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Here are some things which make me smile…..my daughter Emily, movie nights, spending time with family and friends, being outside in the sun, laying on a beach listening to the sound of the waves and doing fun exhilarating things like the zip wire at the Lily adult weekend 😁 xx

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Leigh Network Colour Obstacle Rush

With early starts and moral support, for the last few months, our team of runners have been building confidence, strength and resilience as they undertook training for the Liverpool 5K Colour Obstacle Rush 2019!

On the day, the weather was chilly with an overcast sky that was heavy with cloud, so our team were doing star jumps just to keep warm. After a 15-minute warm up of dancing, cheering and singing with hundreds of other participants, they were off!

From where my dad and Ii waited- in the warmth of the car, munching chips- we could hear the ‘thud, thud, thud’ of the house music as it pumped them on. My dad could see the stewards escorting the walkers/ runners/ dancers around the bouncy castles, inflatable slides, space hoppers… and that’s just to name a few of the 20 challenges and obstacles they had to overcome! But, together- with teamwork- they did it!

Mandy's first-hand experience:

“So I managed our much awaited 5K Colour Obstacle Rush. Lots of fun- glad I did some training beforehand! The bouncy castles were sometimes a challenge for my uncoordinated body lol. Too many years since I was last on a space hopper and probably won’t be going on one again Have to thank Donna Idris, Musa Idris, Sarah Bradshaw and her friend Erin who joined me to raise funds and mitochondrial awareness for Leigh Network. Also want to thank everyone who has donated and sponsored. Your kindness and generosity means so much- Feeling the love today! Home now, had a bath and enjoying a bottle of sparkly XXX”

As Mandy said- a huge, huge thank you to our wonderful 5K Colour Obstacle Rush participants and a massive thank you to every individual who has so kindly and generously sponsored the team - Mandy, Musa, Donna, Sarah and Erin!

You can show your support by donating on our Leigh Network GoFundMe page: https://uk.gofundme.com/leigh-network-family-mito-meetings

If you are wondering what’s next for Leigh Network, we have upcoming details of our next exciting event- which you can get involved in too!

If you too have been inspired take a challenge for mito in support of Leigh Network, then please get in touch… 

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Newcastle Patient Information Day for Mitochondrial Disease

My Mum and I were invited to the Newcastle Patient Information Day. The Newcastle Mitochondrial Highly Specialised NHS team and Wellcome Centre for Mitochondrial Research held it in collaboration with the Muscular Dystrophy UK and The Lily Foundation at the Crowne Plaza, Newcastle on Saturday the 6th of April.

Attendees were invited to go to one of four focus groups. I, not shockingly to those who know me,  chose the art one, which was about using art to interpret how your condition makes you feel, both emotionally and physically. We used materials such as coloured tissue paper, bright acrylic paint, and chalk in the first half of the workshop.

To encourage those creative juices to flow, we wrote down words associated with mitochondrial disease and our feelings towards it. After these were swapped around, we could then get ‘arty’!

As I have no photographs, I shall try to describe my pieces from memory. The first one had a flutter of violet and small, shredded tissue paper that I tore up to represent the tears that fall with Mito -  from grief as we lose those we love and as our own bodies fail and our abilities deteriorate. I then added violent red slashes to show the anger and frustration at our situation, and two yellow-orange    lightning bolts either side of the violet tears to express how mitochondrial disease never fails to shock. The green border dotted the edges to express how isolating mitochondrial disease can feel.

Piece two was a simple, charcoal face of a flower. It was the shape of a flower, with swooping petals, stained and smudged. In a way, I think of the brain as a flower, with an eye in the rain as the centre. That’s how I tried to depict it, anyway. Although a fairly simplistic way of looking at the brain, my mum- who is not at all biased, I’m sure- said it was my best work yet...

For piece three, we used clay and reimagined our 2D artworks as 3D clay pieces. I found this a little too challenging though, so I can’t say with any certainty that it looked more than a lump of clay by the end. But it was great to express my feelings about mito through art!

An interesting observation I made was that all of the participants in the art workshop were, to varying degrees, visually impaired...

After art fun, it was time to get serious with science. Our much-loved Sir Professor Doug Turnbull  (who is pictured with me) opened the afternoon of talks with a big announcement: he is stepping back from clinical work to focus more on research.

Dr Andrew Schaefer then spoke about how mitochondria are the powerhouses of the body, and how when they don't function correctly, it can cause a host of problems. He also stressed the importance of having a connection with local services such as GPs, OTs, physiotherapists and speech and language therapists. Dr Schaefer highlighted the fact that mitochondrial disease patients are not immune from other health complaints and illnesses, before moving onto share the latest developments in mitochondrial donation IVF techniques which Doug and his colleagues at Newcastle University developed to prevent maternally inherited mitochondrial disease from being passed on to the next generation. It will help those who may have lost children already to mitochondrial disease and those who may genetically be at risk of having a baby with this condition.

After frequent snack breaks (yum!), Dr Rhys Thomas shared his views on cannabis and his apprehensive feelings towards prescribing it. He said the anxiety comes from the lack of research into it, e.g. if a mitochondrial disease patient has cannabis oil-  for, say, epilepsy- what will the affects be later in life? For example, will it impact the memory so much that it could cause dementia after long term use? Does it contribute to damage of other parts of a cell? How much THC (the hallucinogenic part of cannabis) is in the oil prescribed?

It was interesting to hear a medical opinion. My own viewpoint is: if you’ve tried all the usual medications and still get no relief, but a drop of cannabis helps, then I personally think it is the patient’s choice, as long as they are informed of potential side effects.

Jane Newman then gave a talk on the advantages of exercise and how doing little and often - even a little extra stretch in the morning can really boost mitochondria production and improve mood. She emphasised though, not to overdo it.

Alison, from Newcastle’s SALT team, shared a video of two different types of swallow and discussed the positives of alternative, non-oral methods of eating and of getting nutrition, such as peg and nasal feeds. You can read some of our inspiring Leigh Network families’ stories, for whom a peg has transformed their lives, by visiting https://www.facebook.com/Leigh-Network-203975279619098/

Nurse Consultant Catherine Feeney discussed her favourite topic: the bowels (those of you who know her will recognise the enthusiasm Sister Catherine has for the bowels). But first, before getting to that particular function, she discussed the bladder, including recent research where mito patients who have urinary incontinence issues (as is common with mito due to the pelvic muscles weakening) took part. After discussing that watery subject, she then moved to bowel movements. Many of those with mitochondrial disease suffer from constipation due to poor muscle strength and lack of physical activity. Most unusually, she did not advise a fibrous diet, due to fibre-rich foods being difficult to digest.Catherine instead recommended laxatives and stool softeners for healthy daily bowel emptying.

Research news and insights were presented throughout the afternoon, like little teasers tickling our mito taste-buds. Eventually, it was time to hear the latest in trial news from The new head of clinical service Professor Bobby McFarland.

There is literally so much going on for epilepsy, it’s amazing!  The other major research development was for rrm2b, involving a nucleoside trial. Participants of this one need to have a variety of tests, including a skin biopsy and MRI, which aren’t all suitable for all patients, unfortunately, though the trial sounds quite promising.

The fantastic Rosemary spoke about fighting for your rights, including PIP, carers allowance and respite, before Lyndsey from The Lily Foundation closed the sessions.

We then got to meet and chat to the researchers. I always enjoy this part...

I chatted to Gareth and Shane, who are both working together to find a viable treatment for mitochondrial disease. They were so passionate about their work- it was lovely to hear them talking about it. They had some great banter between them and a healthy competition to get there first - one method involves attempting to replace, or rebuild the faulty mitochondria with robust, healthy ones, while the other involves extracting the faulty part of the cell to allow the healthier areas to flourish and grow, overriding the damaged parts...

Whilst both of these may sound simple in theory, the reality of enacting the theories into practice is very difficult. The mitochondrial research team has expanded over the years and the researchers spend day and night working - literally, it is that intense a level of dedication in the lab. Their passion was awe inspiring.

I, on behalf of our Leigh network families, would like to say an enormous ‘thank you’ to everyone who spoke on the day, and especially to the Newcastle mitochondrial team - the specialists, researchers and all those involved in searching for symptom treatments and, one day, that magic wand that we hope will wave a cure to mitochondrial disease.

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