Friedreich’s Ataxia

Desperately Seeking Staff

I am 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 also essential.

Drop me a line via the Contact page, Facebook or Twitter. Good luck.

***

Female Personal Assistant (Sex Discrimination Act Section 7 (2) (b) (ii) applies, Wrexham (0103) Rate of Pay: Flat Rate: £9.50 per hour or £10.50 at weekends and public holidays – Weekly Hours: To be discussed at interview.

About the employer:

This post is to support a sociable 41-year-old man living in the Wrexham area. He is wheelchair-bound and lives with Friedreich’s Ataxia. Subsequently he requires support to remain independent. An intelligent Author and disabled activist with a good sense of humour, he remains ambitious and adventurous. He enjoys company and likes 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 his personal care, including toileting, washing, dressing and preparing meals. He is a very creative individual and requires support to develop his ideas.

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 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 empathic 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.

You must be reliable, friendly and punctual.

Times Required:

A variety of hours are available to cover Mornings, Evenings and Weekends. To be discussed at interview.

Holiday and Sickness Cover is also available.

 

Mind Games

My mind is cluttered up at the moment as the need to Save WILG increases and my disability continues to progress. Throughout all this I am surrounded by some amazing friends and comrades who really keep me going, yet still I remain intrinsically lonely.

This is not meant to be a self centred, depressing blog. I am just stating my feelings on a sleepy Sunday morning. Hopefully others will be able to relate to my story and it is in this spirit that I am writing.

After enjoying an evening watching the superb Joe Solo at The Sun Inn, Llangollen. This award-winning musician, writer, poet, activist, broadcaster and washing machine engineer hails from Scarborough. His musical odyssey began in 1987 fronting a bash-em-out band at school, and has seen him play seven countries either as lynchpin of pop-punk upstarts Lithium Joe or hammering out his unique brand of Folk, Punk and Blues in his own right.

He put on a wonderful sincere show that obviously came straight from the heart and he managed to spread his passion for politics throughout the packed pub.  As he was performing I couldn’t help but wish I had remembered to bring a #SaveWILG postcard for him to pose with. I had to compromise and took a photo of Joe and I after the gig so that I could show that he was a supporter of the campaign.

Then I saw the photo…

At the beginning of the evening I chose to wear my new New York City t-shirt in homage to John Lennon. Unfortunately, I do not resemble the former Beatle in any way whatsoever so could only be disappointed with a photograph of a chunky bloke slouching in a wheelchair with a recognisable t-shirt hiding his flab. I was disappointed with the picture. Joe looked great and we captured the busy pub behind us, but the shot was ruined by me. I guess this is what happens when you are a perfectionist trapped in a imperfect body.

john_600x

I think the problem is not that I am especially overweight. I recently got weighed and was pleased to find that I was only 13st. This is about average for someone of my age and height. The main issue that I have is my posture in my wheelchair as due to Friedreichs Ataxia my hips tend to roll forward causing me to slouch down to a uncomfortable position. My spine is of no use at all as I am suffering from Scoliosis which means my spine has a sideways curve.

I guess this is one of the hard things of living with Friedreichs Ataxia – it is constantly changing due to its progressive nature and I am always having to come to terms with accepting changes to my body. At a time when I am fighting the Welsh Government, Wrexham Council and Wrexham AFC this is particularly hard to cope with.

However, I am a fighter and I will continue to fight while trying to learn to ignore media perceptions of what is beautiful and accepting that I should really love myself.

I really should spend longer writing this blog, but I just do not have the time to explore my feelings in a deeper way. Tomorrow afternoon I have a meeting with Wrexham Council that I need to prepare for plus countless emails I need to write without any comfort eating…

The fight continues.

***

After watching Joe Solo, my own creativity was sparked into life again and when I got home I wrote the following Tanka while lying in bed.

Sepia stained youth

 Running free through fields of gold

Stranded in the past

As your whole body erodes

Revealed in digital form

 

 

Little Bit of This, Little Bit of That…

‘111Wine, beer aNd SPIRits kEEP mE DoWn

 

liberty
ˈlɪbəti/
noun
  1. 1.
    the state of being free within society from oppressive restrictions imposed by authority on one’s behaviour or political views.
    “compulsory retirement would interfere with individual liberty”

 

Hi

I will get back to you properly tomorrow evening due to my poor dexterity and lack of care hours provided to me by Wrexham Council.

I am locked in a world of frustration that prohibits the speed at which I can type my thoughts, although my mind is racing as fast as ever.

I hope all is well with you and I look forward to speaking properly when I have adequate support available.

 

 

Disabled People Against Cuts (DPAC) is about disabled people and their allies. DPAC is UK based but we know that disabled people in other countries are suffering from austerity cuts and a lack of fundamental rights.
We welcome all to join us in fighting for justice and human rights for all disabled people. Disabled people should not be the scapegoats for the financial mistakes of governments, should not be constantly told that there is no money to support them by millionaire politicians. We will not tolerate further erosion of our living conditions or our human rights, nor will we sit quietly while they try to take our rights away.
DPAC was formed by a group of disabled people after the 3rd October 2010 mass protests against cuts in Birmingham, England. The 3rd October saw the first mass protest against the austerity cuts and their impact on disabled people-It was led by disabled people under the name of The Disabled Peoples’ Protest. DPAC co-founders are the original Disabled Peoples’ Protest organisers. Leading coordinator Linda Burnip was instrumental in getting disabled peoples’ voices heard and disabled people represented at the protest, along with, Sam Brackenbury, Bob Williams- Finlay, Tina Hogg, Debbie Jolly, Eleanor Lisney, Pete Millington, Dave Lupton, and most important of all: all those that DPAC does not necessarily agree with comments or remarks posted by other parties and will continue to publish them unless they contain any comments that are deemed offensive, inappropriate or include information that might be viewed as legally harmful.
The Wrexham branch of DPAC aims to tackle all disability related issues in North East Wales, especially those created by Governmental bodies and crooked Councillors. It is time that people valued disabled people and see the potential that exists with this group of people.

 

 

RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS NOT CHARITY, RIGHTS

 

FIGHTBACK STARTS HERE

TIME TO TURN THE TABLES

DON’T WORRY – The moral high ground is ours.

Genetics[edit]

Friedreich’s ataxia has an autosomal recessive pattern of inheritance.

Friedreich’s ataxia is an autosomal recessive disorder that occurs when the FXN gene on chromosome 9 contains amplified intronic GAA repeats (an example of Trinucleotide repeat expansion). The FXN gene encodes the protein frataxin.[4] GAA repeat expansion causes frataxin levels to be reduced and long tracts of GAA repeats induce chromosome breaks in (in vivo yeast studies). Frataxin is an iron-binding protein responsible for forming iron–sulphur clusters. One result of frataxin deficiency is mitochondrial iron overload which can cause damage to many proteins.[4] The exact role of frataxin in normal physiology remains unclear.[5]

 

42https://www.change.org/p/everyone-allow-disabled-people-freedom-to-travel-on-trains?recruiter=62711042&utm_source=share_petition&utm_medium=twitter&utm_campaign=psf_combo_share_initial.pacific_abi_share_button_ordering_1.abi_featured_fb&utm_term=psf_combo_share_initial.pacific_abi_share_button_ordering_1.abi_featured_fb

Media Articles

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

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

i OnLy WaNtEd 2 b LoVeD

 

David Melding @DavidMeldingAM

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Carl Sargeant AM @Carl4AandD Michelle Brown AM @MishBrownAM

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Joyce Watson AM @JoyceWatsonam

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Neil Hamilton AC/AMVerified account @NeilUKIP

John Griffiths AM @JGriffithsLab

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Ann Jones AM @ann_jonesam

David Rees @DavidReesAM

Neil McEvoy AM @neiljmcevoy

Ken Skates AMVerified account @KenSkatesAM

Dafydd Elis-Thomas @ElisThomasD

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Jayne Bryant AM @JBryantWales

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Rhianon Passmore @rhi4islwyn

Elin Jones @ElinCeredigion

Vaughan Gething AMVerified account @vaughangething

Mark Drakeford AMVerified account @MarkDrakeford

Mark Isherwood AMVerified account @MarkIsherwoodAM

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suzy daviesVerified account @suzydaviesam

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Bethan Maeve AM/ACVerified account @bethanjenkins

 

 

 

Is YOUR work of ANY intrinsic value at all?

 

https://en.wikipedia.org/wiki/Suicide

https://en.wikipedia.org/wiki/Suicide

https://en.wikipedia.org/wiki/Suicide

 

The trouble is not that I am single and likely to stay single, but that I am lonely and likely to stay lonely.—Charlotte Brontë

‘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.