Robert’s story “Not being able to communicate or make myself understood is so very difficult” Robert from East Lothian suffered a TIA (which is sometimes known as a mini stroke) before having a bigger, more serious stroke the very next day. A treatment called a thrombectomy saved his life, but his stroke left him with severe communication difficulties including aphasia and verbal dyspraxia. Mini stroke turned serious It was a weekend in March and I had spent a lovely day in Edinburgh meeting friends and visiting galleries. At home that evening I began to experience a headache. The pain got worse until by 9pm I felt that I had no control over my body. I couldn’t move my arm or cry out. I went to hospital, had tests which came back negative and it was presumed I had suffered a TIA (Transient Ischaemic Stroke often referred to as mini stroke as the effects only last up to 24 hours). I was sent home and told to call the hospital on Monday to arrange a scan. I didn’t get the chance. At 10.30am on Sunday morning I suffered and survived a serious ischaemic stroke. All I can remember of that morning is the ambulance crew trying to manoeuvre me down the narrow stairs of the cottage with great difficulty. I couldn’t move or speak. A scan revealed a large clot had caused my stroke. Normally you would have a clot busting drug to dissolve the clot and restore blood flow to the brain. However I was told this treatment wasn’t going to be effective for me. My family and friends who were with me were told to prepare for the worst. Things didn’t look good at all. Life-saving treatment My only option was a thrombectomy. Thankfully, I was able to have the thrombectomy that saved my life. For me there was no other alternative. I am shocked to hear that I was one in only 13 people who received a thrombectomy in Scotland in 2017 when 600 people that year could have been eligible for the same treatment that I had. Recovery has been slow and I have been left with severe communication difficulties. I spent 10 weeks in hospital and a further 5 months in rehabilitation. Looking back my scariest moment was waiting to find out if I was going to be able to receive a life-saving thrombectomy and the stark possibility of not surviving if not. Learning a new way to communicate I now live with acute aphasia (I know what I want to say but have difficulty at times finding the words) and severe verbal dyspraxia (when the words are there but I have difficulty motor planning to create the appropriate sounds). All of this makes communicating really difficult. Often it’s easier for me to draw or write a reply. Stroke fatigue has also impacted hugely on my life and those around me have had to appreciate this and allow me time to rest. Not being able to communicate or make myself understood is so very difficult. This combined with limited mobility and not being able to drive are hard things to have to deal with and accept. Speech and language therapy has been invaluable and allowed me to explore my strengths in communication. It has enabled me to use other communication resources to make myself heard. I use drawing, writing, sign and expression and I’m constantly looking for new ways to get my point across. Things like new technology, augmentative and alternative communication apps, FaceTime, WhatsApp, Facebook and Twitter are all useful aids to me. One thing I do want other people to know about me and my condition is that my speech and language impairment does not mean I have other intellectual impairments – help me spread the word! Just give me the chance and allow me to come back to a point later if I’m having difficulty. Support in unexpected places Help has come from the most unexpected places. Neighbours and people in my local community have offered amazing support. My family, friend and carer Sharon, neighbour Maureen and Chest Heart & Stroke Scotland volunteer Fiona have made the biggest difference to my life. Chest Heart & Stroke Scotland provided vital help at a time I needed it most. They have made a huge impact on my post-stroke life. Volunteer Fiona has been a great source of information, friendship and support. Being around people with shared experiences, who know and understand what you are going through has been a real benefit. Aphasia and Dyspraxia are very isolating conditions. Chest Heart & Stroke Scotland has helped to keep me connected in both group settings and with one-to-one speech and language support, providing me with a dedicated stroke nurse who visits monthly. With their support I have been find out about and buy the communication apps which allow me to express myself. I would tell others who are in a similar situation to me to take one day at a time. Be creative and try to have fun with communication. You will discover strengths you didn’t know you had. Don’t give up the things that make you happy if you can. Since my stroke everything has changed but I survived and I have learnt to appreciate and savour what I have. Campaigning for thrombectomy When I heard that thrombectomy was to be withdrawn in Scotland as a method of treating those who have had an ischemic stroke, I was incredibly sad. I thought of all the people and families who would not benefit in the way that I had and whose lives would be wrecked. I knew I had to try and do something. Stroke has made communication difficult for me, but Chest Heart & Stroke Scotland helped me to find my voice and tell my story, and the Bring Back Thrombectomy campaign was launched. I helped raise awareness of the campaign at the Scottish Parliament. I met with the Health Minister and was invited to participate in cross-party meetings. I found myself doing things I’d never done before, like delivering talks and making after-dinner speeches. Personally it was a very positive experience, and I met some interesting people. Getting involved in campaigning was challenging, but it also gave me an excellent opportunity to give something back in a small way for the excellent care and treatment I received.