In September hundreds of people with MS left their homes and traveled to Athlone to attend our national conference. The day prior most of the speakers who presented to us had spent the day with various healthcare providers, educating them on various aspects of the diseases and living with it. For those who could not attend, we had a live stream going out across the interweb to the whole world.
Having the caliber of researchers in one room for people living with the diagnosis of MS, their family, friends, and co-workers was beyond brilliant. To mingle around others who know exactly what we’re going through and not have to explain – Important.
A good number of the MS & Me team were in attendance and wanted you to know what they learned and why they’ll be attending the event next year. Perhaps these reasons might spark you to mark your diary for 2019 as well.
1. Use it or Loose it! As much as we hate to admit it, exercise is important, keeping the brain active (reading, writing, crosswords, games and discussions), and even standing rather than sitting are important in maintaining a healthy life with MS. Physical exercise can even improve the plasticity of the brain, slowing cognitive issues.
2. Take your Vitamin D! Think of it as a mandatory supplement for people with MS, for their families, and particularly for their children.
3. Advocate for yourself. Multiple sclerosis is not a one-size-fits-all illness. People living with MS have to realize that we know our bodies and our disease better than anyone else does. Don’t be afraid to question the Neurologist’s advice and recommendations, and to ask for more information.
4. The importance of Brain Health really is not promoted enough (or at all) in Ireland. Services we have here are dire relative to most of the rest of Europe. An initial neurology appointment should happen within 4 weeks. It takes many of us 8 weeks to simply get a prescription.
5. Words like “Palliative Care” and “Advanced Health Directive (AHC)” may seem like frightening words, but they are not. Palliative care is not necessarily end of life related. It’s about managing a condition with available tools. AHD are a way of letting our wishes be known to those we love. ADH should be discussed and updated regularly.
6. Early and aggressive intervention and treatment means better long term prognosis. Time lost is brain lost.
7. People who are engaged with MS research and MS resources live measurably better lives with their disease. Get engaged. Stay engaged.
8. Socialising can be as beneficial to brain health as crosswords. Granny always said that a cuppa with a friend was good for you
9. The genetics of MS are fascinating, and the island of Ireland has a wealth of knowledge to share with the rest of the world about the genetics of the disease.
10. Smoking is bad for MS. Like really bad. If you don’t smoke; don’t start. If you smoke; quit. If you’ve quit but relapsed into the habit; quit again… Now!
11. Some of the great minds of our age are focused on MS. Researchers from around the world came to update us on where their work has progressed and what they expect in the next years. Really remarkable stuff going on out there in the world of MS research.
12. Connecting with others with MS is important and really fun! The evening before the conference gave us a chance to get to know each other, compare stories, and have a laugh. Interestingly we all seemed to see the funny side of our crazy capers with MS and can understand one another about the difficulties. Oh, and it's a cognitive workout!
We hope to see more of you at next year’s conference. It’s not about the big bad wolf of MS… It’s about the lot of us in the brick house, working together to find our best life. Multiple sclerosis or not.
Watch presentations from the day:
Professor Gavin Giovanonni: MS Overview and Quality of Life. Watch here >>
Dr. Jens Bansi: The Importance of Neurorehabilitation in MS. Watch here >>
Dr. Sabina Brennan: Healthy Brain. Watch here >>
Dr. Kate O’Brien, Genomics Ireland: Identifying specific patterns in genes in people with MS so as to develop new diagnosis tools, treatments, and better our understanding of disease progression. Watch here >>