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Bernie: Lockdown life

Our world has been a very different place for almost a year now due to the pandemic. In my latest blog, I am going to talk about what has kept me busy and focused throughout what has been a challenging time.

Let’s turn the clock back to last February when life was normal, I was out at my voluntary jobs twice a week while enjoying a social day too. Unfortunately, I had to take some time out due to my support worker leaving and there was nobody to step in. This was only supposed to be for a short time but it ended up being 5 weeks then the first lockdown happened so basically, I have been staying at home for a full year.

I have only been out of my house a handful of times since last March, mostly when the restrictions started to ease in the summer- getting to go for a couple of cycles was a dream but then the virus was starting to spread again and I didn’t want to take any chances so I stopped going out. It is crazy to think that I have spent the past year in the house as I am so busy- there still isn’t enough hours in the day for me!

Art has been the main thing that has kept me focused during lockdown- I have recently completed my latest collage of ‘The Wee Rainbow’ which is to show my appreciation for the NHS. I love chatting to people so a couple of months ago, I started an activity called ‘Blether with Bernie’ on my social media as I wanted to check in with people…it is so important that we connect during these times. On Christmas day, I decided to do a mini version to support people who spent the day alone.

The feeling of missing people is really starting to kick in now, zoom calls have been brilliant and I really don’t know how we would have coped without technology but it isn’t quite the same as seeing your family and friends in person. I have days where I get emotional for no reason, it just happens…remember it is okay to have off days. I try to stay positive as there are so many people facing heartbreak and my thoughts are with them all.

Online entertainment is my way of taking a break from everything – sometimes we just need a distraction. I really enjoy watching my friend Ross interview celebrities live on his website: The Ross Owen Show – such great guests…always get a laugh and I’m still loving tuning into WestWay Radio on Saturdays at 8pm as my friend Tom Urie presents his show ‘Club Tropicana’ with the best banter and songs.

This journey is still rocky and we are still not sure of when the pandemic will end but with the vaccine available now- there is a bit of hope in sight so hopefully the brighter days will be coming soon, in more ways than one. Let me finish off by telling you what I’m looking forward to doing when the restrictions are lifted- seeing my family & friends, going to live shows and presenting my art collages that I have created during lockdown. It is going to be a joy but for now, we just need to be patient and we will get through this one day.

Stay Safe Everyone!

Tags: Cerebral Palsy, lockdown

Life in lockdown – Barry’s story

Hi, I am Barry or Baz to my friends. I am 41 years old with cerebral palsy.

Down to me stumbling I am in a power wheelchair and use a SL50 communication aid, which is a Lightwriter.

I live on my own with my cat called Ruby. I get support to live by myself – I get support most of the day. I get support in for things that I’m not able to do for myself like cooking and feeding. At night the PA gets me ready for bed, then I go on the computer that I work with my feet because my hands jump.

Lockdown is hard for everyone but one thing we need to do is think we are lucky to be here. In March of last year one of my PAs put a tent up at my back door because I couldn’t go out because of lockdown. This was up for the summer so I could go out and sit in it.

Over the last few years, I find the way I move around was getting harder, down to my age and the bad things I pick up over the years. Before locking down I asked could I see a physical therapist to help me, at my local hospital. When they got around to see me, we were in lock down and she could not see me, so she gave me and my PA a phone call.

The outcome of the talk was she told me about an online website which is called Giraffe which is a personal fitness program. She said I am going to sign you up to do this, there are 8 exercises in the program to do to support you.

To do these exercises I got sent out two fitness bands from the hospital. I was told to start on the green band because it was less difficult to start off with, when the green band gets easier, I can move onto the blue one. When I put Giraffe program on each exercise has video to show you how to do it right, then you can write how you feel after doing it – I personally think this is good.  All information that I put in is checked by the physiotherapist. Sometimes I feel so down because I can’t see my friends but doing things like this helps me.

A life of Bobath therapy: Ewen’s story

Ewen and family

For Ewen McIntyre, soon to turn 60, the Bobath concept of therapy has been – and continues to be – a central part of his life.

Despite the challenges of living with athetoid cerebral palsy, Ewen’s life is full of friendships, fun and very much good fortune. Growing up in sunny California, Ewen continues to enjoy life and lives happily at Capability Scotland’s Upper Springland in Perth. And for the last seven years he has also worked directly with Cerebral Palsy Scotland in Glasgow.

Ewen, Ann and Donald
Ewen, Ann and Donald

Ewen’s parents, Ann and Donald, grew up as neighbours in Edinburgh and on their marriage in 1957 Ann joined Donald in the college town of Claremont, California, where Donald taught geology for most of his career and where Ewen was born in July 1961.

It was several months until they became aware that there was something unusual about Ewen’s physical development progress. In due course on a visit to a hospital in Los Angeles, this problem was diagnosed as a form of cerebral palsy. On explaining to the doctor they were shortly to be visiting Ewen’s grandparents in Scotland, they were advised to include an appointment at the Bobath Cerebral Palsy Centre in London, and in August 1962 were able to arrange a consultation with Mrs Bobath. They were encouraged by her assurance that the Bobath approach to physical therapy could help Ewen to progress if the family were able to make a return visit to work with her and her team the following summer.

Ann continues, “We were, of course, eager to follow up on this offer. Happily, when Ewen was two years old and thanks to a financial windfall, in 1963 and subsequent summers we were very privileged to benefit from these annual visits to London and enjoy and learn from Mrs Bobath and her helpful staff. Each visit in its own special way, was a remarkable happy and heart-warming experience.”

Ewen and Mrs Bobath
Ewen and Mrs Bobath

“Dr Bobath gave a strong medical background to the clinic and for both of them, Mrs Bobath’s work with patients and students was their supreme delight and a unique gift to families like our own who were adapting to life with someone challenged by cerebral palsy. As a couple, they had so much fun together, teasing each other with jokes and laughter while all their energy and interest was poured out on working in concert together to help their patients at their very busy clinic. And now sine 60 years on, this London centre continues to retain the Bobath name and its fame as an international teaching centre for physiotherapists.”

“In 1963, for us as new parents, these visits were always a time of learning, of interest, encouragement and pleasure as we tried to increase our understanding of how best we could help Ewen. And we were greatly cheered by spending time with other young families and adults with cerebral palsy who, despite their challenges, were able to live full and interesting lives. On some of our London visits we lodged at the home of a friend who lived just around the corner from the Bobath clinic, where the Queen’s horses went clattering by each morning while out on their daily exercise. Perhaps it was no wonder that Ewen himself came to be an enthusiastic horse rider and, in 1980, won an award at the National Cerebral Palsy Games in Texas, USA!”

Ewen horse riding
Ewen horse riding

“These annual summer visits led to a personal connection between our two families. When Mrs Bobath was invited to Los Angeles to deliver a lecture there we were greatly honoured to have the couple spend the weekend with us at our Californian home. We were delighted to share with them the fun of Donald leading us all on a geological visit to The Joshua Tree National Park. The unique and beautiful rock formations there were indeed of special interest to Mrs Bobath who enjoyed sculpture as a hobby.”

“In 1989, on Donald’s retirement from teaching, our family chose to return to our native Scotland so that Ewen might benefit from linking up with Capability Scotland’s Upper Springland centre here in Perth. This has indeed turned out to be an excellent move but some time past before we learnt of the existence of the Bobath Scotland centre in Glasgow.”

“So a new chapter has opened on Ewen’s life and our regular visits to the centre over the past seven years have become a highlight of learning and of helping Ewen to hold his own. He continues to benefit as well as to greatly enjoy his work with the skilled and patient senior physiotherapist and friend Philip Vervaeke, at what has wisely been renamed Cerebral Palsy Scotland. The therapy Ewen receives there is of superbly high quality. I would say that Ewen has a confidence that he probably wouldn’t have had otherwise. The lovely, cheerful way that Philip works with people, Ewen just really responds beautifully to him. And currently, in keeping pace with these difficult times, some helpful virtual therapy sessions are ongoing between Perth and Glasgow!”

Ewen at Upper Springland
Ewen at Upper Springland

“For Ewen as an adult, the object and the benefits from Bobath-style physiotherapy certainly succeeds in helping him hold his own by slowing the pace of further deterioration in his physical well-being. Ewen can sit up straight – though sometimes only on reminder! – he smiles and laughs his way through each day as a happy and physically comfortable person. And from the bottom of our hearts we are grateful to all who help him. For the important part which you play, a very big thank you to Cerebral Palsy Scotland!”

Tags: Bobath therapy, Capability Scotland, Cerebral Palsy, cerebral palsy scotland, Therapy

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 

Tags: Cerebral Palsy, Education

World CP Day: What can you achieve?

Cerebral Palsy Scotland volunteer Marion

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 3rd 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, 29th September 2020

Marion award photo

Tags: Cerebral Palsy, Education

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