My Mind Won't Work If My Spine Don't Jerk

‘My mind won’t work if my spine don’t jerk…’

What? Eh? Oh, it’s on the tip of my tongue! Here is your £1.40 change from the £10 that was given for your food shop…WHAT ON EARTH IS THIS COMPLEX MATHEMATICAL PROBLEM THAT YOU ARE THROWING AT ME?! My brain sees £10 divided by the 5 items that I have purchased, round anything over 80p up to the nearest pound, then divide that by the total, and throw a multicoloured unicorn in there as well as the minds mascot for good measure. Cash or card, it doesn’t matter, I will always take the busy city route along the nerve highways in working this out. MIND.BLOWN. I need a rest.

If you could see my page now, it is full of random words and sentences dotted about in random places for me piece it all together later. I have always taken this approach when writing anything; texts, emails, blogs, general life admin. I also used to write BACKWARDS (from right to left) when I was a kid, I have always had my own approach to expressing myself, especially with the written the word... it’s all I’ve known. Whilst I have now nailed the life skill of writing from left to right, I haven’t quite mastered the art of writing a coherent sentence without the cog fog obstacle I’m sure we have all come across at one point or another during our MS journey. So receiving a reply to anything from someone at what I consider lightning speed is something that I can’t comprehend... well until I was diagnosed with MS that is. Oh, the irony of it all…

Whilst there are a plethora of symptoms that can arise with cognitive issues, here are the main ones that I experience;

Word finding (Dysphasia) – Planning – Concentration - Information processing –  Confusion –  Problem solving –  Attention span

I have those tip of the tongue, or rather tip of the fingertip moments ALOT. That *Hannah’s typing…* banner or those three dots… that we are all too familiar with on messenger services linger there for a few minutes longer when you are communicating with me. Maybe even an hour, or a day…but you will get a response eventually and that’s the important thing.

When it comes to the physical symptoms with MS; walking, balance, dropped foot, bladder issues, random bouts of vertigo, numbness, coordination, fatigue…to name but a few, these, for the best part, can be managed through various mobility aids, pelvic exercises, catheters, rest, exercise, even medication, but when it comes to managing your unmanageable mind? This can be quite the midfield (pun fully intended). I have however discovered over the years that like with many other MS symptoms that are experienced; stress on the body (incl. the mind) has a huge impact on my cognition. 

I am a strong believer in keeping my brain as active and healthy where I can to help with my cognitive issues, especially. Like with many other MS symptoms this is all down to the individual, and as research has suggested this is a symptom that can affect more than 50%. 

I am constantly yelling things at Alexa to add things to shopping and to do lists etc, setting reminders, making notes on my phone, to even taking pictures. This helps me tremendously with the memory and thinking aspect side of things. What makes perfect sense to me one day, or even an hour before can very rapidly turn into a completely different story. I need to stress that whilst I battle with cognitive symptoms in one way or the other on a daily basis, this isn’t a reflection on one’s intelligence, information and skills that had been acquired before this was an issue, it just takes a while longer to reach the desired outcome…if at all at times. I say this because I know when to walk away from a task etc that is proving too difficult for me and my mind. This isn’t me ‘giving up’, ‘throwing in the towel’, or whichever way you wish to describe it, it is me simply taking back control of myself and health…accepting my limitations.

I have brain training and puzzle games on my Nintendo Switch, I read a lot, I am involved with various charities, I work as and when health permits, and before lockdown (the first time round) I would be socially active keeping myself up to date and involved with various events, meeting up with friends etc. I find that being socially active engaging in conversations and being present is what truly keeps this brain ticking. Yes things do get tough, I do get extremely frustrated at times, but with all of the activities and strategies that I have adopted, adapted, and use on a daily basis they all fall into my cognitive reserve. A vital rerouting bank in my mind.

I recently wrote a blog on Artificial Intelligence (AI) being used with predicting MS progression, that can be found here, which, as research develops can hopefully be applied to the cognitive impairment with MS progression…it all comes down to WHERE in the brain the inflammation and lesions lie, recognising it and there being an early intervention on the predicted route MS is likely to take in an individual. As previously mentioned, my cognitive issues have always been a lingering problem for me, gradually getting worse over the years, but how wonderful will it be if the predicted cognitive decline can be addressed, and somewhat prevented on the scale it hits many people before it becomes too troublesome?  

My acquired strategies over the last 8 years is how I approach my brains resilience in managing my cognition levels due to MS damage. Whilst there are many potholes, closed routes, temporary closures, and a lot of the time uneven surfaces to navigate my way across….there is ALWAYS an alternative route, an invisible effort that I am putting in to get the same result as others. It may take longer, at times be a slightly different destination to the one I originally set out for, but the wealth of experience that I have gained along the way to reach said destination in my mind is priceless, and will forever be in there…somewhere.