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Helping Hands blog

Hannah’s story: Living with cerebral palsy as a young adult

Meet Hannah, a bright and bubbly 27-year-old with a great sense of humour and positive outlook on life. She loves music and was even lucky enough to watch the Rolling Stones live at the London Stadium in 2018! She also lives with cerebral palsy and has done since birth. Since starting care with Helping Hands in March, she describes her experience as “life-changing”. Here’s her inspiring story and why she’d recommend Helping Hands to any other young person in need of support…

Growing up with cerebral palsy

Cerebral palsy is a motor disorder that affects movement, posture, reflexes, coordination and balance. There are different forms of the condition and symptoms vary between each person, but most find it difficult to control or manoeuvre their limbs. The term is actually derived from the Latin ‘Cerebrum’ and ‘Paralysis’ and occurs before, during or after birth.

With around 1 in 400 children born with cerebral palsy every year, it’s quite a common condition but presents itself very differently in each person. For Hannah, she has lived a relatively independent life and managed to get out and about when she so wishes. Whilst she was growing up, she’s always had regular check ups at hospital and even underwent several operations to release the muscles in her foot and leg, which resulted in Hannah using a wheelchair for five years. More drastic reconstructive foot surgery followed in 2010 and again in 2014.  With the help of a Heads Up! neurological physiotherapist, Hannah was determined to cope and defied the odds by supporting herself on crutches instead.

Hannah attended mainstream school and achieved an A* in Childcare and Health & Social Care GCSEs. Leading an active life just like any other child who enjoyed riding her bike, went horse riding, she even experienced quad biking and rock climbing. Hannah has always turned to music to get her through the difficult times, finding it therapeutic to listen to some of her favourite artists such as Florence and the Machine, London Grammar and Coldplay. She also kept guinea pigs and was lucky enough to find a pup (baby guinea pig) in their enclosure one morning. Although he was unexpected, he was the best surprise she could have wished for and brought lots of laughter and joy to Hannah’s life.

Since leaving school, she’s been to watch one of her favourite bands, Coldplay, went to an X-Factor live show (the highlight being meeting Sam Bailey), learnt to drive and has gone on the obligatory ‘holiday-without-parents’! Yet over the past six months, Hannah’s condition has dramatically changed.

Pain management

In September 2018, Hannah had her nineteenth operation to remove metal work placed during a reconstruction which was threatening to break through the skin. Unfortunately, she was left with Complex Regional Pain Syndrome (CRPS) in her leg – a chronic pain condition that causes a significant amount of pain that is confined to a specific area.

Living with this new condition has now meant that Hannah is in constant pain with severe swelling. When it gets unbearable, she is able to administer morphine to relieve the symptoms and allow her to get a few hours of sleep. However, the side effects of morphine mean that Hannah can only take this sparingly, otherwise it makes her feel nauseous and can sometimes make her sick.

It’s not just Hannah’s sleep that has been affected – it’s all areas of her life. Her social life has completely changed and she finds it difficult to maintain friendships due to not being able to leave her house unaided. And when times are really hard, she recounts how she has sometimes sat at home crying and feeling completely isolated.

How Helping Hands have supported Hannah

Dana, an hourly carer from our Tunbridge Wells branch began visiting Hannah once a week in March 2019 and it has totally transformed Hannah’s life. Instead of only having hospital appointments as a regular means of leaving her house, she now looks forward to Mondays, which is when Dana visits her.

The connection between Hannah and Dana was instant and they have already built up a great rapport in the short period of time they have been seeing each other. So far, Dana has taken Hannah out for coffee and to the local park for some fresh air and a change of scenery, which they have both thoroughly enjoyed.

Hannah says: “Monday is my one day of normality each week and I really look forward to it. Dana and I really like each other and there’s always so much laughter between us!”

For Dana, the feeling is completely mutual. She describes how much she also looks forward to seeing Hannah and why it’s so important to ensure customers are well-matched to their carers.

Dana says: “As soon as I met Hannah, I knew we were going to get along. Being of a similar age to Hannah means that we can talk about age-related topics and that she has someone on her level to chat with. It’s such a pleasure to support her and I look forward to seeing her every week – it doesn’t even feel like I’m working.”

“I don’t want to be cared for; assist me to be independent”

One thing that Hannah requested was for Dana not to wear her uniform when she accompanied her out in the community. She also doesn’t refer to Dana as her carer, but as her personal assistant or PA. It was important to Hannah as a young person that she could feel comfortable with Dana and that she wasn’t being judged.

Although Dana does support Hannah with household duties when her parents are unable to, one of the main reasons Hannah wanted a PA was to make her feel like any other 27-year-old – whether that be going shopping or gossiping about the latest series on Netflix.

But life still isn’t without its struggles. Hannah relies on crutches to mobilise herself and wears leg splints for extra support. She needs regular assistance at home and currently lives with her parents, but hopes to one day get a place of her own.

Hannah strongly believes in not being cared for, but being assisted to remain as independent as possible. She doesn’t refer to herself as disabled – she’s enabled.

 

To find out more about how Helping Hands can support young adults, click here.

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