Friedreich’s Ataxia

‘I will spend what remains of my life fighting this if I have to’ – Disabled man’s battle for grant to live independently #SaveWILG

The following article appeared in the Daily Post and includes a video of me speaking to the Journalist Steven Bagnall as the fight to #SaveWILG intensifies.

***

A disabled man says he will continue fighting for the rest of his life against Welsh Government moves to scrap a grant to help him live independently.

Nathan Lee Davies from Wrexham, made the pledge after social care minister Huw Iranca-Davies indicated this week ministers are pressing ahead with the plan to stop the Welsh Independent Living Grant (WILG).

The £27m fund is paid to about 1,300 disabled people in Wales to allow them to live in their own homes.

But the cash is currently being transferred to local authorities and by the end of March next year they will assess and decide on care packages.

Mr Davies, who is campaigning against the move, fears the money will be absorbed into struggling council’s cash-strapped budgets and will see the 86.5 hours he currently receives massively reduced.

He has friedreich ataxia disease which damages the nerve system.

It has left him needing an electric wheelchair to get about and extensive care to live alone.

“We were on a massive high after the Welsh Labour conference voted to oppose the moves,” Mr Davies said.

“But after what Huw Iranca- Davies recently said, it is massively deflating. I do fear I may become trapped in my house.

Nathan Davies outside his home. Mr Davies is determined to fight to keep the Welsh Independent Living Grant (Image: Daily Post Wales)

“I feel like I am wasting precious time fighting this – I am 41 and the average life expectancy for someone with my condition is 35.

“But I feel it is the right thing to do – not just for me – but for the other 1,300 people, some who cannot speak up for themselves and I will do it until the end if I have to.”

A Welsh Government spokesman said no individual would lose their current payments until they have worked through and agreed their support package with the council.

He said: “Welsh Government and councils in Wales are determined to support independent living for all disabled people, recognising that independent living is key to a full and satisfying life.

“We will continue to closely monitor the ongoing transition to the new scheme to make sure this happens.”

A Wrexham council spokeswoman said the authority is following the Welsh Government process and working to review all people in receipt of the WILG.

She said: “It is not possible to predict what the outcomes will be for individuals.

“We do work with people to identify alternative ways for them to meet their support needs where it is appropriate.

Open Letter to Welsh CLPs #SaveWILG


I am writing to you as a Labour Party member, Unite activist and disability rights campaigner to call on your support as we work together to Save the Welsh Independent Living Grant (WILG).

#SaveWILG OUTLINED

WAG is devolving the funds and responsibility for former Independent Living Fund (ILF) recipients to 22 local authorities.  Many of these authorities are not Labour controlled, many are already strapped for cash and the money that is due to be transferred hasn’t been ringfenced for the benefit of current WILG recipients…

Under the ILF, recipients received an independent third person who was involved in negotiating care packages along with the Local Authority.  This was a great source of support to people with high care and support needs and is something that needs to be re-established.  Sole reliance on local authorities is dangerous and lessons should be learned from England where funds have been distributed to local authorities since 2015 with disastrous effects.

The money from the WAG is a clear (transparent) amount specific to WILG recipients. However, it is currently planned for this money to be paid to local authorities under the Revenue Support Act and could therefore be subsumed into other projects while local authorities try to cut back on our specific care package provision.

Why should former WILG recipients have to fight for the care package they need, not simply to exist, but to be able to live a decent and fulfilled life?  This is an impossible task for the vast majority of recipients who live with conditions such as learning disabilities, cerebral palsy or Friedreich’s Ataxia.

The families of former WILG recipients will inevitably suffer as they will find themselves trying to fill the gaps in care provision not covered in the new “reduced” care package provided by the local authority.

Our care package is essential to our existence, it is not a privilege: Why would a civilised society put us through this misery? It is a human right to be treated fairly and equally with everyone else, so why are we being squeezed into this disadvantageous position by our own Labour government. They have got this wrong, but there is still time for them to revisit this decision and retain the WILG…

Motion 4 to save WILG was overwhelmingly passed at the Welsh Labour Conference in Llandudno during April 2018, but Minister for Children and Social Care Huw Irranca-Davies has since stated that he would not rethink the policy “in its entirety”. This has transformed the #SaveWILG campaign from a quest to protect independent living for vulnerable individuals to exactly that plus a fight to preserve Party Democracy. The will of our members MUST be listened to.

The Welsh Government tried to defend their actions by claiming they had acted in accordance to the instructions of a stakeholder group. I have spoken to several members of the advisory group who DID oppose LA provision. Surely, this calls into question the basis for the Minister’s decision. There’s been a total lack of imagination on the part of the Welsh Government in terms of creating an independent living plan that all local authorities must buy into. This would be a guarantee of ensuring equity across Wales

We are constantly being told that it is unfair that only a certain percentage of the population receive WILG and that this creates a two-tier system throughout Wales. I would suggest that the WAG should look to the fine example of ILF Scotland and roll out such a system to all disabled people with high care and support needs in Wales.

This motion has cross-party support with Plaid Cymru, and even UKIP & Conservative AMs lending support and fighting against this proposal. Welsh Deputy Leader candidate Julie Morgan AM also supports the campaign and has called for an “urgent enquiry” re scrapping WILG. We have had support from English MPs like Chris Williamson, many AMs, officials etc. The film director Ken Loach (pictured below) also supports the campaign, as do many other high-profile cultural figures like the poet & musician Atilla The Stockbroker, comedian & campaigner Mark Thomas, esteemed Welsh footballers like Joey Jones, Mickey Thomas, Wayne Phillips and so many more people from all sorts of backgrounds.

Support disabled people and their families 

WILG – Because we’re worth it

#SaveWILG

HOW YOU CAN HELP?

We are urging our comrades to get involved in the important campaign in a number of ways. Please see below how you can support our postcard campaign and spread memes across social media and email to raise awareness. There are also a number of campaigns being planned over the next few months and details will be posted on my blog.

The main people that we need to convince to change direction are First Minister Carwyn Jones, Minister for Children and Social Care Huw Irranca-Davies and all of the candidates in the Welsh Labour Leadership Election. The key emails are:

First Minister Carwyn Jones: Carwyn.Jones@gov.wales or Tweet @fmwales
Minister for Children and Social Care Huw Irranca-Davies: DS.MinCandSC@gov.wales or Tweet @huw4ogmore
Mark Drakeford AM: Mark.Drakeford@gov.wales or Tweet @wgcs_finance

Other emails will be published once we have a full list of candidates running in the meantime you can contact your local AM and anyone connected to the Welsh Government.

For more information please contact Nathan Lee Davies at nathandavies01@hotmail.com There is also a dedicated Facebook page to Save the Welsh Independent Living Grant and Twitter users should follow @nathanleedavies

Continue reading for further supporting evidence on why saving this grant is so crucial for 1,300 disabled people and the democratic future of the Party we all believe in.

Media Articles

Wales Live, BBC One Wales, 09/05/2018

Welsh Government under pressure over disabled grant

Disabled man continues fight for independent lives in Flintshire and Wrexham

This disabled man has lost half his care after Tories axed the Independent Living Fund

Welsh Government has ‘sold disabled people down the river’

Independent living grants: Disability campaigner fear cuts

Postcards

Take part in our postcard campaign in a number of ways. We would like to encourage people to print the image below and pose for a selfie while holding it to show your support and help raise awareness  of our campaign. You can share it on Facebook, Twitter, SnapChat or Instagram using #SaveWILG.

Alternatively, you can contact me for one of the 500 cards I have had printed with a special message to Children and Social Care Minister Huw Irranca-Davies. There are also cards to be sent to First Minister Carwyn Jones and blank cards that can be sent to the Leadership Candidates who must realise that if they want our support they must publicly support our campaign. You can also send these postcards to your local AM to encourage them to argue our case in the Senedd.

Memes

To be shared on social media or sent to your AM via email.

Button badges – Only £1

Wear one of our badges with pride to help raise awareness and raise much-needed funds to propel the campaign forward. Contact me to make a purchase and I will make sure the badges get to you quickly and safely.

List Poem: Living with Ataxia

Disability Arts Cymru have introduced me to the amazing Sophie McKeand – the gifted writer, poet, performer who is the current Young People’s Laureate Wales April 2016 – 2018, winner of the Out Spoken award for Innovation in Poetry 2015 and longlisted for the Poetry Society’s National Poetry Competition in 2014.

Writing about the incredible collection of poetry, Rebel Sun, by McKeand, Martha Sprackland [me neither] says:

“This is mythological, musical poetry that not only crosses borders but seems to dismantle them entirely, collapsing time and space, transfiguring and prefiguring the world we live in.”

I have a signed copy and can confirm the books brilliance.

Anyway, Sophie is an admirer of my Tanka work and has encouraged me to try different poetic forms such as the List Poem below. I was fortunate enough to perform a list poem alongside Sophie at the #SaveWILG community awareness day at Set the Bar in February.

This was a resounding success and gave me the belief in my talent that I needed. It also led to further ideas for more poems such as the one written below. Maybe I can perform this in future with Sophie as I think we made a good pairing. Sophie is an esteemed poet in her own right so she probably doesn’t want me hanging around like a bad smell, but I think that I should maybe be looking for a person to complete my double act. I need an Ant for my Dec.

Anyway, here is my latest list poem:

Introduction: Music of this type will be created and performed as a backdrop to the introduction phase of the poem. This will be narrated by a third party.  

Friedreich’s ataxia is an autosomal recessive inherited disease that causes progressive damage to the nervous system. It manifests in initial symptoms of poor coordination such as gait disturbance; it can also lead to scoliosis, heart disease and diabetes, but does not affect cognitive function. The disease is progressive, and ultimately a wheelchair is required for mobility. Its incidence in the general population is roughly 1 in 50,000.

The ataxia of Friedreich’s ataxia results from the degeneration of nervous tissue in the spinal cord, in particular sensory neurons essential (through connections with the cerebellum) for directing muscle movement of the arms and legs. The spinal cord becomes thinner and nerve cells lose some of their myelin sheath (the insulating covering on some nerve cells that helps conduct nerve impulses).

The condition is named after the German physician Nikolaus Friedreich, who first described it in the 1860s.[1]

Symptoms typically begin sometime between the ages of 5 to 15 years, but in Late Onset FA may occur in the 20s or 30s. Symptoms include any combination, but not necessarily all, of the following:

It presents before 22 years of age with progressive staggering or stumbling gait and frequent falling. Lower extremities are more severely involved. The symptoms are slow and progressive. Long-term observation shows that many patients reach a plateau in symptoms in the patient’s early adulthood. On average, after 10–15 years with the disease, patients are usually wheelchair bound and require assistance with all activities of daily living.[3] 

[The lines in italics throughout the poem are to be spoken by different people dressed in appropriate clothing and illuminated on a dark stage by a spot light]

Living with Ataxia

Is a struggle

Living with Ataxia

Sounds muffled and unclear

Living with Ataxia

Smells of wet denim and shame

Living with Ataxia

Tastes of bitterness

Living with Ataxia

Feels brittle

Living with Ataxia

Wibble wobble, wibble wobble jelly on a plate

Living with Ataxia

Effects everyone around you

Living with Ataxia

Leaves you wondering what might have been

Living with Ataxia

Demands formidable mental strength

Living with Ataxia

Beats being programmed by The Man From Auntie 

Living with Ataxia

Could be the best thing that ever happened [discounting Maggie’s demise]

Living with Ataxia

“He’s just lazy and clumsy”

Living with Ataxia

Means wanting what you can’t have

Living with Ataxia

Forbids carnal delights

Living with Ataxia

Limits your liberty

Living with Ataxia

Allows your imagination to run rampant

Living with Ataxia

Prevents the attainment of Aquarian ambitions

Living with Ataxia

“Trampoline legs”

Living with Ataxia

Colours your life

Living with Ataxia

Black, dark grey or midnight blue

Living with Ataxia

Is not all bad [he lied]

Living with Ataxia

Results in a dark sense of humour

Living with Ataxia

Is no laughing matter

Living with Ataxia

“Sorry sir, I forgot my kit”

Living with Ataxia

Adds fuck all

Living with Ataxia

Subtracts hope

Living with Ataxia

Divides friends and family

Living with Ataxia

Multiplies hurdles

Living with Ataxia

“Maybe it’s a trapped nerve”

Living with Ataxia

Confuses small minds

Living with Ataxia

Frustrates 

Living with Ataxia

Embarrasses

Living with Ataxia

Teaches you virtues, such as “Good things come to those who wait”

Living with Ataxia

Makes you wonder who the fuck wrote virtues?

Living with Ataxia

“Have you got a licence for that?”

Living with Ataxia

Highlights injustice

Living with Ataxia

Illustrates that beauty isn’t only skin deep [thank God]

Living with Ataxia

Condemns you to a life less ordinary

Living with Ataxia

Contradicts

Living with Ataxia

Imposes barriers around ghostly souls

Living with Ataxia

“Sorry, only genetically perfect people can donate sperm”

Living with Ataxia

Did I mention it’s a struggle?

Living with Ataxia

Underlines inequality

Living with Ataxia

Objectifies the body

Living with Ataxia

Mystifies my mixed up mind

Living with Ataxia

Disqualifies true contenders to the crown

Living with Ataxia

“I charge by the hour hun

Living with Ataxia

Locks lively minds in dying bodies

Living with Ataxia

Mangles the idea of perfection

Living with Ataxia

Twists the spine

Living with Ataxia

Causes caustic sorrow

Living with Ataxia

“Fill your pockets chaps. These disabled freaks are easy targets”

Living with Ataxia

Suffocates the soul

Living with Ataxia

Haunts empty shells

Living with Ataxia

Implodes

Living with Ataxia

Crushes everything that’s precious

Living with Ataxia

Guess what? It’s a fucking struggle

War #SaveWILG

I don’t want to have to write the following, but it needs saying as Wrexham Council and the Welsh Government are failing in their duties of care to disabled residents such as myself. I am not continuing to struggle while local councillors vote to give themselves a pay rise and Government officials just will not listen to reason.

Yesterday, was an average day which began productively thanks to the help of my Personal Assistant. I visited the supermarket to replenish empty cupboards and powered through some housework and admin. Unfortunately, my PA is only contracted until 14:00 and I am alone all afternoon until a second PA returns at 19:00. This used to suit me fine as I had full use of my hands, but living with a progressive disability such as Friedrich’s Ataxia means that I am having to consider changes to my deteriorating body and the need for more support. Believe me, this is not something that I want to have to accept, but I just cant function on my own without the help of another human being. Extra care is something that I NEED.

Yesterday afternoon, I was drinking water while watching Final Score on television. After finishing a bottle I thought I had better go to powder my nose before the urge really hit me. I was being responsible. Unfortunately, once I got to the bathroom my dexterity failed me and I was unable to produce my crown jewels from my boxer shorts in time.

Fast forward five minutes and I was sitting in a freezing cold pair of sodden jeans with tears of frustration and exasperation running down my face. My only option was to call my 67- year old father who came to help. By the time he had helped me to sort everything out it was 18.00 and a relaxing afternoon, after a busy week, had disappeared.

The rest of the evening was spent in agony as my Dad had to remove my wheelchair  cushion cover to give it a good wash. This is a padded cushion cover so I was forced to sit on an uncomfortable surface for the rest of the evening. It was a relief to get into bed.

However, at 03.30 I woke again in discomfort. I have been going attending a Podiatry clinic at Wrexham Maelor hospital. Last week the Podiatrist discovered an ulcer on the side of my left foot by my little toe. She dressed it and it has been fine all week but last night it was really causing me a lot of pain and I could not move my foot into a more suitable position. I did not want to bother my dad again but in the end I had no option but to text him. He did not receive the text until a lot later after I had been in agony for 2 hours.

If I was able to have the 24 hour care that disabled people with high care and support needs deserve then I would not have had the humiliation of having to write this. With adequate support I would have had the assistance needed to avoid an accident and been able to move my foot into a more comfortable position.

It seems that Wrexham Council and the Welsh Government see me as something of a nuisance. They have clearly got their priorities all wrong as they are putting profit and greed before people. The bad news for them is that I am not planning on going anywhere soon and they have legal responsibilities that I will ensure they meet with me and other disabled people in the Wrexham area and beyond. Things have got to change and I will make sure that I will do what I can to force these changes in the time I have left before I am consumed by life with Ataxia.

Not Enough Hours in the Day #SaveWILG

I am sick of this.  It is 2018 and I am still being treated like a second class citizen.  I have a progressive condition of the nervous system which is accelerating at quite a rate, yet I still have the same amount of inadequate care and support hours  that I did in 2010 when I first began independent living.  Life is a struggle at the moment and on top of this stress, I am having to campaign wisely to Save the Welsh Independent Living Grant (WILG) plus lead the protests against the proposed Blue Badge charges in Wrexham town centre.

Furthermore, I have a #SaveWILG art exhibition starting at Theatre Clwyd in Mold on Wednesday 24th January and a community awareness day in Wrexham on Saturday 3rd February.  I am throwing myself into all this work in order to help disabled people live independently throughout Wales because I will always fight for what is right and stand up (!) for what I believe in. Bloody principles…

Having to do this with the extra pressures of time limitations is especially difficult.  How do I get across to you the difficulties of coping alone without the necessary assistance?  Unless you spend some time in my shoes it is difficult for you to comprehend the frustration that I face.  I will try to produce a short explanatory documentary one day, but for the best I come up with in a written timetable of my day.

20.01.18

00:00 – I’ve been in bed for two hours now after having to leave an engagement party, for a close friend, earlier than I would have wished if I could live my life without the shackles of limited care hours provided by Wrexham Social Services. I am writing on my laptop computer, but before my PA left he forgot to plug the computer into the socket.  I have just been told that I have 13 minutes left before the battery drains and the computer shuts down.  This is most annoying as all I need to do is switch the power on at the wall. Of course I cannot reach the plug and cannot call for help as no one is working at this hour.

02:00 –  Woke up needing to pass urine after drinking post 20:00, which is my usual cut-off time for fluids. I have an issue with urgency. When I want to go, I want to go but with me I have to take the time to raise my profiling bed, pull my light cord if it hasn’t fallen out of reach, tried to grab my urinal with spasticated hands and then breathe a sigh of relief. Finally if all goes to plan. Unfortunately, during recent months the plan has been coming together less often. This is not a nice admission for a 40-year-old man to have to make, but I am wanting people to realise the distress and discomfort that disabled people are having to put up with as cruel local authorities focus on budgets and ideological austerity that benefit the few at the expense of the many. Lying in your own piss is not fun and can cause skin irritation not to mention the demoralisation and embarrassment of spending countless hours pickling yourself in urine.

04:00 – I wake up shivering and thinking as it is impossible to find any comfort in a wet mattress. It does not help that I am restricted to one position at night and I cannot turn over unassisted. I decide that I will try to call my 68-year-old Father to ask for his help in changing the bed and restoring some comfort. However, my mobile phone has got wet and will not  function at all. I reach for my landline but my dexterity lets me down again and I drop the phone on the floor. I am now unable to contact anyone and will be forced to remain cold and sore until the morning shift arrives at 9:00.

06:00 – I am squinting at the clock on the other side of the room. I think it is 06:00 – only three hours of discomfort and helplessness left. My legs are aching as they are bent at the knees and I cannot straighten them myself. If only I had the support of a carer. When I asked for 24 hour care recently my social worker laughed at me and said that a lot of people think they are entitled to 24 hour care but no one in Wrexham receives such a package of support. She said she could put my request to panel but that they would almost certainly deny my please. I am not asking for the world. Just the opportunity to live in society on an equal footing to everyone else. I know I am better than the one, but at the same time I know that no one is better than me.

08:00 – The central heating has kicked in and I have just woken up in a sweat. I could do with opening the windows or maybe turning the heating down, but I cant do anything while I am stuck in bed unable to contact anyone.

09:00 – The cavalry has arrived. I immediately get out of bed with assistance and take a shower. This instantly improved my mood and I look forward to the day ahead, although I wish I could wash away the embarrassment as easily. Showering is a two person job and can take up to two hours to perform the whole task from bed to wheelchair including toileting and dressing. At 11:00 I can finally start reclaiming my dignity.

12:00 – After breakfast, the telephone rings. The person on the other end of the phone does not understand my voice as my speech is sometimes slurred due to my progressive disability. My PA is able to communicate for me. This is also the case with writing emails. In 2013, I wrote my first book. Over 500 hundred pages in length and something that I am very proud of, but there is no way I could do this now as writing a simple tweet can take me 30 minutes or more. The frustration is unbearable as my mind is as sharp and alert as ever but my body is keeping it prisoner.

13:00 – My PA is due to leave in 1 hour, so I am rushing through my emails trying to make sure everything is done in time as I will be left alone until 19:00. I am concentrating on emails though I am conscious that the ironing pile is building up and the floors could do with mopping. On week days, I have to fit in these emails around housework, appointments and meetings. There really is not enough hours in the day, thanks to Wrexham council…

15:00 – I have now been on my own for over an hour so I have already missed a telephone call and dropped a bottle of water on the kitchen floor where it will have to stay until 19:00. A delivery driver has just knocked on the door to deliver a parcel. This was rather embarrassing for me as usual because when my PA leaves me at 14:00, he or she has to leave my jeans undone so I can reach the crown jewels when I need to use the toilet. This is just another example of the lack of dignity I have to endure when I am left alone.

16:00 – I am rather peckish. I have plenty of food in the cupboards but I cannot reach the snacks that I crave. Even if I could, I would be unable to open the packaging due to my lack of dexterity. I suppose this stops me from becoming a fat bastard. Every cloud…

18:00 – I have just spotted some mail that I must have received earlier, but I cannot open it until later when a PA arrives. They will also have to mop the bathroom floor as I accidentally spilt some urine. My urinal tends to fill up between 14:00 and 19:00 making it heavy and difficult to handle. There are also a couple of books littering the living room floor as my dexterity will not allow me to flick through the pages of a book.

19:00 – The TV goes on and I watch soap operas about people having worse lives than me. This makes me feel semi normal for a minute until they start going on about family. I have a strong and supportive family through biology but I have not built one of my own. I subject myself to emotional turmoil and beat myself up for not achieving more with my life. This simple fact is that there is not enough hours in my day thanks to the irresponsible fascists promoting ideological austerity at Wrexham council. For example, there was recently a job opportunity for a Disability Liaison Officer at Wrexham AFC – that was built for me. I would have been perfect for this position, but could not apply as I simply cannot dedicate enough time to the club that I love, especially when I am alone without support between 14:00 and 19:00. It has also been suggested by my local MP that I should run for election to the local council. This would be one way of changing things and I would relish the challenge, but it is something that I cannot even entertain due to my lack of care and support. This clearly goes against everything set out in the Social Services and Well-being Act as I cannot begin to achieve my goals and aspirations, but the council cannot give a flying fuck about this and would undoubtedly breathe a sigh of relief at the news that I will not be running for public office.

21:00 – Coronation Street is over for another night. My friends were going out to celebrate someone’s birthday tonight. I was invited but as my friends met at 18:00 I could not join them. Another missed opportunity. I just have time to fire off a few emails, take my medication and brush my teeth before it is time to get entangled in my sling and hoisted into my half empty bed like a good little boy.

23:00 – Each night I take my laptop computer to bed in the hope that I will receive some exciting emails. Unfortunately, this is rarely the case unless you count the latest ramblings from Vox Political or Squawkbox. The difficulty is that when I am in bed I have to be in the right position to type. I often slip down the bed and end up in an impossible position. There have been times where I have had to call my Dad to help me save my laptop from falling on the floor, because it has slipped out my grasp and I cannot recover it safely. I usually stay up until 1:00 trying to type or watching TV as I struggle to sleep comfortably for reasons that I have outlined above. If More4 start showing repeats of Father Ted then I know it is getting late and time for sleep. I will venture into the land of nod just as soon as Dougal and Ted perform My Lovely Horse.

 

 

Falling Apart at the Seams

 Loads of things to let you know, but so little time.

First of all a little self promotion, as the following paragraph is from Ian Lucas MP’s monthly CLP report:

I have been working alongside Nathan Davies, a party member here in Wrexham, over the changes the Government has made to the Independent Living Fund. The debate included MPs from Northern Ireland, Scotland, and England as well as Welsh Labour colleagues Susan Elan Jones and Jessica Morden, and it was notable that each part of England criticised the changes the UK Government has made to the administration of the successor to ILF. I was able to pay tribute to the work Nathan has been doing – and to highlight his front page appearance in the Leader that morning. I was not particularly impressed with the Minister’s response, although I will take her up on her offer to meet to discuss my concerns. 

The following video accompanies this text:

Independent Living Debate with Ian Lucas

I think we have established how brilliant I am, but this awesome individual is also struggling at the moment with the effects of Friedrich’s Ataxia. This cruel disease is progressing quickly and really starting to affect my swallowing and speech. I have particular problems before food as I am regularly coughing and choking uncontrollably on my own saliva as I anticipate my food.

Another problem is with my speech. I am afraid that I am beginning to slur more than I use to and I just cant bear listening to myself on TV or radio as the voice that I hear is not the one that I hear in my head when speaking. I really should do something about both problems, but as I am so busy trying to save WILG, I am letting my health slide.

Earlier this week, I received a phone call from the local hospital asking me to come in for a camera down my throat following discussion with my GP about my difficulties choking. I chose to decline there kind offer as I am so busy with other things and cannot afford to lose my voice or become ill at the moment.

I received a newsletter from Ataxia UK today informing me of a speech and language therapy course that they are running in association with the University of Stirling. The second are all taking place through Skype so they are open to everyone. I really should take part and I would like to if only I had the luxury of time to spend looking after myself. The Tories and Wrexham council are ensuring that this is just not possible at the moment.

1Study Advert, Version 4.0, 05 January 2018

Speech Therapy Treatment Study for Friedreich’s Ataxia

Communication problems are a frequent consequence of ataxia. Many people report a decrease in quality of life as they can impact on our social relationships, employment opportunities, etc. Yet there currently is no effective treatment for speech problems that has been properly evaluated, and there is uncertainty amongst clinicians on how best to support people with ataxia with their communication.

We are looking for participants for a study investigating a new treatment approach for speech problems. There is good evidence that this approach is effective for Parkinson’s Disease and we  want to find out whether it can also help those with ataxia. This study is funded by Ataxia UK and aCHaf and carried out by researchers at Strathclyde University in Glasgow.

The treatment will be administered via Skype in your home and there is no need to attend a clinic. It will run for 8 weeks, with two therapy sessions per week and homework practice for the other days. A typical LSVT therapy session will involve practising a good voice production on a series of long ‘ahhhs’ focusing on controlling the loudness of your voice, as well as the pitch. We will then try and transfer these skills to speaking by reading out individual words and functional phrases, working our way up to longer stretches of speech over the course of therapy. As treatment will be carried out in English, it is important that you have Basic English speaking and reading skills. This protocol of activities will be the same for each session, but the materials will increase in complexity. Homework exercises will follow a similar protocol to the therapy sessions and will take about 30 minutes. Ideally, we would like you to practise at least another four times during the week.

We will measure how much your speech has changed after treatment, and also ask you what youthought of the therapy approach. To do this, we will perform two short assessments before and two after treatment, and also do an interview. This will again be done via Skype. Altogether, the study will take about 6 months.

To be able to take part, you need to fulfil the following criteria:
􀁸 Have a confirmed diagnosis of Friedreich’s Ataxia
􀁸 Experience speech or voice problems
􀁸 Not have any other neurological or speech problems
􀁸 Be aged 16 or over
􀁸 Have access to the necessary technology (good internet connection, access to a computer

that allows you to use Skype and has a functional microphone input)
􀁸 Have Basic English speaking and reading skills

If you are interested in participating, please get in touch with us by phone or email and we will give you more detailed information. Please contact:

Aisling Egan
Speech and Language Therapy Unit
School of Psychological Sciences and Health
Strathclyde University
Tel: 0141 548 4393
Email: aisling.egan@strath.ac.uk

I should probably email Aisling to find out more information.

I cannot end this blog without mentioning the two events that have on this week.  The first of which is a #SaveWILG Art exhibition at Theatr Clwyd in Mold, north Wales. This event runs from January 24th to February 12th and includes art, poetry and pictures from a wide range of disability activists and artists. The official media day for this is on February 2nd. I am very proud of what we have put together in such a short space of time.

A leaflet for the Theatr Clwyd event has also been produced by Heather Wilson.

SaveWILGSideA2

SaveWILGSideB2 copy

Our North-East Wales WLG/M comrades are centrally involved in organising this great event. It will be a fantastic occasion, but we need to get as many people there as possible! This is a day of entertainment and information. There is alcohol, soft drinks and food on sale at the venue and there is full Disabled access and a Disabled toilet.  The least we hope anyone can do is promote this event by sharing the flyer and printing it off and putting around your area, disability groups, CLPs etc etc. Raising awareness of the event is crucial to the campaign’s success!The event is FREE to all. Please do help in any way you can.

Schedule

 

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.