Friedreich’s Ataxia

Captain Courageous Keeps Up the Fight

I was shocked and saddened to read about Fernando Ricksen and his battle with Motor Neurone Disease.

The former Glasgow Rangers captain featured on an ITV News report that I found very difficult viewing due to his admirable determination in the face of tragic injustice. 

Of course, this situation causes to me to think of my own condition, and while I do not want to measure my circumstances against the unfortunate positions of others – it is not a bloody competition – I can’t help relating and empathising in some small way with Fernando.

This is not the time, nor the place, to discuss the frustrations of living with Friedreich’s Ataxia, but I wanted to send my love and support to Fernando and his family during this tough time. I do hope that the world of football can help to fund research into MND and give hope to future individuals suffering from this cruel condition.

I encourage all readers to donate to MND Connect and help Fernando make a difference during the precious time he has left. The work that the Dutchman is doing now will be of greater value to society than any of his achievements on the football field.

Keep fighting Fernando…

FernandoRicksen1006a-2.jpg

This image is used without the permission of the owner. It was found on Google images and I am taking absolutely no credit for the image above. If the photographer comes forward he/she would be fully credited for their excellent shot. 

Part -Time Position Available

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.

There are between 12-15 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 in social care sector or anyone who wants to put their time to good use.

Drop me a line 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:

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. 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. 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.

A full driving license is also required as he often attends 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 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.

You must be reliable, friendly, flexible and punctual.

Times Required:

The specific hours that need covering at the moment are Thursday morning 08.30-10.30, Thursday afternoon 15.00-17.30 and Friday mornings 08.30-15.00. 

Holiday and Sickness Cover is also available regularly.

 

WLG/Momentum AGM #SaveWILG

At the weekend I travelled to the Welsh Labour Grassroots/Momentum AGM in Llandrindod Wells. It was a positive meeting that proved very productive. The opportunity to mix with fellow comrades from across Wales is always welcome as we attempt to build upon our strong Socialist foundations.

At the end of the meeting, I asked Adam Samuels – my first port of call whenever presented with challenges throughout the #SaveWILG campaign – to say a few words about the need to alert WILG recipients to the opportunity in front of them. After doing this, he passed me the microphone.

Since 2013 I have been noticing increased difficulties when speaking to large audiences. I tend to get very anxious and struggle to get my words out clearly while my chest tightens. In addition, as people listen to the verbal gems that can be heard beneath the increasingly slurred speech, I find that I have no control over my hands or arms. It is almost like an out of body experience, and very frightening. Friedreich’s Ataxia, mixed with general anxiety does not make a good combination…

Anyway, I must have been intelligible, as after waffling on for a couple of minutes my comrades were kind enough to give me a standing ovation. It was truly appreciated and meant the world to me to receive such a reaction from socialists I admire deeply. I had been talking about how the remarkable levels of support that I have received throughout the #SaveWILG campaign had kept me motivated and determined to succeed. I could not have continued to fight without the help and assistance that I received from others.

I really wish I had been able to soak up the ovation, rather than battling with my body in an attempt to remain conscious. It is a really scary situation but my genetic condition is obviously getting worse. Such health concerns were not present when I began the campaign, but the fight has taken so much out of me. This is why it is important that as many WILG recipients as possible, benefit from the opportunity to work with an independent social worker and ensure they are able to live the lives they choose based on what they actually need, rather than local authority budget restraints.

With the campaign drawing to a close – don’t get me wrong, I am still keeping my eye on the ball – I am wondering what to do next. I have several irons in the fire, but first of all I need to concentrate on my body to try to make sure I am around to help other campaigns for a good while yet.

 

Q&A with Dr Antonis Pantazis

The following YouTube video is probably not the best to watch when you are living with Friedreich’s Ataxia at the age of 42. The median age of death for someone with this cruel progressive, genetic disease is 35.

Nevertheless, Dr Antonis Pantazis expertly provides answers to questions that will concern and enlighten those who suffer from FA.

Note to self: NOT SUITABLE VIEWING BEFORE ENDURING SLEEPLESS NIGHTS IN A HALF EMPTY BED….


I was alerted to the video above by the monthly Ataxia UK Newsletter, which included the following:

Healthcare Professional Q+A Videos

Ataxia UK is in the process of producing a series of videos for the Ataxia UK YouTube channel. In our latest video, Consultant Cardiologist, Dr Antonis Pantazis, talks to us about the various cardiac disorders that occur in Friedreich’s ataxia. Watch the video here.

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

 

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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.