Tag: Cerebral Palsy - Page 7 - Cerebral Palsy Scotland

Iain MacLeod: Wheels galore!

Writer Iain MacLeod talks about his experiences of growing up with cerebral palsy in the Western Isles.

Born in Stornoway, Lewis, Iain MacLeod now lives in the North East of Scotland. He has spent his life challenging expectations, studying, driving and living life in every way he can, including studying through the Open University.

Cherish each day and live it to the fullest extent possible. Every moment is precious, and not to be wasted. Life is for living, not waiting to live.

Iain tells the story of how he pursued his own learning and education, at a time when schools were very different than today. He also shares his advice for people with cerebral palsy and their parents.

I hope to inspire my readers to rise above the perceived limitations of disability and live life their way with grace, guts, and gusto!

Read some of Iain’s life story in Iain MacLeod – Wheels Galore blog

Visit Iain’s website and find out how to get a copy of his new book Wheels Galore!: Adaptive Cars, Wheelchairs, and a Vibrant Daily Life with Cerebral Palsy where he tells stories of his life with a kinds of wheels from wheelchairs to cars: https://www.wheelsgalore.scot

World CP Day: What can you achieve?

The Biggest Achievement in My Life: Marion remembers the boost of achieving a goal and getting a qualification.

Our volunteer, Marion has written a blog about her experiences of studying a computing course at college while talking about how CP didn’t stop her from achieving her goal. Thank you to Marion for this wonderful blog, a perfect read ahead of World CP Day, read what she has to say:

Hello everyone, I hope everyone is well and keeping safe.

As Cerebral Palsy Day 2020 is approaching us, I thought I would share with you my greatest achievement in my life. This blog might encourage you to take up something new!

When I was 18 and when I finished school I went to my local College to do my ECDL (European Computer Driving Licence) . My dad managed to get me on the course by talking to the College and they agreed to have me on the course. I loved being a student with a disability as I was in a class with mostly able bodied students.

I enjoyed going to College by myself with a support worker, I felt it was a great opportunity for me to do something independently. The College was very accessible and I liked going to the café and meeting my friend.

I got excellent help from the College’s unit for people with disabilities. The special needs advisor helped me set up my Intellikeys keyboard so I was able to use their PCs. They even fought for me to get extra time for my exams, that took time, but we got there in the end. Although I was later than all the rest of the students to take my exams, I was the 3^rd top student in the class.

I had always been interested in computers so the ECDL was right up my street. I started on my first computer when I was 3 years old when my Dad set me up on a BBC B computer.

When I did this course 18 years ago, there were 7 modules which included, Word Processing, Spreadsheets, and Information and Communication.

Then after my ECDL was finished I got a lovely surprise and won The Provost’s Community Award for Special Needs Adult, The prize was a trip to London and while there I went to see Chitty Chitty Bang Bang

I have used my skills that I have learnt from doing the ECDL to work in 2 offices, and had my own little business making stationery.

Having Cerebral Palsy didn’t stop me from achieving a European Certificate for my computer work, and my advice to anyone who is thinking of doing something that you are wanting to do is to keep at it. You never know what you can do!

Marion Burns, 29^th September 2020

World Cerebral Palsy Day

What is it? How can you make your mark?

October is usually the month of Halloween, but did you know that there is a very important day before it? Yes, that’s right – it is World Cerebral Palsy Day on the 6th! The special day is to raise awareness about the disability which affects 17 million people, around the world. There are many ways that you can show your support for World CP Day.

We all know that the world is a very different place this year due to the pandemic but we can still support Cerebral Palsy, in our own way. World CP Day is a great opportunity to tell people what the disability means and to make people aware that CP doesn’t stop anyone from achieving amazing things in life. The campaign for this year’s event is called ‘Make Your Mark’ which encourages people to share their achievements and experiences of living with CP.

There are many different ways that you can Make Your Mark:

Share your story of CP by going to the ‘World CP Day’ website and adding your story to the map
Share an achievement you have accomplished- old or new
Going green for CP by wearing the colour green or decorating your home in green as part of the #GoGreen4CP campaign which we have seen, in recent years

A big part of World Cerebral Palsy Day aims to make sure that everyone has easy access to support services, this is extra important this year. “To mark this day in support of Cerebral Palsy, I will be making my mark by creating a video to share my story of living with CP which will be posted on social media. I want to get the word out there that having CP, doesn’t stop me from doing what I want to do, yes life can be challenging but I always find a way”- Bernie Hunter

We at Cerebral Palsy Scotland would love to know what you are doing to mark World CP Day, let us know by going to our social media channels- we are ‘@CpScotland’ on Twitter & ‘@Cerebralpalsyscotland’ on Facebook.

Come on let’s raise awareness and turn the world green for Cerebral Palsy on October 6^th 2020! #MakeYourMark #GoGreen4CP

Life after lockdown – Survey Results

As restrictions have eased and some aspects of life have returned to something more like normal, how have things changed for people with CP?

Thank you to everyone who completed the survey about living with CP during the pandemic, and how it’s affecting your lives.

This is what the survey said:

76% said that the Covid-19 situation had put more pressure on family life
Over 50% said that their family was more isolated as a result of the restrictions.
71% reported that any care arrangements they had in place previously were not yet back to the levels they were pre-Covid.
55% responded that their physical health had declined
53% responded that their mental health had declined
30% of the survey classed themselves as “shielding” although only 8% reported that they had received an official letter, reflecting how vulnerable people felt as a result of their condition.
58% reported difficulty in accessing support from physiotherapy, occupational therapy and speech and language therapy with 51% only able to access healthcare services online or via telephone.
79% of families have sent their children back to school but of those who haven’t, 20% felt that their school or nursery would not be safe and 20% reported that the school or nursery could not currently accommodate their child.
82% of respondents were happy with the level of support they had received from Cerebral Palsy Scotland.

What does this tell us?

Following on from the results of the Impact of COVID for people with CP May 2020, these updated results show that people with CP and their families have found restrictions particularly difficult, despite the need to combat COVID-19.

People feel more isolated and unsupported
Care and health services have not yet been fully restored
More than half report decline in physical and mental health and wellbeing
Many cannot access the health services they need

Read the survey results, other peoples experiences and the conclusion in full here.

The previous survey results from May 2020 are available Impact of COVID for people with CP May 2020.

CP Connect – therapy and support during Covid

During the Covid outbreak, Cerebral Palsy Scotland’s CP Connect service is offering free therapy and support to children and adults.

CP Connect aims to help address the physical and emotional needs of people with CP at this time, and help build strength, mobility and confidence.

Find out more and register for CP Connect.

Understanding the impact of COVID-19

Please help Cerebral Palsy Scotland build up a picture of the impact of the restrictions on the lives of people with cerebral palsy.

We recognise that the current crisis has put additional pressures on people. The survey we conducted in May was extremely helpful in painting a picture of what life was like for people with cerebral palsy during lockdown. The results of the survey were widely shared with Scottish Government and the NHS, University studies and umbrella bodies such as Neurological Alliance of Scotland and the Health and Social Care Alliance. The survey was even highlighted in an article in The Times this month. At Cerebral Palsy Scotland we used the findings to guide us on how we could support people during this time. Thank you for taking part.

Now that restrictions are easing, shielding is paused and the schools have returned, we would like to check in with you again to see how people are feeling now. This will help us build up a more robust evidence and track the impact of the restrictions for people with cerebral palsy over time.

By completing this short survey, you will help us to:

• check the services and support we are providing remain relevant and helpful,
• find out if we need to adapt our current services, or develop new ones,
• inform key agencies like the Scottish Government and the NHS about the issues faced by the CP community,
• report back to organisations that fund us about and additional pressures people are facing so we can secure the resources needed to help.

The survey will remain open until midnight on Tuesday 1 September. The more information we receive and the sooner we receive it, the more able we will be to deliver effective support to everyone that needs it.

Thank you in advance for taking the time to complete the survey. We really appreciate your help.