In these uncertain times, people with MS need us more than ever. And we need your support to ensure we can continue to provide the vital services people like Carla rely on. MS doesn't stop, and neither will we.
Helping me through diagnosis
The MS Trust has been in my life in the decade since my MS diagnosis. Ten years ago, it was a very different time for people with MS. Post diagnosis, I was very much left to my own devices to find information. It would be another year or so until I was allocated an MS specialist nurse. Consequently, I really struggled to find information that was relevant to my own needs, but also which was credible. Just as now, there was a lot of fake news, and much less organisation, with information scattered everywhere.
Then I came across the MS Trust website, which was a revelation. At the time, I was dealing with my diagnosis from afar: my MS was stable and, in all honesty, I wasn’t at the point where I wanted to meet other people with MS. Visiting the website, allowed me to dip in and out of the information I needed, when I was ready. It took a while to come to terms with my diagnosis, so I needed factual information to ground me. Everything the MS Trust produced was so well researched, well communicated and credible. So when, years later, my young son came to me wanting to know about the mechanics of MS, it felt very natural to download their Kids’ Guide to MS booklet.
Perhaps it’s an odd thing to say, but my son really enjoyed the way it was put together, and I think this was because it was so age appropriate.
Everything the MS Trust produced was so well researched, well communicated and credible.
Supporting me with treatment
A few years ago, I was in discussion with my neurologist about treatment options, but I found the process very overwhelming. My MS specialist nurse suggested I look at the MS Decisions website, which provides very quick, reliable information in a way in which I can individualise it. For example, I looked at how a DMD might fit into my lifestyle and its effectiveness in relation to my MS activity. This was very useful when in subsequent conversations with my nurse. When I came to use the website again three years later, I found that it was even easier to use than I had remembered.
The MS Trust’s recent COVID19-related podcasts, with advice and tips from healthcare and MSers, have been very useful in putting the situation into perspective, providing tips through this, and for making us feel that we are all in this together.
Supporting me with my MS
I discovered The MS Trust Facebook group two years ago, which I have found an invaluable form of support, since becoming more active in the MS community. The group is very supportive of its members and information is exchanged, but generously moderated.
Alongside its fantastic COVID-19 pages, the MS Trust’s recent COVID19-related podcasts, with advice and tips from healthcare and MSers, have been very useful in putting the situation into perspective, providing tips through this, and for making us feel that we are all in this together.
The MS Trust believe that people with MS should be partners in our care with specialist healthcare professionals. They work tirelessly funding and placing desperately-needed MS specialist nurses, especially into areas they have identified as gaps in care for the over 103,000 MSers currently living without this support. I feel I have achieved much over the last decade and, in supporting me through my rollercoaster MS journey, I feel that my MS specialist nurses have had a huge impact on my achievements.
I am in constant admiration of this organisation and its remit, which is why I regularly fundraise and volunteer for them and I hope to continue to do so for many years to come.
