Tag Archives: support

Talking about myasthenia on the radio

This week I’ve had two firsts happen to me – both of which were pretty exciting.

  1. on Tuesday evening I spoke to E Care Radio in America about living with myasthenia gravis
  2. on Wednesday, something I wrote was shortlisted for a short story competition

While the radio interview is the most relevant for this blog, the short story news is also related. I say that because it was writing this blog every day for a year that gave me the discipline to keep writing. Over the last two years I’ve been focusing more on creative writing and I’ve felt myself getting better (very slowly). Being shortlisted is a huge deal for me as it’s given me the confidence to keep bashing those words out.

Sadly the story isn’t about myasthenia… but you never know about the future.

Radio interview

I was approached about doing a radio show around a month ago by American digital station E Care Radio. As June is Myasthenia Awareness month, they wanted someone to speak about what it’s like to live with the condition and I didn’t feel like I could refuse as I’ve always said I’ll take any opportunity to raise awareness about MG. But once I agreed, I didn’t really think about it again until Tuesday morning…when I started to panic and doubt myself.

Who was I to speak about it? What did I know after a mere five years? Worse…would I be able to talk about the small amount that I do know when the nerves kicked in?

It was the fear of going totally blank that made me write down as much as I could think to say…none of which I looked at during the interview. Still, I think it helped calm me down and focus on what I did have to say. Which was quite a lot as it turns out…the interviewer could hardly get a word in.

I spoke about:

  • my tips for coping with MG
  • the best things that my loved ones have done to support
  • balancing work with MG

You can have a listen to the interview on the E Care Radio website.

284/365 – Exciting line up at Myaware conference

Next month, people from all over the UK and Ireland will travel to Birmingham for the annual Myaware conference for people under 40. 

I wasn’t sure that I was going to attend as every weekend up until Christmas has something on for me at the moment and, just looking at the schedule, I feel like I need a break. However, the lovely community, Myaware’s Sarah and the interesting line up have convinced me to attend on the Saturday. 

The agenda is:

11am-11.15am: Coffees and Registration

11.15am-11.20am: Introduction and Welcome

Sarah Hindley, Regional Organiser, myaware

11.20am-11.30am: Icebreaker Session

Sarah Hindley, Regional Organiser, myaware

11.30am-1pm: Keynote Speech, including Questions and Answers

Dr. Fiona Norwood, Consultant Neurologist, King’s College Hospital, London

1pm-2pm: Lunch

2pm-4pm:Optional Workshops – see below

4pm-4.25pm: Charity Update

Ruth Ingledew, Chief Executive Officer, myaware

4.25pm-4.55pm: Tai Chi and Meditation for Myasthenia

Heather Lomas

4.55pm-5pm:Raffle results and close of day

Sarah Hindley, Regional Organiser, myaware

6pm-8pm: Dinner – thestudio

10pm: Taxis to the Eaton Hotel from thestudio

Optional workshops:

  • Employment, Finances and Myasthenia -Steve Bradshaw, Benefits Officer, myaware
  • ‘Mind over Matter’ – Robert Heaven, Counsellor, myaware
  • Managing Myasthenia Day-to-Day – Mary Quirke, Specialist Nurse, John Radcliffe Hospital, Oxford
  • Diet and Myasthenia- Farah Suleman, Dietitian, Queen Elizabeth Hospital, Birmingham

The weekend away takes place on the 21 and 22nd November. For more information, contact sarah.hindley@myaware.org

270/365 – A-Z of myasthenia gravis 

Getting diagnosed with a rare condition that you haven’t heard of  is a confusing experience. Not least when there are lots of acronyms used to describe things surrounding. The below is a working list of MG related acronyms and terms you will come across, that might be confusing. Please comment if you know any others I should add.

A-Z

Anti-acetylcholinesterase agents: Drugs like Mestinon which allow acetylcholine to remain at the neuromuscular junction longer than usual so that more receptor sites can be activated.  More information on treatment on Myaware’s website.

CMS: congential myasthenic syndrome. Definition: An inherited neuromuscular disorder (genetic fault) and not an auto immune disorder.

EMG: electromyography is an electro diagnostic technique used for diagnosing myasthenia. It detects the electrical potential generated by muscle cells when these cells are electrically or neurologically activated. 

Immunosuppressants: Drugs, such as aziathioprine, cyclophosphamide, methotrexate and mycophenolate mofetil,which suppress the immune system and are used in auto-immune conditions. More information on treatment on Myaware’s website.

IVIg: Intravenous immune globulins. Definition: This type of treatment is pooled human immunoglobulin type G (IgG) collected from blood donors. Immunoglobulins are the antibodies of the immune system. . More information on treatment on Myaware’s website.

LEMS: Lambert Eaton myasthenic syndrome. Definition: Auto immune system in which antibodies attack the nerve endings and stop muscles contracting. Unlike MG, LEMS symptoms start in the lower body. 

LOMG: late onset myasthenia gravis. For those that are diagnosed after 50.

MG: myasthenia gravis. A neuromuscular, auto-immune disease. In most common cases, muscle weakness is caused by circulating antibodies that block acetylcholine receptors at the nerve and muscle junction, inhibiting the  effects of the neurotransmitter acetylcholine stopping muscles from working fully.

Musk: muscle specific kinase is a receptor protein required for the formation and maintenance of the neuromuscular junction.

OMG: ocular myasthenia gravis. Definition: MG that only affects eyes.

PLEX or Plasmapheresis: Otherwise known as plasma exchange is a procedure that removes the abnormal antibodies from the plasma of the blood. More information on treatment on Myaware’s website.

Prednisolone: immunosuppressant steroid used to treat MG. More information on treatment on Myaware’s website.

Sero-negative myasthenia gravis: Around 10-20% of myasthenia gravis patients do not have acetylcholine receptor (AChR) antibodies (seronegative), of whom some have antibodies to a membrane-linked muscle specific kinase (MuSK).

SFEMG: Single-fiber electromyography (SFEMG) is a selective EMG recording technique that allows identification of action potentials (APs) from individual muscle fibers. It can be used to diagnose MG. See EMG for more details. 

Spoonie: Read about the idea behind the spoon theory and spoonies on my 51st post. 

Thymectomy: Surgical removement of the thymus gland. It produces immune ‘T cells’, especially before age 40, and exports them to the rest of the body. It lies between the breastbone and the heart and may be involved in the immune reaction against the AChR. The procedure can improve myasthenia in some young-onset people.

Having started this I have just come across the Myaware A-Z which I had never seen before and it’s very thorough. 

243/365 – The power of opening up

At the start of this week I was in a pretty dark place and I didn’t know which way was up. There’s been a lot going on recently and I felt completely unmotivated to do any of the issues I’m faced with. I always find it easier to bury myself in work, to spend all my thinking time exercising or to focus my attention on worrying about others, but that can be extremely destructive. Thankfully, I have a saint of a girlfriend who knew the right questions to ask to get me to talk. 

For someone that never seems to stop talking, or if I’m being kinder to myself a people person, I’m not great at opening up. It doesn’t come naturally to speak about things I’m struggling to cope with; it doesn’t come naturally to allow myself to be vulnerable. Why should it..I’m Scottish and repressed emotions are a national characteristic. 

Anyway, it came to a head this week and I had a crying fest. Letting go after weeks of trying to keep it together was the start of me feeling better. I identified several key things that are negatively impacting me at present including feeling directionless with my MG treatment.  On the back of this, I decided to contact Myaware to speak to a counsellor and just a day after filling out the online form I received a call to set up a time to have a phone chat. 

This week has reminded me how one small positive step can start a chain reaction. Finding the motivation to tackle one thing can be enough to start a complete overhaul.

229/365 – London picnic tomorrow for families with myasthenia

If you’re free and around London tomorrow, there is a Myaware picnic at Ally Pally for people with myasthenia and their families. Kicking off at 12, it’s sure to be lots of fun and hopefully will help make the loved ones of those with MG feel they have a support network.

Sadly my parents have gone back to Edinburgh now, but my London family, Elaine, has kindly offered to come along with me. 

Tomorrow is meant to be a scorching 29 degrees, which sounds great but for some with MG this spells trouble as they weaken in the hot weather. However, don’t worry – Ally Pally has an indoor cafe and a bar with shaded outdoor seating so there are options to keep you cool in the heat. 

 
Hopefully I’ll see some of you tomorrow but if not I’ll share some pictures of the day in this blog over the next few days. Have a lovely weekend!

195/365 – London picnic for families with myasthenia 

Next month, August, there’s a chance for families with someone affected by myasthenia to spend time together and make new supportive connections. Held in London’s Alexandra Park, in the north of the city, the day will offer fantastic views, hopefully sunshine and guaranteed good company (Elaine’s going). 

The idea for the picnic came about at the last Myaware Young person’s meetup group. Discussing one of the member’s family situation, the group reflected that it might be useful to bring our loved ones together at an event. Having MG can puts a lot of strain on families/partners etc and, as it’s a rare disease, without charities it’s unlikely you’ll meet someone else in the same position. This is a great opportunity to connect with other people in a similar situation and who have been through the same challenges you have faced.

The plan, at present, is to meet at on Saturday 22nd August at Alexandra Palace at 1pm cafe bar before moving onto the park for the picnic. I’ll update the blog if this changes. If you’re interested in coming along, either join the Myaware Facebook group or email  sarah.hindley@myaware.org.

186/365 – 7 days of myasthenia update

First of all, thank you to all those who responded to my idea of carrying on the blog next year.  

As mentioned in my 183rd blog, I’ve been thinking about turning this website into a place where anyone with myasthenia can write about what life is like for seven days. I’m keen to capture how MG impacts people differently and to create a safe space for the myasthenia community to share anything. 

I’ve also been thinking how great it would be to get family members, partners, children of, and friends of people with myasthenia to write what it can be like from their perspective. As discussed previously, there can be pressures and stresses on the loved ones of people with MG that may never be aired. How great would it be if this blog could also be a space for loved ones to share coping strategies, to trade stories, to feel like what they’ve got to say will be heard without judgement and to feel part of a community too.

Again, if I go ahead with this idea, these blogs can be anonymous. If you think you know someone who would be interested in contributing, or if you have a loved one who has MG and are interested in writing, please leave a comment. 

Warning – the warm and fuzzy feelings you get from being open, being heard and being understood can be addictive.