Friedreich’s Ataxia

Emergency on Planet Earth #37

I WILL WRITE A NUMBER OF EMERGENCY ON PLANET EARTH BLOGS THROUGHOUT THE TORY SPONSORED CORONAVIRUS CRISIS.

 What follows is a random collection of thoughts from a human being trapped in 21st Century British society.

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I am absolutely over the moon that I have just employed another personal assistant, to join my small team of staff. After losing three valued employees in March, I have endured a very stressful period where I have had to stretch the limited resources that I have, to ensure I receive the 24/7 support I need.

It is such a relief to have found someone that I can respect, and receive the same respect back. I had been messaging agencies, as it seemed that I would never find the right individual to work with. Of course, only time will tell if I have struck gold, but the early signs are very encouraging.

There are still hours available, but not nearly as many as there were. I also have another member of staff due to return from maternity leave soon, so all of a sudden everything is looking rosy as I try to establish the 2:1 support that I really need to meet my physical and mental wellbeing needs.

A good example of why I need 2:! support came the other day, when my electric wheelchair started playing up. I called the engineers, who said that they would make an emergency call, as long as I was able to get out of the chair while they made adaptations. This is a standard request, made with my safety in mind. Unfortunately, I was unable to vacate my chair as I only had one support worker present. Hoisting me out of the chair and on to a bed or shower chair, is a two-person job in order to comply with health and safety regulations. I was subsequently forced to arrange an appointment for tomorrow afternoon, while hoping my chair does not give up the ghost in the meantime.

I will achieve my ultimate goal of independent living, supported by the Social Services and Wellbeing Act, in the end. It just might take me a little longer than expected, after starting my crusade ten years ago…

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Below, I have share a video that I found on YouTube, that quickly encapsulates Friedreich’s Ataxia. This is the progressive, genetic disease of the nervous system that I live with, so I thought you might be interested. It is only a short video, so I have also added a more complex video that explains all in a scientific manner. If you are interested then you may wish to watch this, but it even confused ME, so I don’t blame you if you don’t bother.

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This was an interesting post that I read this morning, from the Debatedly Dateable blog about dating in the Covid era. I should be so lucky…

The Human Right To Dignity

The following article dates from Friday, 15 April 2011 and is taken from The Broken Of Britain blog. This was a blog written by the late Dr Rhydian Fon James and his words are as relevant today as they were nine years ago.

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To read a biography about Rhydian, please click the following link. I would recommend reading all about this prolific inspirational who achieved so much before tragically passing in January 2016 at the age of just 31. Like me, Rhydian lived with Friedreich’s Ataxia. 

It is encouraging that the social care landscape has changed for the better in Wales since this article was published, as disabled people are now protected by the Social Services and Wellbeing (Wales) Act of 2014. In addition, the Welsh Government have made a commitment to the Codes of Practice to Article 19 of the UN Convention on the Rights of Disabled People.

I have now received my ‘independent reassessment’ from ICS and WCBC and am working behind the scenes to sort out an appropriate care package. I do not want to say too much at this stage as I need to concentrate and stay focused on the negotiations ahead.

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The Human Right To Dignity

This week was meant to be a quiet one, with Parliament in recess; no pressing issues on the news agenda; no MPs to brief. Meant to be. It hasn’t quite worked out this way, and we’ve all been busy preparing the continued campaign. This has meant that I haven’t had a chance to write about an interesting court case that’s been on my mind for the last couple of weeks.

Last week the Supreme Court heard an appeal case with huge implications for disabled people who receive packages of support. The court heard the appeal of Elaine McDonald, whose care package was cut by Kensington and Chelsea council even though it had assessed her as needing that support. McDonald became disabled following a stroke in 1999 and later broke a hip in a night-time fall. She had been provided with a weekly package of 22.5 hours of daytime support and another 10 hours of care seven nights a week.

A needs assessment by the council found night-time care was essential to provide supervision to prevent her falling while using the commode at night, due to a bladder condition. But in 2008 the council said it planned to cut her care package, and said she could be given incontinence pads instead of an overnight care worker, even though she is not incontinent. In November, the Court of Appeal ruled that the council had not breached care laws, McDonald’s human rights or the Disability Discrimination Act (DDA) by cutting her support.

The Supreme Court confirmed three weeks ago that it had granted her leave to appeal. McDonald’s case is being funded by the Equality and Human Rights Commission, which said in November that it feared other councils would use the judgment to “reduce community care and services for disabled people”. The Supreme Court’s decision will not be handed down for a few weeks yet, but it will be massively important for anyone who gets a care package from their local council.

This is because the Court of Appeal had found that a council could simply review a service-user’s care needs and then reduce their support, without needing to conduct a new assessment. The precedent set by this case would affect all service users. At the moment, if the council want to cut a person’s care package, they must show that their needs have changed and that they are thus entitled to fewer hours.

As service users will know, councils have been anxious to cut costs in recent years. This has led to a great deal of pressure to cut care packages, and the near-impossibility of new care packages being offered, but the need to re-assess has slowed the austerity zeal. This is because, regardless of whether they wish to cut, councils must show that the service user’s needs have lessened prior to cutting, and a council cannot be considered to have conducted a lawful assessment simply by reviewing a disabled person’s care package.

If the Supreme Court were to uphold the Court of Appeal’s decision, it would give councils free reign over decisions to cut care packages. It would also mean that it would be more difficult to argue that the refusal to provide care was a breach of her human rights to dignity and to a private and family life.

You might think that forcing a disabled person to, effectively, wet themselves at night when they are not incontinent is humiliating and degrading. But when councils are hunting for possible cuts, it may not be illegal for councils to cut care packages and force just that outcome.

Searching for Someone…

It sounds like a cheesy pop lyric from the 1980’s. You can imagine a clean cut boy next door staring whimsically out of a train window while he desperately tries to track down the missing person in his life.

Fast forward to the modern age, and this mythological song video that never was could accurately depict my current search for the missing piece of my staff jigsaw. I probably need more than one person, but you get the idea…

I really don’t know why I am bothering as I have never really had much joy via social media in the past, but I have to do something. What worries me is that we are living in an increasingly selfish society where individuals are not bonded by a common goal. There is no pride or sense of attainment in helping your fellow man. You would have thought that at £9.50 an hour there would be plenty of people willing to assist a strong willed individual to reach for the stars, but this is life in the 21st Century. You are out there somewhere, it is about time you revealed yourself.

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I am STILL in search of new staff to work alongside me as a personal assistant. This is a fulfilling role that gives you the chance to make a difference to someone else’s life. I am looking for someone who is punctual, reliable, a team player and can be flexible. Word processing skills and a full driving licence are ABSOLUTELY essential to help me get the most out of my life. 

There are between 16-30 hours available, though there is the potential for more hours to cover holidays and sickness. This is an ideal opportunity for a student looking to gain experience in social care sector or any empathetic individual who wants to put their time to good use.

If you are interested in this opportunity, or know someone who may be, please get in touch via the Contact page, Facebook or Twitter. Good luck.

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Rate of Pay: Flat Rate: £9.50 per hour  – Weekly Hours: To be discussed at interview.

About the employer:

I am a sociable 42-year-old man living in the Wrexham area. I use a wheelchair and live with Friedreich’s Ataxia. Subsequently, I require support to remain independent. I am an author and disabled activist with a good sense of humour. I remain ambitious and adventurous. I enjoy company and I like to go out socialising.

Summary of duties:

To provide support to access various social and recreational activities. You must therefore have a clean driving license. You will need to support with personal care, including toileting, washing, dressing and preparing meals. I am a very creative individual and require support to develop my ideas. Due to my poor dexterity I struggle to type quickly – as a writer this is most frustrating – therefore you should have good word-processing skills.

A full driving license is also required as I often attend meetings throughout the North Wales and North West area.

Support with gardening and household tasks.

The post will include 5.6 weeks paid annual leave (pro-rata)

Police records check funded by the employer will be required.

The person I am looking for:

The ideal person will have a good sense of humour and should also display plenty of energy, initiative and enthusiasm. In addition, applicants should be patient and trustworthy with a flexible and empathetic attitude. A positive attitude and clear understanding of confidentiality is essential. Promoting my independence will be the main focus for any support.

You must be reliable, friendly, flexible and punctual.

Times Required:

There are specific hours available to be discussed at interview.

Holiday and Sickness Cover is also available regularly, so variable hours will be on offer.

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PA Position Available

I am STILL in search of new staff to work alongside me as a personal assistant. This is a fulfilling role that gives you the chance to make a difference to someone else’s life. I am looking for someone who is punctual, reliable, a team player and can be flexible. Word processing skills and a full driving licence are ABSOLUTELY essential to help me get the most out of my life. 

There are between 16-30 hours available, though there is the potential for more hours to cover holidays and sickness. This is an ideal opportunity for a student looking to gain experience in social care sector or any empathetic individual who wants to put their time to good use.

If you are interested in this opportunity, or know someone who may be, please get in touch via the Contact page, Facebook or Twitter. Good luck.

***

Rate of Pay: Flat Rate: £9.50 per hour  – Weekly Hours: To be discussed at interview.

About the employer:

I am a sociable 42-year-old man living in the Wrexham area. I use a wheelchair and live with Friedreich’s Ataxia. Subsequently, I require support to remain independent. I am an author and disabled activist with a good sense of humour. I remain ambitious and adventurous. I enjoy company and I like to go out socialising.

Summary of duties:

To provide support to access various social and recreational activities. You must therefore have a clean driving license. You will need to support with personal care, including toileting, washing, dressing and preparing meals. I am a very creative individual and require support to develop my ideas. Due to my poor dexterity I struggle to type quickly – as a writer this is most frustrating – therefore you should have good word-processing skills.

A full driving license is also required as I often attend meetings throughout the North Wales and North West area.

Support with gardening and household tasks.

The post will include 5.6 weeks paid annual leave (pro-rata)

Police records check funded by the employer will be required.

The person I am looking for:

The ideal person will have a good sense of humour and should also display plenty of energy, initiative and enthusiasm. In addition, applicants should be patient and trustworthy with a flexible and empathetic attitude. A positive attitude and clear understanding of confidentiality is essential. Promoting my independence will be the main focus for any support.

You must be reliable, friendly, flexible and punctual.

Times Required:

There are specific hours available to be discussed at interview.

Holiday and Sickness Cover is also available regularly, so variable hours will be on offer.

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Dancing on Thin Ice – Reader Review

I was delighted to receive a review of Dancing on Thin Ice from Julia Kobel, who is someone I haven’t met, but picked up a copy of my book from my mentor Ted Eames. I have included Julia’s kind words below as I thought it might encourage some extra sales from an indecisive few.

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Dancing on Thin Ice review by Julia Kobel.

Content should be the most important consideration when engaging with new work but I admit to finding the look and feel of a book to be influential. In this case the size, cover illustration, presentation and format seemed very right. The stylised image of Nathan draws the eye and gives the reader a visual connection to the writer before any words have been read, other than the title. And the title is well chosen; it’s something we all do to some extent. Having now read this book I see Nathan’s eyes as two light beacons which cut through and pierce the darkest of places, exposing what is there to be seen if we choose to look.

The introduction and the foreword explain how Nathan’s collection came into being. I always find this kind of information interesting. Much hinges on the fact that Nathan was encouraged to try out the tanka form at Ted’s workshop; one of those chance life encounters which prove so significant.

The definition of Ataxia was factually helpful in that I’m not familiar with this disease. But the list poem was more helpful in that it took the list of symptoms and applied them; giving the reader a comprehensive picture of what having this disease means to every aspect of Nathan’s life. This feels to me fearless writing in that Nathan writes honestly, knowingly and unsparingly; he drives in a straight line at personal issues, not taking the option of going around the block. The lines in italics reinforce the description of ‘living with Ataxia’; and lines directly addressing the reader such as, ‘Did I mention it’s a struggle?’ are very involving. To me this is not the voice of someone whose soul is being suffocated by his disease but someone whose voice/soul is flowing free in its desire to be heard.

I liked the arrangement of the tanka poems being wrapped by the two list poems. Choosing the tanka form to document 2017 was such a good decision. Nathan’s sharp insights are suited to the tight structure, comments hit home because they are so word undiluted. Dividing the poems into three titled sections works well. It helps to establish what is of importance to him. A future workshop exercise could be to read and place the poems into the most appropriate set. I appreciate titles and so I particularly enjoyed the ones which turned well known phrases on their head eg ‘How to lose friends and alienate people’. It did cross my mind that Nathan should put himself forward to write political messages/slogans as he has an insightful mind and his own particular way of truth telling.

Set among the tanka are some haiku. This change of form makes them stand out, in a good way. Their even fewer words crystallise the message. It made me think that the haiku is like the nut inside a tanka word shell.

I read this collection in one sitting because it deserves to be read in entirety and the writing demands this of the reader. It was never intended to be an easy read and it isn’t. Nathan’s writing confronts our perception of what it’s really like to be disabled. There are no tea and biscuit scenarios here, more raw steak and whisky (I hope I’m not offending a vegetarian!). I am an able bodied person living in a bubble world, my life is nothing like Nathan’s. But I recognise that what Nathan is saying is important, important for us all. The poetry vehicle he has chosen to share his thoughts and feelings is appropriate and right. My reading of Dancing on Thin Ice has left me feeling that I have …… learned, been challenged, unsettled, shocked, moved and other emotions I can’t even name. And that is as it should be. ‘Lust for Life’ (one of my favourites) says that it’s ‘Time to shake things up’ ……. be proud, you have enabled that in a most moving way. Thank you.

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This review is extremely satisfying for me. It shows that I have managed to reach my audience in the way that I had hoped to. The fact that I seem to have been accepted as a writer of tanka poetry, does tend to make me nervous in a way. I do not think it would be healthy to remain stuck in this style and I should explore other areas of poetry.

This is, of course, quite a nerve wracking thing as it would mean reinventing myself and possibly disappointing readers. I cannot afford to keep repeating myself in the tight tanka structure.

What do people think I should do next in terms of poetry?

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You can make a purchase of Dancing on Thin Ice directly through me, or if you live further afield, simply contact me through social media or the contact page of this blog. Don’t forget to include your name and address. I will have to charge £7.99 for those who cannot pick up their copy of the book to cover my postage costs.

Dancing on Thin Ice  is also available through eBay. 

Open Letter to Whom it May Concern

The following letter is written from the heart and broaches the difficult arena of disability and sexuality, which is a topic I will be focusing on over the coming months. I am excited to announce that I will be working with Dave Brown who is the Principal at The Centre for ICASA, the UK Sexual Healing Centre.

My issues will become clear to those who read this difficult-to-compose open letter, which is written with honesty and openness. Please be aware that this letter does touch upon adult themes though, as always, respect is at the centre of everything that I write.

Please note that the piece of art used below is Girl with Tear by Roy Lichtenstein. I do not hold copyright for this image and this image is not connected with my work in any way.

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As well as living with Friedreich’s Ataxia, I am also locked in a struggle with two familiar bedfellows of this progressive genetic condition – loneliness and depression. These negative emotions are exasperated by the fact that I cannot fully function in the sexual game of life, despite being in possession of all the necessary equipment and having a healthy sex drive.

There are many reasons why I feel excluded from society. I discussed many of the limitations I feel in my latest book of poetry, Dancing on Thin Ice. I have included many of the poems below between paragraphs trying to explain, with respect at all times, the emotions and frustrations that I face.

I have not been fortunate enough to enjoy much success on the dating scene. The relationships I have had with the opposite sex have poisoned my mind and left me feeling that the ideal union is not attainable.

Fairytale Romance

She’s out there, somewhere

My angelic devotee.

A buxom beauty 

With cascading locks of hair

Residing with pigs that fly

I guess part of the problem is that my idea of the ideal union is far from conventional. I have experienced a conventional relationship in the past, got married, experienced the humdrum reality that people bizarrely seem to strive for. I thankfully found an escape route when my ex proved that her legs were more spreadable than Clover margarine. Suddenly, I was booted out of my stagnant position of a husband and free to build a life of my choosing.

Freedom is not much fun when you live with Friedreich’s Ataxia. There are so many different hurdles put in the way of true equality for those with only the slightest difference from the midstream masses. Ataxians face an arduous assault course full of hazardous pitfalls when aiming towards a level playing field, particularly when it comes to the dating scene.

For Your Entertainment

I am undateable

According to Channel Four

Look at the cute crips

Patronise at your leisure

While society stands still

In the ten years I have been divorced, I am proud of what I have achieved. I am the author of two books, I have been awarded an Honorary Fellowship for my work in Disability Rights by Glyndwr University and have led the successful #SaveWILG campaign to help protect independent living for those with high support needs in Wales. This is in addition to maintaining and designing my quirky bachelor pad and travelling across England and Wales. However, I remain unlucky and frustrated in my relations with the opposite sex.

Don’t get me wrong, I have plenty of female friends who are very important to me, but I am missing out on that special someone who I can become intimate with. To make this situation even more depressing I have been robbed of all dexterity due to the effects of FA. I shouldn’t have to paint a picture of the limits this means that I face. The options open to most men with regard to sexual release just aren’t there for me.

The most worrying aspect of this is to my general health. The following paragraph was taken from Reuters Health:

” Ejaculation frequency could be a sign of overall health. … (Reuters Health) – – Men who ejaculate often may have a lower risk of prostate cancer than their peers who don’t do it as frequently, a U.S. study suggests.”

So what is the solution? Every time I pluck up the courage to discuss the issue with the doctor I am fobbed off through sheer embarrassment. It is an area that people don’t feel comfortable discussing, but if it saves lives then it must be worth opening up about.

As I can’t do anything with my own, useless pair of hands then the obvious answer is to find someone with hands that would help. This is not an easy thing to do. I have been trying for ten years. I have had one or two successful arrangements that were fun while they lasted, but had no long term stability. Frustratingly, they also cost me a pretty penny. Oh to be desirable without financial incentive…

The problem is trying to achieve a perfect settlement whilst also making sure all parties maintain their dignity and self-respect. I have no desire to merely use a member of the opposite sex for my own sexual gratification. I much prefer to build a true friendship that has an intimate element to it. This sounds acceptable on paper, but in the real world it is extremely difficult to find. It is not as if you can approach someone in the supermarket and ask if they would be interested in a friendship whilst enquiring about the strength of their wrists.

Superficial Puzzle

Unrequited lust

Equals a half-empty bed

Desexualised

Hunting down the missing piece

Undesirable, alone

I can spend so much money on simply meeting a sexual need. Ejaculation is good for our physical and mental well-being, so I find it strange that it is not discussed more openly and seriously. Why do I feel so sleazy writing about something that will help my health? The simple fact is that I do not believe that I should have to fund something that I need to stay healthy.  If I lived in the Netherlands I believe I wouldn’t have to consider using my own money to fulfill a biological function.

The following link takes you to a page that explains all about sex care and how it works in the Netherlands. This should be read by everyone, without embarrassment. It is something that I would like to see established in the United Kingdom, but I know how difficult it will be for our antiquated, Victorian nation to follow the lead of a progressive, liberal country.

In the meantime, I will have to find the money from somewhere to keep myself in order. The only other cheap alternative I have at my disposal is phone sex. Over the years I have spent a small fortune on Premium Rate phone lines. This has only ground to a halt now that I receive 24/7 support and therefore do not feel comfortable indulging in sex chat while there is someone else in the room. I would not dream of putting any of my support workers in such an uncomfortable situation. However, this does not help me and my needs.

Hanging On The Telephone

Compulsive habit

Born out of pure loneliness

Premium phone calls

Cost money and dignity

Victim of the modern world?

I suppose I should be grateful that I am no longer running up huge phone bills after paying 51p per minute or something extortionate like that. It became an unhealthy compulsion that I didn’t even enjoy. After the show was over I would be left bemoaning the situation I found myself in and I would always end up apologising to the woman on the other end of the phone. They would always be puzzled about why I felt the need to apologise. I guess I am just a decent human being and I don’t like the idea of using anybody for my own sexual gratification. Unfortunately, needs must and no one was ever hurt or offended…

I am always aware that time is at a premium as I search for an unconventional partner in crime. The median age of death for people living with Friedreich’s Ataxia is 35. I am rapidly approaching my 43rd birthday. The closest I have come to finding the perfect match at the moment is through my relationship with my friend Robyn who I wrote the following Tanka about:

Wonder Woman

The  ideal union

A new woman in my life 

Plastic fantastic

Her perfectly formed figure

Mannequin in lingerie

Of course, I have a number of close female friends who I value and respect greatly. I am a good guy, therefore I also have the same amount of respect for their husbands and partners. Friendship comes easy to me, it is steering relationships down a more intimate avenue that I have difficulties with.

I think I have covered most of the bases in this article. There are so many stories that I could share about being “ghosted”  or the multiple times I have put myself in danger for the allure of trying to create an intimate situation through sex workers. I often get confused between love and sex, as it took me way too long to realise that neither of these mean anything without the other.

Square Peg, Round Hole

Attempting an impossible fit

Without wishing to look an utter tit

Will that spaz ever manage it?

Square peg, round hole

 

Acceptance is what we strive for

A level playing field, no more

Let me display my regular, everyday, humdrum core

Square peg, round hole

 

Accessibility would be a start

Open the barriers to superficial hearts

And be rewarded with love that won’t tear you apart

Square peg, round hole

 

Conformity with the masses is a must

Difference as sexy as a stale pie crust

Something, something that leads to lust

Square peg, round hole

 

Fed up already of this rhyming lark

Guess I ain’t no John Cooper Clarke

How the hell will I make my mark?

Square peg, round hole

 

Instead of copying another man’s style

I need to go the extra mile

Writing personally with added guile

Square peg, round hole

 

Breaking free from restrictions

While penning accurate descriptions

In free-form style – it’s what I need to do

Square peg, round hole

 

So I guess I’ll never fit

Into your confines, YOU utter tit

I’ll be myself – get used to it

Square peg, round fucking hole

This article is not an advert, but if you are in a position to offer solutions to the situation I find myself in then please feel free to contact me in private via nathanleedavies @ gmail.com

Strathclyde University LVST Trial

Last year I put my name down to be involved in a participation study organised by Strathclyde University. It was looking specifically at the effectiveness of Lee Silverman Voice Technique (LSVT) in improving communication in people with Friedreich’s Ataxia.

Unfortunately, I was overwhelmed with work for the #SaveWILG campaign and had to pull out of my proposed involvement. I was delighted to receive an update on this research from Professor Anja Lowit who provided me with a summary of her findings. It makes for interesting reading, especially at a time when I am hyper aware of the progressive limitations of life with Friedreich’s Ataxia.

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A little background information to begin with: 

LSVT was originally developed for people with Parkinson’s Disease, but there is some suggestion that it might also be beneficial for those with ataxia as well. We are trying to establish whether this is true by investigating whether the communication of people with Friedreich’s Ataxia improves from this treatment. In addition, we also want to look at their experiences of the treatment, e.g. whether it was too intensive or tiring.

Who is carrying out the research?

The research is being carried out by Mariam Mahmood, who is a qualified speech and language therapist and LSVT Practitioner. Mariam is also registered as an MPhil student at the University of Strathclyde. In addition, Prof Anja Lowit, who is Mariam’s supervisor, will be involved in some aspects of the research. Dr Anja Kuschmann, the second supervisor, will also have access to the research data and provide advice on the project.

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End of study report – lay summary

We performed a feasibility study of speech therapy for people with hereditary ataxia. The aim of the project was to evaluate whether therapy would result in improved communication, whether it had any negative side effects, and how people felt about treatment being delivered remotely with Skype.

The therapy consisted of 16 sessions (45-60 min duration), which were provided over Skype twice a week. Participants were asked to practice another 4 or 5 times a week in addition to these. The sessions focused on establishing a strong voice, first on long /a/ sounds, then in speech (short phrases building up to longer passages). We recorded participants twice before treatment, and twice afterwards, i.e. immediately at the end of therapy, and about 2 months later.

The outcomes of our study were very positive. We managed to recruit sufficient people in the timeframe we set ourselves, and nobody dropped out because of problems caused by the treatment. Therapy also did not negatively affect participants’ fatigue levels. All participants felt that treatment via Skype worked well, it reduced fatigue from travelling to clinic, and allowed those still in employment to participate more easily.

Our measures indicate that after therapy, participants’ voices sounded better and less strained, and they had more breath available to speak. Their intelligibility did not change much across the assessment sessions when unfamiliar judges listened to the recordings, but 13 of the 19 participants thought they sounded clearer or had to repeat themselves less often after treatment. In 7 cases, this was also commented on by friends or family. In addition, half of the participants reported that they had increased confidence or reduced anxiety when communicating. This had significant impact for some who were initially worried about continuing in their employment, or who had become socially isolated due to their communication problems, and who had those worries removed after treatment.

Our project is the largest study ever to be conducted on speech therapy for people with hereditary ataxia. It has demonstrated the value of treatment for this patient group, in particular the potential to improve their communication as well as quality of life. However, further research will be necessary to fine-tune the treatment approach to achieve better results for intelligibility.

Pulling Myself Together

I have been a little out of sorts over the past week or so, thanks to a chest infection. Thankfully, I have come out the other side and am feeling stronger with every passing day.

It is always scary to be inflicted with a chest infection, as I am only too aware that such infections usually finish off my brothers and sisters who live with Ataxia. I didn’t want to join those unlucky few at this time. There is an election to win before I go anywhere…

The article I have put together below, just sums up some of my moods and feelings over the past few days, while the madness continues with my valued members of staff also being stricken down by illness.

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FACEBOOK STATUS 1:

I will probably have to stay offline for the next few days as I have just seen the doctor who said I have a chest infection. Bloody hell, this is all I need. I have to take this seriously as living with Ataxia is enough on it’s own without the added complications of a chest infection. I am now on antibiotics so hopefully they will do the trick as I do not fancy a stint in the Maelor. Thankfully, I have some excellent PA’s who will help me get over this and I will be back to full strength in no time.

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FACEBOOK STATUS 2:

I have just had another home visit by a GP who has put me on a stronger set of antibiotics. Hopefully, these will calm me down and stop me from having regular panic attacks. If I can get a good night sleep, I am sure that will help me loads.

I have also had a letter from ICS detailing the protest for them to make a decision. Basically, I think they were just playing for time. I am too exhausted to think of the ramifications of this. That is a battle for another day…

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FACEBOOK STATUS 3:

A third out of hours doctor visited me last night and provided me with the super strength antibiotics that I need to shift this infection off my chest. It seems to be doing the trick and I am regaining my appetite while breathing has become easier.

I am disappointed that I still do not have the strength needed to attend the Nick Whitehead Theatre this evening to vote for Helen Grout as Wrexham’s Labour Party candidate for the forthcoming General Election. I am totally pleased to openly back Helen as the only candidate capable of making a real difference to the community of Wrexham as a whole.

I am also pleased that my good friend, Julie Rogers-Owen, will be attending the Hustings and voting in the only sensible way. If the people of Wrexham, really want to see positive politics in action then it is crucial that Labour Party members vote for Helen Grout tonight.

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All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

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I have two piles of books in my living room. They need shifting if only to quieten the taunting voices in my head. You know it makes sense…

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Please read the following article: Dancing on Thin Ice: Available Now

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There is still much work to be done on the #SaveWILG campaign. It seems as if recipients from several Local Authority areas are still waiting on the results of their assessments. I want to emphasise that this is not because of any failing from ICS Services – the independent assessment company who have been put in charge of carrying out the reassessments – but because we are still waiting on the Local Authorities that let us down in the first place. This appears to be a totally ludicrous situation, as it was because we had no confidence in the Councils in the first place, that we launched the campaign. They are still making us wait by holding up discussions with ICS Services. I want to make sure that this situation is sorted out way before the upcoming festive period, as all WILG recipients deserve this after the torrid time they have been put through.

WALESPOSTCARDFRONT001


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Please watch the following video before deciding what to do at the Ballot Box on December 12th:

 

Support Staff Urgently Needed

It’s that time of the week again folks, when I have to dust off this job advertisement and ask for support staff to come forward and apply for job with your’s truly.

Applicants should contact Nathan Lee Davies via the contact page on this blog, Twitter or Facebook. 

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Rate of Pay: Flat Rate: £9.50 per hour

Times Required: There are various hours available, to be arranged at interview.

Holiday and Sickness Cover is also available regularly as well as sleep-ins, so variable hours will be available. You will be notified of these as early as possible. 

About the employer:

This post is to support a sociable 42-year-old man living in the Wrexham area. He uses a wheelchair and lives with Friedreich’s Ataxia. Subsequently he requires support to remain independent.

Summary of duties:

To provide support to access various social and recreational activities. You must therefore have a clean driving license. You will need to support with his personal care, including toileting, washing, dressing and preparing meals. He is a very creative individual and requires support to develop his ideas. Due to his poor dexterity he struggles to type quickly – as a writer this is most frustrating – therefore you should have good word-processing skills.

The post will include 5.6 weeks paid annual leave (pro-rata)

Police records check funded by the employer will be required.

The person they are looking for:

The ideal person will have a good sense of humour and should also display plenty of energy, initiative and enthusiasm. In addition, applicants should be patient and trustworthy with a flexible and empathetic attitude. A positive attitude and clear understanding of confidentiality is essential. Promoting the independence of the client will be the main focus for any support.

 

The Search for Happiness

One of my guilty secrets is a passion for watching soap operas. I like to think that I actively watch them and don’t just waste a couple of hours everyday mindlessly staring at the goggle-box surrounded by empty pizza boxes and bottles of Diet Coke.

For example, the title of my first book – Every Silver Lining has a Cloud – was taken from an episode of Coronation Street. There was a scene set in Roy’s Rolls in which Roy Cropper’s mother – Sylvia (Stephanie Cole) – uttered the negative take on a positive line. This appealed to me and I stored it away in my memory bank as a potential title that sums up my particular brand of humour.

I was watching Eastenders the other night and I heard a fantastic quote from Callum “Halfway” Highway (Tony Clay) who was in an ambulance talking with Bobby Beale:

`”Listen, I’ve spent years not accepting who I am. Fighting all this stuff, but it’s my stuff.  And there ain’t no point in fighting it any more.  You’ve got to find a way of accepting yourself, all of yourself. Even the bits you’ve spent ages telling yourself you don’t like. If you’re brave enough to do that, then you’re brave enough to do anything.”

This is such a strong statement that spoke to me personally and made me consider whether or not I am brave enough to accept who I am in my entirety.  I want to reach such a point where I am happy and confident in myself, but the difficult thing about living with Ataxia is that it is a progressive disease. Therefore, I have to constantly re-evaluate the situation that I find myself in and learn to accept my place in society all over again.

I am sure my readers can understand that things aren’t straightforward, but I remain determined to find the door that leads to something known as happiness…

It seems like an impossible quest at the moment. All I know is what doesn’t make me happy. At times this seems like a never ending list of inaccessible activities, or hostile locations without suitable toilet facilities cut off by flights of stairs. Don’t get me started on the arrogant attitudes of many who should know better. It seems that the goal of inclusive community remains a distant dream.

I have some interesting telephone calls and potential plans in my diary for the coming weeks. Hopefully I will be able to reveal more soon, as I try to discover what, if anything, actually make me happy.

The following information was taken from Wikipedia:

Steven Patrick Morrissey (/ˈmɒrɪsiː/; born 22 May 1959), known mononymously as Morrissey, is an English singer, songwriter, and author. He came to prominence as the frontman of the rock band the Smiths, which was active from 1982 to 1987. Since then, he has pursued a commercially successful solo career. Morrissey’s music is characterised by his baritone voice and distinctive lyrical content featuring recurring themes of emotional isolation, sexual longing, self-deprecating and black humour, and anti-establishment stances.