Category: Blog - Page 13 - Cerebral Palsy Scotland

Using my toe to type

In this blog, Barry talks about the skills he has developed to allow him to type and use a computer.

Hi, it is Barry Smith or Baz as I like to be called by my friends. As you all know I have cerebral palsy, but it doesn’t stop me from writing on my computer.

But I don’t use my hands. I have a big keyboard with an overlay on top of it. Down to my hands is very jumping which comes off of my CP, I type with my big toe. Then down to me can’t work a mouse, I use a jelly skill and work it with my foot.

I started using my big toe do things when I was 6 years old, like working the video. When I was 19 years old I got roll ball I move it with my toe.

In 2013 when I was doing a computing course at my local college, a boy looked in my classroom. One of the staff asked him what he were doing, thinking he was up to no good. He told her, I can’t get over him using his toe!

I use my skills to communicate to people what I want in my life. How I feel about having CP – if my hands can’t do something and my big toe or foot can, then I use them. My legs might can’t walk, but this won’t stop me.

Anyone can dance

This week, blogger Bernie Hunter shares her experiences of learning to dance, the adventures it has taken her on, and what happened next.

Dance was a big part of my teenage years – not many people know this so let me take you into my dance world. In this blog, I will give you an insight into my performance days including sharing my experiences of rehearsals and shows.

In 2009, I came across a music and dance workshop that was taking place at a local theatre. It was during the summer holidays so I was up for trying something new even although I hadn’t danced before. The group was called ‘Make Music Move’ (now M3) involving professional dancers and musicians from the organisation Paragon Music. Paragon, is a music charity that helps people with additional support needs to create music and dance. They teamed up with a wonderful choreographer, Caroline Bowditch as well as another dance company to create M3.

Everyone was welcomed into the workshop, it was very inclusive- the group didn’t see disability and as a teenager, that really helped me.

I watched how the dancers worked with the participants and that was when I realised that this was something special. After a couple of sessions, I started to take a real interest in dance. I attended M3 as a participant dancer for 5 years- I had many opportunities handed to me on a plate that I will always be thankful for.

M3 ran regularly with rehearsals happening throughout the year plus intensive weeks every so often, this was when we were creating a piece. We had a number of performances to do as part of dance shows in theatres. This is where the opportunities came in – I got to perform in the Theatre Royal, Glasgow…what a feeling and I also travelled to Dundee Rep Theatre annually too. That doesn’t happen to people like me and I don’t mean because of my disability, just in general.

My theatre memories will always be a big part of my dance days, the experience is just phenomenal. A real mix of feelings when you are out on that stage of excitement but lots of nerves too. One memory that comes to mind is when I was doing a solo dance and an hour before the show in Dundee, I found out that not only that I was the first member of M3 on stage but I was opening the WHOLE dance show…total fear waiting side of stage but such a joy to do.

Talking of my solo dance piece, I actually created it myself in my living room. I went into rehearsals the next day and told my dancers that I made a dance…they couldn’t believe it and I was so thankful that it made the stage. I was told by Caroline that I could go down the dance route as a future and that meant so much to me.

I never thought that I would be a dancer due to having Cerebral Palsy with my movements and being in a wheelchair but anything is possible.

The professional dancers were very good with me, we worked together and came up with moves that I could do in my chair. A couple of years into my dance journey, I decided that I wanted to come out of my wheelchair to dance duets…it was the best decision ever. I could do so much more…it was freedom. My fellow M3 participants followed me and at one point, everyone was dancing out of their chairs!

As I got older and life got busier, I had to leave M3. Unfortunately, I couldn’t attend all the rehearsals. Although that this was the case, I helped Paragon Music run M3’s social media accounts which then leaded to me being a volunteer with Paragon- I am the charity’s Digital Development Assistant now.

I would like to give a big shout-out and thanks to Paragon’s creative director, Ninian Perry and former dance artist in Association with Paragon, Caroline Bowditch for supporting me through my dance journey- I really learnt a lot from two of the nicest people ever. All of the dancers and musicians were like a big family and I am so lucky that I still keep in touch with friends from M3- I will always be grateful for my dance days.

Mini Q&A

Favourite Memory – Performing in the Kings Theatre Royal to ‘Let music make you move, set your feelings free’

Most Pressured Show – Leading a dance piece at Macrobert Art Centre, Stirling. 8 beats!! If I counted it wrong then it would have affected our whole piece

Do I miss dancing? – Yeah, I do and I would go back if there was an opportunity

Favourite Venue – Kings Theatre Royal

Barry: Respite care and holidays

Respite care and holidays

Hello, it is Baz Smith here again with a blog and I am going tell you about two holiday centres which are run for disabled people. The centres I am talking about have 24 hours care for people who need it.

The first one I am going to talk about have four centres in England. The nearest one to Scotland is in Southport and it is call Sandpipers. I went there about six weeks before the first lockdown started, thank god I was back up the road before the UK told everyone Stay at home in March last year. The centre has Nurses and Careers all around the clock to meet the needs of disabled people. It has a bar for anyone who likes a drink. The centre looks onto the sea, which looks nice when the sun goes down at night. As well it has an indoor swimming pool. I knew before COVID19 you just need ask a member of staff and they would get it planned for you to go in with Volunteers to watch you when swimming.

You would get three meals a day. Breakfast is cooked for people who want it, or you can have a cold Breakfast. If you need help to eat or your food cut up someone will help you. When eating your breakfast have a look at the Dinner (Tea) menu and if nothing you like was on it, please tell a member of staff and they will let the cook know and they will come and ask what you want to eat.

Before COVID-19 they did bus run to get people out, but I do not know about now. Most days the Bus runs to visit some places liked the shops in different towns. If you want go you can go to four places a week. A member of staff would come around on a Monday and tell them what trips are on for that week, and the person picks. Then when everyone has picked the staff tell everybody when they are going out and who will be going with them to meet their support need. On the day you are out you are given a packed lurch before you go on the bus. All their buses have lift for wheelchair, or if you are not good on your feet.

You might be asking yourself now can I get there from Scotland, if you get the train down you need to change at Waling then walk about 5 minutes’ walk. If you are in wheelchair you must book Trains and Ramps. When you get to Southport you get cab up to Sandpipers or walk up, which would take about 30 minute. You will pass by the smallest pub in England but it doesn’t have any Wheelchair access.

In every bedroom there is your own Tv and en-suite toilet with hand rail and a wheelchair access Shower and Shower Chair if needed, as well over head Hoist and the beds can move up and down. There is an on call button. The night staff can do night check if for anyone who needs it.

If you do not want to go Sandpipers, they have three more Centres around England, to find more about them please visit https://revitalise.org.uk/

The next Holiday place I am going tell you about is Calvert Kielder.

You can go there with your family or friends. Or, if you are over age of 18 you can go on respite and let their Staff take care of you.

At Calvert Kielder they have got a respite team for any disabled person over the age of 18 who wants go on holiday by themselves and get their support needs met by the team at Kielder, like washing, bathing, dressing and feeding. When booking you tell them your needs so the staff know how to support you on your holiday.

If you are a part of the respite team, the staff will make a support plan up with you, so all your needs will get met. You will stay in main centre where the carers are on around the clock. If you are on respite team you get three meals a days and a programme of things do is setup. for liked going a Buggy and water sports no matter which age you are.

Family who have someone with a disability can go and stay in a little house and ask if they can take part in things to do. It has a swimming pool and a hot room to. Some schools go because it is an outdoor holiday. If you need help to get there they would pick you up anywhere within 50 miles for a small cost, they have wheelchairs and all the aids you could think of.

Using a communication aid – Barry’s experience

My name is Barry Smith and I am 42 years old. I am from Scotland and I have cerebral palsy.

Down to this I use a power wheelchair and I speak with a Lightwriter too, but this don’t stop me making the most of my life.

Before I go on with this I am going tell you how I write this up, down to my hands is too jumpy to type. I use my toe to type this up, which is a skill too.

When I was about 23 years old I lived in Red Cross in Irvine. When I started there I was a part of the Gateway project which was for 16 to 26 year olds to show us new skills. One of the best things I got out of the project I was able go on a course call Part and Polly making with the Gateway. One of the things I got from doing the course I was told no matter what you are able to do anybody got a skill even just a happy face.

How my communication aid helps me

In 2006 I made my goal which was to get my own home what I am still in today. I don’t think I would be able to this without my Lightwriter.

Then two years later I did a talk about my life at Communication Matters Conference which I loved on my SL35. When I was down at the conference I saw the SL40 what was the new Lightwriter which was just coming out. What I remember I got to try this – what I loved about this you were able to text on it so I send the first text in my life to my Mum. She couldn’t believe it was from me, because she knew I couldn’t send texts down to my hands. My Mum phone the person who I was with, and he told it were from me on a new aid.

A few months later Ayrshire got me one. Once again I text my Mum and it felt like Christmas. In 2011 I got SL40+ – that mean I could phone people on it and they could call me on. Then I started doing little project in Scotland for the Right to Speak what I loved do for them. In 2012 I help with a green paper for government.

What I do not like being a communication aid user

When I was using the Connect Lightwriter as you know people could telephone with this. A few times I trying to make a business call. When the person answers and I said who I was and I told them I am using a communication aid to telephone them. The person who I were talking to told me they were sorry I needed to end this call, down to you aren’t using your own voice under the data act. When I put the telephone down I felt disabled and so mad. I feel my communication aid were stopping me in my life. Now I think people should know about this.

COVID 19 Pandemic: Life as a hospital doctor with CP

Kirsty Colquhoun is a consultant geriatrician and has CP. Her blog looks at life working in a COVID ward during the pandemic, the impact of working through the crisis, asking for expert support when needed, and why #StampOutThe Gap matters to her.

The first patient I successfully discharged home from my COVID ward was an older lady with Cerebral Palsy, we were all delighted when she got home, as we were for all our patients.

I work as a consultant geriatrician in Glasgow. This means that I look after older adults, particularly those who are frailer. COVID, for the group of patients I care for has been catastrophic. Age is the biggest risk factor for having a poor outcome if you contract COVID. I have spent the past 8 months working in older adult COVID wards. At one point, Older Peoples Services, Glasgow Royal Infirmary, where I work, was looking after 10% of Scotland’s COVID inpatients.

This year has been exhausting and brutal, physically and emotionally, but whatever I have felt has never been as bad as what my patients and their loved ones have gone through. There has been tragic stories like people losing both of their parents within days of each other, that is heart-breaking to witness, and I will never forget those patients and their families. Most of the patients who I look after, would not survive an intensive care admission, however, we still deliver the highest possible care we can give, tailoring it to the needs of that patient. The first patient I successfully discharged home from my COVID ward was an older lady with Cerebral Palsy, we were all delighted when she got home, as we were for all our patients.

However, it is not all doom and gloom in the NHS. While there can always be things you look back on and think you could have done differently, everyone working has pulled together like never before and tried their absolute best. This time last year we had no known treatment for COVID – now we have several. The scientists have worked extraordinarily hard. I was lucky enough to have the opportunity to enrol in the Oxford vaccine trial last June (and as I subsequently found out in January – lucky to have been in the COVID vaccine group). Just 6 months on that vaccine was being rolled out to give us a route out of this pandemic, which is amazing. We have tried to continue as much of our other non-COVID work as possible. For example in the work I do with older cancer patients we have been using virtual means. COVID has given us an opportunity to change the way we work and some of that may be for the better.

Sadly COVID has supercharged already pre-existing inequalities. You are more likely to die of COVID if you live in a deprived area. For some there is a view that if you are older, have a disability or a chronic health condition you are somehow less valuable. That is wrong and we must push back against that mind-set. I would fall into the category of having a disability, it seems to surprise some that someone with a disability could work (more than full time) as a consultant, particularly work in COVID wards. But why, disabled people are working in all areas of society, just like everyone else. I can assure you my life is no less valuable than the next persons, nor those of any disabled person. During the pandemic there has been a focus on wellbeing and kindness. Let us come out of this a fairer society and do our upmost to tackle these inequalities. As this pandemic has shown, no one knows what the next day holds or who could acquire a disability or chronic health problem.

When we are out the other side of this we will all need time to recover. For some it will be from the grief of losing loved ones, for others it will from financial hardships, for some it will be from the exhaustion and emotional toll of trying to balance working from home with home schooling and for many it will be the from the emotional strain of the past year! A surprise challenge for me has been the physical impact the pandemic has had on my cerebral palsy.

I normally carefully balance long working hours with a mix of marathon outdoor swimming (I hoped my swimmers lungs would stand me in good stead if I caught COVID on the wards), Pilates and weights. But all that disappeared. I was standing longer at work, sitting longer at home and doing less of the things that keep me on my feet. By last month I was in much more pain than usual and my function had deteriorated to a level I cannot recall as an adult. It is at that point that you realise there is really no services easily available for adults with Cerebral Palsy except if you go to the private sector or the charity sector. I have to admit I was scared, scared that this was my new normal, and that the independence and career I had worked so hard to achieve was changing.

I have privately had to see a musculoskeletal physio, who has been a great help. However, I have had my first session with Cerebral Palsy Scotland. I have had a full top to toe MOT by a Cerebral Palsy Specialist Physio. Everything from the way I sleep to the way I stand has been looked at. I know I will not only come out the other side of this as I was but have the opportunity to come out better. This is why the #StampOutTheGap campaign is so important. People with Cerebral Palsy need and deserve the same access to specialist services as anyone else would who have a health condition or disability.

I realise I am lucky, throughout the pandemic, I have been able to come into work and do a job that I love and no matter how bad things have felt it is always a privilege to do that job and I would never want to do anything else. I have had the support and kindness of the most amazing colleagues and that human contact is something so many people have not had this year.

I work in a Department with some exceptionally inspiring people, the first female president of the Royal College of Physicians and Surgeons, the current President of the British Geriatric Society. Excellence is expected, disability or not, and that is what I want and strive for. But just as important is the ethos of kindness, support and wellbeing. I am being given the time and support to get better and I wish I could bottle the inclusivity that I experience for others. The day I had to take some time off, my COVID ward became a non-COVID ward as cases drop. I am glad I made it through to that point. I look forward to returning in a couple of weeks, I am sure better and hopefully in brighter times.

Kirsty Colquhoun: Consultant Geriatrician in NHS Greater Glasgow and Clyde, Subdean Glasgow University Medical School for Glasgow Royal Infirmary, Fellow of the Royal College of Physicians and Surgeons – Physician Representative of the Inclusion Advisory Board, Secretary for the British Geriatric Society Oncogeriatric Specialist Interest Group, Trustee CP Scotland. Has Cerebral Palsy, Diplegia.