Sponsor a Star: How an early diagnosis can make all the difference
On the fourth day of our campaign to help raise £1m to kit out a new Sue Ryder neurological centre, MEGAN TITLEY finds out how getting a diagnosis can make all the difference
“If I wasn’t here, it would be better for everybody else.”
That was the thought going round and round Bev Sharrock’s head as she sat in her kitchen in Clayton-le-Woods.
Taking a bottle of wine from the fridge, she poured herself a glass. Her tablets were in front of her.
As she sat there thinking about the release from her suffering for herself and for her family, the phone rang.
It was her nephew Josh. His little voice rang out over the receiver.
“I love you, Auntie Bev!”
“And he slammed the phone down,” said Bev, 52. “He was at my mum and dad’s on Boxing Day and as kids do, saw a button on the phone. It said Bev and he picked it up, pressed it and said that.
“Now you will never convince me to this day that that was a coincidence.
“After that it was like a wake-up call. I cried. I must have cried for hours.”
Bev had been at rock bottom. It was the lowest ebb in her life. But it also represented a turning point. It led to her finally being diagnosed with Antiphospholipid syndrome (APS), a disorder of the immune system that causes increased risk of blood clots.
Although being diagnosed was a lot to come to terms with, it was also a relief for Bev and her husband Dave, who for years were told that Bev’s illness was all in her head.
“If it wasn’t for the Sue Ryder staff at Cuerden Hall I don’t think I’d be here now,” said Bev. “They pulled me through it. I don’t ever want to go there again. It was awful.
“I’d been told it’s all psychological, it’s in your head so then they said I had to take anti-depressants. If I took those, the chemical imbalance in my head would be fine.
“I started taking them and I just had no feelings at all. I was like a zombie. I didn’t really care about anybody or anything.
“I was in such a bad way because you they’re making you feel as though you want to be like this. You think, ‘What sort of a moron am I to put my husband and family through all this.’
“Then unfortunately I started drinking. That got really heavy over a period of two or three years, but the staff here were marvellous. They don’t condemn you, they really pulled me through it.
“It was Christmas, things hadn’t been very good and I was feeling very low. Boxing Day me and Dave, we had words. It was understandable with all we’d been through and he just stormed off.”
That was when Bev came close to taking her own life. Later, when Dave came home Bev told him what had happened.
She said: “I told him about everything and we decided I wanted to get help and I did.
“I went to the doctors and they put me in touch with the drug and alcohol support people, they came to me for six weeks and now I’ve not had a drink for more than 10 years. I started coming here and really I never looked back. Coming here has been a real life changer for me.
“Now I’m living a life, not an existence.
“They’ve made such a big difference to me because when I ended up in the wheelchair I had no confidence.
“I’ve had a series of small strokes. I had trouble with my speech. It got to the stage where I wouldn’t even answer the phone.
“I was pretty low and in a bad state but here they don’t just treat your disability they treat the person as a whole.”
Terry Mears, centre director at the Sue Ryder Neurological Care Centre coming to Fulwood, says some neurological conditions can take time to diagnose.
“It can be challenging for a clinician to really pin point what the issue is,” he says.
“What’s really exciting about the new centre is that early point of diagnosis. It can be really basic but it can be huge in terms of people’s wellbeing. It’s key in supporting people going forward.
“We know that with diagnosis, the sooner people can get advice, information and signposting to other services they have that capacity to maintain their independence for much longer, often times in their own home.
"They can maintain their employment, maintain their hobbies and interests and their circles of support.”
Relating that to her experience, Bev said: “It took a long time to diagnose - about 15 years. I kept seeing different neurologists.
“They kept doing scans and things. Nothing showed definitely so then they went down the route that it was all psychological. That was soul destroying.
“That happens to a lot of people with neurological conditions. You start doubting yourself.
“Eventually I got a diagnosis from a neurologist. He said straight away that’s what it was.
“I had intensive physio to try and help with my legs and it was while I was having physio that I had my first small stroke.
“Then things started getting progressively worse but at least we did have a diagnosis.
“I mean, it’s awful, you go to the hospital and you’re hoping they’ll tell you there’s something wrong with you.
“It was a strange situation to be in when they told me I wasn’t going to walk again. It was hard to realise that if I’d been on Warfarin soon enough I would be able to walk now.”
Bev has had to have speech therapy which has helped here voice a bit but her vocal cords are damaged with the stroke.
“They said that I could lose my voice completely again eventually.
“Then again when the specialist told us that it was a nice moment... when I looked over at Dave’s face he looked overjoyed at the thought that I’d never speak again.
“You’ve got to laugh otherwise you’d go under.”
Bev says that mentally she’s in a far better place these days.
“That’s not because of the medical profession, that’s because of Sue Ryder,” she said.
“They help people to reach their full potential. We had a young lad come in one time. He just sat in his wheelchair but you watched him over time and he changed.
“The girls were great with him, they brought him into activities and one of the carers said something to him and gave him a hug and his face lit up.
“He had the biggest smile on his face - they made a big difference to him.
“We had one lady who was in here and now she lives out in the community. When she came she couldn’t do anything. It is amazing what they can do.”
Speaking about the Sponsor a Star campaign, Bev added: “I think that the money raised will help to achieve Sue Ryder’s vision.
“When this place was started as a home, somebody with Huntington’s might have been living in an asylum because people didn’t understand it properly.
“Moving to the new building will help to carry on the legacy and then dream that she had.
“She was a remarkable lady. The best way to honour Sue Ryder’s memory is to move forward and carry on the great work that she started.
“I’m really excited. I want other people’s lives to be altered like mine has been.
"I want people to realise that you can have a life even if you’re on wheels.”
“You’ve got to laugh, otherwise you’d go under.”
And Bev does laugh. In fact she’s Sue Ryder’s official volunteer chuckle therapy coordinator.
“I came up with an idea to start a conversation group to try to get the residents to talk because they won’t open up,” said Bev. “To do that I had to become a volunteer even though I’m here twice a week but that opened up a lot of doors for me.
“I go to Sue Ryder events and I’ve been able to talk about my experience as a volunteer and doing that has done me good. It’s given me a purpose.
“The conversation group didn’t really go all that well but I started noticing that if you add a bit of humour in it’s like flicking a switch. It’s like people start waking up. You start laughing and joking and then it’s like they’re letting you in and they’re opening up to you.
“So I’m now volunteer chuckle therapy co-ordinator - it’s official.
“It’s just about coming out with stupid things.”
Bev says her husband Dave is often the butt of her jokes. She adds: “We normally joke about him and about life in general. I love winding the staff up.
“Sometimes the staff, if they’re having a bad day, they’ll come and talk to me.
“They know it won’t go any further but they can talk to me because that’s something I can do. I really it. I feel part of something wonderful.”
Antiphospholipid syndrome (APS), sometimes known as Hughes syndrome, is a disorder of the immune system that causes an increased risk of blood clots.
This means people with APS are at greater risk of developing conditions such as:
* deep vein thrombosis (DVT), a blood clot that usually develops in the leg
* arterial thrombosis (a clot in an artery), which can cause a stroke or heart attack
* blood clots in the brain, leading to problems with balance, mobility, vision, speech and memory
Christmas wish list
* £370 – could buy a TV for a resident’s room to occupy them in the evening and allow them to catch up on their favourite programmes. TV can enable people to share experiences and stories with others.
* £2,000 – could buy a specialist bed and mattress. People with neurological conditions can have restricted movement, so this can enable a resident to sit up, lie down and re-position their legs.
* £8,000 – could build an occupational therapy kitchen to help with the rehabilitation for people with complex neurological conditions and acquired brain injuries. This can allow them to regain functional mobility and independence, rather than relying on someone to make them a cup of tea or prepare food.
* £14,000 – could buy a specialist bath which promotes a sense of well-being for residents and eases the muscles and relaxes the mind. These baths are accessible for all residents.
* £113,000 – could buy hoist tracks and motors to be able to safely move residents with mobility issues from their bed, to their bathroom and into a wheelchair.
* £3,000 – could furnish the day service room – a fun and exciting environment for all residents to enjoy and socialise in.
HOW TO DONATE
Readers are welcome to donate any amount to the appeal. Anyone who donates £10 or above will have their names included in our Sponsor a Star article in the paper, just before Christmas.
To donate, go to www.sueryder.org/makeadonationOr send a cheque to:
Lancashire Post Appeal,
183 Eversholt Street,
London NW1 1BU