Living with MS: “I get by on two wheels, but I want to run again”
Allen Stone is a 59-year-old American going on 49, proud resident of cool Stroud Green in North London. Although an active man for most of his life, being a runner and a tennis player, Allen was handed one of those unasked presents from life: multiple sclerosis (MS). I visited him to find out about life with MS and how he keeps up with MS-related scientific research.
When were you diagnosed with MS?
“I was first diagnosed in 1996, but had my first major relapse in 1989, so I’ve had MS for 30 years. First I had the relapsing-remitting type, but now it has turned into progressive [the type of MS where there aren’t any periods of recovery for the patient any more].”
How would you describe it affected your life and your daily routine?
“For a long time — about 20 years — it didn’t really affect me much, as I was fairly asymptomatic, but in the last 10 years I started limping a bit. Your balance sort of goes, and I stopped being able to run.
“It took me about three years to get into my head that I had it and to mentally deal with it.”
“[What helps] is that these days I’ve got a very good neurologist, but my first one wasn’t sure what he was about.
“Looking at the MRI scan at the time of my diagnosis he pointed out the lesions [areas with nerve-coating damage] in my brain, but was not able to tell me how bad it was going to be.”
From that time, Allen started limping and dragging his feet. It’s easier for him to get from A to B by cycling than walking. He also experienced muscle stiffness and occasional blurry vision.
How did people react to you having MS?
“It was mostly me projecting what I thought people react to. And unfortunately one of my first experiences was work related. I work as a contractor, and I turned up at one of my jobs limping. It became a bit obvious that I wasn’t ‘100 percent pucca’. And I got fired. I got released from a job because the Project Manager didn’t like the fact that I had it.
“There was nothing to do; they could have always said I was just not a good fit. Anyway, you don’t want to work for people that don’t want you to work for them… but a lot of people don’t know what it is to live with MS as it’s not easy to describe.”
“People think of patients as someone pretty whacked out, sitting in a wheelchair. But there are a lot of people who just hobble a bit and can’t do certain things, but otherwise are just regular.”
So, how people with MS should be treated?
“Some people get a bit of an initial reaction about people with a disability. I think some of that has to do with the look in a disabled person’s eyes, because there’s a determination in their eyes. You might watch somebody with crutches walking down the street having to get somewhere. They’re determined to get there and that’s a determination which could be scary for some.”
So, how should people relate to people with MS and disabilities?
“Don’t treat them as if they were disabled, but be conscious of their disability.”
“Offer them seats on the Tube [the London Underground] and if you’re at the pub, help them carry their pints. I like the pub, because after a few drinks everybody walks like me!”
Speaking of the science behind MS, how to do get your information?
“My news mostly comes from healthcare professionals and the NHS [the British healthcare system]. I check NHS websites for information, where they explain the various types of MS. You learn about demyelination and how it’s an autoimmune disease.
“My first neurologist could not even point out the difference between the different types of the illness, but a lot has changed since and my current one in the Royal London Hospital, Dr. Gavin Giovannoni is very good. It was him who explained to me that my relapsing-remitting MS had now turned into progressive.
“This is the point when you’re interested in the mechanism even down to the molecular level to understand what it exactly is doing to your eyesight [as one symptom of MS can be blurry of double vision requiring some people to wear an eye patch].
“I also pick up information from fellow patients, with whom I meet every four weeks when I receive treatment at the hospital. They know about interesting research and they are like a friendly voice who digested something for you and explains it to you.
“Having said that, I believe in science, so I would not try out a therapy if there was no scientific evidence behind it. A good example is acupuncture, which I actually tried out, but it didn’t seem to change anything. Then I read up on it and found that there was no actual science behind it [helping to reduce relapses or slow down the progress of MS].”
“It’s important for me to hear the science from someone I trust, like my neurologist, my nurse or fellow patients. There has to be a strong element of trust, because ultimately I don’t know what’s going on.”
What are your hopes for MS-related scientific discoveries in the next few years?
“Well, there was this thing about a trial I saw a couple of years ago taking place in Chicago, Sao Paolo, Uppsala and Sheffield. It was basically about using stem cells. First they use chemotherapy to kill off the bad cells then inject stem cells. And there were some stunning results in the rebooting the immune system.”
Promising preliminary results from this trial have just been published — read more here.
“I was told by a neurologist once that ‘the breakthrough is not gonna happen in your lifetime, meaning the next 20 years’. But I think we’re going to find something and it can happen in a flash.”
“So, you know I’m 59 and when I’m 65 I’d like to be able to run again with you. That would be cool.”
I spoke to Allen for a piece that originally appeared on Sparrho, a discovery platform for published and verified scientific research.
