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Photo of Rodin's The Thinker

What I'll be celebrating on World MS Day

Martin Baum

World MS Day takes place on 30 May every year. It’s an annual opportunity to share stories and raise awareness for everyone affected by MS. As an MSer for almost 40 years, I wanted to share a part of my day with other MSers and non MSers alike.

A new MS symptom appears

As my faith in maintaining a friendly relationship with MS continues to be less than affable, I have tried to live uncomplainingly with what I have. Now, however, an otherwise unknown symptom, to me at least, has thrown itself into the mix to test my already faltering walking ability. 

While I have already become well versed in coping with muscle fatigue, numbness in the feet, foot drop, loss of balance and coordination, I now find my legs are as flexible as a jointed model of the human body. Basically, they don’t move without a great deal of focus. Walking has become more of a chore. For no reason (is there ever with MS?) my legs will suddenly seize up like an unlubricated piece of machinery. 

The battle to kick-start my limbs

Walking is easy, even if I must use a walking stick for stability and yet, mid pace, I come to a regular grinding halt. Suddenly I am without an automatic forward motion to progress my journey. Of course, I try to propel myself ahead but to what end? Think pushing down on a foot lever to start a motorcycle that does not make it all the way. This is where my mental battle to kick-start my limbs takes over.

Lizzy, my wife/carer, is well versed with my faltering motor skills.  She gets annoyed how people in a park or a street turn their heads – rubbernecking if you will – at the scene of my immobility. “Move along. There’s nothing to see here”. But there is.

What I’ll be celebrating 

In a case of life imitating art, I am a pastiche of Rodin's The Thinker, deep in thought albeit with one subtle difference. Whereas the statue rests his chin on the back of his right hand, my hand rests on a stick as I contemplate how to activate my leg joints.

It doesn’t take long, ten seconds or so, and notwithstanding tiredness, I’m away. The fact is I am weary as the process of deep thought is exhausting because failure to launch - so to speak - is not an option, such is my determination to keep calm and carry on. 

Yet although this is a further erosion of my freedom of movement, the fact is I still have that option, even if it is reduced. 

That is what I shall be celebrating on World MS Day.

Martin is an MS blogger and influencer. You can read more of his blogs at martinbaum.co.uk.