particular Saturday, my friends could not make it to the Cae Ras, so I had to decide whether to miss out on an afternoon’s entertainment – which had also been previewed on Saint and Greavsie – or go it alone…

It was ridiculously early. I purchased a copy of the matchday programme and spent the last few pounds of my pocket money to gain access to the near-deserted Kop. I had my choice of crush barriers to stand behind and after choosing a position on the upper left of this much loved terrace, I sat on the cold concrete steps to read about our 2-0 victory over Shrewsbury Town a couple of weeks previously.

This welcome three points against the Shrews had come against the formbook, which did little to suggest that season 1992/93 would be anything else other than our usual scrap amongst the dead men. Less than a month into the season we’d already suffered heavy-defeats on the road as Bury, York City and Gillingham had all scored four goals past us in three successive away defeats. How on earth would we cope against a second-placed Barnet side?

As the Kop slowly filled I realised that I was uncharacteristically relaxed and comfortable with those around me. I was not nervous or worried about being judged and took comfort from the fact that we were all there with the same aim in mind – three points for Wrexham. One bloke asked me the time, an old chap read the team line-ups from my programme and his mate shared his bar of Bourneville with me. Such interaction and unity with other human beings made a refreshing change from the assassination of my uniqueness by playground bullies.

I could be myself at the Racecourse…

I don’t remember too much about the game other than the novelty of Barnet boss Barry Fry running down the touchline in celebration of his side’s first half goals, Gary Bennett’s first league goal for the club, a disappointing attendance and the sliver of hope provided by Mickey Thomas when he reduced the deficit to 3-2 on 78 minutes.

We may have lost the game and left the ground full of frustration, but it didn’t matter to me, as I had enjoyed the afternoon of inclusion with my fellow Wrexham fans. This was my first real memory of acceptance by a group of supporters who have since become my extended family.

***
Inclusion and acceptance is what the Racecourse means to me. Over the summer months, I hope to compile a series of articles about our treasured Racecourse memories. We hope that this will promote the My Racecourse brand by showing how much this venue means to so many people and illustrate that it can be used by all of the community to create more memories in the future.

Game for a Laugh

Something needs to change.

It was my 39th birthday a few days ago and my pathetically weak circle of friends is in dire need of attention. This is due to a number of different factors that have combined to turn a charming, sophisticated and popular young man into an isolated recluse, stranded on the fringes of society.

I live with a progressive, genetic disease known as Friedreichs Ataxia and use an electric wheelchair for mobility purposes. This is a challenging condition but I have come to terms with it and successfully adapted my life around it. However, it is not so easy to find myself living within a disabling society.

For example, I recently went out for a meal with a carer. I booked a table in advance at The Druid Inn – a venue that I’d not frequented before and I was looking forward to a tasty meal that I had already chosen from their online menu. I got spruced up – a big job – and arrived on time, but when I got there I found that there was no wheelchair access. This is 2016 for god’s sake. I’m not going to let this drop and believe the landlords should make it clear that they’re running a wheelchair unfriendly establishment. Better still they could avoid negative publicity by installing ramps, improving toilets and making their venue accessible to all.

Just as bad is the fact that I can’t buy tickets for Public Image Ltd at Glyndwr University. This is just around the corner from my house but as it is standing only the bloke on Ticketline said that there was no provision for wheelchairs. [I’ve just returned from Glyndwr University where they apologised for my experience with Ticketline and sold me two tickets for the designated wheelchair section in William Aston Hall for the post-punk gig]

Neither am I helped by the fact that we live in such technological times. I have over 200 Facebook friends, over 300 Twitter followers and regularly update this blog to a legion of empathetic readers. However, in real life I have few friends to interact with and often the only people that I see during a week are my personal assistants.

In addition, I can’t work due to my disability so miss out on the social side of the workplace and the great friends that I made at university are scattered around the country or abroad.

So what can I do to improve this situation? How do I integrate further into mainstream society? I am already doing all I can with my involvement with Disability Wales, Wrexham Football Club and Outside In at Glyndwr University. Still, more needs to be done as I am still suffocated by loneliness and can’t afford to waste any more time feeling sorry for myself…

***

I’m embarrassed to admit that lonely nights in my half-empty bed are often spent watching programmes that excite and titillate me. I’m old enough to know better but I think I’m addicted. I just can’t get enough of the nostalgic thrills and outdated tension of Challenge TV – from Bullseye to Catchphrase via Family Fortunes and the quasi-intellectual Going for Gold. Add modern day classics like The Chase and Pointless and you have a heady combination that appeals to my competitive side and love of trivia.

I’m not sure that I’d ever apply to be a contestant on such a game show as I wouldn’t enjoy the pressure or fear that I’d embarrass myself by getting an easy question wrong on national TV .

I’d also struggle to be first on the buzzer and the majority of shows do not cater for disabled contestants. I wouldn’t stand a chance with any of the games on The Cube. So much for equal opportunities…

However, this doesn’t mean that I can’t enjoy board games based on some of my favourite shows. Indeed, classic board games in general, such as Monopoly, Trivial Pursuit, Scrabble et  al, are just as entertaining and conducive to positive social interaction. This is just what I need. [I draw the line at role-playing games as life with a disability results in life on the fringes of society as it is without marginalising myself any further by joining a fantastical group of middle-aged geeks with a vocabulary as challenging to understand and learn as Chinese]

I am therefore proposing the establishment of some sort of board game league 🙂 Basically, I just need people to play games against at a venue to be decided. I currently have a cupboard full of games for two or more players but without anyone to compete against they are merely gathering dust.

I have given this idea much thought and we could even have trophies and certificates for champion contestants. Is anyone interested in developing such a club with me? Not only would this enable you to improve your social life, playing board games also helps to develop strategic thinking and basic common sense while having a laugh.

Is this a good idea or am I simply a nerd named Nathan?

Dancing on thin ice

justin-moorhouse

 

OPEN LETTER TO STAND UP COMEDIAN JUSTIN MOORHOUSE

Dear Justin

On October 2nd 2015, I attended the Wrexham leg of your Destiny Calling tour at the Catrin Finch Centre at Glyndwr University and am writing to provide feedback about my experience.

On the whole it was a very funny show that was ably performed by both yourself and your support act for the evening was also a promising talent.

I appreciate that comedy is all about the fine line between the acceptable and the unacceptable, but I’m afraid to say that you strayed into unacceptable territory on more than one occasion and caused me great offence and embarrassment.

As you might have guessed I was the wheelchair user sitting on the front row of the audience at the Catrin Finch Centre. The evening began well as you included me in the show by mentioning my tank top and then inviting an amused member of the crowd to laugh at me after he dared to laugh at mention of your callipers.  I found this to be inclusive as the audience were laughing with us against the rogue audience member who should have timed his laugh a little more wisely.

However, later in the show you made a joke that I felt was directly against me and caused the whole audience to laugh at me. It was when you said that you had had a hip operation because you didn’t want to ‘let yourself go’ as much as me.  I have a progressive disability known as Friedreich’s Ataxia, which is a genetic disease of the nervous system.  It is a constant struggle to fit in to mainstream society and such comments only serve to underline my superficial differences and increase such struggles.

You also asked if the beautiful blonde female that was sitting next to me was my carer – thereby implying that I couldn’t be with a girlfriend/partner due to my disability. You wouldn’t have questioned other couples as to the nature of their relationship and my friend did not feel comfortable answering such an intrusive question.

I have written this email to try to alert you to the importance of the language and attitudes used in relation to disabled people in order that you are more cautious in future.

Good luck with the remainder of the tour.

Nathan Lee Davies