Progressive MS Day 2018

So, apparently today is the very first Progressive MS Day.  Thank you so much Wheelchair Kamikaze for letting me know.  We finally have a day to recognise that there is a portion of MSers who aren’t just living with the up and down onslaught that is relapsing remitting MS (which is awful in itself), but that there are others, like me, that have a more insidious form on the disease; one that just gets progressively worse.

According to the UK MS Society:

“In relapsing remitting MS (RRMS), people have distinct attacks of symptoms which then fade away either partially or completely. Around 85 per cent of people with MS are diagnosed with this type.”

Approximately 10-15%, however, are diagnosed with Primary Progressive MS (PPMS), where the disease is progressive from the start, sometimes (but not always) without relapses:

And then there is the third main type, which I have, Secondary Progressive MS (SPMS).  This is something that occurs usually after a period of relapsing-remitting and the MS Society describes this as:

“your disability gets steadily worse. You’re no longer likely to have relapses, when your symptoms get worse but then get better”

Of course, MS being MS means that not all MSers follow a distinct pathway; some may have PPMS or SPMS but still have relapses, for example.  But the majority don’t and medication for MSers with a progressive form of the illness is limited (though it is important to note that that is one approved in the US for PPMS and that drug trials for progressive MS forms are ongoing).  We do not qualify for HSCT (stem cell) treatment, which I often get asked about by friends, as it has not been shown to work with progressive types.

The lack of awareness in the general public is perhaps understandable; we hear about famous people ‘beating’ MS, raising money by being on reality TV shows or by running a marathon.  We also often hear about ‘breakthrough’ treatments that are a ‘game changer’ for those living with MS – however, these are usually for certain RRMS types.  So you’d be forgiven to think that it is all very positive.  However, we don’t ‘see’ disabled MSers in the media or hear about them, as it isn’t…well… exciting.  Instead, we simply need to get on and live our lives as best as we can, knowing that our life is likely to get worse and change and working our way through anything that may help our symptoms.  In my experience, in the UK, as soon as you are diagnosed as having SPMS and no longer take medication, the regular ‘chats’ with an MS nurse cease, and you’re lucky to see a Neurologist once a year, if that.  You have to be your own advocate and ask for what it is you need, whether that is input from a Physiotherapist or advice from an Occupational Therapist.  It is a ‘post code lottery’ as to whether you are offered treatments to help your symptoms; where I am in the UK, I have not been offered any help.  But what if you’re not sure what you need? I’m ‘lucky’, so to speak; I read up a lot and come from a medical background, so I know what may be shown to help.

It is hoped that, by having a regular Progressive MS Day, it will help to raise others’ awareness of this form of the disease.  There is a large enough proportion of us – I hope that this yearly awareness day will help to focus spending and money to the ‘other side’ of MS, where those living with it every day are hoping for a let up of progression, pain and symptoms before it is too late.

Wheelchair Kamikaze has really helped to raise awareness of Progressive MS Day by encouraging others’ to use a Facebook frame highlighting the fact that is is Progressive MS Day today:

In addition, he started his own #ProgressiveMSHaiku hashtag, encouraging others to share their own Progressive MS haikus on social media.  These are the ones that I have shared to his page; what do you think?

#ProgressiveMSHaiku 1:

What is it you want?
To feel normal again, please
Never-ending pain

#ProgressiveMSHaiku 2:

Progressive MS
Has taken everything
I hate my illness

#ProgressiveMSHaiku 3:

Progressive MS
Is a big pile of shit
Time for a cure now

Haiku’s have a 5 syllable – 7 syllable – 5 syllable formation, if you want to have a go at making your own.  Don’t forget to tag yours with #ProgressiveMSHaiku on Facebook, Twitter or Instagram.  And don’t forget to have a look at Wheelchair Kamikaze’s site for more fab haikus and to just read a great blog!

All the best for the coming week,