How the MS Help service is supporting me to exercise

In my 40s I was very fit. I ran a marathon for the first time (and then another one!). But things started to change. I’d go for a run and my leg would spasm. The right-hand side of my body would seize up and my arm would get kind of stuck.

I'd stand by the side of the road for a bit and stretch it all out. Then I'd be back to normal and I’d continue with my run, thinking: what the hell just happened?

My MS diagnosis

I went to see a physiotherapist, who said it sounded like something neurological. That's where my diagnosis journey started. I saw a specialist privately through my company’s health insurance. They did an MRI scan and lumbar puncture, and said it was probably MS. I was referred back to the NHS, and was initially told they’d ‘watch and wait’. But I didn’t want things to get worse, so I asked my GP for a second referral. That eventually led to my diagnosis.

It felt like a dark time

I was anxious and depressed, having issues with mobility and stability, and with cognition. I was suffering from fatigue. Our family also had other things to deal with, including my wife’s health – she has stage 4 cancer. Everything felt very raw.

I wanted to deal with my mental health first. After speaking to my GP, I had counselling through work and then therapy through Essex Council’s VitaMinds service. I was referred by my GP but you can also self refer.  That’s helped me on this journey.

I’d given up on exercise

I also wanted to find ways to manage and reduce my symptoms, and improve my cardio health and therefore my overall health. But I was in a dark place and was giving up on exercise.

When I discovered the MS Society had a Move More service, available through MS Help, I got in touch. I was very quickly connected with the physical activity specialist, Sarah. She asked me about my background, my current situation, and what I was looking to achieve through the Move More service. After that conversation I signed up for six telephone sessions with her.

The motivation to keep exercising

Over the course of those sessions, I returned to a place where I could do more. I found different and more relevant ways of stretching or balancing. And I explored different exercise regimes.

It helped that the support from Sarah was structured, and with someone external. I find that sometimes if family or friends suggest I try something, I can go into ‘grumpy Simon mode…’ And ask to be left alone. But talking to someone who understood the challenges of MS was really, really helpful.

Bringing me back to a positive place

The Move More service supported me to rebuild myself, physically, mentally and emotionally. It brought me back to a positivity I hadn’t had for a long time, even before my MS diagnosis.

Since then, I've developed my exercise and fitness routine. I go to the gym and I have a personal trainer (PT) session once a week. I do two or three Pilates sessions weekly. And I go to my local MS group, mostly for the exercising. We have an exercise circle and two PTs.

I’ve gained confidence in asking more questions of my NHS MS nurses, my hospital, my neurologist. And finding out what help I need.

Figuring out what works for me

The service helped me start figuring out what’s good for me and helps me. It gave me direction, it helped me focus and it helped me know when I was winning. It energised me in body and mind.

There's so much information out there when you become an MSer. You hear so many different things. Everyone in the world has their own suggestions. And when you’re looking into exercise, there’s a lot you can pay for like fitness courses and equipment. But you’re not sure if it’ll help or not.

Accurate information from MS Help is vital, and for a big attraction of the service is that it's free.

Giving back 

Now I find doing things for other people helps give me purpose. 

I’ve got involved with the MS Society’s Research Network, taking part in different patient and public involvement groups. It helps others, and it helps me too.  

On Saturday mornings I’m a marshal at my local Parkrun. I don’t run myself anymore but as a marshal you get to know people. There’s a real community spirit. 

We raised around £6,000. It was a bittersweet experience, because I couldn't do what I used to. But it was nice to feel I’d achieved something to recognise what the MS Society has done for me.

Knowing support is there is uplifting

Since I first used the Move More service I’ve been building these blocks of things that support me. My head is in a better place. Now I say to myself: come on, Simon, keep doing it, keep going.

My MS has changed over the last few years. I’m less stable. So although I’ve built this weekly plan of activity, I need to re-engage. I’ve got back in touch with the Move More service because I need help to think about how to adapt. The heat wave is really affecting what I can do, and that's something I've been chatting to Sarah about too.

Why the MS Help services are so vital

Move More is just one of the services that MS Help can connect people with. It’s the support I personally needed the most. But everyone’s MS is different and that’s what makes MS Help so brilliant.

MS Help can provide support around benefits advice, staying active, social care and so much more. I feel lucky with my local MS support. But I’m in a small percentage of people who get the level of support I've needed. That, to me, only enhances the importance and need for the MS Society and services like MS Help.

I can't explain what my MS problems are in 10 minutes, so it’s amazing to have a service that stays in touch with you.

Simon shared his story to help raise awareness and funds for MS Help. Will you give today to help fund it alongside our other work?

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