Edywn Collins

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Edwyn Collins is a muscian who played in the band Orange Juice in the 1980's and then had a world-wide hit in 1995 with 'A Girl Like You'. He had two serious strokes early in 2005 and started neuro- physiotherapy treatment with heads up! in August of that year.

Edwyn Collins at the top of Glen Loth - August 2006

He is a very determined person and, helped by the huge support given by his wife Grace Maxwell, he has made great progress in his treatment.

In September 2007, heads up! spoke to Grace. Turn on your speakers and click below (you may need to click twice if you are using Internet Explorer) to listen to what she had to say.

Below is a transcript of her words.

"Edwyn had a brain haemorrhage in February 2005 followed in quick succession by a second one which involved emergency neuro-surgery, a stay in intensive care and a very long and involved hospital convalescence. He was in hospital for 6 months.

The way his stroke affected him was that he had right-side hemiplegia, dense hemiplegia, and severe aphasia which is speech and language disorder. When he left hospital in August 2005, he could walk a very few steps with the aid of a four-pronged stick and someone supporting him on his right-hand side. And he was still largely wheel-chair bound and required ramps and stairlifts etc as we got around. And that’s the time that we came to heads up!.

In the early phase following his stroke, we were given a very gloomy picture of Edwyn’s prognosis. I remember a stroke consultant telling us that, if Edwyn could transfer from bed to a wheelchair with assistance within 6 months, that would be going some, which I thought was a bit dismal and a bit premature, truthfully.

When he arrived in a hospital rehabilitation unit, the physiotherapist there said that his lack of sensation would possibly mean that he would never walk very well.

I have to say that Edwyn’s and my reaction to that sort of news was to ignore it and think: "We don’t know yet. We don’t know what your outcome will be and we’ll keep fighting."

I discovered heads up! on the internet and immediately the website drew me to it because of the recommendations that people had made for the skill and expertise.

At that time, heads up! had a Wimbledon clinic and we went along to Wimbledon and Edwyn was assessed by Ellen Macdonald. He arrived there in his wheelchair with his orthotic thing, big huge AFO I believe they call it, big plastic thing that went around his leg and his foot, various slings, splints, four-pronged sticks, gizmos.

And Ellen actually got rid of all of this in fairly short order. She assessed Edwyn’s mobility and she’s not one for making predictions either way, she’s really just “Well we crack on and we’ll see how we get on”.

But within a month, Edwyn had abandoned his wheelchair for good. He’d also abandoned all the various other bits of palaver and replaced it with one very simple device to help with his footdrop.

I understand this won’t be for everybody but this was unbelievable to us. And similarly, within a month, he was able to climb stairs which completely transformed the quality of our lives, as you can imagine.

Edwyn continued to work with Ellen until she went to go back to her homeland in Australia, in January 2007 and, throughout that time, he has made steady and continuous progress. We’re always setting new goals, looking for new ways to achieve his flexibility, his mobility and, most importantly of all, his confidence. And since Virginia Grant took over in January, she's continued the good work on the foundations that Ellen has laid down.

And Edwyn has never plateaued. He has never had peaks and troughs – he’s never had troughs, he’s only had peaks and his improvement continues.

The heads up! approach works to me because it is creative. I would say that’s the main word I would use. Each therapist has a creative approach. They obviously bring their training and their experience to bear but, to me, it’s the individual approach to each patient, looking at what matters, what counts to this patient and what can be achieved.

And I’d also say it’s not for the faint-hearted because heads up! therapists will challenge you and will push you to achieve things that, perhaps for somebody who has balance and movement problems, are difficult and sometimes frightening. But the feeling you get when you realise that you are able to do something with ease that you couldn’t do three months ago at all is tremendous.

The support I have received from Edwyn’s physios has gone above and beyond the physiotherapy. They understand with their enormous experience the struggles that go on within families as a result of an event like this and they offer you a lot of moral support.

As Edwyn’s partner I have always felt welcome and involved in his sessions. I’ve learned an enormous amount that we’ve been able to put into practice so I feel as if myself and the therapist work in unison with one another.

And I’ve personally received tremendous support. And I don’t think we could have continued with our really positive attitude and have avoided depression or misery – and we really have managed to avoid it – because he's had such tremendous therapeutic support.

If you can look back and you can see progress every month and you can compare yourself to how you were 6 months ago, if things are constantly moving forward, then it’s very difficult to feel down.

I think we’ve learnt to not put any boundaries or to say that if we can just get near that, it will be enough. The way Edwyn continues to improve, in his words “the possibilities are endless” and that’s the way we look at it. It’s all about the work. If you put the work in, then there’s no reason to think that …. What happens often, particularly in stroke patients, is that you’re told you will plateau, you will hit a wall, you have to learn to accept and adapt. It need not necessarily be true. You can continue to improve many, many, many years down the line, which is what we intend to do.

From being told that possibly Edwyn would never be able to walk particularly well in the early days in hospital, our latest record is 50 minutes around the park with no stick, unsupported, completely unsupported.

And when we go to the Highlands of Scotland where he’s originally from, just by simply holding my hand, Edwyn is able to clamber across rocky beaches, up hills, across fields and long walks on the beach and these are things that are simply miraculous to me. I give full credit to the therapists at heads up! for giving us this wonderful return to mobility."

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