No one expects to find out they have cerebral palsy at 60

Meet Paula, who contacted our helpline after learning she had cerebral palsy – at the age of 60. Until then, she had never received any kind of support.

In January 2015, soon after my mother died, my sister called me and told me I should see my doctor as there was ‘something I should know.’ I went to my GP and asked him to read me the medical notes from my birth. He told me that I had mild cerebral palsy.

I’m 60 years old, and I had known nothing about it until then.

My mother and I had not been in touch for 23 years, for many reasons. I will never know why she didn’t tell me.

There was more of a stigma around disability at that time, so maybe that was a part of it. Or perhaps she thought that because I didn’t need a wheelchair or anything, it wasn’t worth doing anything about. Sadly, attitudes still need to change.

Blaming myself

Not knowing about my cerebral palsy has made my life a lot more difficult than it really should have been.

My movements are awkward and slow, meaning I need extra time to do things. My speech also causes me difficulties. When I’m tired, it’s really hard for people to understand me – almost impossible if I’m exhausted.

Paula and her baby son
Paula and her son

But all my life I blamed myself for my differences, and thought I was just clumsy and slow. I drove myself into the ground trying to keep up at work, and that took its toll on me emotionally. When shown a job, it takes me longer to learn, and it often resulted in people getting annoyed with me.

I was never offered any extra support when I found things difficult. In one job, my colleagues would go home after they had finished their work, leaving me to finish my part alone. A supervisor once said she ‘felt like shaking me’.

I always tried to remain positive and upbeat, but it had a huge impact on my self-esteem and confidence. If I had known more, I think I would have stood up more for myself. And I could have asked for support with things such as my speech, which would have made a big difference for me.

Scope’s support

I rang Scope within a fortnight of finding out, and they sent Olli, a regional response worker, out to visit me. I thought she would have no time for me, but she came out the very same week. She said she had never met anyone who didn’t know about their condition until my time of life.

Olli has been fantastic, and having her information, advice and support has been excellent. With her guidance, I have sought out speech therapy, which has greatly improved my speech. I have also had physiotherapy and seen a continence nurse, and I have had rails installed in my bathroom.

Paula and her husband
Paula and her husband, who have just celebrated their Ruby wedding anniversary.

Life today

And just having this knowledge about myself has changed my life for the better. I feel much less agitated. I always felt I needed some kind of help, but I never knew what I needed or who to ask. I’m finally making up for lost time. I’ve now got the confidence to try new things; I go to Tai Chi, I swim and I am a bell ringer.

 I feel the things I have had to deal with in life have made me focused, determined and positive. I’m more aware of other people’s problems, and how they are feeling.

Excitingly, I’ve recently become a grandma. This got me thinking about my own experiences and how much things have changed. What happened to me – my disability being brushed under the carpet – I wouldn’t want to happen to any child today.

Our helpline is only possible thanks to donations from supporters.

You can help us be there for disabled people and their families by donating to Scope today. Your gift can support services such as our helpline, offering vital information and guidance to those who need it – whether 6 or 60.

Dear Mum and Dad of a newly undiagnosed child

Around 6,000 children are born in the UK each year with a genetic condition that can’t be diagnosed because it is so rare. These are called syndromes without a name. A proud mum who is a member of the Swan UK community has written an open letter to other parents of undiagnosed children.

Dear Mum and Dad of a newly undiagnosed child,

This Rare Diseases Day, I want to tell you that you are not alone. We are here, in our thousands, living amongst the mostly unaware. You are now a part of the undiagnosed community. I am guessing that you feel lost, bewildered and don’t know where to turn. We too have been through the shock and disbelief. You now have a child known as a Swan – Syndromes Without a Name.

No-one knows what the future will hold.

I will never forget being told that 9 out of 10 children presenting my child’s array of challenges remain undiagnosed. It was confusing and incredible that in the world of modern medicine, undiagnosed was even a thing. I was in denial, googling frantically, unable to accept there was no answer. Yet, we are still here six years later. The living proof. I can honestly say that we have never reached the point of acceptance, we search hard for that elusive diagnosis.

Please believe me, our life is lots of fun. Every down turns into an up. Our child is an inspiration who continually reminds us what is truly important in life. It will become easier to live with, I promise.

There are many positives.

Without a label, no-one will set a limit for your child. They are free to reach any milestone without hindrance. No-one knows what the future will hold. Hold tight to the hope and don’t let anyone take it away. Many of us have experienced the joy of our child exceeding medical and developmental milestones and, believe me, it feels like magic.

Your child is unique. This will create an incredible bond between you, no-one will know your child like you do. Medical professionals will turn to you for an insight into your bundle of joy. Any siblings will be equally special and treasured in a way you can only describe. The love of a Swan unifies a family.

It won’t always be easy.

I should, however, warn you that you will plummet into the world of genetics. It will baffle you, it still does me. One tip, unless you are a scientist, don’t buy ‘Genetics for Dummies’ – I couldn’t get past the first few pages. Progress in genetics is nothing short of fascinating. There is a good chance in your lifetime that the ultra rare disease your child has will be identified. When that moment arrives, your reaction will be mixed – excitement, relief, not being sure if you want to know. The possibilities for future treatment and therapies and the opportunity to meet others with the same condition will hopefully follow.

I can guarantee that you will be welcomed with open arms into the Swan UK community. It’s a generous and caring group. We cry as one and laugh together – there is always someone who has had a similar experience. It’s a virtual listening ear sprinkled with a few regional get-togethers to meet up in person.

It won’t always be easy. There will be tough times ahead. It will take time to come to terms with the absence of answers but make sure you take time to enjoy your child. Focus on the positives and always remember, you are not alone. We are here in our thousands supporting each other.

Best wishes,

A proud mum

Visit SWAN UK’s website to find out more about the work they do.

You might not think it, but up to 30 million people may be affected by one of over 6000 rare diseases. Carole Villiers’ son Dexter is one of them. Read Carole’s blog where she shares the story of Dexter’s Angelman Syndrome diagnosis and how it changed her family’s life.