Skip to main content

MS

Living with MS Edinburgh


*This is my bit blog and therefore my thoughts/options* on Living with MS Edinburgh being an information day for anyone affected by MS that I happily attended, and will be more about the day than the travel to and from it! This event was held in the Sheraton Hotel which was beautifully laid out, in a spacious floor in the hotel with many orange-clad volunteers supporting the 150 attendees.

Life wi the Broons cartoon picture. MS Scotland link
MS Scotland

The area in the hotel had been planned well, wasn’t too big or small offering fine accessibility and had plenty of MS stuff throughout!


So what was the order of the day, what happened?

It began with a welcome from the chair, Mary Douglas from the MS Society Scotland (9:45 – 10:00) welcoming us and touching on what was ahead.

Breaking Boundaries in MS Research, was started straight after (~10:00) by Becky Driscoll. A fairly generic(ish) overview (IMO!) of MS initially, presented very well. The content was detailed and shows/showed how much I/we (those of us who keep up-to-date with related news as it occurs; in the public realm of course!) know through our own/my MS studies. Presentation went like a bit this:
·        Basic MS description at start
·        Further information
·        The MS Register
·        Fatigue Management FACETS (Fatigue: Applying Cognitive behavioural and Energy Effectiveness Techniques to life Style)
·        Exercise and MS
·        Cognitive rehabilitation
·        Biomedical research
·        Causes of MS
·        Genes and MS
·        Vitamin D
Drug development path timeline chart
Drug development path
·        Stem cells
o   HSCT
·        Developing effective treatments
o   Early research 6-9 years, clinical trials 7+ years…
·        Simvastatin
·        MS Smart
·        Breaking news: Ocrelizumab – PPMS
o   Treatments in the pipeline – many in phase 2 which is great
·        Get involved – trials; as neuro etc. clinicaltrials.gov

I have missed out details of Becky’s fantastic presentation as they are within said presentation, her brilliant work, not mine!

Breaking Boundaries art
~10:45 ‘Conversation with Michelle Mitchell’ the MSS Chief Executive (spoke of what her impressions are and desire to increase global awareness & network) and Morna Simpkins, MSS Scotland Director (talked about MS Scotland’s whereabouts and plans). It was good to hear from ‘official’ leading bodies connected to – thankfully! – and leading the charity at this event!

This then kicked-off the day – after refreshments were had – of choices for us patrons to do as we wanted with the workshops available.
Out of interest I chose as first port of call to see what I could learn about Diet and Exercise.

Diet and exercise link

Labels:

Comments

Post a Comment

Popular posts from this blog

F1 Aerodynamics in Schools

Being a STEM Ambassador, I keep check with what STEM enrichment activities are planned that I feel I could support with my experience. I saw an “ F1 Aerodynamics ” related request and it tickled my buds somewhat! So I vested my interest via the formal portal/method to/with STEM and this was responded to. What was the challenge? It is a global competition given as per: “ The Competition - What's It All About? You are a Formula One™ team commissioned to design, construct and race the fastest Formula One Car of the Future, powered by compressed air cylinders. ” The first of the activities was in a middle school in Whitley Bay, to simply share my experience (having been an Aerodynamicist) with the Year 8 kids taking part in the F1 challenge. I enjoyed helping them with what they were doing at that part of their challenge.  BBC! Wow. I would have loved to have had that opportunity at that age. Unbelievable! Showing my age, a bit?! (my middle school had a
Read more

MS blog October 2023

  MS blog October 2023 25/9/23 This week of this, bad sleep, fatigue, affecting speech - #Dysphasia - and fatigue linked problems like forgetting to do certain things, eg. Download Toon ticket properly! Tired.                                                 04/10/23 (Wednesday) Again bad sleeps, bad #fatigue. Here's the thing. More notable 'cognitive overthinking' in that I am not on the money. Yet, was fine for the #MS #Zoom on Monday night. And starting to unintentionally upset Catherine, and therefore me too.   FB post:   #Tysabri At time of writing, I am pretty bloody next-level-tired. Or feeling fatigued, in the #MS world. Those who know that; know. Yes, I AM saying that #MS #Fatigue IS different to ‘just’ being tired. Who am I to say that? Someone who has lived with the twat (#MultipleSclerosis) for maybe 26 years now. Maybe more. I don’t know. So, #Tysabri. Well I started with this amazing #DMD (disease modifying drug) over 13 years ago, and it “made me a new man”
Post a Comment
Read more

Ocrevus

  Ocrevus . Notes 1 The infusion was completed at 1pm, and I was asked to wait for 15 minutes after the cannula had been removed. I was told to take it easy for the rest of the day, that'd I'd be tired. Body not used to the new drug, nor my mind, given that I had been anxious about #Ocrevus day. Ok then, I'll accept a lazy day. Was planning a curry takeaway anyway! I am tired. A few nights of bad / poor sleep. Ocrevus. Notes 2 Second infusion (second half dose) done by 1ish. Then again asked to rest for the day. Yes, as per, I was tired. #Anxiety due to an earlier taxi booking (for 07:20), with the small alarm fear! And also a few wake-ups during the night. Usual, but! Prepared with laptop, phone (obviously), headphones, sarnie, bottle of water, and chargers in case. And a BBCi downloaded film. The same as my first unknown Ocrevus trip. Slower start than last infusion, but after the paracetamols and antihistamine, the weak steroid infusion did its thing for half an hour; wi
Post a Comment
Read more