Like These Athletes, We All Should be Putting Our Best Feet Forward

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It’s often said of the 2.5 million of people in the world who have multiple sclerosis that no two have the same symptoms. Indeed, that is why it is known as the Snowflake disease.

And the wide variety of symptoms can be well-illustrated by looking at examples of people at both ends of the mobility scale. At one end are those who cannot walk, or have great difficulty walking. At the other extreme, are those who manage to overcome their own difficulties and keep running — literally.

determinedLet’s take a brief look at some of those determined to be athletes, despite having MS.

In August 2015, on my personal website, I wrote a story about Kayla Montgomerya young American long-distance runner who competes despite having MS.

Seventeen months ago, I wrote: “Title after title, record after record have fallen to this young lady from North Carolina.

She says that during a race her legs go numb, starting with her feet and working upwards so she feels no pain but, of course, she gets hot from the exercise involved and that is something that all of us with MS know is going to exacerbate symptoms if only for a short space of time.

“At the end of each race, as she stops running, Kayla’s legs give way and she collapses into her coach’s arms. He carries her off the track and her temperature is brought back to normal using ice and water.”

In the Fall, the Paralympic games were held in Rio and Kadeena Cox, a determined British participant with MS, excelled. She won gold medals and world records as both a track athlete and a cyclist. I wrote about her achievements here.

Now, another person with MS is undertaking a massive and incredible challenge. Cheryl Hile is running seven marathons on seven continents in one year. You can read the details in an article that columnist Ed Tobias brought you in Cheryl’s story four months ago.

What all these athletes have in common is being determined to enjoy life and never give up. We all should have the same twin aims. No matter how we are affected by our multiple sclerosis symptoms, we all need to enjoy our lives and never, ever give up. Whether it’s running a marathon or taking just one step — and that is a figurative step — it is a step forward, an improvement, an improvement in your quality of life.

This article, written by me, was first published by Multiple Sclerosis News Today.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career 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. 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.

Moscow calling – day two

It’s Tuesday morning and a busy day lies ahead of me here in the AA Maximov centre in Moscow. That’s what Anastasia told me yesterday afternoon as she was about to go home after a 10 hour working day that started at 7am.

And, as if to prove it, this morning I was wakened by a nurse so to give a urine sample. Next, it was time for blood tests but eating until after the samples had been taken. In a bizarre bit of psychological torture, there was a warning that the catering staff may bring my food but I was not allowed to touch it until told it’s ok to do so.

As it has turned out, Galina arrived and took nine blood samples before my breakfast arrived. Yes, nine samples! No idea what tests are being carried out but I have never had so many samples taken before. It certainly seems to be thorough. Still not allowed to eat though, other tests demand that too!

Last night, well early evening, I went through the MRI scanning procedure. Because many people don’t like going into the confined space of the ‘tunnel’, Dr Fedorenko offered me a sedative but I knew what to expect and declined politely.

It was just as well as, even without a sedative, my own snoring woke me three times during the hour long scan. You can tell, I was really tense!! Actually, the only problem was that restless leg syndrome, that often attacks in bed, decided to kick in.

Talking of Dr F, he and I met several times yesterday. We had, of course talked before when I interviewed him for Multiple Sclerosis News Today – but that was by telephone, so it was good to meet face to face.

It was immediately obvious that my previous impression of the man, as dedicated and compassionate, was entirely accurate. Moscow HSCT veterans often describe him as kind and lovely, I can see why and, like them, am happy to have him looking after me.

Dr Denis Fedorenko.

Dr Denis Fedorenko.

We had a chat about my own case and he said that the whole point of all the tests are to see whether or not the benefits of HSCT will outweigh the possible disadvantages in other areas, such as my heart. He explained that chemotherapy drugs, a vital part of HSCT, could have negative effects on a heart with different problems. Atrial fibrillation, he continued, is not in itself a contraindication but he wanted to be sure that there was no other problem.

“MS is a chronic disease that HSCT can cure,” said Dr Fedorenko, “but it is a disease that does not kill.”

He continued: “Our two aims here are to stop MS and improve quality of life. There is no point stopping MS if the therapy is likely to cause or add to problems elsewhere.”

To him, the outcome of the treatment is more important than relieving patients of the $50,000 currently charged.

Dr Fedorenko cares!