For the first time Voice4MND will be taking place in June.
21st June is MND Global Awareness Day. On this day we acknowledge the impact that MND has on people around the world. This date is selected for the special reason that it marks a solstice seen by many as a turning point in the year, the start of a new season of hope.
MND can impact significantly on a person’s speech. More than 80% of people living with MND will experience some form of speech difficulty during their illness – some will lose their voice completely.
#Voice4MND is our annual sponsored silence campaign where we raise awareness and aim to give people with MND a voice by standing with them. All we ask is that you stay silent for a time period of your choice so you can briefly experience how it feels to not be able to speak.
Imagine one hour, imagine one day, imagine one week without your voice. This is day to day life for many people with Motor Neurone Disease.
All you need to do is pick a day and duration for your silence, register and share your online page!
Take on our challenge this June because sometimes silence speaks volumes.
We also ask people with MND to share their personal stories to help raise awareness of how it affects them and also how it can affect their speech. This year Caleb Sheehan kindly agreed to share his story in a very positive light in the hope of raising awareness of MND and how it affects him. Here is Caleb’s story….
“My name is Caleb Sheehan. I’m 51 years of age. I’m married with two grown-up children. I’m a retired teacher and I live in Cork.
My MND journey began in late spring 2021 when I noticed a tremor in my right shoulder. The muscle seemed to be rippling under the skin. It wasn’t until the tremors also began in my left shoulder that I sought medical advice. After 6 months of tests here in Cork I was referred to Professor Hardiman in Beaumont. My first visit proved inconclusive, and a second visit was scheduled for January 2022.
On the 19th 2022 of January Professor Hardiman carried out a set of strength tests on me. I failed one of the tests. I had lost some strength in my right hand. Professor Hardiman reluctantly informed me that I was in the early stages of MND. The news came as a complete shock to me and my wife who had accompanied me to the appointment. We were devastated. I returned to Beaumont the next day and attended my first MND clinic and drove back to Cork that evening where we broke the news to our families. We did not tell our kids at that point, and we decided to wait until the end of the school/ college year. The next day I went back to work and quickly realised that I needed some time to process what was happening to me physically, and emotionally to us as a family.
In the weeks and months that followed I felt a deep sense of grief for the life I had lost and the simple things that made up that life. The plans we had made for retirement and the future. More than that, as the disease progressed, I began to miss the everyday routine things that I can no longer do. I missed kicking a ball around with my son or training my daughter’s football team, walking the dog or cooking a meal, the simple everyday things we all take for granted. I grieved for my old life until one day it struck me that I wasn’t living and that wasn’t fair to my family and friends. I knew that I had to get back to living so that is what I have being trying to do. I now have a very simple philosophy that can be summed up in four words. Accept, Adapt, Survive and most importantly Hope.
It is now 17 months since my diagnosis. I have lost most of the strength in my arms. I have difficulty walking. My speech is significantly impaired, and my swallowing has become more problematic, but I’m alive! I have hope. I have a wonderful wife and great kids. My extended family are unbelievably supportive. My friends and colleagues have been brilliant at keeping my spirits up, and I know now that I’m loved. The IMNDA has also been a constant support and a source of hope.
At this time, I am part of a clinical trial that aims to slow the progression of the disease. I’m very grateful to be part of the trial and for the support of Professor Hardiman and her team of researchers at RCSI in Beaumont. Being part of the trials keeps hope alive. I am 100% confident that given the time science will provide the answers and a cure for MND. In the meantime, my responsibility is to be as well as I can and wait for the day when science finally triumphs over this disease.”
Get Involved
If you would like to get involved in the Sponsored Silence #Voice4MND campaign this June and stay silent for 30 minutes, 60 minutes or even a day to support people living with MND, please register here
Thanks for your support.
