So, some news ...

So, some news, and unfortunately this isn’t the good kind.

In late 2019, I noticed that I had issues with cramping and then began to get muscle twitching, or fasciculations as I found out they should be called. For a while, I thought nothing of it. Covid happened. Days of working from home on a kitchen table and less exercise in late 2020 early 2021 were clearly having an impact. However, things didn’t improve.

I started to have issues with what I thought was a bad back and realized I was starting to lose energy and power in my legs. Falling on holiday didn’t help. Eventually Siobhain got me an appointment to see a Neurologist in December 2021. I can remember the initial review with the junior doctor – I already had an idea of what the symptoms were leading to – but her review and then then asking if I could wait for the consultant to come made me realise that “Dr Google” unfortunately might be right.

After another month or two of tests and a long hospital stay – made even better by Covid! Oh and the absolutely delightful lumbar puncture and EMG tests – I finally sat down with my consultant at Wexham Park for the news. On 23 February 2022, I was told that I had Motor Neurone Disease. The statement that it was atypical and slow-progressing put me a little bit at ease – temporarily at least – but Amyotrophic Lateral Sclerosis #ALS even when slow progressing is not fun.

In February, my walking and gait was awkward. I got a walking stick – thinking that would be okay for a good while – a seat for the toilet and the shower – because did you know showers are exhausting! But alas, the walking didn’t get much easier. I adapted.

March came – I lost the ability to drive a manual car. I couldn’t move my right leg between the accelerator and brake – to much hilarity as I drove along down Wood Lane in Iver. Eventually, I bought a second-hand automatic car and had it fitted with hand controls for the pedals, and adapted.

In April, I got a wheelchair. A fine manual steed that I thought I could propel myself around in. Except, its bloody hard. David Weir really is a beast!! However, it got us all around Alton Towers for a holiday treat in May – Jacob & Caoimhe taking turns to push around the hills - and it helped me try to keep going in a normal life. I could manage to get the chair in and out of the car – just about – so had a bit of independence again. Adaption complete??

In July, the manual chair was upgraded. I bought myself a shiny new steed in the form of a MobilityPlus electric wheelchair. It was tested in August – flying around IceSheffield for a hockey camp and around Cornwall on holiday – its brilliant, except it doesn’t like the beach and nearly got swept away by the tide as I attempted to tell ALS to go f*** itself by paddling on Bude beach. Next time check the tide is going out Matthew!!

September came, but muscles continue to waste away. ?I took the hard decision that I needed to stop working. Assurant has been fantastic place for me to work – so good I went back! – and have been tremendously supportive over the last few months – but I am now weaker in both my legs and my arms and energy levels are low daily. One day I hope to get back and extend the 15 years I’ve spent with such an excellent company and tremendous group of indivduals. But I have to keep trying to adapt.

But adapt how?

This has set me on a bit of soul searching of what to do. The kids’ ice hockey certainly fills a lot of time, but I need to do something – however small – to try to beat this and #endALS.

So why now? Why put this lengthy post onto social media? Why add to your feed this message? (and thanks to those of you who might still be reading this garbage!)

Well, there seems to be small amounts of hope for ALS patients with signs that new treatments are working and might give to #ALS patients precious time to wait for a cure or an improvement.

You might have seen some of these articles in the press:

·????????NurOwn is a new drug that is helping patients with a certain genetic mutation of MND (SOD1) and has had remarkable results in patients

https://www.bbc.co.uk/news/health-62851186

·????????AMX0035 is a new drug which has now been given approval in Canada and the US as treatment for ALS. The FDA confirmed last week that there was sufficient benefit from the treatment that it should be given to patients

https://www.everydayhealth.com/als/fda-approves-new-treatment-relyvrio-for-people-with-als/

There have been other promising results from repurposed drugs used for other treatments so positive news is out there. Drugs can be adapted too!

There’s the effective of the #IceBucketChallenge if you did it 8 years ago!

Furthermore, the government in November 2021 promised funding for MND research of ￡50m. However, as with much Boris’ government said, I’m guessing you needed to take a pinch of salt with it:

https://www.skysports.com/rugby-league/news/12204/12654896/rob-burrow-government-has-blood-on-its-hands-over-50m-mnd-research-delay

It seems hopefully just delayed. But time is precious if your muscles are wasting away.

But still, why now?

Well, selfishly, I’d like access to some of these treatments. Unfortunately, so far I haven’t been able to be admitted to any trials – my symptoms started over 3 years ago. The likelihood is that these treatments might not be more widely available for many more months or years. The European Medicines Agency has agreed to consider the Amylyx Pharmaceuticals proposal for approval of AMX0035 in early 2023 – although what that might mean for the UK authorization given all that Brexit bullshit is hard to tell – there is no clarity on how the UK may authorize new treatments outside of the EMA.

Apparently, it was possible to fast track a vaccine for Covid outside of the EU, so why not use the results provided to fast track a treatment for ALS in the UK? What is stopping the use of the proposed funding to push ahead with looking at any number of the proposed treatments to identify a better outcome for ALS patients?

Fast-tracking treatments isn’t a new thing either. The treatments for HIV came through active fast-tracking of treatments by the FDA in the US – repurposing readily available medicines to use in trials and ultimately treat HIV.

AMX0035 was given approval in Canada for use earlier in the summer and last Friday the FDA in the US approved its use. The drug isn’t a cure but it appears to extend life expectancy by an average of 6 months. Having this approved in the UK and available for patients would be fantastic for MND patients in this country. Hopefully approval for treatment can come sooner or at least trials for the treatment expanded to improve access for patients and understand the impacts.

Ultimately though – just lots of questions.

I have written to my MP Joy Morrissey with several questions regarding funding promised for MND research and how the approval process for treatments will work – maybe there really is a Brexit benefit after all!!! Lol

In the meantime, I’d appreciate anything you might be able to do.

·????????A share of any MND or ALS posts I might make

·????????Any ideas that you might have that I could do to spread the message further - #IceBucketChallenge was eight years ago! – or a way I could attempt to raise money for MND research (no suggestions of Kevin Sinfield’s 7 in 7 please! – although you can donate to it here https://donate.giveasyoulive.com/fundraising/kevin-sinfield-ultra-7-in-7-challenge)

·????????Let me know if you just want to catch up for a coffee

Or anything that you might be able to do to help with this challenge.

Thanks to those of you who have already supported me in many ways – it has meant more to me than you’ll ever know. I have had great support from family, friends, work and ice hockey #SloughJets.

?

Selfishly I want to #endALS for me. I want more time with Siobhain, Caoimhe, Jacob and Wicket. More time with friends and family. I want to be able to get back physically and back to work.

But I also want this horror to end for countless other patients with this condition.

Here’s to hoping that will be possible soon.

Thanks for reading.

Matt