Hello

I’m Paul Timmins. I was born with cerebral palsy hemiplegia & diagnosed at 5 years old. I’ve launched Adult Cerebral Palsy UK to provide support for other adults with cerebral palsy, and their friends and families.

I’m asking for your support to raise money to open a freephone helpline and increase awareness of the behavioural problems that exist with CP. Our mission is to press Parliament to acknowledge these problems and to put a new mental health support system into place.

Best wishes and thank you.

Paul.


Adult Cerebral Palsy UK is campaigning to raise awareness of the problems facing adult sufferers of CP and seeking to establish a support line for the 130,000 adults in the UK, with the condition. At present, once you reach 18, support vitually disappears.

Respite carers are needed to provide support and resources via a free helpline. A understanding voice at the end of the phone would support Adult Cerebral sufferers when we need it most.

With no Government funding for this work your support is vital, with every donation you make helping to transform lives.


The Team/Trustees

Dean Putko

I was approached by my best friend Paul Timmins and asked if I would be a trustee to help follow his dream and be a part of the charity. Of course I said yes as it is a fantastic dream and one I know he will succeed in whilst helping many others along the journey.

I am a sufferer myself of mental health and have been diagnosed with many behavior difficulties which mean I understand a lot about what Paul is trying to do here. I have vast knowledge on medications and have much knowledge also on therapies that can help.

I’m honered to be a part of this and can’t wait to see so many people get the support and help they rightly deserve.

Jody Nott

I’ve predominantly worked in the care sector and have done so for the past 18 years. I specialise and have a personal passion for excellent end of life care.

I have remained in this sector as I thrive on making people feel good about themselves and to be cared for in a holistic approach. I have cared for someone with Cerebral Palsy and have seen the struggles thay people with CP live with.

I’ve seen how behaviours are misunderstood and misdiagnosed, and want to help alleviate some of those stresses.

A message from our founder

Hi my name is Paul Timmins. I was born with cerebral palsy hemiplegia. All of my life I found myself to have struggled slightly different from others. I’ve never found any help as an adult with my impulses, decision making, emotional states, frustration, anxiety, confusion and social interaction. At the age of 36 I came to understand that there are cerebral palsy adult behavioural problems. Due to this I started looking into more research and found out that there is some help out there.

So if Zoopla can bring everything into one place, surely I can find the same kind of way of bringing the few foundations together and funding to bring awareness to society and more research for the professionals that cerebral palsy is a real issue.

All I can see and hear is “the parents” and “the children” and every brain cell is needed, so why is there no help for people like myself physically, mentally and emotionally?

I don’t only drain myself and my surrounding but also those around me. Adults with cerebral palsy do not seem to get the correct help and we are truly brushed under the carpet (of mental health) it is not only a disability, but also a malfunction and a deformity of the brain! These things are not treatable but are changeable to the whole world and the system because there are few resources to help children see and understand not only the traits but what the condition actually involves.

You can’t teach a dog to fly, so why do they try and treat us under mental health just so they have a feeling that they understand, or believe they have and understanding in place, for different diagnosis’s like ADHD or Bipolar etc? this is not the correct method.

So, on that note, where and how to advance the studies and training of the students and the carers to help, because there is a sell by date of 18 and then there is nowhere to turn!

I feel pleasure or sadness, no in-betweens. Confusion turns rapidly to frustration and my frustrations whether happy or sad dramatically switch to destructive behaviour. This cycle of though process is purely random and instantly fast. I can hurt myself or others emotionally and physically.

I suffer with blackouts when totally frustrated and I’ve always believed I suffer with mental health problems due to different professionals giving me all sorts of diagnosis that never make sense! For example, one highly paid NHS psychiatrist told me to “shut up” when I asked him to look at my cerebral palsy! This really upset and frustrated me so that I was crying and no longer wanted to be in front of this man. As a result I was diagnosed with “emotionally unstable personality disorder” Really??

It has been proven that my brains retention of information runs very slow. How am I meant to keep up with what’s going on if I’m being misinformed all of the time, or not picking up/retaining the information I am being given? I need real help from people with the correct resources that have the correct research. It’s almost impossible to be put in front of the right professionals and I always become the judged.

There is admittedly not enough research on why cerebral palsy causes these behaviours. Nobody in society seems aware of this lack of support and when they hear “cerebral palsy” they only expect you to be physically challenged.

I can be one of the most caring and nice people you will come across, but my brain seems to work without full stops or brakes, so I find myself always over speaking, interrupting out of turn and speak about 4-5 subjects simultaneously. This frustrates and confuses people then my surrounding change, becoming challenging, and I become emotional or disruptive.

I have learnt that my social behaviour is a form of mimicking my environment. Like a chameleon must never show his true colours or it could be in danger.

I’ve noticed as I’m older I can sort of control my tantrums, but there are very common moments where the “easiest” decisions (like blue trainers? red trainers?, stay in, go out?) can put me into my “spiral of doom”.

It always becomes this way when faced with multiple choices! My brain starts to fry itself with crossed wires, or if I’m asked to participate or take part in tasks/social ongoings I don’t want to do.

I can’t help myself. I speak before I think and I agree to things I shouldn’t. I don’t see it coming and before I know it I’m a hysterical mess, mentally shut down and work myself into a panic and hit the “brick wall” I can’t control myself and I don’t see it coming, then before I know it I am displaying challenging behaviour.

I don’t know what parts of my brain are damaged, but I’ve read over and over explanations of the brains workings. There is a part of the brain that is in control of decision making, called the Basal Ganglia, commonly affected in cerebral palsy patients. I’ve recently been for brain scans simply to be told nothing has changed from the last time (aged 5) what information is there for me with that?

There needs to be more research… my mother struggled with my temper tantrums as a child, smashing my whole room up until I burnt all of my energy out and became approachable. As a child you get a minor punishment and maybe a cuddle afterwards. As an adult these “tantrums” become illegal and possibly custodial!

There needs to be more help and support for the families and the people close to the adult cerebral palsy sufferers displaying these patterns of behaviour, because it’s hard work and emotionally draining on them.

Respite carers need allocating to relieve this tension, also just a warm understanding voice on the end of a freephone helpline with the correct support, with the right resources and a true understanding of the struggles.

I’m not any type of doctor or professional in any sense, but what I do know is that there is a big piece of the puzzle missing, and I have discovered this through asking and searching (admittedly begging) for help, support and advice. With enough noise and support from others I’ll make this painful journey right.