My MND / ALS journey has started

For a few weeks I have wanted to write something down, but have been hesitant to do so. Writing about the journey I have started makes it more real, indeed something tangible; eventually the band-aid has to be ripped off and I'm in a place where talking about it is getting easier each day.

On March 7th 2023 I met with a specialist neurologist and he was confident enough to give me a clinical diagnosis of a Motor Neurone Disease, most likely being the condition more widely known as ALS. People in the UK will know the acronym MND from the tireless work that Doddle Weir, Rob Burrow and Ed Slater amongst many others have recently done to raise awareness of this rare disease. We might also think of other people such as Stephen Hawking that lived with ALS for his entire adult life and this is what my North American friends may be more familiar with.

Do the 'experts' ever get this diagnosis wrong? I'm afraid the answer to that question is 'it's highly unlikely'.

Over the past 7 months I have been experiencing strange neurological symptoms and after ruling out many other conditions, the neurologist broke this news to me. There is no definitive test, biomarker or symptom that stands alone to provide a quick diagnosis and frustratingly the process is to rule everything else out first, before you can get diagnosed as having MND / ALS.

Yes, it’s a huge shock for me and my family. Mentally the time since August been draining and at times torturous; ultimately in January I already knew that this was the likely outcome when I was referred to a specialist.

'What does this means for your future?' you might ask..

It's taken support and reflection, but I realise that life doesn’t end now and it’s now a process of adjusting over time to this life-limiting condition. Telling my loved ones was a gut-wrenching experience and we had hoped the worst case would never unfold, but together we are ready to face up to what’s ahead.

I have to take comfort in the fact that I haven't done anything wrong and I've treated my body very well (some of you might think too well!) over my almost 40 years of life. This condition is non-discriminatory and very little is currently known about it, even in scientific circles.

My current state of mind

As for my mental health, I’m doing well and trying to see positive in every day things. The difficult moments are reducing in number and by choosing to be positive about the situation, I see the opportunity to show courage and strength to support those around me. I appreciate this is a choice and the simple one would be to stay at home and repeat the question 'why me'?

It's not always easy, but I'd rather be someone remembered as taking the fight to this situation, rather than throwing in the towel. There are many other warriors around the world (and countless others that have already fought their battle) and though I never wanted to be on this team, I now feel obliged to fight with ferocity.

I CAN still do everything I could yesterday and I have been encouraged to stay active. I’m young and I'm told progression has thus far been slow, with weakness confined mainly to my left leg. I can’t run (at 40 this is no great loss), but I can walk, play golf (my last 3 scores have been 68, 74, 71), swim, and make a point to climb the stairs in twos! I’m determined not to be part of the ‘average life expectancy’ group that have had this condition (3 years after diagnosis) and take this as an inspiration to keep the fight up and the fire inside burning. I’ve always been told to never ever give up in any situation and I have promised my family I never will.

Over time and in the future, life will not always be easy; I can’t focus on what the end may or may not look like. Believe me, it's not productive or healthy to think too far ahead. I have to make the most of every day I have and enjoy the journey ahead. There are many things to look forward to and I appreciate the overwhelming support from my loved ones and closest friends over the past few months.

The reality is that this is life, it happens and I can only resolve to do my best to help others in the future have a different conversation from when I was told I have MND / ALS. A cure might be beyond my time, but for others it must not be. It’s happening to me and I can’t change that. Raising awareness is a small part of what I can do and I will think of ways that I can do that.

Later this year, I will likely join a clinical trial which is repurposing existing drugs used for other conditions; I am waiting on a few final pieces of information from my diagnosis before I commit myself to this. You can read about the MND SMART trial here which is running in Scotland if you are interested.

I know this all might come as shocking news to you; please don’t feel that you have to say sorry to me or think 'oh poor Scott'.?

I appreciate your empathy and thoughtfulness and the fact that you may be reading this with a heavy heart means that we’ve shared good moments together somewhere in our lives. Everyone will have their own picture of what MND / ALS looks like, but the fact is that no two people experience the same path of progression. Therefore, whilst I still can, believe me, I will still do. I'm starting to think of my 'bucket list' and if I can call on your help to tick something off then do expect an email!

Good times are still ahead

As proof of the good times still to come, I managed to tick off my #1 priority on my bucket list. Robyn (many of you won't have met her as yet..) and I were excited to get engaged in February, so our focus has now turned to house hunting and planning a wedding! This was always our intent before my health became an issue and I simply couldn’t imagine facing the road ahead with anyone else fighting corner. Since we met in 2021, my life and happiness have been transformed for the better. I'll let you ask Robyn whether it's the same for her!

As you may imagine, I am still processing everything, so if you don't hear from me for a moment, please don’t think I’m feeling down or trying to block out the rest of the world. Accepting my situation has put me into a great mindset of living for each moment and enjoying each day as it comes. My diary is filling up with great things to look forward to.

I will write something here and there to help you understand what my life is like, but also to prove that there is still much to live and to fight for. Don't worry, it won't be a catalogue of the various ailments, but rather proof of pushing through any limits I might have. Right now though, I’m living with it (not suffering) and all I need is for you to treat me just the same as you normally would.

Take good care and give your special ones that extra hug today; waking up and living each day with them is something to cherish deeply.

Lots of love,

Scott