News

When you receive an MS diagnosis, acceptance doesn’t happen overnight. For me, there was never a ‘light bulb moment’ nor a precise day or time… in fact, my acceptance has probably been put off for a lot longer than is healthy.

It is really hard to move from denial to acceptance, to admitting to yourself that you may need assistance (whatever form it is); because MS is a progressive and incredibly unpredictable disease, there can be extended periods of time when a person does not need to use a mobility aid (or ever for some people with MS).

One of our fundraising highlights of 2021 was our 3,000 Crunches in March Challenge where we had over 1,000 brilliant fundraisers join our Facebook Group. One of those fundraisers was Kelly Byatt. Kelly is living with Relapsing Remitting MS and completed the challenge raising vital funds for a cause close to her heart, MS Ireland. We are delighted to say that this year the Challenge is back and Kelly is once again taking part. You can read about Kelly's story below and you can join the 2022 group here: Join The Group

In the previous post Joan explained the process of getting the VAT & VRT back when you have a Primary Medical Certificate. I have been a disabled driver for a long time, back when I had Relapsing Remitting MS. Now my illness has progressed and I have had to consider the impact of worsening disability when purchasing a new car.

The Epstein-Barr virus (EBV) is one of the most common human viruses and is found all over the world. Most people get infected with EBV at some point in their lives. Even though it causes an illness called infectious mononucleosis/glandular fever, which impacts millions of adolescents globally, no vaccine is currently available (1).

This blog is a guide for anybody who has been granted the Primary Medical Certificate by the HSE and wants to avail of the Tax Relief Scheme. It details the steps I took to get a Revenue Exemption and buy an adapted vehicle.

I got my Primary Medical Certificate in November 2021. I’m not saying this is the only way, but it worked for me. It took me about two months to complete the process. First of all, take a few copies of your certificate and keep them somewhere safe. It’s a very valuable document! Next, you should read this article about tax relief for drivers with disabilities on the Citizen’s Information site.

The Neurological Alliance of Ireland is the umbrella organisation for neurology patient organisations in Ireland. MS Ireland as members of this organisation have been supporting the Patients Deserve Better Campaign which aims to highlight the lack of neurology nurses across the country. Ireland requires further 100 neurology nurses in order to address unacceptable waiting periods, delays with diagnosis and treatment. Neurology nurses, including MS nurses play a crucial role in the care of people living with neurological conditions.

Background to project

MS Ireland provides a range of services for people living with multiple sclerosis (MS) and their families. One important aspect of these services is the support provided by a series of regional community workers who are available to meet with and/or offer advice to people with MS (PwMS) on a one-to-one basis. This support is often termed “casework”.

Because the nature of supports offered by community workers varies so greatly, it can be a challenge to evaluate the effectiveness of casework. In other words, it can be difficult to establish if and how community workers effectively meet the needs of PwMS.

In our project, conduced by a research team in the Department of Psychology at Maynooth University and supported by a grant from the Irish Research Council, we wished to explore this issue. Specifically, we wanted to explore ways in which casework at MS Ireland may be better evaluated.

Last week, a paper titled ‘Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis’ by researchers in Harvard University investigating the role of the Epstein-Barr Virus (EBV) in MS was published. The findings of this study provide a significant step forward in understanding MS and creates opportunities for new research into how this virus can sometimes lead to auto-Immune diseases, such as MS.

The NAI is launching a national campaign, ‘Patients Deserve Better’, calling for investment in nurse specialists across neurology services.

We are currently recruiting for Move Smart MS Move Smart MS offers specialised, online, exercise programmes for people with MS. We have learned that by moving our physiotherapy and exercise programmes online, the barriers of transport, travel time and accessibility are removed.
Our feedback has been overwhelmingly positive. By recruiting nationally, rather than locally, we can bring together groups of people at a similar stage of their MS journey and deliver symptom specific programmes. Move Smart MS is funded by the Innovate Together Fund from Rethink Ireland. You can learn more about the programme and how to register here.

Pamela O'Donnell took part in the programme last year and describes her experience below.