YouTube

Colonel Blink: War Games

 

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This morning I have been to Specsavers in Broughton to pick up two new pairs of glasses. This is important for two reasons:

I usually visit Specsavers in Wrexham for my annual check up. This year I have been forced to make the longer journey to Broughton due to the hassle of  parking my car in Wrexham. When I launched a petition last year to fight the proposed introduction of car parking charges for Blue Badge holders, I argued that the town would suffer as a consequence. I am now totally evading my hometown in favour of a retail park in Flintshire that offers free parking in a well policed, nonthreatening and clean environment.

It is a sad indictment of how far the Conservative/Independent led Council have let the town decline, that I would rather drive to a less convenient location for an essential piece of business. I will continue to do this while the Council is being led by many short sighted and unscrupulous buffoons who care more about lining their own pockets rather than doing what is best for the town.

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I have had to have a new pair of varifocals. I am having a tough time getting used to them. The optician said it could take up to two or even three weeks for my eyes to adjust as there is a lot going on with my new lenses. I have also had new frames and think my new look suits me – at least I hope it does…

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A potential new anthem for fans of Wrexham AFC? #JustSaying

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.

Tired of Waiting… #SaveWILG

I’m too tired to write creatively today, but it is important that I let people know how I am after my blood clot scare.

I had woken on two consecutive  mornings with a badly swollen lower leg.  See pictures below:

I just thought this was a case of my sock being too tight, but after calling a Community Nurse to seek reassurance I was warned that this could in fact be a blood clot. I suddenly started to panic. My main concern was making sure I would be able to attend a crucial meeting for the #SaveWILG Campaign that we have lined up for Tuesday [12th of February].

I was rightly made to phone the Out Of Hours Doctor. I explained the situation and I was told that a doctor would be out to see me during the afternoon. The hours passed and I eventually received a telephone call  at 18.30. The doctor explained  that there was no point in him coming out to see me as he would need me to go to A&E to have a blood test and scan on suspect area. I did not want to go because I knew that this would mean hours of waiting while pointlessly staring into space…

The doctor insisted that I needed to go because if it was a clot it could have travelled to my lung. Suitably scared I spent my Saturday evening playing I Spy in A&E reception. This was good fun for the first couple of hours but as we entered our fifth hour of waiting I had lost the will to live.

I spy with my short sighted little fucking eye, something beginning with…

I had entered the hospital at 19.30 and I was being hoisted into bed at 03.00. The doctor finally examined me at 02.15 and then said there would be a further wait for the results of my latest blood test. I politely told him that I was unable to wait any longer and was going home to bed. I made sure that he had plenty of contact numbers for me and my family and wished him a good night. [TO BE CLEAR, I AM NOT HAVING A GO AT ANY OF THE NHS STAFF THAT WERE ON DUTY. AS ALWAYS THIS DEDICATED TEAM OF PROFESSIONALS WERE EXTREMELY HELPFUL IN THE FACE OF UNRELENTING PRESSURE AND STRETCHED RESOURCES].

After a solid 6 hours sleep, my PA phoned the hospital to try to discover the results of my blood test. She was given short shrift and told that it was highly unlikely that a doctor would promise to give out test results over the telephone. I was looking at a return to A&E as my leg had swollen yet again, as can be seen in the pictures above. After a morning of worry, I decided to phone A&E again myself. This time I spoke to another member of staff who had no problem in telling me that the blood test had come back negative. He reassured me that the test was 99% reliable.

I will still visit my GP in the morning as a matter of urgency. I need to have my circulation assessed and find out what exactly has been causing the swelling if it is not a clot. I will ask for the Occupational Therapist to be alerted to the problem in the hope that they might recommend something to stop this happening again.

This is just another piece of valuable evidence that shows that I cannot cope without 24/7 support in my own home. I know it, you know it, the Welsh Government know it, but Wrexham County Borough Council continue to bury their heads in the sand and deny me my human right to independent living.

I will continue to fight against the scrapping of the Welsh Independent Living Grant by the Welsh Government and carry on my crusade to achieve justice for all disabled people with high care and support needs across Wales.

 

Where Do You Go To My Lovely?

I was watching BBC Four late last night in an attempt to tire myself out so I was more likely to sleep through the night.  They were showing a programme entitled  One Hit Wonders.  

One of the artists featured was Peter Sarstedt who was singing Where Do You Go To My Lovely?  I have included a YouTube video of him performing this song below and the full lyric and some information from his Wikipedia page.  In no way am I claiming any association with this artist or his work, but while I was listening to his crooning I stumbled across an idea for the following blog.

It was the chorus that I found particularly inspiring:

But where do you go to my lovely
When you’re alone in your bed?
Tell me the thoughts that surround you
I want to look inside your head, yes I do

Do you really want to know, Pete?

When I am alone in my bed, this is when I feel at my most vulnerable.  I cannot move at all or get up for a midnight snack. If the heating needs turning up, then I am forced to freeze until assistance arrives in the morning. Likewise, if I need to open the window to get some fresh air then this is not an option.

Trapped in a single position all night is not something that anyone should have to endure in 21st Century Wales. Just this morning, my PA pulled back my duvet to discover that my right leg was discoloured and swollen. Something that probably wouldn’t have happened if I had received the overnight assistance that I need to re-position myself. [I have had to call the out of hours doctor to advise me on the swelling that I am suffering. I have contacted the Community Nurses to report the issue and they directed me to the emergency GP service for fear that I may be experiencing blood clots. If only I could move my legs at night – something I can only do with the assistance of overnight support].

In addition, I should be wearing hand splints to keep my hands from curling into a fist, which would then aid my dexterity. I also have a T-bar that I should use underneath my knees whilst sleeping to keep my legs nice and straight. I can’t use this whilst I am alone at night because there is no space between my legs to place my urinal. Are you beginning to feel the same sense of injustice that I feel every night?

Last night was a particularly windy evening. My PA left my window ajar before leaving my property at 23.00. At 06.00 I was awoken by the sound of my blinds clattering together. My window had blown open further and the wind force was reaching gale proportions. I was dithering under my duvet and had to disrupt my father once again to perform the simple task of closing my window for me. Why should a 68-year-old man,with arthritis in both hands, have to expend all his energy in the middle of the night to come to the rescue of his guilt-ridden son?

Should a fire start in one of the other rooms of my bungalow, then I am toast. I would have no means of escape and this could be solved so simply… Instead, Wrexham Council think it is a good idea to lavish £250,000 on renovating our perfectly well equipped bus station.  Subsequently, the thoughts that surround me mainly revolve around my dislike and distrust of a Conservative/Independent led Local Authority and how I can survive under their influence until the next Council elections.

You wanted to know Pete…

Where Do You Go To My Lovely? Lyrics  

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Peter Eardley Sarstedt[1] (10 December 1941 – 8 January 2017), briefly billed early in his career as Peter Lincoln, was a British singer, instrumentalist, and songwriter. He was the brother of musicians Eden Kane and Clive “Robin” Sarstedt.

Although his music was classified as pop, it generally encompassed ballads derived from traditional folk music rather than traditional rock and roll. He was best known for writing and performing the song “Where Do You Go To (My Lovely)?“, which topped the UK Singles Chart in 1969. Set to a “faux European waltz tune”[2] and described as “a romantic novel in song”,[3] it won an Ivor Novello Award. The record remained Sarstedt’s biggest hit, despite his releasing numerous successful albums and singles from the late 1960s onward.

He continued to tour throughout the 1980s, 1990s, and 2000s, mainly in 1960s revival-type shows, until his retirement in 2010 due to ill health.[4]

 

Musical Break #SaveWILG

What my #SaveWILG campaign is in need of is a theme tune. There have been a few songs that I have adapted throughout this campaign such as Everybody Wants to Rule the World by Tears for Fears. The latest song I have given the WILG treatment is What’s Up by the 4 Non Blondes

Without permission, I have took it upon myself to change the words to this popular hit, in order to make it fit with the campaign. If anyone is interested in recording this song I would be happy to contribute to recording costs as I think it would be a really effective way of raising awareness. I am getting carried away with myself now, but I really like the new lyrics that I have created. There are choruses that remain untouched as they fit the mood of the campaign perfectly. Why bother changing perfection? I hope the supremely talented Linda Perry (@RealLindaPerry) does not object and sees that it is for a worthy cause.

I have also added a few paragraphs from Wikipedia about 4 Non Blondes. I do hope there are no copyright issues over the use of this tune as I am giving the writers full credit and not claiming any credit for myself.

I hope you like my new version.

“What’s Up”

Fourty One years and my life is still
Trying to get up that great big hill of hope
For my independence

I realised quickly when I knew I should
That the world was made up of this brotherhood of man
For whatever that means

And so I cry sometimes
When I’m lying in bed
Just to get it all out
What’s in my head
And I, I’m feeling a little peculiar

And so I wake in the morning
Stranded inside
And I take a deep breath and I can not move
And I scream from the top of my lungs
“What’s going on?!”

And I say, “Huw, Huw, Huw, Huw”
“Huw, Huw, Huw”
I said, “Huw, what’s going on?”

And I say, “Huw, Huw, Huw, Huw”
“Huw, Huw, Huw”
I said, “Huw, what’s going on?”

And I try, oh, my God, do I try
I try all the time
In this institution

And I pray, oh, my God, do I pray
I pray every single day
For revolution

And so I cry sometimes
When I’m lying in bed
Just to get it all out
What’s in my head
And I, I am feeling a little peculiar

And so I wake in the morning
Stranded inside
And I take a deep breath and I can not move
And I scream from the top of my lungs
“What’s going on?!”

And I say, “Huw, Huw, Huw, Huw”
“Huw, Huw, Huw”
I said, “Huw, what’s going on?”

And I say, “Huw, Huw, Huw, Huw”
“Huw, Huw, Huw”
I said, “Huw, what’s going on?”

Fourty One years and my life is still
Trying to get up that great big hill
Of hope for my independence

According to Wikipedia, 4 Non Blondes was an American rock band from San FranciscoCalifornia,[1] formed in 1989. The group was formed by bassist Christa Hillhouse, guitarist Shaunna Hall, drummer Wanda Day, and vocalist and guitarist Linda Perry. Prior to the release of their first album, Roger Rocha replaced Hall on guitar, and Dawn Richardson replaced Day on drums. They hit the charts in 1993 with “What’s Up?“, their only major hit single. Perry left the band in 1994 to begin a solo career, and the remaining members disbanded shortly thereafter.[ 

For those of you who don’t know, the Huw mentioned in my alternative lyric is non other than the Minister for Older People, Children and Social Care, Huw Irranca-Davies. 

YouTube Videos

Way back in 2013 I found a time to create a few YouTube videos that I would like to share with you now.

This was before I began my activism work when I could find time to express myself in whatever way I wanted. One of these videos is a promotional film for Every Silver Lining has a Cloud (enjoy the tension before the music starts) as the other two are just a combination of songs and artists that I like.

As a technophobe, I am proud that I have managed to create these videos. They are nothing to write home about, but the fact that I put them together with a bit of determination showed me that anything was possible and that if I could do this then other things were within my grasp and nothing is impossible.

Who knows? maybe, if this #SaveWILG campaign ever ends I will get another chance to make a YouTube video. I wouldn’t hold my breath but in the meantime enjoy these videos.