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Happy New Year to all the MS & Me readers and your families!

As we move into 2023 in earnest, we’re excited to announce a spin-off from the MS & Me blog, an MS & Me webinar series entitled “The Unspeakable Bits”. The first one is set to air, live, from 20:00 on Thursday, 26th January (Join host Trevis L Gleason and a panel of MS professionals to talk about a Healthy Body: Healthy Brain on Thursday, 26th at 8:00pm* Register here).

MS Ireland is conducting a repeat of a 2016 comprehensive survey of the needs of people with MS. The results of the survey will help us to plan our services and will inform our ongoing advocacy work. It will also help to inform us of where there are gaps currently in service provision and the information gathered will offer us an evidence based platform to campaign on your behalf. It is therefore very important that we get as many responses as possible – this is a vital opportunity for people with MS to have their voices heard and make their needs known. The survey takes approximately 15-30 minutes to complete. All responses will be anonymous and the questionnaire does not ask for any personal information. We would like to assure you that the information gathered will only be used for the purposes stated above.

To complete the survey click here.

When you receive your multiple sclerosis diagnosis, it always comes at a cost. 

Not only does your idea of your future self get thumped backwards, by the time you hear those three dreaded words “You have MS”, you probably already found out that life with a neurodegenerative illness is not a single, cheap financial event. 

You might spend plenty of time on sick leave, or you might need to change the way you commute to and from your job just to show up at all. Perhaps GP visits, medicines, and accessibility measures at home to improve being able to move around at home eat away at your savings. Other things like holidays, Christmas and birthday presents or something as simple as clothes, a meal in a restaurant or a cinema visit to see the latest blockbuster, eventually begin to  elicit a dreaded, "How am I going to pay for this?"

We have known each other for a while now. I was diagnosed 14 years ago, but you were lurking in the shadows long before. You take up so much space in my head! What on earth did I think about before you came along? Why won’t you leave me alone? Why won’t you leave the other 2.8 million people you affect alone?

I swear sometimes in life I am the unluckiest person going. My mother has said so often, “Katie, if it wasn’t for bad luck, you would have no luck at all!”

There are times when I look at my life and see a series of unfortunate events. I would write a book about it but there is already a book with that title! One time the doctor even said she had never seen the side effects of a medications happen to anyone before and guess who it happened to?? Yes, me! The doctor was completely shocked when my blood work came back showing the results. I just told the doctor “If it has to happen to someone it will be me.”

Dr Susan Coote discusses MS Ireland’s plan for sustainable national physiotherapy services on Midlands 103 Health and Fitness Show

Dr Susan Coote, MS Ireland’s Exercise and Physiotherapy Co-Ordinator launched MS Ireland’s 3,000 Push Ups in March Challenge on Clare FM’s Morning Focus Show this week. To highlight this fundraiser Morning focus’ host Alan Morrissey will be taking up this great challenge in March. Speaking of the upcoming challenge Alan Morrissey, the host of Clare’s most listened to radio show said “I'm delighted to be taking part in the 3,000 Push Ups in March Challenge. Not only will it help support the vital services provided by MS Ireland, but from a health viewpoint it will also really benefit those taking part. I am really hoping that by the end of March I will have shed some of the extra pounds which made themselves at home on my body over Christmas. I would encourage as many people as possible to take part in the 3,000 Push Ups in March Challenge."  Listen to the Clare FM interview here 

 

We have a new webinar series called the Unspeakable Bits and our March edition is called ‘Money Matters” which will take place on Thursday, 30th March at 8pm for one hour online.  Our host Trevis L Gleason and a panel of MS professionals will talk about the planning for the 3 stages of life with MS. Financial planning are topics most people think of in their advancing years.  People with MS often must think of them earlier in life.   

The panel be answering questions from our MS community sent to us in advance, as well as from our live audience. We will be covering topics on finance like planning, investing, pensions, early retirement, long-term care, health, and life insurance/assurances. We will also be covering topics on law like wills, conservatorships, trusts and advanced directives.  We will also discuss topics like social protection and entitlements.  

Please either email your questions to aoifek@ms-society.ie. We welcome everyone to our live webinars so if you would like to attend, please register for free here 

Take on 3,000 Push Up Challenge in March to Support MS Ireland 

• MS Ireland is asking people across Ireland to challenge themselves by doing our Push Up Challenge of completing 3,000 pushups in March.    

• Raise much needed funds to enhance the vital services of MS Ireland 

• Sign up now and get your Push Up Challenge Pack here

• Visit our Facebook Group here 

• If you do not wish to set up a Facebook fundraiser, you can set one up here instead

MS Ireland is calling on people with Multiple Sclerosis in Ireland to help us plan for their service needs over the coming years by participating in our My MS My Needs Survey.  

 

• MS Ireland is asking people with MS in Ireland to take our new My MS My Needs Survey 

• Help us discover the most important MS services required for Ireland in 2023 

• Our survey can be accessed here: https://lnkd.in/eGQ2DUVd 

• The survey takes approximately 15-30 minutes to complete.