Wowee. There was such a buzz of energy, support, understanding and positivity at the first ever conference for young people with Multiple Sclerosis! I am on a natural high, completely overwhelmed by our community. MS Sessions 2017, thank you! There’s so much content I need to share with you dear reader, but to kick things off, have a squizz at this summary!
You are not powerless with this condition! There are so many things you can do to improve your disease course – there are many evidence-based interventions that you can choose to put in place whether or not you are taking disease modifying drugs. And there is a whole community of young people out there with the same experiences and in the same place in life, waiting to offer you support, compassion, understanding and positivity – come join us!
What is it?
2 days, 30 Sessions, 120 ppl, 2880 minutes, 1kcups coffee/tea/beer, neuro pathways, a bucket of emotions & 1 precious life [Emma Rogan, EMSP]
Attendees described the event with positive language across the board:
Melly’s top takeaways from Day 1
Love Yourself (Neuropsychologist Yolanda Higueres)
A quick dip into Yolanda’s talk. It’s about instinct vs. conscious thought. Train your consciousness:
- You can’t control everything. Don’t overdose on control.
- For those things that you can’t control, you can control how you react. You have control over your decisions, thoughts, beliefs and attitude. This is a tool. Acknowledge that tool, learn to use it and practice, and life will be easier, happier and calmer.
- know yourself.
- Focus on YOU.
- Do not let anyone force beliefs or expectations on you
- Practice gratitude to train your brain against its natural memory of negatives.
I will not let anyone walk through my mind with their dirty feet
Calling for Backup (Trishna Bharadia)
Not all support groups will suit you! Find one that matches your personality, stage of life and outlook. The right support around you can make all the difference. And even as an advocate, don’t be scared of asking for that support.
Fuel your Future (MS Campaigner Emma Rogan)
Totally authentic, no-holds-barred speech by Young Person’s EMSP network lead Emma.
I’m not going to say how happy I am to have MS, not going to say what a revelation it was, but i have learnt some things
Courage doesn’t always roar. Sometimes it’s quiet, it’s peaceful, it’s saying I’ll get up and try again tomorrow”
MS Energy – MSer Takeover
Us MSers were given a platform to share our experiences, thoughts, wisdom and support. Here are a couple of videos of these wise peeps – Ellen and Dean:
Be the Boss of your Brain (Professor of Neurology Eva Havdova)
The gut microbiome influences the immune system. Diet can impact disease course! As can exercising your body and your mind. Use lifestyle interventions to improve your brain health and you can improve the outcome of your MS! Download a copy of Brain Health: Time Matters in MS. Read it. Absorb it. Action it. (A shorter, simpler version of the report can be found here).
Brain Check. One. Two. (Neurologist Jeremy Hobart)
In the words of George Pepper (MSer & co-founder of shift.ms) during the conference:
The link between an informed and engaged patient base is vital for good treatment of MS. No longer do we wait and see, we take charge, act early and treat it hard.
In terms of your neurologist appointments: make a list of what you want to know, your questions and your points about your condition. Own it.
Take control of your health – engage in a brain-healthy lifestyle to protect your brain! This includes:
- physical activity
- weight control – obesity is associated with higher number of brain lesions
- not smoking
- watching how much you drink
- keeping your mind active – learn new things!
- taking any prescribed meds
One big scary point: smoking literally shrinks your brain. Smokers have decreased brain volume, increased relapse rates, increased disability progression and more cognitive problems than those who don’t smoke. And smoking decreases the effectiveness of disease modifying drugs (DMDs). There is help out there to stop smoking, so if you want to cease, you don’t have to do it on your own.
The Future is Bright (Neurologist Jeremy Hobart)
Dr Hobart covered a lot of ground. Here are a couple of takeaways:
1. Are you on the right drug? – query your neuro.
Guidelines written by a consortium of EU neurologists were released at the ECTRIMS conference this year (2017). They state that people with MS should be routinely monitored via MRI to check for disease activity. If any exists, your neuro should be recommending to you that you escalate your drug to a stronger one. Your neuro shoul
d be striving for what is termed NEDA in the profession- in other words, No Evidence of Disease Activity. Early, strong intervention is being shown to result in a much better disease course than the now outdated ‘wait and see’ approach
2. To DMD or to not DMD?
This decision is a very personal one and I believe you should be completely respected for your choice. I do however strive to make sure you are all savvy as to all the pluses and minuses so you can make an informed decision. So I must share this graph with you (apologies for the bad resolution – it’s a photo of one of Dr Hobart’s slides) – it shows the impact of taking a DMD vs no DMD on progression. There is not much difference at first, but over the years you can see that far more of the untreated patients progress compared to those taking one of the DMDs as the years go by.
Evening and Day 2
To keep our energies up and our networking powered to the max, we all dined in Municipal House where we had beer on tap. Nice touch. Sadly I cannot tolerate alcohol (shed a tear please!) but the photo op was too good to miss.
Then we slept.
And then we woke with our spirits in good stead ready for day 2! Watch this space for the next blog post covering my takeaways from Day 2 of MS Sessions 2017.
Want to know more?
When and Where
Prague, 25th-26th November 2017
Who got to go?
We wrote a letter of motivation as part of the recruitment process. Applicants were chosen based on their pro-active outlook and their wish to be involved in advocacy work; in spreading the word and supporting other young people with multiple sclerosis.
Who are EUMSP and Shift.ms?
The European MS Platform (EUMSP) is an organisation working to improve the lives of people with Multiple sclerosis (MS) across Europe, making use and leveraging 40 member societies in 35 European countries. Projects, advocacy work and campaigns to raise awareness are centred around the priorities and objectives set by people with MS, giving them a real voice. They have a Young Person’s Network, and it was these guys that made it happen.
Shift.ms is a social network set up in 2009 to support people with multiple sclerosis. Their portfolio is bang-on in terms of reflecting the needs of the younger community and is growing. Their offerings included:
- a safe forum called ‘speakeasy’
- MS Reporters’ videos in which shift.ms volunteers interview clinical and research experts
- short films created by award-winning directors
- an app ‘Thought Sort’ for learning and using CBT techniques
- a map where people can pin their location and find other MSers near them.
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