Looking forward with an occasional backwards glance

My way of living with multiple sclerosis, and a wheelchair, is to hold firmly to my mantra. And that is always to look forward and concentrate on the things I can do and get as much enjoyment out of that as is humanly possible.

But, just once in a while it can do some good to look back, not to mourn the present but to celebrate the major landmarks in your life. So here goes!

1953       Unbelievably, I have a childhood memory while just a few months old. My mum left me in my pram while she went into a shop. How times have changed.

1957       Aged 4, started in my first school. It was while at this school, aged about 8, I decided on a career in journalism.

1964       Aged 11, started in high school.

1968       Broke my ankle in two places in a cycling accident. In plaster for six weeks.

1969       Took examinations, got most but not all needed to be a reporter.

1970       Got my last necessary qualification and started work as a journalist.

19.82. aged 29. Had MS but didn't know it

1982. aged 29. Had MS but didn’t know it.

1975       Met the young woman who would become my first wife. My football (soccer) team reached the prestigious FA Cup Final but lost.

1977       Married for the first time.

1985       Noticed a problem with my left leg, had various tests but no problem identified

1992       Moved from London to North Wales

1994       Joined the staff of a local newspaper group, becoming both sub-editor and Rural Affairs Editor.

1999       Named as ‘Wales Farming Journalist of the Year’ at the Royal Welsh Show.

2002       Diagnosed with multiple sclerosis but was able to continue working.

2006       November the day after my 54th birthday, my mobility had progressed to the state that I had to give up going out to work.

2007       Despite my disability, I managed to visit Canada and visited the Niagara Falls, and my first (and only) baseball game.

2008       Unhappy in my first marriage, I turned to playing an online game.

2009       While playing the game, I met and fell in love with the woman who would become my second wife.

2010       I met Lisa face to face for the first time. If there had been any doubt, it had now gone. We were hopelessly in love.

2011       What a year.  Lisa and I were both divorced from our partners and we then married on a beach in Florida. Two weeks later I had to fly back to the UK alone as Lisa had to wait for her visa.

2012       Lisa got her visa on her birthday, Valentine’s Day and just five weeks later she arrived at Manchester Airport. A big kiss and “Welcome home” and we sped off.

2013       Our first two cruises together, first to the Norwegian Fjords and Arctic Circle and then around the western Mediterranean.

2014       Cruise bug well and truly caught, we went around Hawaii and stopped off in New York City on the way home.

2015       We booked a transatlantic crossing as soon as we got home. A couple of weeks later we decided that we wanted to leave the grey British skies behind us. So, I suggested that we move to Spain. In the end, we left our rented flat in October, sailed aross the atlkantic for eight days, holidayed in the United States for 9 days, flew back to the UK for two nights in hotels and then flew to Spain. And in between all that I started my own blog.

2016       The blog really took off this year and towards the end of May I was asked to write blogs for multiplesclerosisnewstoday.com, and I agreed.

Not a bad life really, despite having MS.

 

BBC Panorama was about treatment of just four patients – not for-and-against HSCT

Please note: As with all posts on my 50shadesofsun.com blog, all opinions are mine. Usually, I leave that unsaid but on this occasion I want it clearly understood that I am speaking for myself – not for any Facebook group nor anyone else.

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How dare the Barts MS blog criticise the journalistic integrity of the BBC Panorama team or any other news team, for that matter, over how they treated the HSCT treatment at Sheffield?

And then to ask, albeit with tongue firmly in cheek, “Should we create the equivalent of the Ig-Nobel prize for irresponsible journalism?” is downright insulting.

Just what do the writers of the Bart blog post ClinicSpeak: reflections on HSCT after the fallout of the BBC Panorama programme know about journalism? Not a lot in my opinion – as someone who is a journalist by profession.

As far as the other points made in the blog are concerned, I must point out that I have absolutely no medical training – but I do have MS, epilepsy and a cardiac condition.

There does not seem to be anything new in the blog; they have said it all before and the fact that Panorama did not go into the downsides of HSCT is irrelevant. It was not scientific paper, nor was it a programme about the pros and cons of the process – it was a news story about the treatment and progress of four patients who had chosen to have it. And that is what journalism is all about. It told the story in an accurate and responsible manner – it is just that those at Barts would have preferred a different story altogether.

What’s more, if they want to compare HSCT with drugs, that discussion needs to include the dangers of those drugs too, of which there are plenty.

As someone who lives with MS, I think the Barts blog piece, posted on February 8, was highly patronising in that the writers seem to assume that patients aren’t interested in the long term risks, just the immediate ones. I have not had HCST, nor applied for it, but I think that if it works for some, then it is good. There are risks but these, both short and long-term, are discussed with each patient before he or she is accepted for treatment.

As far as the benefits are concerned, the people at Barts are also patronising if they think patients with extensive MS damage expect it to be reversed by HSCT, rather than progression halted with no other gains. Stopping the progression is good enough. Those extra gains are really only achieved with early MS – and patients know that!

And, while I am about it, what is it with neurologists’ attitudes? They seem to think that they should have the right to decide what is best for every individual. They think, and I am aware that this is a sweeping generalisation, that they know best and pay little if any attention to the views of patients themselves. They are the professionals and don’t need to considering patients’ views about their own treatment – well, that is exactly what they should do.

We are more than MS statistics, we are more than patients. We are PEOPLE, with our own views and opinions – and our own rights – about what happens to us.

Gwen Higgs – an update

In a comment received after my blog on Monday, one reader asked if there would be a part 3 about what Gwen’s neurologist thought about the HSCT she’d had in Moscow. So, I asked Gwen.

She said: “That would be an extremely short blog entry. I have only seen my neuro once since I came back from Russia eighteen months ago. That was a routine appointment which happened to fall a couple of months after I arrived home, so I was still bald. She showed absolutely no interest whatsoever.”