My name is Robert Joyce and this is my blog ‘A 30 Minute Life’. Thank you for checking it out. I hope there will be some content that you will find of benefit to you. I would like to give you some background on who I am.
I am 50 years old (born in 1969) and live in Connemara, Ireland. Connemara is a beautiful part of the world, with an amazing landscape. It does have one drawback and that is the rain. There is one drawback, it is a very wet part of Europe, with grey skies, and lots of puddles. At this stage of my life, I don’t really notice it that much, as I have the clothes that suit this environment. Raincoats, and shoes that are waterproof are essential.
When I was 23 I was diagnosed with Multiple Sclerosis. It is the relapsing/remitting version of the illness, and it was a big obstacle in my work at the time. I had chronic fatigue, walking felt like I had one leg in a river, and my sensation had gone in my legs. It was a scary time of my life, and I was working in a new job, in London. After several months I realised that I could not continue with the pace of life that the work required. At this point I returned home, to recover, and to find some alternative way of living. My parents were very supportive and helped me start a new life.
Since then I have done many things. I have two beautiful children, and I am very proud of how much they have achieved so far in their lives. In my past, I have owned several businesses, operated as a business consultant, and was the head of a sporting organisation in Ireland. These businesses have brought me around the world and I have done business in Ireland, USA, UK, Norway, Spain, Turkey and Switzerland. All these experiences have made me who I am today.
Three years ago, July 2014, I was in a minor car crash. My car was stopped, and someone hit me from behind. When the accident happened, I heard a loud crack from my neck. I shook it off and went to talk with the driver of the car that crashed into me. We exchanged details, and I drove home, thinking nothing of what happened. However, I then started to experience different symptoms. A headache, pain in my arms, lightheadedness, to name a few of the things I felt. Little did I know that five years later I would still have that same headache, that my MS, which had been in remission for nearly a decade, would return and that my life would have to be lived in 30-minute blocks. What a big change of life.
This blog will be tracking my journey to recovery, and I will also use it to share the strategies that I am using, or experimenting with, to bring my life into a phase that will give me an acceptable life. My life will have pain, I am not sure that I will be able to completely escape from that, and the symptoms of my MS. This does not mean that I have to have a bad life. For me, finding a solution to this problem will be my goal. Maybe you can join me on this journey?
Some of my achievements
- A strategic neurological research agenda for Europe: Towards clinically relevant and patient-centred neurological research priorities https://doi.org/10.1111/ene.16171
- Twelve months into a feasibility trial: reflections on three experiences of public and patient involvement in research https://hrbopenresearch.org/articles/4-11
- Evaluating the feasibility and preliminary efficacy of a Cognitive Occupation-Based programme for people with Multiple Sclerosis (COB-MS): protocol for a feasibility cluster-randomised controlled trial https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-020-4179-5
- An examination of the effects of a patient-designed-and-informed participant information sheet in comparison with a standard, researcher-designed information sheet on recruitment, retention and understanding: Protocol for a study-within-a-trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7140771.1/
- Remote administration of BICAMS measures and the Trail-Making Test to assess cognitive impairment in multiple sclerosis https://www.tandfonline.com/doi/full/10.1080/09602011.2022.2052324
- Assessment and Management of Cognitive and Psychosocial Difficulties for People with Multiple Sclerosis in Ireland: A National Survey of Clinical Practice https://www.hindawi.com/journals/ijclp/2022/3232076/
- Comparing the effects of a patient-designed-and-informed participant information leaflet in comparison with a standard, researcher-designed information leaflet on recruitment, retention and understanding: A study-within-a-trial https://www.sciencedirect.com/science/article/pii/S2451865422000539?via%3Dihub
- Exploring the impact of ineligibility on individuals expressing interest in a trial aimed at improving daily functioning regarding perceptions of self, research and likelihood of future participation https://bmcmedresmethodol.biomedcentral.com/articles/10.1186/s12874-021-01464-x
- A qualitative investigation of reasoning behind decisions to decline participation in a research intervention: A study-within-a-trial https://journals.sagepub.com/doi/10.1177/13591053211037736
In the media
‘It robs you of a normal life’: Researchers seeking volunteers for programme seeking to help those with MS https://www.irishexaminer.com/news/arid-30978743.html