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50shadesofsun

News and Opinions about MS, Health & Disability

Kate’s viral MS video takes her to American TV

kate3_edited nbc

An American television journalist has grabbed the story of Kate Langwine-Cooke’s viral video of herself having an MS attack. Major TV channel NBC has now approached her for an interview.

Kate said: “So, it turns out that I am now quite popular in America. I was contacted by a reporter who works for NBC and wants to interview me for a program to be aired on NBC – crazy! She had already done an article about me on Today.com.

You can see the Today.com story here: http://www.today.com/health/woman-multiple-sclerosis-posts-video-herself-having-seizure-online-t70046

Well done Kate, keep up the good work. You are an example to us all.

 

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Multiple Sclerosis posts in January, did you miss any?

 ms not aloneHallamshire%20web%20readykate3_editedms  montage

Did you see ALL of my MS-related blog posts during January? To help you check, here is a list of them, along with links to help you catch up on any you may have missed.

Kate’s MS seizure video gets thousands of views    http://50shadesofsun.com/?p=1429

MS seems affected by sun; great prescription service    http://50shadesofsun.com/?p=1424

Have MS? Don’t give up, join a support group   http://50shadesofsun.com/?p=1419

Our car is coming back – today!  http://50shadesofsun.com/?p=1416

HSCT and other posts and pages you may like to read  http://50shadesofsun.com/?p=1399

Opinions are divided over suitability of stem cell transplants as treatment for progressive MS 

http://50shadesofsun.com/?p=1371

Why me? Maybe I have my answer    http://50shadesofsun.com/?p=1359

Can Multiple Sclerosis be stopped? Maybe SOME can (Panorama programme)    http://50shadesofsun.com/?p=1347

Disturbed nights: a frequent problem with MS    http://50shadesofsun.com/?p=1332

MS: Symptoms vary and can be hidden from view    http://50shadesofsun.com/?p=1281

There are plenty of other posts as well as permanent pages too. You can view them all at www.50shadesofsun.com

 

 

 

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Act now to save Orcas from extinction by chemicals

orca

Mammoth black-and-white Killer Whales, the mammals made popular by films such as Free Willy, face the terrible danger of extinction in the seas around Europe.

The cause of the problem is of human origin – poisonous chemicals.

Like other animals at the top of the food chain, the Killer Whale is particularly at risk of poisoning from accumulation of toxins, including polychlorinated biphenyls (PCBs) and a new study is reporting that high levels of PCBs are still being pumped into the world’s oceans.

And that despite it being banned many years ago.

The report of the study, of 1,000 Killer Whale, Dolphin and Porpoise samples taken off the Strait of Gibraltar, Spain’s Canary Islands, Britain and Ireland, describes the Strait of Gibraltar, their only passage between the Atlantic and the Mediterranean, as being ‘especially bad’.

The findings of the study, published in Nature magazine, have prompted zoologists to now call for tougher regulations including more stringent penalties for those caught disposing of man-made PCBs into the seas.

Paul Jepson, speaking on behalf of the London-based Zoological Society, said: “It’s really looking bleak. We think there is a very high extinction risk for Killer Whales as a species in industrialised regions of Europe.”

An earlier survey, off Washington state’s Pacific coast, found PCB levels in Killer Whales were higher than levels that had caused health problems in harbour seals. Meanwhile whale blubber samples in the Norwegian Arctic have been found to show higher levels of PCBs, pesticides and brominated flame-retardants than in polar bears.

More properly known by its latin name Orcinus orca, the Killer Whale is also referred to as the Orca. It is a toothed whale belonging to the oceanic dolphin family, of which it is the largest member. There are four types of Killer Whales that, between them, are found in all oceans.

They have a varied diet, although individual populations often specialize in particular types of prey. Some feed exclusively on fish, while others hunt marine mammals like seals, and even large whales. They have been known to attack baleen whale calves. Killer Whales are regarded as apex predators residing at the top of a food chain – upon which no other creatures prey or one lacking natural predators.

Killer whales are highly social; some populations are composed of matrilineal, or female line, family groups which are the most stable of any animal species. Their sophisticated hunting techniques and vocal behaviour, or ‘whale song’, are often specific to a particular group and passed across generations and have been described as manifestations of culture.

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Ups and Downs of one of ‘those’ days

kate3_edited IMG_0786_edited  UP: Kate who posted the video that went viral. DOWN: My car’s gearbox goes wrong – again.

Have you ever had one of ‘those’ days? Well, yesterday was certainly one of those for me.

It started before Lisa and I went to bed. Just after midnight, I posted a new entry on my blog site and the viewing figures started piling up like nothing I’d ever seen before.

It was no surprise that the post was popular as it was about Kate, a 30-year-old Welsh woman with MS who had videoed herself having an attack so she could show it to her neurologist. Then she published it on her own Facebook page and people started to take notice.

My blog got attention too and the viewers kept coming, both reading the story and watching the video. By the time 24 hours had passed and midnight came around last night, yesterday’s post had proved to be my blog’s best day ever – and by some considerable way. If you missed yesterday’s post that includes Kate’s video, you can find it here: http://50shadesofsun.com/?p=1429

One of ‘those’ days could not be all good however – and so it turned out when our car went wrong again. Regular readers of this blog will know that our car was previously out of action from Christmas Eve when the automatic gearbox gave up the ghost. The car was collected by an automatic gearbox specialist some 300km/190miles away in Malaga.

They sorted it out and delivered it back on Tuesday, four days ago. It stayed in our drive on Wednesday and we used it for the first time on Thursday; we only drove about 20km/13miles and everything was fine.

Yesterday we did the same trip but as we approached the area in which we live, it was obvious that all was not well and so, instead of turning off the main road towards home, I turned into the nearby mechanic’s workshop. He quickly confirmed my thoughts; it is the same thing, the gearbox, he said.

Lisa and I left the car there and he took us home, later delivering my electric wheelchair which had been in our car. So, now we were back to square one – at home but without a car.

No time like the present, I telephoned the gearbox specialist in Malaga. His pleasant “How are you?” was met by me saying “I am fine but the car isn’t”. I explained what had happened and what the local mechanic had said.

Fortunately, the gearbox is under a 12-month guarantee so they are sending a recovery vehicle to collect it on Tuesday and they will be bringing a courtesy car for us to use until our car returns again.

Without a doubt, yesterday was one of ‘those’ days.

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Kate’s MS seizure video gets thousands of views

 

Kate, as pictured in the video.

 

 

 

 

 

 

 

 

 

 

 

 

 

Kate, as pictured in the video.

 

Although we have never met, I know Kate Langwine-Cooke to be a woman on a mission. She lives in Wrexham in North Wales, UK, and has MS but is determined not to let that stop her. She raised money for MS-UK and the MS Society through a physically exhausting 100km bicycle ride on a static bike, she works with young people and even coaches boxers as well as a football (soccer) team.

Added to that she campaigns on behalf of people who have ‘invisible illnesses’; after all, not all illnesses and disabilities are obvious. For example, many people have a great deal of pain manage to keep it hidden.

Kate’s symptoms are mainly hidden from public view, so it was somewhat of a surprise to see her post a graphic video on Facebook a few days ago. This was not one of her more traditional videos which many have described as inspirational; this was Kate having a seizure in all its terrifying detail.

When she turned on her trusty video recorder, her thoughts were purely on recording the seizure to show to her neurologist as she found it so difficult to describe. But then decided to use it on her Facebook page as well.

That video as since had thousands of views; in fact, 4,00 in just its first two days online.

Speaking to the Press, Kate said: “I put the camera to record because I felt my head beginning to shake in a sort of rocking motion which was an alarm bell after having been ‘ambulanced’ into ‘resus’ at the Maelor (Hospital) last Wednesday night.

“On Wednesday, I ended up semi-comatose following an attack of paralysing tremors which had lasted about 25 minutes. I was unconscious for a total of three hours, and when I momentarily did regain consciousness, I was completely paralysed from the neck down. It was terrifying.”

CT scans at the hospital showed the seizures were caused by brain damage due to multiple sclerosis. After returning home she suffered a further attack and tremors.

Kate said: “I cannot express how frightening it is not knowing if I will stay in that paralysed state for the rest of my life. MS is so unpredictable.

“The video I put to film as evidence for my neurologist at Walton Hospital, Liverpool, to see as it is very difficult to describe the attacks.

“I made the decision to post the video on my Invisible Illnesses Facebook page as part of my campaign to raise awareness of not only MS but the fact that a lot of horrendous conditions go unnoticed if a person is not in a wheelchair or using a walking aid.”

She said: “The video isn’t nice to look at, but I don’t mind sharing my life if it helps raise awareness of MS and its extremes.

“There has got to be a positive to come from all this. Four thousand views in two days is crazy,” she added.

 

To view Kate’s video, click this link: https://youtu.be/uMzE_ioUHno

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MS seems affected by sun; great prescription service

Poached eggs on the way.   Poached eggs on the way.

It was good to get back behind the wheel this morning and drive for the very first time since the automatic gearbox decided enough was enough on Christmas Eve.

It was an early start too. Well, early for me as we needed to be in our nearest town where Lisa had a 9am appointment at the medical centre. Even when we lived in Wales, I was a night owl and not an early riser and there was no need to change habits when we got here. Today was different.

Actually, talking of the appointment, it was just for Lisa to get her repeat prescriptions. Back in the UK, this had to be arranged a month at a time but, here, she came back to the car with a prescription for six months’ supply of her medications. Now, that is service.

The appointment this morning was also quite an achievement for Lisa as she went through it all speaking only Spanish and understanding the doctor’s replies. That’s something I could not do yet but I am working on that.

After leaving there, we returned home and I have to say that the car was an absolute pleasure to drive; I only hope that continues. Arriving home, my beloved headed straight for the kitchen where she prepared breakfast, as we only had a cup of tea before our trip to the medical centre. In fact, breakfast marked Lisa’s second ‘first’ of the day. It was the very first time in her life that she had cooked poached eggs. For a first attempt they turned out brilliantly but the cook wasn’t happy with her own work and says she is determined to do better next time. All I can say is, ‘yes please’ and ‘the sooner the better’; you might guess that I love poached eggs.

Having now lived in Spain for more than two months, during which we have enjoyed the autumn and early winter sunshine, I can say that living in the sun seems to be having a beneficial effect on the multiple sclerosis that affects me.

Sunshine is not a cure for MS but it does have two effects. First of all it helps your body create more vitamin D and, secondly, sunny days generally lift your spirits. Bearing these facts in mind, I feel that I am maintaining my balance better and am certainly falling less frequently. In fact, thinking about it, I have not had a real fall for weeks and even the number of times when my knee has given way has reduced significantly.

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Have MS? Don’t give up, join a support group

MS Synergy poster

Support groups have a very important part to play and none more so than MS Synergy that operates in North Wales, UK.

Groups like MS Synergy enable people with multiple sclerosis to meet others in a similar position – while carers, family members and friends can get together with their counterparts as well as MS professionals and anyone with an interest in the illness.

It gives everyone the opportunity to meet, swap experiences and socialise regularly.

Synergy is an independent support group, not part of any other MS body, and operates as a small charity under UK charity law. It raises funds to meet its own expenditure and it is run by volunteer officers who do not receive any form of payment for their work.

I have been honoured to be the group’s secretary for the first two years of its existence as an independent charity and now, even though Lisa and I have moved to Spain, we remain committed to helping out from afar.

The publicity poster reproduced above was written and designed by me. It’s message is a simple one: Just because we have MS, there is no need to give up on life. We are people who have a disability, we are living with that disability and, most importantly, we are people – just like everyone else. People everywhere, with MS or not, can all have fun and dignity.

There are many support groups around the world, not just in the UK. If you think one might help you, then look for one near you. And, if you live anywhere in North Wales, just contact MS Synergy. Just email secretary@mssynergy.org.uk or telephone UK number 01444 390392.

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Our car is coming back – today!

car house

It was an early start today, we were picked up by Peter, one of our neighbours at 8.15am and were in our bank when it opened at 8.30.  Knowing I have MS, Peter loaded and unloaded my wheelchair and even pushed me from his car to the bank and back. He was really helpful.

The early start was because today is the day that Lisa and I have been so looking forward to arriving. At long last our car is on its way back from the repair shop where it has been for more than two weeks.

Mind you, we have been without our own transport for more than a month altogether as the Christmas, New Year and Epiphany public holidays delayed our car being collected by the specialist repairers.

It was all going fine until Christmas Eve when we drove into the nearby town of Vera. After we turned off the main road and motored up the hill, we heard a strange higher-pitch sound. We went over a roundabout and saw somewhere to stop. At that point, I realised the problem. It was just as though the clutch had worn out in a manual car. With an automatic car, it meant gearbox trouble.

I made a couple of phone calls from the car, hoping that I could avoid the cost of a recovery vehicle. That’s when I discovered that in Spain it is illegal to tow a car. Even recovery vehicles have to carry stricken cars; they cannot tow them.

A short while later, once the gearbox had cooled a bit, I was able to restart the car and drive it slowly back to Cuevas del Almanzora. There we were lucky to be picked up by a recovery vehicle in just 15 minutes and were soon on our way back home. The usual wait time here is closer to two hours, I have since been told.

Obviously, living in a place that is a bit out of the way, we have not been out and about as much as usual in the last month but we have been doubly fortunate. First of all, we live in such a wonderful rural area, we have no problems staying at home and, despite it being January (and supposedly winter, even here) we have been able to enjoy lunch outside on the terrace most days. I have even been shirtless in the sunshine.

Our second piece of good fortune is having some wonderful and caring neighbours. One came by, having noticed our car was not outside, to ask if we were ok. Once assured that we were fine but the car wasn’t, they offered to take us shopping and anywhere else we needed to go. Although we don’t like to intrude, we have taken them up on their kind offer more than once. Now, we’ll be sure to offer help to others in a similar way. Sort of ‘paying it forward’.

Anyway, now our car is fully repaired, with new disc brakes on all four wheels as well, left Malaga for its four-hour journey on the back of a truck and is due to arrive here today, Tuesday, at around 1pm.

The very good news is that the repair company has also completed a thorough inspection of our car and declared it to be in good condition and, despite the gearbox problem, was well worth the money we paid for it.

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HSCT and other posts and pages you may like to read

Bio pic Modern Day MS

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Yes, that’s me. Pictured while taking the January sun on our terrace of our home in Spain.

Over the last two days, a great many of you have read, liked and commented favourably upon my post about HSCT therapy for people who, like me, live with MS.

More will be coming in the future and I’d love to hear from anyone who has a story to tell. Just send me an email to ian@50shadesofsun.com and I’ll get back to you.

Now, a few of you also chose to look at other MS-related posts and pages when you checied out the HSCT piece BUT most of you didn’t. So, I thought that you might find it useful for you to have a list of other MS pieces currently on my site.

PAGES

D-day: MS diagnosed                                                       http://50shadesofsun.com/?page_id=466

‘CAN do’ attitude to life                                                     http://50shadesofsun.com/?page_id=51

POSTS

HSCT

Opinions are divided over suitability of stem cell transplants as treatment for progressive MS http://50shadesofsun.com/?p=1371

Can Multiple Sclerosis be stopped? Maybe SOME can                                                                    http://50shadesofsun.com/?p=1347

MS

Why me? Maybe I have my answer                                                                                                       http://50shadesofsun.com/?p=135

Disturbed nights: a frequent problem with MS                                                                                 http://50shadesofsun.com/?p=1332

MS symptoms vary and can be hidden                                                                                                http://50shadesofsun.com/?p=1281

MS is the driving force behind our move to Spain                          https://50shadesofsun.wordpress.com/2015/08/08/ms-is-the-driving-force-behind-our-move-to-spain/

Caring through love not duty                                                            https://50shadesofsun.wordpress.com/2015/08/17/caring-through-love-not-duty/

It’s official – Cloudy skies are bad for our health                            https://50shadesofsun.wordpress.com/2015/08/04/its-official-cloudy-skies-are-bad-for-our-health/

DISABLED

Stopping abuse of parking bays for disabled people           https://50shadesofsun.wordpress.com/2015/08/09/stopping-abuse-of-parking-bays-for-disabled-people/

Access for people with disabilities. What is ‘reasonable’?       https://50shadesofsun.wordpress.com/2015/08/11/access-for-people-with-disabilities-what-is-reasonable/

There are also many other posts and permanent pages about other topics which may be of interest to you.

Happy reading

By the way, if you’d like to Subscribe to this site, it’s FREE, you can do so by using the form on the right. By subscribing, you will receive an email about each new post.

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Making this blog your blog

IMG_0567_edited_edited  www.50shadesofsun.com

What do you, yes YOU dear reader, want to see in this blog? I have spent the last six months making all the decisions but you really deserve to have your say.

The daily figures already show that the most popular topics since 50shadesofsun was launched, last August, have been about fearless volunteer mountain rescuers, different aspects of multiple sclerosis and strangely, perhaps, lifestyle posts – mainly about Lisa and I moving from the UK to Spain and setting up our new home.

So, now it is your turn. What would you like me to write about? To help you, let me give you a little insight into my life.

Me

My name is Ian Franks, I am 63 years old, British and live near Cuevas del Almanzora in Spain’s Almeria province.

Family

I am married to the love of my life, Lisa, who is American – a proud New York city girl, born and bred in the Bronx.

Pets

We have two cats who were also born in the States. Pooka is closing in on 18 while Priscilla (Prissy to her friends) is almost 10.

Health

I have Multiple Sclerosis with all that entails, Epilepsy that has been controlled totally since 1976 and a cardiac condition called Atrial Fibrillation that is an irregular heartbeat. That is being treated with medication and my UK cardiologist was happy that, despite the beat remaining irregular, my heart was improving in health.

Professional

My working life has been spent in newspaper journalism and public relations, which are two sides of the same coin. Writing has been my life and now I devote it to my blog www.50shadesofsun.com. Click on that link to catch up on any stories you may have missed.

50shadesofsun

      Why sun?                         Because, in November 2015, we moved from the gloomy UK weather to the sun of Spain.

     Why 50 shades?               Nothing is ever really definite, life is full of shades.

     50 shades of grey?          Yes, the title influenced my choice. ‘50 shades of’ is a catchy, easy to remember name – and Lisa says I am her Mr Christian Grey but without the troubled childhood.

     Blog description               News, Opinion and Life

My special interests

Multiple Sclerosis and other disabilities, disabled access issues, rural affairs and religion – but not as you might expect.

Your turn

Now, please let me know your views as to the type of posts you would like to read or, possibly, exactly what story my post should cover. Intentionally, there is no survey form as I prefer not to lead you in any particular direction. I am seeking your views. Please do let me have your ideas by using the comment box at the bottom of this page.

Thank you.

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