MS Sessions 2017 Prague - Saturday
MS Sessions 2017 Prague
Saturday 25th November 2017
The ‘official’ start of the weekend with breakfast, then headed into the main room for the beginning. I was with Eoghan, whom I was sharing a room with for the event duration, and we sat at the front. Handy for me as at the time my ears were both blocked (sexy, I know) and hearing was an issue…
So Emma Rogan (I think) opened up, welcoming us all with a brief talk about EMSP - European Multiple Sclerosis Platform - and Shift.ms. The 2 amazing charities who made this happen.
9:40 Yolanda Higueras:
Yolanda was interacting with the room asking the questions to us, making us think… To the slides and my scribbles from them:
Somethings depend on me but others don’t
-my thoughts and beliefs
-I feel my reactions
-my decisions
-my attitude
Find and use your freedom
-don’t overdose your control
-this is your freedom
-Find in the ‘here and now’
-Don’t allow anything to surprise you
-knowing is not being surprised
-avoid living in the unknown: get all the information (the good and the bad)
-without surprise there is less anger
Focus on you
-know yourself
-be proud of you
-always something good in any situation
Ditch comparison, enjoy who you are
More than what I’ve said above; very good talk - entitled Love Yourself. Very positively reflective presentation on what we (some!) do or do not, especially living with the you know what, from angles maybe hadn’t considered! I mean that thinking about you and the good parts of you, and the bad; celebrate the good and try to get shot of the bad that may be weighing you down.
10:20 Trishna Bharadia
Watching a video first about a blog about getting MS
Calling for backup the
After diagnosis, I didn’t know what was where. Now though! Especially at events like this.
Support network/s.
1- make some offers what looking for
2- does support Network offer what ‘want’
3- Safe
4- Variety is the spice of life; MSS and others
Trishna did BBC Strictly 2015 – with the right support anything IS possible.
Emma Rogan EMSP
Fuel your future
“making good out of bad”
-figure old limitations
inspirational talker, about MS, connecting, MS sessions
Do we only look at ourselves through an MS filter – DO I?
[Denial – post traumatic diagnoses PTSD? Something I hadn’t considered; but. Think about it.]
- The of who or what are you loving for?
MS Takeover – 5 talk positively
Ø Stephanie Zihms – celebrating 1 year diagnosis
Ø Kimberley Blans – life is short. More Connections. Don’t try to think of something about yourself
Ø Ellen Marshall – Grab life; do things that been putting off - grab! (eg Glastonbury). Opportunities; take them.
Ø Dean Reilly – ‘Dean versus MS’ social media platform. Has done 7 marathons.
Ø Vasilike Garoupoulou – exercise success
Under the microscope
Emma Rogan / Yolanda / Trishna Q&A
- Under the microscope
Eva Haazdova - Professor of Neurology
- brain health and boss
- What is MS
**Can influence brain by lifestyle; what is brain health?
* watching TV is bad for the brain
* whereas playing games is good
*How to further promote brain health?
^* keep as active as you can*^ (aerobic is good. bugger)
- keep weight under control
too much animal fat is bad
- Keep mind active
cognitive rehabilitation - improve brain
Avoid smoking
Watch how much you drink (bugger!)
Continue taking over prescribed drugs
Managed comorbidities
What can you do - question mark (TAKE RESPONSIBILITY)
Physical activity
Weight control
Not smoking
Drinking
Keep the mind active
Prescribed drugs
Challenge yourself
Learn something new
Loneliness is not a good thing for the brain
George Pepper - Maintain your brain
“brain health. a guide for people with MS”
get engaged with MS and care
* followed by a film on brain health Shift.Ms film
Jeremy Hobart - Neurologist
When go see a doctor - prepare for it
“the 7 habits of highly effective people” book
- establish your Ms knowledge
“Brain health. Time matters in MS” - brochure/report, George
- Importance of data (Group and registered - do it)
Graham Halsey Employment specialist
Aim to help to return to work
Har fucking har [That’s my work whinge]
generic blarb. No real MS link
Jeremy Hobart
New drugs
evidence from big data
at the start level
earlier better
higher potency better than lower
as per (similar) to the MSS research magazine
EBV (EpStein-Barr Virus) - vaccine could lower risk by 90% but not guaranteed
- glandular fever
MS is a genetically related disease, he said don't believe otherwise
1. Stem cells full stop so far not proven successful. Theory sound; practice not
2. orchestrate existing cells and replace
Emma Rogan & Elizabeth
About EMSP, community building
(In a small room - I went for a pint (only me!) - and thought sod-it! would have preferred other lecture about reporting)
Trying to reach out to younger people
So an absolutely brilliant first day ‘proper’! Full of quality information presented in a such an understanding and positive way it was outstanding. Tiring yes, but being with ‘like-minded’ – very ‘pun-ful’ (sorry!) – people and each presentation designed to NOT be too long and with breaks in-between each, only seemed to let the day flow perfectly. That was the day.
It was organised as part of the weekend to have an evening meal together at Prague’s Municipol House was amazing; many happy MSers together happily meeting, and reflecting on the day with the option to do an organised walk afterwards. I didn’t do that!
I and others returned to the hotel for more chat and a shandy; maybe!
Words cannot describe how good the day was.
Then there was Sunday!
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