Newly Diagnosed MS Presentation 2023

In June 2023 I was asked by the Multiple Sclerosis Society if I could assist with an event for some people recently diagnosed with #MS.

I was asked to give an approximate 10 minute presentation as someone with MS to talk about my experience of being diagnosed and life since diagnosis – have to say, it needed to be realistic but upbeat too!

I happily accepted! The event was at the Grand Hotel, Gosforth, Newcastle, 15th July. 

See the running order below, followed by the speech I wrote and gave:

 

The running order was:

 

10.15 for 10.30 start – welcome

10.45                  Gill, MS specialist nurse, RVI on the role of the MS nurse

11.15                  Dr Martin Duddy, explaining MS, research and treatments

12.15                  comfort break

12.20 /12.15        Personal perspective of being diagnosed – Roger

12.45         Over to you – chance for people on their tables to share their experiences and learn from                           each other

1pm           lunch – chance to look at info tables

1.45pm                Benefits of keeping moving and/or hints and tips on fatigue management. Physio - Walkergate Hospital

2.15pm                comfort break

2.20pm                The MS Society – the support it can provide nationally and regionally

3.15pm                summary and end

 

 

Hello everyone, I’m Roger Cook, honoured to’ve been asked to do this talk – thank you Sheila – as I am now a 45 year old, medically retired engineer and not in any form an #MS guru! But I might tell you an MS joke. Back to today.

 

Well, I was diagnosed with MS in 2001 after a canny bout of double vision that I ignored for too long, that you do as a young person!

 

Did I let that stop everything? No. Was I in somewhat of a different place then mentally? Oh yes. But. I plodded on with my then job at Alcan power station, dealing with the ash, until a mate’s mam came across a job she thought would be of interest to me, and it was.

 

So, after applying for the job with BAE Systems with success, I left here for the job in Farnborough Spring 2002. Did I tell my employers about MS pre-Farnborough of thereafter? No. I’ve jumped too far ahead today already! Backtrack Roj.

 

The double vision. Not an uncommon symptom Dr Duddy talked about. I didn’t like! Was it was my only symptom then to be fair, not by a long shot. Again, as a younger male should I have gone to see my GP for what were actually pretty bad symptoms I can now say? Absolutely. Hindsight. Something you’ll probably be all too aware of.

 

I was then in pain, muscles weren’t working as they should’ve been bla bla bla. Hindsight. So don’t ignore what may seem like nothings. Likelihood they are that, but. That was circa 2000-2002.

 

My story seems to me to have begun – not that I knew – in my 3^rd year university exams. A bloody stressful time. Loads of studying in a room with Pete and Sam, sitting on hard chairs. I blamed that for waist down numbness, bodily functions not working as per – weeing and pooing – yet it’s more that a fair guess it was a relapse. (Roj mention Ann)

 

Back on track again! It’s getting like a 15” record. Sorry. Farnborough.

 

I was there for about 2 years lets say. During that time, there were a few occasions I experienced minor eye issues, none of which thankfully stopped me. I then got a job in Malvern – heading closer to home! I shouldn’t have taken it. Stress in abundance that MS and I did not like one little bit.

 

During that 18 months – before I left by choice – more symptoms showed up. Walking became more challenging, my face changed, writing and typing became hard, communicating got challenging… I told my employer 6ish weeks before I left knowing I was going to put my notice in anyway.

 

Lesson there? I shouldn’t have kept MS a secret. Denial. For formally 6 years.

 

A new chapter was born after I returned home – to the north east – with a franchise that failed, and I opened up to close friends and family about MS.

 

While still coming to terms with a this new chapter, a massive change, I got involved with the MS Society locally. Yes, I had been researching about it, then for years subtly on the web and such, but taking that initial step was a bit daunting. I understand how it can feel like.

 

These days, what is out there for us is way better than it was 20 years ago. I urge you to look for some information, whether via nurses, docs, friends, the web, local MS groups. Springboards to more can come from them.

 

Back on track again!!! 2007 lets say. I had to look for work, both as a grafter, and under the kosh a bit from the loving jobcentre. So much detail there I could bore you with, but I shan’t! However.

 

That’s 16 years since then, 17 since I returned. No full time work has endured, not for lack of trying, even too hard at times. Aye, a couple of good friends  got me some part time work with their respective employers years ago, falling in line with an employment law – permissible work – yet here’s the thing. Looking back on said employment I struggled massively. Cognitive dysfunction. Meh. I now know.

 

So how do I survive? Financially in a word, benefits. Look for what you’re due as this isn’t going anywhere soon I don’t think. Never say never.

 

Other time? Well it has been said to me by a few people not to let MS rule your world. I agree. But. Acceptance. A massive massive massive word. One that cannot be ignored enough. Honestly, the biggest A word of a few. Coming soon!

 

I was in total agreeance to not let MS rule and I still do. However! MS lives with me as mostly an unwelcome guest, yet it’s in MY head.

 

I volunteer. I happily volunteer and solely with the MS Society now – South Northumberland Group as my choice group due to where I’m from – yet here I am talking to Newcastle (that I love by the way, and was involved with Newcastle & Gateshead Group for several years)! Far less stress than certain employment types.

 

I’ve helped Doc Duddy with medical students and Northumbria university separately as an expert patient! That’s me and my MS experience by the way.

 

I know it is not work work, yet the rewards can be brilliant. Personally! Great for ones’ mental health.

 

Again, I can speak about depression and anxiety with experience. No lecture. Dr Duddy does that!

 

What else keeps me sane? Exercise is a biggie. I thoroughly believe it is a brilliant tool in the MS journey to do best you can, some type of exercise.

 

I am no gym bunny type, nor have I even been to a gym for a few years now, yet, for example MSRRF in Morpeth as a charity is absolutely brilliant as a resource. As are available classes with certain MSS Groups – look them up for more info – and that thing called YouTube can also a great resource too.

 

I blog a bit – rogercook.co.uk – about me, passions and such, and also a lot of shock horror, MS stuff! It’s quite sweary and chatty apparently!

 

Another A. so far we have AWARENESS. Another I came across via a counsellor (I recommend btw), ALLOWANCE. Days when you may not feel like doing anything, due to fatigue for example, ALLOW yourself the day doing nothing! Body knows. Don’t do too much. Aye, we mightn’t like that, but sometimes there is nothing at all wrong having in effect a day-off.

 

Social media. Love it or hate it, it’s here to stay. With that, the amount of MS opportunities – information, connections is huge! MS society have a great page, as do many other supporting charities.

 

I have made loads of connections, not just online, via these available pages, groups, sites etc. No obligations, yet, the opportunities are there to become involved in a something, chat with likeminded peeps, find activities of interest e t c, are boundless.

 

For example, as I currently receive Tysabri as my treatment and have done now for 13 years, it itself – the infusion process – has effectively made friends for me. A Tysabri group on Facebook has regulars.

 

My MS Group history, Newcastle, North Tyneside, Northumberland, has widened friends ‘network’ too. The socials activities can be great! NO pressure.

 

So, as I said earlier, you just have to do a little bit of research or make contact with people/organisations you can trust, and it kind of, ish, falls into place!

 

In a few points in a kind of conclusion.

 

Denial. Acceptance.

Information. Trusted.

Exercise.

Allowance.

It’s free to ask.

With or without MS; you are unique.

 

Phew. Sick of me yet!?

 

Anyway, I thank you for listening to my patter I hope you can get at least a something from it.

 

Do you have any questions?

 

And, I enjoyed doing said speech, knowing it was well received and useful.

I will hopefully do another, as someone who has lived with MS for over half my life. Useful experience put to good use!