Ataxia UK

Pulling Myself Together

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

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

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

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FACEBOOK STATUS 1:

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

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FACEBOOK STATUS 2:

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

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

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FACEBOOK STATUS 3:

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

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

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

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All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

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

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

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

WALESPOSTCARDFRONT001


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

 

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.

Disabled fundraiser vows to complete The Big Hoot trail to collect cash for Birmingham Children’s Hospital

TAKEN FROM THE BIRMINGHAM MAIL

A disabled man has vowed to complete The Big Hoot trail to raise funds for Birmingham Children’s Hospital.

Nathan Lee Davies, who has been wheelchair-bound for 20 years, will visit each owl on the entire public art trail, produced by Wild in Art in partnership with Birmingham Children’s Hospital, even though he has Friedreich’s ataxia, a rare genetic disease that causes nerve degeneration.

He cannot travel unaided and has to rely on carers, friends and family to help him get to the colourful sculptures dotted across the city.

The trail across Birmingham consists of 89 individually-painted large owl statues and 122 owlets decorated by schools. It stretches 94 miles in length from start to finish.

Nathan, who first heard of The Big Hoot while visiting friends in Birmingham, has vowed to make a positive impact on society since his diagnosis 22 years ago.

He said: “I saw the trail and wanted to help Birmingham Children’s Hospital to continue the amazing work that they do. We’ve been using the paper map to find all of the owls.

“I loved the one titled You Can Call Me Owl, designed by Stephen McKay. I never knew Birmingham played such a pivotal role in the development of the classic red telephone box.

“I also loved looking at all of the different faces on Owlfred. I’m not from Birmingham, so there were some faces I didn’t recognise, but I’m now curious to find out more about them.”

Nathan is raising funds through his Virgin Money Giving page, where he wrote: “I plan on visiting all 89 owl sculptures over the next few weeks.

“This is quite a challenge for myself as I am a 38-year-old, wheelchair bound bloke who suffers from Friedreich’s ataxia – a progressive, genetic disease of the nervous system.

“Getting to the corner shops with a disability is hard enough let alone travelling to the Second City in search of fibreglass owls.

“I’m excited to undertake this challenge for Birmingham Children’s Hospital as they deserve our support. During these dark days of austerity they still manage to provide bright beacons of hope to patients and families.

“I also aim to record my visits with a photo at each owl and post to Facebook and Twitter.”

Nathan, who is from Wrexham, north Wales, is an avid fundraiser and has previously raised over £1,500 for Ataxia UK with a sponsored parachute jump.

He also shaved off his beard this year for Comic Relief and has been donating what he can from his own home to refugees in Calais.

The Big Hoot’s 89 large owl sculptures will be in place until Sunday, September 27, before being sold at auction to raise vital funds for Birmingham Children’s Hospital on Thursday, October 15.

The bidding for each owl is expected to start in the region of £3,000 to £5,000, with favourites such as Dr Whoot and Ozzy’s Owl expected to raise considerably more.

The Little Hoot owlets will be returned to the schools that created them from Monday, September 21.

If you’ve seen an owl that you want to give a home to, email auction@thebighoot.co.uk to register your interest.

To donate £2 to Birmingham Children’s Hospital, text HOOT to 70099.

And you can also buy miniature figurines of some of the birds.