Fantastic story - from wheelchair to recovery

[ElMarino]

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MS sufferer confounds experts by leaving wheelchair behind to run marathons

Monday, 31 August 2009




Crippled by multiple sclerosis, Debee Steel was resigned to her fate — never to walk again.

Her dreams of becoming a ballerina had been cruelly shattered when she was struck down by the disease aged just 14.

Yet even from her wheelchair, she refused to let herself be beaten.

Newtownards-based Debee adapted the punishing fitness regime from her dancing days and transformed herself into one of Britain’s top wheelchair basketball players.

No doctor on earth, however, could have predicted that her healthy lifestyle would change her life again — and that now she can run 13 miles.

Medics had diagnosed Debee with the progressive form of the wasting disease MS and told her she would never walk again.

But in January, just after her 20th birthday, Debee stood up from the wheelchair that she had used her for the past five years.

“Feeling had slowly been coming back to my legs for a year, but when I finally stood up, no-one could understand it,” she said.

“It’s unbelievable. Basically, I’m a freak.”

Debee was at the Newtowna-rds home she shares with her fiance, Steve McAleese, 27, when it happened.

The pair started going out three years ago, when Debee was still in the wheelchair.

Now there is more joy for Debee as the couple are set to get married next December.

“Steve was amazed when it happened,” Debee said.

“By coincidence, his brother is in a wheelchair and plays wheelchair basketball, so Steve’s always understood me.”

Debee was back on her feet within months — and can now run a half marathon, confounding medical experts.

In 2003, Debee was a 14-year-old ballerina with a promising future. Soon, however, her life was thrown into turmoil.

She began to display classic symptoms of MS, and doctors had her on crutches at 14.

By the time she was 15, she was confined to a wheelchair.

“Being robbed of my legs was really one of the worst things that could have happened to me because I was always into sport and always had aspirations of becoming a ballerina,” Debee said.

“I just thought, ‘Crap — it’s all over’.”

The tragedy was not the first to hit her. She was left orphaned at the age of two when her parents Mary, 29, and Andrew, 31, died in a horrific car crash in England.

Her grandparents brought her up in southern England, and nursed her when she was hit by MS.

“I was getting a bit depressed when I was put in the wheelchair, especially thinking about my parents,” bubbly Debee admitted.

“But one day I saw wheelchair basketball on the TV and thought, ‘That looks fun’.”

She moved to Northern Ireland in her late teens for a course at Queen’s University in Belfast, where she joined the Knights wheelchair basketball club.

After a year of playing she was accepted on to the Great Britain team and qualified for the 2008 Beijing Olympics.

Just before Debee packed her bags to chase glory against the world’s top paralympians, she began to feel bizarre sensations surging through her legs.

“It was so faint at first I didn’t want to believe it,” she said.

“Doctors had told me I had the chronic form of the disease and would never get better. But I was.”

Throughout 2008, with physiotherapy, she started to get stronger in stronger — until her miracle first steps.

Keith Coulter, the personal trainer who took her for her first workout, said: “She’s now fitter than most of the other people I know — it’s amazing.”

Debee now coaches the Great Britain women’s wheelchair basketball team. And last week she was in Buckinghamshire, cheering on the players in the European championships.

Ironically, she is now battling to get back in her wheelchair — to play in the next paralympics.

“Wheelchair basketball saved me, and I’d love to compete,” Debee said.

“But I need to be granted limited disability status to play. I just hope it goes through in time.”

There are fears Debee’s amazing recovery could be an extended remission from MS which some sufferers get.

But she said: “All signs of the disease are gone. I just have to think about walking now. I’m still not very good at changing trains and walking on cobbles feels a bit funny.”
MS different in each case

MS experts said yesterday that Debee’s amazing story was rare, but not unheard of.

Debee had been diagnosed with progressive MS, from which there is meant to be no remission.

Doctors had told Debee she was “chronic” and would never recover or walk again once she was in a wheelchair.

Chris Bentley from the MS Society of Britain said: “This is very rare, but not unheard of. Because Debee was diagnosed with the progressive form of MS, there should be no chance of remission.

“But she maintained a healthy lifestyle and positive outlook and it’s obviously paid off.

“MS affects everyone in different ways. Debee was obviously one of the lucky few.”

MS, which attacks the central nervous system, hits more than 85,000 people in the UK and is the most disabling neurological condition diagnosed in the under-40s.

Women are twice as likely to develop it as men.

The immune system attacks the central nervous system, disrupting signals between brain and body, prompting a range of unpredictable symptoms including nerve pain, severe fatigue, loss of movement and sight, depression, incontinence and sexual dysfunction.

However, MS never affects sufferers in the same way.

Life expectancy is near normal, but there is no cure, and research shows that about 65 per cent of those with relapsing remitting MS develop progressive MS within 15 years of diagnosis.

[notasperfectasyou]

It's stuff like this that we need to wonder about.

It is so easy to just ignore this kind of thing. But, read the story, this wasn't something so deep in the forest that there's a lot of room for just blowing it off. The story says this sort of thing isn't unheard of. Why isn't someone collecting all these stories and putting them together?

[ElMarino]

It's stuff like this that we need to wonder about.

It is so easy to just ignore this kind of thing. But, read the story, this wasn't something so deep in the forest that there's a lot of room for just blowing it off. The story says this sort of thing isn't unheard of. Why isn't someone collecting all these stories and putting them together?

I have always wanted to know just how uncommon this sort of thing is too

I can't remember ever hearing a comparable story myself I must admit except for Toger McDougall (authored a diet after a miraculous recovery) who I feel a little bitter about because his diet was instrumental on me rejecting any DMD!

[NHE]

When I read it, I couldn't help but think that one possible explanation for her recovery is that she was misdiagnosed as primary progressive and was actually relapse remitting and that her initial relapse was atypically severe and took a long time for her body to recover from it. In any case, it's likely an amazing story of neuroplasticity and reminds me of several of the cases presented in Norman Doidge's book "The Brain That Changes Itself."

NHE

[LR1234]

Maybe if we are following the CCSVI theory (which we know at this point is a theory) maybe she started exercising and training hard for this paraolympics basket ball thing and maybe that increased blood flow or helped overcome the stenosis or something..... or if it is the autoimmune theory maybe the exercise helped the her immune system in some way.

[robbie]

misdiagnosed as primary progressive and was actually relapse remitting and that her initial relapse was atypically severe and took a long time for her body to recover from it.

i'm with NHE on this one

[Lyon]

While this development is wonderful for the 13 year old, this kind of thing has happened on occasion through the years and you can bet researchers have sifted through the facts with a fine tooth comb and invariably came up empty.

Despite my conviction that in hindsight the cause(s) of MS are going to seem painfully simple, our current absence of knowledge makes this kind of thing seem so damned mystical and has resigned researchers to the hope that they can find answers in microbiology which have alluded them in the real world.

[NHE]

While this development is wonderful for the 13 year old, this kind of thing has happened on occasion through the years and you can bet researchers have sifted through the facts with a fine tooth comb and invariably came up empty.

The article states that she was 14 when she was hit with the MS symptoms that put her in a wheel chair. It also states that she was 20 when she was able to get out of the wheel chair. Six years of wheel chair use probably required her to undergo some pretty serious physical therapy to get to the point where she is now.

Despite my conviction that in hindsight the cause(s) of MS are going to seem painfully simple, our current absence of knowledge makes this kind of thing seem so damned mystical and has resigned researchers to the hope that they can find answers in microbiology which have alluded them in the real world.

I'm really confused by your statement above. Microbiology is a legitimate field of scientific study, i.e., the study of bacteria. It is very much rooted in the "real world." However, you seem to be implying that it is on par with something like metaphysics. Perhaps that's what you really meant?

NHE

[Bubba]

All I can say is "Awesome" good for her! MS or not, from wheelchair confinement to marathons? Amazing, and more power to her. I admit, I dont know the whole story nor the facts, but this gives me positive affirmations, and hope, slim as it may be...

[Wonderfulworld]

When I read it, I couldn't help but think that one possible explanation for her recovery is that she was misdiagnosed as primary progressive and was actually relapse remitting and that her initial relapse was atypically severe and took a long time for her body to recover from it.

That's exactly what I thought too.
I had a relapse hit an EDSS of 9 and it took me well over a year to come back from that. Although I was walking about 3 weeks afterwards with crutches. Maybe she just had a colossal relapse and slowly her system recovered over time.....?

[Loobie]

Thoughts echoed.

[Lyon]

I'm really confused by your statement above. Microbiology is a legitimate field of scientific study, i.e., the study of bacteria. It is very much rooted in the "real world." However, you seem to be implying that it is on par with something like metaphysics. Perhaps that's what you really meant?

Thanks, and you're right NHE.

I've been under the (incorrect) impression that microbiology was researching biology at a micro level, which ties in with my bitching through the years that the researchers have failed to find the cause of MS through seat of the pants deductive reasoning and have resigned themselves to the lab and test tubes and microscopes.

Of course that's intentionally far too simple and partially humorous because labs and microscopes are beneficial, but it's also far too premature to give up on seat of the pants speculation as to what real world factors led to the increased incidence of MS (most cancers, autism, asthma, allergies and inflammatory immune dysfuntions, etc??) among the developed populations while the undeveloped populations of the world retains historic incidence levels.

There are huge clues waiting to be found and waiting for someone to look in the correct fashion, but it is time sensitive as it's obvious that the "geographic gradient of MS incidence" is becoming less and less distinct.

I don't know where I got the 13 year old thing other than "old man, late at night, brain fade"
Bob

[ElMarino]

but it's also far too premature to give up on seat of the pants speculation as to what real world factors led to the increased incidence of MS (most cancers, autism, asthma, allergies and inflammatory immune dysfuntions, etc??) among the developed populations while the undeveloped populations of the world retains historic incidence levels.

So what are the candidates?

To my mind there's:
1*increased emphasis placed on hygiene in the Western world resulting in children's immune systems exposed to fewer pathogens
2*fewer parasites which may have become integral to our immune systems throughout the development of humankind
3*less exposure to sunlight/vitamin d as those in the Western world become less likely to work out-doors
4*vaccinations common in the Western world
5*our diets in the Western world changing
6*more bottle fed babies in the Western world (breast milk helps form a babies' immune system)

I can't think of any more..

What do people think of these?
Any to add?

[Lyon]

Good idea writing them down. I guess if someone could come up with anything else which might have changed during the process of our becoming "developed" which hasn't already been considered....that would be awesome too.

[Wonderfulworld]

Don't mean to be defeatist but I'm not sure that this can work, without rigourously studying the real veracity of each study published.

For example I found some pretty weird things that correlated with MS years ago when I was deep in my "I WILL FIND THE ANSWER" phase.

* Smoked meat consumption
* PWMS had more oral bacteria than a non-MS-er
* Higher eduction correlates to increase in MS dx risk

Sometimes I just wonder if there are not about 5 or so reasons for MS producing a kind of "perfect storm" scenario, and that it can be different for every person with MS - hence the huge variability of outcomes.