Blogging has become great occupational therapy

Ten years ago this November, my working life stopped. Disability made it impossible to continue. I just could not travel to work and back every day, and climb up stairs, potentially several times a day. There were no offices on the ground floor and no elevator; so stairs were the only option.

I really did nothing for the next 8½ years, nothing that is except fall out of love, fall in love with Lisa, get divorced and then get married to Lisa; no, not much at all, really. Oh, yes, and there was a diagnosis of a heart problem to go with multiple sclerosis and epilepsy.

But having said all that, it was in June last year that the decision was made to put my career in journalism to good use to write a blog. Nothing great was planned but it started on August 1 with more of a whimper than a growl. It was launched as a lifestyle blog and each post was about whatever took my fancy. Howver, view figures, the number of views per day, were very low.

Bio pic Modern Day MSThen, January arrived and everything changed. What had started as just ‘something to do’ became much more. I had learned what people like to read and, just as importantly, how essential social media is when it comes to marketing your blog. And that’s how my lifestyle blog was transformed into one specializing in all aspects of health and disability with more than 10,000 views per month being consistently achieved and exceeded since the beginning of February.

It was just like doing a part-time job, with no pay, from the comfort of my own living room.

And there it might have stayed if it wasn’t for Mike and Chris. Mike had been following my blog for a while, unbeknown to me. In early June, he sent me a message on LinkedIn and asked if I would write one blog a week for multiplesclerosisnewstoday.com. Of course, I agreed.

In fact, I wrote two blogs that first week and, having seen them, Chris, Mike’s boss. Asked me to write three a week. Soon it was five and I was thoroughly enjoying myself – without leaving the confines of my armchair at home in sunny Andalucía, Spain.

Oh, yes, and this blog of mine, 50shadesofsun.com, is still being produced.

Now, besides writing, I am checking out and recruiting more bloggers for the 40 disease-specific websites that come under the umbrella of BioNews Services. Together, it is a great form of occupational therapy; just what is needed.

For once, my physical disability has been coupled with my journalistic experience and ability to great effect. Who’d have thought this was possible 10 years ago? Certainly not me, that’s for sure.

 

 

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HSCT can cure MS, says Moscow’s Dr Fedorenko

Last week I interviewed Dr Denis Fedorenko, the leading HSCT doctor in Moscow. I wrote this article for MS News Today, where it first appeared two days ago. It is being reproduced here just in case you missed it the first time, when it appeared under the following headline: 

HSCT Can ‘Cure MS,’ Doctor Doing Stem Cell Procedure in Russia Says in Exclusive Interview

HSCT can cure MS. That’s the view of one of the world’s foremost proponents of the very successful but, as yet, still experimental therapy for multiple sclerosis patients.

In an exclusive interview for Multiple Sclerosis News Today, I asked Dr Denis Fedorenko if he believes that HSCT is a cure for MS. His direct reply took me a little by surprise; there was no attempt to skirt around the issue. He went straight to the point.

Dr. Fedorenko and a HSCT patient
Dr Fedorenko attends an HSCT patient in Moscow.

“Yes, in my opinion, HSCT can cure the disease,” he said, before emphasizing: “That is my personal opinion.”

Dr Fedorenko is responsible for both autoimmune diseases and transplantation at the AA Maximov Hematology and Cell Therapy Department of the National Pirogov Medical Surgical Center in Moscow, which specializes in the state-of-the-art treatment of hematological, oncological, and autoimmune diseases.

He has conducted HSCT in MS patients since 2005, and told me that many have responded well to the therapy, experiencing benefits beyond a halt in the progression of their disease, as shown by MRI scans. They have actually found improvements in their conditions, being able to do, once again, things that MS had stopped them from doing.

As just two examples of this, I have seen a video of a man repeatedly climbing up and down stairs unaided, while another patient, with whom I have spoken, told me she can now walk twice as far as she could before — with no aid — and that her balance has improved so much that she can not only stand on one leg while getting dressed but has also started to cycle again. “I had not cycled for years,” she said.

But do those improvements last? “Yes, they do,” Fedorenko said. “We have many patients who have had no MS relapses for 10 years. Even at seven to eight years they are rare.”

“Our aims are to stop the disease progressing further, actually make improvements in how a patient experiences MS and significantly improve his or her quality of life,” he said.

The center in Moscow is one of the leading clinics providing Hematopoietic Stem Cell Transplantation (HSCT) in the world. It includes autologous stem cells, in which bone marrow stem cells are harvested from the patient for transplanting later in the process. And it also involves the use of high dose chemotherapy to eliminate the cause of the disease — autoimmune T-cells — that are responsible for the nervous system tissue damage.

HSCT clinics exist around the world, with other major ones in Mexico, Israel, and the Philippines. But it does not stop there. I have heard about other clinics in Italy, Spain, and the UK. Still, the procedure itself is relatively new and under investigation in both the U.S. and the European Union, where it is not an approved MS therapy.

Currently, an international clinical trial  into HSCT is being led by Dr Richard Burt at Northwestern University in Chicago. Assisting him are collaborators at Rush University Medical Center (also in Chicago), the University of São Paulo in Brazil, Uppsala University in Sweden, and Sheffield Teaching Hospitals NHS Foundation Trust in the U.K. The Phase 3 study began more than 10 years ago, and is expected to finish in late 2018.

Exercise important so HSCT might cure MS

Dr Fedorenko stressed the need for rehabilitation exercise in the first three months following the procedure, explaining that there was a need to overcome muscle atrophy that develops when someone is immobile for any length of time.

“Our database shows that quality of life only improves between nine months to a year after transplantation.”

So, what is a “cure” as far as MS is concerned? It really hasn’t been confirmed yet. I recall that when my father was successfully treated for cancer some 45 years ago, we were told that he was considered cured after being cancer-free for five years after treatment.

Could the same be said for multiple sclerosis? Again, Dr Fedorenko was not afraid to express his views.

“Five years is key in cancer recovery and, similarly, in MS once five years has passed with no symptoms, we should start to think about it as a cure. In the same way, someone with an EDSS of 6.5 may not see significant improvement in what he or she can do but without signs of disease progression, again for five years, should also be considered cured.

“We need to get together with neurologists to define what is considered a ‘cure’ for MS,” he said.

Ian Franks

Ian Franks enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist Health & Disability blog at http://www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

MS gives new opportunity

50shadesheader

It can be a funny old world at times.

Almost all my adult life I have had a chronic disease, namely multiple sclerosis but I never realised that it would one day give me the opportunity to enjoy my passion for writing while unable to go out to work.

But, let’s go back a while. For a very long time I lived without realising what was wrong. While I knew something was not right, many visits to doctors and specialists left me no closer to the truth. Every test I had, including a lumbar puncture, was negative

In fact, it was not until 10 years after I moved from London to North Wales that the truth was discovered. First, Robin, my GP had suspicions and referred me directly to the local hospital and then, after more tests including an MRI scan, the truth was out. It was MS.

By this time, I was 49 and a successful journalist. I worked for another 4½ years, until mobility – or the lack of it – got the better of me.

Having settled into a life of doing, well, not a lot, my wife and I got divorced in 2011, though NOT as a result of MS. I married Lisa just eight weeks later. And no, it was not a case of being on the rebound; we first met in 2009 and our Florida beach wedding was planned many months in advance.

Since then, life has been great, and in August last year I started this blog – using my journalistic skills. It was a relatively quiet start but I still kept it going through a transatlantic cruise, a holiday in the USA and our eventual move to Spain. It was certainly a busy few months.

health & disabilityAs 2016 dawned, however, the blog viewing numbers improved dramatically with January beating the first five months of the blog’s life added together. Then February beat January.

Of course, I took a close look at the most popular blog posts and found that MS, disability and health were the most popular topics. It was an easy decision to choose to aim my blog exclusively at that particular niche.

To prove that was the right decision, the viewing numbers have continued to grow with March, April and May each attracting more than 20,000 views. Those sort of figures had not even featured in my wildest dreams.

Of course, when blogging, it is good to network and two weeks ago I was contacted by a guy asking me to add him as a contact, which I did. Mike, for that was his name, replied immediately that he had been following my blog via LinkedIn and introduced himself as the editor-in-chief of MS News Today. He asked if I’d be prepared to write a column for them too.

Of course, there was no way that I’d refuse, and so I wrote two columns, just to get started. Having seen them, Mike and the publisher Chris said they wanted to get me to do more than the initial idea of one a week. It soon became three then five a week.

Now I am halfway through my second week and loving every minute of it. Here I am, sitting at home in Spain, enjoying the sunshine with Lisa and doing what I have loved to do all my life – write.

I hope you continue to enjoy my writings, seven days a week here on 50shades and Monday to Friday at MS News Today. Please do check out both as the content is different.

Please note: My daily 50shades blogs are posted at or soon after midnight European time (11pm GMT); my column in MS News Today is published at about 2pm European time (1pm GMT).

 

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