Hello all,
I am finally back to good health – my treatment was delayed by a month because of all that went on during August and September, so I got it last week. For those who have recently joined Sportin MS, I currently receive a medication called Ocrelizumab, biannually and it’s given intravenously at St George’s Hospital over a 5-7 hour sitting. Anyway, let’s get to the news..
I had my meeting at East Surrey Hospital with the Administrative powers-that-be, including my neurologist and all those part of the decision-making team. We discussed what I would like to happen/establish, so that MS sufferers are supported mentally and emotionally, especially at the start of their diagnosis. The aim is to provide a good first step, rather than one involving thoughts of giving up, not living life to the full or waiting around to become disabled; all common negative thoughts during early stages of an MS diagnosis.
We talked about having a space for meetings and interaction so we can feed off each other, help each other and share strategies for coping. With MS being a very personal and unique disease for each individual, those going through it are in a much better position to provide answers compared to those who have not experienced it. There is no ‘one size fits all’ set of answers, so to speak, and we have to learn to live with it, individually. At the forefront of benefits that our MS centre would have for the hospital, is to hugely lower the necessity for appointments with neurologists, whose time is better spent discussing specialist and expert material, rather than managing emotional and timely questions associated with non-medical topics. So, from now on, the MS nurse and I will be working together closely to get things started. I will share with you our plans moving forward – keep watching this incredibly exciting space.
Our next fundraiser is at the end of the month - Wreath Making on the 30th of November at Reigate Priory Cricket Club. I am also in the process of becoming part of a new venue that is willing to support Sportin MS by providing a social and entertainment space for fundraising – I’ll let you know about that soon!
Lots of love, Antoinette