I know that the 12 months just ended, when the pandemic has continued throughout, has been very challenging for many of the community of people living with and affected by MS that MS Ireland serves.
The innocence and compassion of childhood are qualities that I often wish we carried through to adulthood. If they had, I believe they would make us more empathetic and understanding human beings.
MS Ireland and Novartis launch first podcast series to support people living with multiple sclerosis in Ireland.
- MS Explored – The Podcast, created by MS Ireland in partnership with Novartis Ireland, provides valuable information on living with and managing MS
- The podcast series has been developed in response to the urgent need for easily accessible information resources for the MS community
- Topics explored include navigating the patient journey following diagnosis, the impact living with MS can have on family life, and tips and useful advice for resources to support
- Hosted by MS Ireland’s Aoife Kirwan, the series features top healthcare experts including as well as people with lived experience of MS
An anonymous survey is being co-ordinated by Prof Ronan Killeen, Consultant Radiologist, St Vincent's University Hospital and Dr Brendan Kelly, PhD candidate UCD and Radiology SpR and designed with input from MS Ireland.
MS Ireland launches dedicated resource ‘Understanding MS@Work’ for people living with MS and their employers to become more informed on the daily impact of MS. 9 out of 10 people with MS say the pandemic has helped steer conversations with their employers about the benefits of working from home long-term.
- New research among MS Ireland members reveals impact of COVID-19 on employment, and how working life with MS can be better understood by employers
- 80% of people with MS say the way they work has changed as a result of the pandemic
- Although 85% say their employer knows they are living with MS, more than one-fifth (21%) of respondents cited ‘lack of understanding / empathy’ as the issue that most impacts their working life
The VHI Women's Mini Marathon is taking place on Sunday September 19th. Like last year, this year's event will be a virtual event where you can complete 10km anywhere you like. The Mini Marathon is one of the most popular and important fundraisers for MS Ireland and over the year's 100's of inspirational ladies have clocked up 1000's of kilometers raising vital funds for the 9,000 people in Ireland living with MS. You can register your interest in taking part today.
One such person who has taken part in the Mini Marathon, a whopping 13 times is Deirdre Flynn. Deirdre was diagnosed with MS in 2019 and below she tells us about her diagnosis experience and why she is taking part in this year's Mini Marathon.
To say my children are my life is an understatement; they mean the world to me and when I first received my MS diagnosis my thoughts turned to them immediately. They were 6 and 4 and a half at the time and they had boundless energy. I worried that I wasn’t going to be able to keep up with them and that maybe I wouldn’t be able to look after them the way I wanted to. My mind immediately began to come up with worst case scenarios and I remember crying myself to sleep that night thinking about all they were going to miss out on because of me. My guilt was immense. In my shock and upset at the diagnosis I had catastrophised everything and it took me some time to realise that our world had not ended, it had simply changed.
‘The Societal Cost of Multiple Sclerosis in Ireland’ was initially conducted in 2015. As much has changed in recent years, we are looking to gain an insight into the current ‘Societal Cost of MS in Ireland’ to identify and compare any differences in your lives. Please complete the survey at the following link it should take 20 minutes.
It’s not uncommon to think of Multiple Sclerosis as only a physical condition. That’s all one can see (unless looking at an MRI)- symptoms from the damage it causes to the nerves resulting in problems walking, balance, muscle weakness or vision loss.
This week we thought we’d take a different look at Life with MS. The MS and Me bloggers are in touch with each other a lot. We share updates on how our MS is faring and ask questions about treatments and symptoms. It is fair to say however, that a significant percentage of our WhatsApp messages involve pictures and stories about the furrier members of our families.
Anyone who has a pet will understand the joy they bring, but a quick poll of our bloggers suggests that having a dog or cat is beneficial to our well-being and how we live well with MS. Our pets are our companions, confidantes and always agree with us! This week Ciara, Rosie and Niamh share their pet stories.