315/365 – 50 posts to go

Earlier this week it was a month to Christmas and now I realise I’ve only got 50 posts to go (and a bit of double posting to do to get to 365 by December 31). I can hardly believe I’ve reached this final milestone – where has 2015 gone? 

Over the coming weeks I’ll be writing about:

  • my plans for the future of 365 days of myasthenia
  • a bit more about #facesofmg 
  • the big news for people with MG this year
  • what would make life better/easier for people with MG in the future

And a lot more. I’m still very open to suggestions so if there’s anything I haven’t written about so far that you would like to know about please do get in touch.

In the last 315 blogs I’ve covered a huge range of topics. You can browse by some of the key themes here:

All that’s left for me to say is…It’s the final countdown.

314/365 – Faces of myasthenia 

Walking through hipster haven Shoreditch recently, I spotted an advertising campaign of Tech’s top talent. The point of the campaign was not only to celebrate the individuals featured but also to show the diversity of the tech world. It reminded me of an idea I had a while ago for showing the diversity of the myasthenia community. 

My idea was simple: show the range of different people affected by MG through photos. This differs from the world map I blogged about last month as the faces should have more of an impact on people who come across it. Originally I had thought in the UK, but given the international engagement with this blog – why not do it on a worldwide scale? 
Again, originally I had thought of a calendar but it would be unlikely that anyone outside of the myasthenia world would see it. So why not create something that could be shared on the internet? It doesn’t mean you can’t do the former as well, but this has the potential to reach more people and create awareness.

My thoughts moving forward with this:

  1. Put a call out for photos of people with myasthenia – alongside the photo I think it would be good to have your first name and country you are from
  2. Ensure all images are edited to the same proportions 
  3. Create a Flipagram with all the different images (click here to see a previous example I did on Flipagram)
  4. Share it on social media and on the blog – encourage you to help get it seen as widely as possibly. I thought to help to get this shared and seen, a hashtag like #facesofmg (possibly linking in with #ihaveheardofMG) could work.

If people don’t send me their pics, I could use the #ihaveheardofmg photos as a starting point.

So, it’s over to you – what do you think? Would you be willing to take part? 

313/365 – Tips for people with myasthenia to keep well this Christmas

In exactly one month, it will be Christmas morning and our bodies will be sighing in preparation at the gluttony to come. As a diehard festive fan, the number of positive things I can list about the season of love and giving are endless. A few of my favourites are: 

  • spending an extended period of time with family
  • catching up with friends doing Christmassy things 
  • mince pies washed down with mulled wine

I’m incredibly lucky that Elaine shares my love of all things Christmas and we try to do lots together. However I’ve noticed over the last two years that my symptoms get worse in the build up to Christmas. Why? Exactly because of the gluttony that the festive period entails. 

This year I would like to not have to explain to my loved ones that the reason I’m looking ‘bad’ is because I’ve been having too many festive spirits. So I’m going to be attempting a more restrained December. Here’s how:

  1. Selecting my Christmas nights out carefully: there tend to be endless invites for catch ups over Christmas and before you know it every night of your week will be busy. I’ve done this and it’s stupid. You end up skint, you end up exhausted and you end up often not really enjoying the time spent with friends. January needs some brightening up, so why not hold off some of the catch ups until then?
  2. Ensure I have several healthy days a week throughout December: in December, we are surrounded by sugary treats and drinks so it’s no wonder our bodies are crying our for a detox by New Year. I’m going to try to give my body an early detox this year by making sure I’m eating healthy for around half of the week (mon-thurs). That way I’ll feel more deserving of a mince pie and a mulled wine. 
  3. Spend more time at home relaxing: just because I’m not out partying doesn’t mean I need to be at work or busy. This year I’m going to try to give myself at least 2 evenings a week of time spent relaxing. I want to do a bit of Christmas crafting and I also have my favourite Christmas movies to get through. I might even get to watch Home Alone 1, 2 and 3 this year.
  4. Keep up my exercise schedule: I wrote last week about struggling for fitness motivation at present and this tends to only get worse during the festive season as I repeat ‘I’ll start again next year’.  This year I intend to maintain my 3-4 times a week workout schedule right through Christmas and New Year. 

By following the above four steps, I hope to have a strong and healthy start to 2016. 

312/365 – Maria and Zenaida

Of all the familiar and new faces I spent time with on Saturday at the Myaware Young People’s conference, Maria and Zenaida were the most remarkable. Why? Because they grew up in the same Portugese village, have been friends since they were small and both have myasthenia. The friendly pair openly shared their story with me.

Zenaida was diagnosed 16 years ago back in Portugal – she was told at that time she was one of 500 in the country to have MG. Maria knew of Zenaida’s condition but didn’t connect the dots when she started developing MG symptoms of her own. 

‘We all have such different symptoms – it’s a unique experience for each of us,’ she said.

It was only when she was telling her friend that the alarm bells started ringing for Zenaida – she told Maria to get herself immediately checked out by the doctor. 

I have heard this story often from people with MG – they have correctly diagnosed it in others around them. With it being a rare disease, sadly not everyone who starts having symptoms has a friend or connection that knows about myasthenia. Maria and Zenaida are the first pair of childhood friends I’ve met who both have it.

Zenaida has had three crises during her 16 years of life with MG, whereas Maria had her first terrifying experience of breathing difficulties this year. She said it truly made her understand how difficult the condition can be – she blacked out and woke up in hospital where she spent days recovering.

They have been supporting each other since they were young, but Maria never felt as lucky to have a friend who understands during those first days and weeks of recovering from crisis. 

While this story got me wondering once again about how we develop this mysterious condition, it also made me jealous of the easy understanding these girls share. Most importantly, it reinforced that the more people we can talk to about MG the better chance we have of helping others to identify it quickly.

So just in case you’re new to this blog – if someone tells you they have any of the following tell them it could be myasthenia gravis and they need to go their doctors:

  • muscle weakness
  • double vision
  • droopy eyelids
  • constant heavy limbs
  • squint eyes 
  • difficulty speaking
  • difficulty swallowing
  • their limbs give out 

 

 

311/365 -Funding research for myasthenia

So yesterday I covered the key points in the speech given by Myaware’s CEO Ruth Inglew. Today I wanted to look at the research she mentioned.

Nearly £1 million from the charity has been spent on funding research over the last nine years. While this doesn’t sound like a huge number, around £110,000 a year, it is being used to fund some interesting projects.

Read all of the blogs about the Myaware Young People’s conference 2015.

Some of the research that is being funded currently is:

  • A self assessment tool which gives you a medically accurate score to give your consultant and that you can track over time – I wrote about this research trial here when I thought I might be able to take part in it.
  • The University Hospital Southampton is looking at why it takes aziathioprine so long to work (6+ months) and if there are any early indicators to show it won’t work. 
  • Moorfields hospital in London are looking at ocular myasthenia gravis (OMG) and signs of people who are likely to develop generalised MG.
  • In Oxford, there is work being undertaken to look at existing medication to see if any could be remodelled for use on myasthenia gravis. This is what happened with salbutamol – a drug used for people with asthma which was repurposed for those with congenital myasthenia gravis. 

There is some interesting research in that list with a mix of trials for new arrivals to the myasthenia world (aziathioprine/OMG) and also for those who have been in the club for a while now (self assessment/drug remodelling).

Is there anything MG-related that you would like to see researched? 

310/365 – Myasthenia Gravis: the latest

As I mentioned in yesterday’s post about the Myaware Young People’s conference, CEO Ruth Inglew gave an update on the charity’s activities and aims over the next year. 

Some of the information I had heard before and some was new, but it was interesting to hear it all put together.  

 
An overview of myasthenia

Ruth started by reasserting that it is difficult to know exactly how many people in the UK with MG there are due to a lack of NHS and local authority data. The charity thinks there are:

  •  Between 10,000-12,000 people with a form of MG in the UK
  • 53% over 60
  • 47% under 60
  • A third have ocular myasthenia gravis
  • 600 have congenital myasthenia gravis
  • 300 have LEMS

The charity have a database of around half of the people in the UK who are affected by MG and have in the last year increased the number of new members by 721 people.

It’s incredible to think of how many people there are out there who haven’t reached out for support.

Data from the Neurological Alliance

The next section of the talk focused on data from the Neurological Alliance in 2014.

It said that:

  • 51% of people with MG saw a GP three or more times before they were referred to a neurologist
  • For 40% it took more than 6 months to be referred to a neurologist
  • More than 50% had difficulty receiving treatment or services

Even more shocking than the above is the amount of money being spent on non- elective hospital stays for myasthenia patients – a whopping £16.3 million a year in 2012/2013. 

NHS spend varies largely in the different regions. The charity has calculated that replicating the working methods of the cheapest region across the country, assuming patients in that area are receiving the best care meaning that they aren’t needing emergency hospital treatments, could save the NHS around £8 million a year. There are quite a few ifs and buts in the theory, however the regional differences do suggest there are savings to be made.
There is scheduled to be a National Institure for Health and Care Excellence (NICE) report into neurological problems from 2016, which Myaware is hoping to feed into.

Aims for the charity 

Some of the aims Ruth pointed out moving forward are:

  • Campaigning for medical exemption certificates as one third of people only find out about them through Myaware. I found out after a year and therefore was paying around £30 a month for those 12 months that I didn’t need to pay. 
  • To get accredited GP training to do with myasthenia gravis – whether that is via online training or a seminar
  • Building on this will be new information for medical professionals provided by Myaware – the charity is hoping to create postcards for members to give to medical professionals when being seen by them

More from this talk on research in my next blog.

309/365 – Myasthenia community coming together

Yesterday was this year Myaware’s Young Person’s conference in Birmingham. Kicking off at 11am, the schedule was quite busy until after 5pm.

Sadly I missed the morning activity as we got delayed coming through from London but from what I heard the presentation by Dr Fiona Norwood, of King’s College Hospital, was both interesting and made lots of the members want to transfer over to her. From the brief conversation I had with her over lunch I can well imagine how great she would be as a consultant. More about this in my next blog.

The afternoon schedule was good – with a mix of workshops, an update about the charity from Ruth (another blog on this will follow) and finally a session of Tai Chi and relaxation (as pictured below) which was definitely my highlight of the activities. Everyone who was there will long remember flying like majestic birds. 

 
For me though what made the day was the conversations with my fellow MGers from across England and Northern Ireland. There was a really positive atmosphere in the room and everyone seemed delighted to be in a place where they didn’t need to explain themselves. 

While there was a sense of support amongst the group and being there for anyone who was having a hard time, there was also lots of laugh. While some of the sessioms organised were quite serious, the company was relaxed and everyone seemed to be having fun when chatting with each other.

As I’ve said above, I have plenty more to say in the next few posts. For now though, thank you to everyone who made my trip through to Birmingham (on the slowest train on earth) worthwhile. I’ll definitely be staying over next year!

308/365 – The eve of Myaware Young People’s conference

I wasn’t sure if I was going to make the Myaware conference for under 40s tomorrow. First of all, my weekends have been so manic over the last while that I didn’t know if I could deal with another Saturday night away from home. However, when the posts about it started on the Facebook group a while back, and the excellent line up was revealed, I suffered FOMO (fear of missing out). So I compromised and decided to go through to Birmingham on Saturday morning and come back the same night. 
I didn’t expect Elaine to want to come – a whole day is a big ask and, with her full on job, her weekends are precious. However, when she said she wanted to join me I was delighted. Our plan until today was to drive through together in her car. But then her indicators stopped working.

Swithering about whether to go or not following this latest set back, I once again looked at the line up and decided I would be mad to miss it. So Elaine and I will be getting up much earlier than we normally do on a Saturday morning (especially since I’ve been out at a Grease singalong tonight as pictured above) to ensure we’re there for kick off. I’ll be tweeting from the conference at @LaurnaRobertson and will post about it after the event. 

307/365 – Thinking of Carole

Today is the funeral of my honourary auntie Carole and the family very kindly decided to give any money donated to Myaware. As I sadly couldn’t make it up for varied reasons, my mum asked me if I wanted to contribute anything to the speech that she was asked to give. The words flowed as I thought back to many happy memories we shared. Here’s what I wrote for this wonderful woman: 

Carole, an honorary auntie to me, who always had warm hugs to share, a filthy laugh to brighten up my day and a joke to tell. Our family gatherings will not be the same without you Carole.

When I heard the news, the first memories that flooded back to me were of happy times we shared in Cyprus. Of her sneaking me cigarettes when my mum wasn’t watching, the hilarious stories she’d share over evening drinks, her being kind enough to let me stay in her flat, and, just like me, her passion for shopping. 

The latter was shown most clearly to me when we all took a trip to Northern Cyprus. We were cooped up in a car for what felt like forever for a teenager. By the time we arrived in Famagusta, I wasn’t interested in seeing any of the sights – I just wanted to get to the shops. Thankfully I was in good company with Carole – the fastest I’ve ever seen her move was when the market came into view. Carole was a champion haggler and this was my first full experience of her talents in action. I’m not sure what she came away with, but she treated me to a beautiful bag at half the price the traders bought it for. I was in complete awe at her skills and whenever I try to barter now that day comes to mind.
On another Cyprus evening, I had flown my then girlfriend in and Carole kept looking at us and smiling. I hadn’t told her at this point that I was gay and that this girl was more than a friend, but later that evening she brought it up in the most natural way and gave me the warmest hug. That was Carole – she was always warm, she was always generous and she loved seeing the people that she cared about happy.

When I had an operation last year for myasthenia gravis, she not only texted me every day to check how I was getting on but also my mum to see how she was doing’

I continued by saying I wanted to thank the family for donating the collection money today to Myaware and how much it means to me.

Carole, you will be in my heart today and always.

306/365 – Struggling for fitness motivation 

Over the last few weeks, the weather has been getting me down. It has manifested in lots of ways; a preference for indoor over outdoor activities, not being able to get enough sleep and, most importantly, a complete lack of motivation to exercise. This lack of desire happens to me most years around this time – I think due to my body going into hibernation mode. But there have been two differences this year that are concerning me a little.

1. I’ve not been able to talk myself into it

I never enjoy exercising as much in the winter as in the summer. Like every normal person on the planet, I prefer to keep fit with the sun on my skin. In winter, I tell myself I need to stay fit to ensure I can enjoy that feeling again in a few months time and I put the work in to maintain a certain level of stamina. I also now have the added driver of keeping my muscles as strong as possible. I am normally able to motivate myself enough to silence the excuses.

Worryingly, this time around I’ve been listening to the protests. Not just once or twice – every week for the last 2 months, I’ve been doing much less than I normally would.

What I’m doing about it: This week I’ve been firm with myself and have done two sessions since returning from Dublin. Making it to the gym for each one was a battle of willpower, but I did it and I feel better for it. To help get me there, I’ve mixed up my tired routines and thrown in some fitness challenges.
2. I’ve got less energy than I’ve ever had before

As a result of not exercising as much, on top of eating badly and I think what the high dose of aziathioprine does to my body, I’ve had low energy levels. This is a vicious circle and one I am determined to break.

Because I’ve been struggling to motivate myself, I can already feel my stamina levels dropping. Yesterday on the treadmill, I was exhausted doing something I would previously have been able to do confortably and I’m struggling to find the strength to cycle at the level and speed I used to manage comfortably. I don’t want them to drop any further.

What I’m doing about it: Plan three to four sessions a week up until Christmas and start eating healthier food to help with energy levels.