Friedreich’s Ataxia

Somewhere in My Heart

This is a brilliant song. It was in my head at the weekend after I watched TOTP 1988. However, as with a number of songs recently, I have been unable to hear and appreciate the actual tune now that I listen to it again. It seems that as Friedreich’s Ataxia eats away at my brain, I am unable to recognise actual tunes. All I can hear is uncoordinated noise. It is extremely frustrating as this is happening more and more often. I even struggled to appreciate Rock and Roll Star by Oasis last week.

Below I have added a blog taken from the Ataxia Canada page which can be accessed here. It has been written by France Désilets, M.O.A. an Audiologist, at the Institut Raymond-Dewar. It is a lengthy article but well worth reading for anyone who actually gives a shit. If anyone actually gets past the first paragraph I will be shocked and touched.

I am starting to wonder if worse things actually do happen at sea…

***

Hearing Problems in Persons Afflicted with Friedreich’s Ataxia

In July 1999, Mrs. Nicole St-Jean of the Canadian Association of Friedreich’s Ataxia asked me for an article concerning hearing problems related to this disease. The presence of hearing problems in persons afflicted with Friedreich’s ataxia is misunderstood. One knows better the dominant symptoms leading to the diagnosis such as ataxia, muscular weakness, incoordination, dysarthria, a profound loss of sensitivity, etc. The presence of a hearing deficit constitutes a more rare symptom although it is equally the source of numerous functional limitations.

We have done research on the Web in the data bank Pub Med medline.query to establish that articles pertaining to the issue of auditory problems in persons afflicted with Friedreich’s ataxia are not legion. Furthermore, the articles listed often date from before 1985 which already brings back 15 years. Considering the progress realized since then in the field of scientific knowledge related to the auditory system, it goes without saying that it only whets our appetite. Nevertheless this article is meant to be a résumé of the information which is the most valid in our eyes.

The prevalence

No precise data has been brought about concerning the prevalence of hearing problems in persons suffering from Friedreich’s ataxia. Andermann and coll. (1978) state the presence of a neural deafness in 5.2% of the subjects in their study. Sjögren’s study (1943) cited by Shanon and coll. (1981) estimates the prevalence of auditory problems at 10% in persons afflicted with Friedreich’s ataxia. The assessment techniques used by these researchers is not stated.

In Ell and coll. (1984)’s study, the hearing of 10 ataxic patients not related to any subjective hearing problem, it was proved than in the audiogram only one among them had normal hearing in both ears! Furthermore, 7 of the same subjects were subjected to an assessment of their potential as to the cerebellar trunk and only one was proved normal. Amantini and coll.’s research in 1984 was on 9 patients afflicted with Friedreich’s ataxia: there again, none complained of deafness. Two of these presented an audiogram showing a neurosensorial deafness. All the subjects however demonstrated difficulties to identify speech with distortions of speech of which the temporal “pattern” had been artificially constricted. Taylor and coll. (1982) studied 16 subjects: two of these presented an abnormal audiogram. However electrophysiological proofs demonstrated abnormalities in all the subjects except the one in whom the duration of the disease was the least.

According to more recent studies using more advanced assessment tools such as electrophysiological proofs, numerous abnormalities are detected during the assessments of the auditory function while the vast majority of these patients do not complain of any subjective deafness. It is very possible that the electrophysiological indicators of affliction precede by far the appearance of perceptible symptoms by the person himself. Also, one must not forget that deafness is possibly underestimated because the researchers did not necessarily perform the most sensitive tests (for example, tests of understanding of speech in the midst of noise) and that the subjects and their entourage were maybe not questioned in a sufficiently astute manner. For example, the person may function very well in general but experience difficulties in receptive communication when he is confronted with a noisy environment. One knows very well that in the general population, people rarely admit the presence of a hearing deficit because of the social stigma which is attached to it. It is sometimes the person’s entourage who more remark the difficulties in receptive communication of the afflicted person. The denial of a hearing problem by the afflicted persons contributes to its being misunderstood by the scientific community and slows down by the very fact research for solutions to bring them help.

The type of deafness

In the general population, the majority of persons afflicted with deafness present what is called in audiological jargon “neurosensorial affliction of peripheral origin”. The cochlea is most often the cause. (see the small diagram) In the case of persons afflicted with Friedreich’s ataxia, the affliction would be of a more central origin. It would be the auditory tracts which leave the cochlea, their relays and the cortex which are afflicted. The cochlea in itself would be essentially normal from which come the presence of an audiogram in the shape of a dome where the application is more marked on the very low and the very high frequencies with a good preservation of the central frequencies controlling the spectrum of speech. Nonetheless, it must also be mentioned that ataxic persons presenting an auditory affliction do not necessarily form a homogenous group from which comes the danger of speaking of an “atypical affliction”.

Blausen_0328_EarAnatomy

Manifestations

Just as in Friedreich’s ataxia, the deafness which can be associated with it is of an evolutionary nature. No medical or surgical treatment is possible. The deafness takes hold in an insidious manner and this is probably why the afflicted person is late in noticing it. It must be understood that this affliction, because it first touches on the centre of hearing, presents manifestations which may be subtle: the person hears speech for his detection capabilities (abilities to identify the presence or the absence of sound or of speech) are preserved well enough. The problem is more on the level of decoding, that is to say the ability to clearly identify what is being said. It is a little as if the person faced a foreign language: he hears that someone is speaking to him but he does not succeed in deciphering what the person wants to say to him. This problem is more noticed in noise and in groups and in these situations conversations become more and more difficult. The person must make extra efforts in order to be able to take part in a conversation. Considering that ataxic persons are often in contact with health professionals (for diagnoses and rehabilitation), one can think of the impact that a noneffective communication can have in these contexts. Think for example of a medication which the dosage was poorly understood, instructions poorly heard, an appointment poorly noted.

What can we do?

If you suspect the presence of an affliction of hearing concerning yourself or concerning a person of your entourage, the first step consists of having the state of your hearing assessed by an oto-rhino-laryngologist doctor (ORL) who will refer the person to an audiologist. These consultations are generally held in private clinics or in hospital centres. In the cases of persons afflicted with Friedreich’s ataxia, certain less standard tests will perhaps be done to display an affliction of the central auditory system (ex: electrophysiological proofs). It is the responsibility of the afflicted person to describe well to the professional consulted the symptoms which he notices in his daily life.

Once the hearing problem is documented, one should think of offering the afflicted person means of improving his receptive communication abilities. This is what is called auditory readaptation. Auditory readaptation takes place in a hospital centre or, more often, in a readaptation centre. If his abilities of speech detection are well preserved, it is useless to provide the person with a hearing-aid. In fact, nothing will serve to amplify speech if the problem is situated more on the level of the ability to clearly identify words and sentences (“I hear but I don’t understand”). Then one must teach the person to exploit his vision to complete the deformed auditory message that he receives. Lip-reading has proven to be a natural and efficient means to compensate for a hearing loss. Certain elements of speech which are difficult to catch by hearing can be very easy to see on the lips of an interlocutor. On the other hand, recourse to certain communication strategies can greatly facilitate the task of the afflicted persons, as for example:

  • Speak together close to each other
  • Control the noises of the environment
  • Pay attention to the face of one’s interlocutor
  • Inform one’s interlocutor of his difficulties and of the means to favour good communication.

Given that communication implies at least two persons, auditory readaptation is also addressed to the entourage of the person afflicted by deafness. By being better informed of the nature of this affliction and its manifestations, the persons of the entourage will be better able to adapt new ways of doing things when the time comes to enter into contact with the individual afflicted by deafness. For example:

  • Attract the attention of the hard-of-hearing person before addressing him
  • Speak to him close by
  • Control the surrounding noises
  • Show one’s face well while speaking clearly and adopting a moderate speed of delivery.

Auditory rehabilitation can also imply access to hearing-aids or certain assistive devices. Mention the technical devices which can improve communication in the midst of noise (one places a microphone near the mouth of the speaker) and the devices which give access to written information (such as sub-titles on television). The proposed solutions are of course adapted to each particular case according to the affliction, the reported functional limitations, the daily activities of the person and his priorities. In the case of persons afflicted with Friedreich’s ataxia, one must also consider the functional limitations in other fields in order that the proposed means can be integrated with realism. Of course, the person is a participatory party of the step, and it is up to him to decide if he wants to use these new means or not.

L’Institut Raymond-Dewar

L’Institut Raymond-Dewar is a readaptation centre specializing in deafness and in communication. It offers services to hard-of-hearing and deaf persons of all ages. In each team there are audiologists, speech therapists, psychologists, social workers, psychoeducators, and educators.

Persons afflicted with Friedreich’s ataxia as clientele is relatively new for us. This population brings us challenges which we are ready to overcome. We suspect that a good number of persons afflicted with ataxia have a hearing problem and do not consult us simply because they have the feeling that nothing can be done to improve this condition. Some may be resigned to it by considering that the affliction of hearing loss is just one more manifestation of Friedreich’s ataxia and that one must “endure his fate”. If the afflicted persons manifest themselves more, it becomes easier to develop a more advanced expertise and innovative and adapted approaches. Also, it would perhaps be pertinent to make the professionals who work with persons afflicted with Friedreich’s ataxia aware of this in order that they adopt adapted strategies of communication.

This article does not have the pretence of drawing up a complete portrait of the problematic regarding hearing problems in persons suffering from Friedreich’s ataxia. As we mention above, we do not have a precise idea of the number of individuals afflicted but considering the negative impact that deafness in a person already handicapped on other levels can have, we believe that it is important to mention that this problem exists, it is very probably more frequent than we think, and that we can help the afflicted persons.

By France Désilets, M.O.A.
Audiologist, Institut Raymond-Dewar

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. 

PA 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 16-30 hours available, though there is the potential for more hours to cover holidays and sickness. This is an ideal opportunity for a student looking to gain experience in social care sector or any empathic individual 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:

There are specific hours available to be discussed at interview.

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

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