Founder’s Blog #20

Hello all,

It has been a truly eventful time for Sportin MS. After lots of preparation and planning, we had an extremely successful fundraising event on the 9th October, The Masked Ball. With donations from Channel 4, Bletchingley Golf Club, the Reverie Restaurant, Grape Marketplace, Charlie Lee, Chris Davies and Noreen Cowley, the auction was a huge success. Alongside this we had donations for several raffle prizes, a silent auction and merchandise that was sold. Overall, we managed to make just under £10,000 profit. That figure would not have been possible without the truly charitable approach of all involved at Old Reigatian Rugby Club, especially chairman, David Forsyth. Of course, Sportin MS also has a truly dedicated group of volunteers led by Lin Packham – thanks to you all. Photos to follow soon.

With regards to MS, there is lots to say. My progression is slow but definite. The muscles inside my body are struggling to function on a normal level and I’ve had to stop playing competitive squash. It is one thing to have knowledge about the future, to know that the facts are unchangeable and the end result is inevitable. But it is a whole different ball game when you suddenly have to accept, adjust, compromise and sacrifice – no amount of knowledge prepares you for that. I have times when my body feels too heavy for my legs and I have like a buckling sensation – there is medication for that but the side effects include ‘a bad temper’ – not sure how I or my family would manage that. I am also losing my balance a little, not much but that has triggered an MRI appointment for next month. I have, however, as a result of all the above had a sudden realisation that now is the time – now is the time to go and do as much as possible, not saying no to the things that interest me. This is the attitude all MS sufferers should have, otherwise, there is a chance that resentment and bitterness consume you when you look back and see – you were always waiting.

My daughter Tiasha, recently diagnosed at 20, has decided on her treatment from a batch of options; Tecfidera, in the form of a daily tablet. She started with a small dosage and when increased, the side-effects took hold – body rash, fever and the sensation of her skin being on fire. Her neurologist has suggested she continue the medication, with the smaller dosage, and after about 6 weeks, the side-effects should settle down, which is what Tiasha has decided to do.

I will keep you up-to-date with all our experiences and invite others to feel free to contact me on the email address included on our website. Sportin MS is determined to provide emotional and mental support for MS sufferers. We welcome anyone who would like to share their MS with us.

Lots of love,
Antoinette

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