‘I woke up one day totally unable to walk – and baffled doctors had no idea why’

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Collette Jackson, 45, baffled doctors after she stopped being able to walk for five years- despite receiving sucessful treatment she is now suffering with Parkinson’s side effects

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A woman who baffled doctors after she suddenly stopped walking has now been hit with Parkinson’s after partially recovering from the unknown condition.

Collette Jackson, 45, from Merseyside, was dubbed a “mystery case” by medics after she suddenly became wheelchair-bound at the age of five and a half. Within weeks, she couldn’t dress herself, feed herself, or play with her friends. The random condition had struck her from her “mouth down” and had stripped her of her quality of life almost immediately.

Both Collette and her family were thrown into the unknown, and were left with no answers from doctors for around five years. It wasn’t until her auntie and mother saw someone named Elaine Douglas, from Ireland, battling with a similar condition. She had appeared on GMTV at the time, and Collette’s mother knew she finally had a name for the condition, a rare form of dystonia.

After spending her time tirelessly back and forth with the doctors, her mother called Great Ormond Street Hospital, who told her about the National Hospital in London. Eventually, she was able to get a referral letter from the doctors, and she was diagnosed with dopa responsive dystonia. It is a disorder that involves involuntary muscle contractions, tremors, and uncontrolled movements.

Over time, the condition can move towards the upper limbs, affecting the entire body. It can also impact coordination, sleep issues, and depression. Speaking to The Mirror, Collette said: “I’ve got one of the rarest dystonias, and it’s got the Parkinson elements of dystonia.” Describing what it was like before the diagnosis, she said: “I started to drag my right leg. Asking my mum to pick me up all the time. Very quickly, I was confined to a wheelchair. I couldn’t do anything from the mouth downwards.”

She was hit with the condition just before she began to learn how to swim. She said the condition continued to get “worse and worse” because doctors at Alder Hey had no idea what was wrong. Fast-forwarding to her pre-teens, she said: “I had a helper at high school, and she was amazing! I obviously couldn’t do PE but I also couldn’t write or talk properly, my helper had to do everything. I wanted to in my brain but the body physically didn’t let me.

Videos showed Collette being fed by her mother after losing her independence due to the condition. But at the age of 11, Collette was given a glimpse of hope after doctors confirmed they wanted to try injections to see if her body would respond. Fortunately it was third time lucky, as she eventually reacted to the treatment.

She said: “There were doctors all around me, they put the first needle in my stomach. They asked me to try and open and close my hand and open my arm. I still couldn’t do it. But the ultimate moment was after the third needle in my stomach, it was definitely a miracle, and within half an hour I was walking around.”

Describing the moment, she said: “I don’t think I can put it into words, it was definitely emotional. As my mother approached, all the doctors from all over the world separated and made a walkway. There was me walking, talking away to the other poor people on the ward. I kept thinking that if I sat down, I might not walk again. I always say I was like Ariel from The Little Mermaid when she wanted to get out of the water, be human and to have legs. My mum and family never stopped fighting for me. I never gave up hope. I always believed.”

She continued: “The injections in my stomach was levodopa injections – a dopamine precursor drug used to treat Parkinsons – the specialists said if I responded to the injections then I would respond to the medication that they would give me the following day. It was a chemical missing from the brain – the part that controls the signal to your brain, I was lacking dopamine.”

Collette was put on Sinemet tablets, which helped her return to her normal life. She only needed a wheelchair for long distances or days when she felt weaker. She added: “I literally didn’t have a quality of life and then I just had this cist for life. I started working as a mentor at a college. I could sing, which I found mad because I couldn’t even talk.

“It was amazing. So I had to learn how to do everything again. I learned to ride a bike at 18 and the big thing to achieve was swimming. And I got to do that at 40. There’s still little things not right with my coordination. So I have a wheelchair for long term and walking distance. Everybody was really shocked and thought I was rid of the illness, but what they didn’t realise was that it is long term.”

She explained how the condition “robbed” her of becoming a mum and said it put a “strain” on her parents’ relationship. She said: “I feel I would have been a fantastic mum but I’ve not had any children because I know if I get sick that it usually affects me slightly longer than the usual person.

“People don’t see is how it affects a family at home. My mum and dad’s marriage broke down. My two older sisters felt a bit robbed in the fact that I had a lot of attention. And then my mum was trying to go through the grief of my dad leaving. So it was quite sad that the happiest bit of my life of me walking, was kind of tipped with sadness because my dad had left just six months before.”

Collette received her “dream job” working at Manchester Airport and began living life to the max with her bubbly personality. She later began to volunteer at the non-profit organisation, Home Start. “I have felt robbed of many things, but I always turned everything into a positive. I have put a fantastic project together about Collette in the wheelchair, it covers bullying, mental health and my belief theory.”

Despite things looking up for the singer, Collette has been suffering with movement abnormalities called Parkinsonism. She now has to endure Parkinson’s symptoms which include painful, prolonged muscle contractions. She also suffers from bowel issues. “I started to become very aware of my right leg, aching and hurting, spasming, twitching, shaking,” she said.

“I got an appointment with Dr Bonello at Walton Centre for Neurology and Neurosurgery [ in Liverpool ], he knew straight away that my right side wasn’t responding the same way and that it was Parkinson’s displaying in my symptoms.” She has been put on new tablets and has learned to overcome the deliberating symptoms. “When he gave me the prescription, I cried all the way to the chemist and back as I drove home. I just went, ‘Collette pull yourself together’. This is just an added extra mixed in with my dopa responsive dystonia.”

Although Collette has had to take a step back from working, she has managed to spread awareness with her own project, ‘The Collette Jackson Story’. As part of the project, she attends schools and colleges to teach people about disabilities as a whole. “I hope this will be pushed with the right people behind me. I would like it to go for training days in the hospital and this was something that Dr Bonello was saying to me,” she said.

Speaking about the case of Elaine Douglas, she said: “She has changed my life by telling her story, spreading awareness is so important for happy endings like mine or to just point people in the right direction. I live for the moment and take one day at a time. I know I am in the best hands with Dr Bonnello and his team. Life isn’t easy, it can be hard as it can for everyone. I never take anything for granted, live life to the full and I want to fulfill all my dreams. I am lucky and I have fabulous family and friends around me everyday.”

For further advice about the condition visit Dystonia UK here.

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