Jacqueline head shot with garden behind her. She has shoulder length white hair and wears glasses.

I hope MS research will make the future less uncertain

Thursday 21 April 2022

When a group of us, all living with MS, were asked for our thoughts on a theme to shape ideas for MS Awareness Week, we all agreed. The word which best describes how we see the future is ‘uncertainty’.

It’s how I feel about my life right now, as I wobble on the edge of a precipice, not knowing whether I’ll slip forwards or shunt sidewards. One thing’s for sure - I can’t go backwards.

Hearing the words ‘multiple sclerosis’ for the first time

I have secondary progressive MS, having experienced my first symptoms (not knowingly) way back in 1991. 22 years of blissful ignorance followed until a visit to the optician led to a diagnosis of optic neuritis and I heard the words multiple sclerosis for the first time. A referral to a neurologist didn’t result in a definitive diagnosis straight away, but from this moment my life with MS really began.

I used to always rush about

I would love to go back to the days when I was always rushed off my feet. Getting the children up, dropping them off at school, making my way to work on foot. And usually overtaking the Number 19 bus as it crawled along Upper Street in the slow-moving traffic. Why take the bus if you could let your feet do the work?

Grabbing a coffee enroute so, when I arrived, I could sit down and get straight to the crux of complicated documents. Navigating through endless meetings, then zipping off to pick the children up, homework, play, bath, bed.

Weekends involved endless sporting activities and cycle rides in the park or escaping to the countryside for walks over hill and dale.

As the children grew older, I couldn’t keep up. The walks got shorter and slower, eventually stopping altogether. The work started to dry up as deadlines slipped and briefs became more baffling. The pressure piled on and a month’s unpaid leave turned into two, three …the rest is history.

In the grip of uncertainty

I sit in my wheelchair looking out as the buds start to peep through after the long winter months, the birds squabble at the feeder and a jet stream from an airplane slices across the sky. I look back and ask myself “How did I let this happen?”.

I teeter closer to the edge of the precipice.

Uncertainty stares me in the face and wraps itself around my body, squeezing so tight I can hardly breathe.

Fears for my future

I have spent the past eight years fighting my MS symptoms – the double vision, the loss of mobility, the incontinence, the facial pain. The drug treatments help with some of these symptoms but only to some extent. They do not heal the lasting damage that has already been done. For the last three years I was on a drug trial. Sadly, I was no longer able to continue with this trial.

Jacqueline hopes to join another trial - ChariotMS for people with advanced progressive MS

What future do I face? A gnawing, slowly worsening disability, stripped of independence? Reliant on other people not just to help me get around but also to deal with anything involving even the simplest of instructions. With bouts of pain added to the mix, the worst imaginable, when you least expect it..? Uncertainty tightens its squeeze.

MS research gives me hope

No! I shout. I won’t give in.

I will accept my own personal uncertainty and focus on opportunity by reminding myself of the tremendous advances being made in MS research today.

Future generations need not face the same fate.

Ten years ago, there were a small number of licensed disease modifying therapies (DMTs) to help slow down the onset of symptoms. Now there are over 15 and even three to help slow down active types of progressive MS.

The Octopus trial for progressive MS is reaching out its tentacles and will soon start to recruit its first participants.

I may have lost the use of my legs, but I’m blessed to retain use of my upper body, hands and arms. Long may that continue.

I have an appointment soon to find out if I am eligible to join the ChariotMS study, the first trial to specifically address this currently unmet need for people with advanced MS. In other words, anyone with an EDSS score of 6.5-8.5. And there’s also no upper age limit.

The prospect of this brighter future, if not for me personally but for anyone else with advanced progressive MS helps me overcome my own uncertainty. It gets me out of bed everyday… well by midday at least!

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