20/05/2024 - 'Brizzle' by David

On 13th May, we celebrated our 7th wedding anniversary. As we don't know how many more anniversaries we will have, these days are precious to us. Its also 6 months since we renewed the vows so we now get to celebrate twice a year!

This week I attended the monthly local MNDA branch coffee morning for the first time. It's held on a weekday so previously I have been unable to attend as Alice is at work and I no longer drive, but Nigel, who attends as carer to his wife Janet, picked me up and I had a really nice morning. 

There were 19 people there, made up of sufferers, carers, and volunteers, and we chatted over coffee and biscuits about our symptoms, the support available to us and the upcoming activities and fundraisers planned. 

We are having a day out in the Solent on a boat this coming Sunday that has been adapted to accomodate wheelchairs. We are also having a day at Paultons park, a local theme park which has been organised for the children and grandchildren of people who have MND. Rachel and Anna, although not children anymore are both coming, as are Fin, Alice and I. Both these activities are paid for by kind donations to the MND Association. We also chatted non MND stuff like football, food and jumping out of aeroplanes! 

It was interesting for me to see what I will have to contend with in the future as I was the youngest there and all the others were further on in their journey. Some were walking but struggling to talk, some were in wheelchairs but talking, while others were in a wheelchair and non-verbal. It was really nice to meet lots of people that I haven't seen before and to learn about electric wheelchairs, feeding tubes, being hoisted in and out of bed and to see how someone in a wheelchair is transported in an adapted vehicle. I was really pleased to see Terry, one of the first people that Alice and I met with his wife Ruth, at our first meeting in August last year. Unfortunately he has been poorly over the winter and hasn't been able to attend. He has deteriorated since we last him and is now hoisted in and out of his wheelchair, has carers in four times a day, is tube fed and has very little use of his hands. He can still talk though, and like everyone else there he is immensely positive and enjoying doing the things in life that he can do, rather than getting down about the things that he can't. There was such a lovely positive atmosphere in a room full of people brought together by one horrible link, laughing and joking and in doing so, supporting and caring for each other. 

I received an email this week totally out of the blue from an old friend that I hadn't seen for over 40 years and it was great to hear how her life had shaped out since our schooldays. She had been made aware of this blog and had reached out to me as she has been diagnosed with Multiple Sclerosis, which is a neurological muscle wasting disease, as is MND. Sadly her sister has also been diagnosed with MS which is very bad luck for that family. It was lovely to share our life stories and of course we could empathise with each others struggles. We will continue to keep in contact from now on.

One of our running friends had expressed a desire to push me in the running buggy so we met up with her so she could have a go. After previously being pushed into a few obstacles, we have decided that anyone who would like to push me now has to pass a buggy driving test, and we are happy to say that Layla has passed her test and can now push me officially!

Layla is also a competition weightlifter so after practicing steering and turning, I was off at quite a pace!  Despite Layla's muscles, Alice was a little relieved to see that she also struggled on some inclines and it's really not as easy as it looks!

So to the main event of the week, which was a weekend of eating, socialising and running at our running club's 20th anniversary national celebration in Bristol. 

We travelled on the Friday and for the first time we took the buggy on a bus and a train with no problems which was encouraging. Although both were relatively easy, having to use station lifts and wheelchair spaces on buses made us aware of the challenges someone with a disability faces on public transport, something I had previously taken for granted.  

An Indian buffet and social meet up got the weekend off to a great start and we settled into our accommodation, which we were sharing with five other friends. 

On Saturday we went to Ashton Court parkrun and nearly 200 Vegan Runners from all over Britain scanned in amongst the 500 runners, so it was lovely to see so much green and black out there on the course.

It's a very Hilly parkrun so I voluntered as a barcode scanner and Alice was free to run buggyless! 

It was lovely to meet friends, new and old, including the surprise of seeing Kerry and Richard, our friends from Hampshire who have since moved to Wales and we spent time catching up in the sunshine

The parkrun is held within the grounds of the Ashton Court House estate, which is an impressive mansion, quite gothic and Bruce Wainey! Interestingly, it houses one of the suicide prevention benches placed around Britain by Ricky Gervais following the impact of his comedy drama After Life. There was a plant based ice cream van within the grounds doing a roaring trade with all the vegans present and we had a lovely Mr Whippy with raspberry sauce, caramel crunch and a biscoff biscuit as a flake! 

On a drive around Bristol, we saw the de-Colstonised plinth, IKB's SSGB, and the Clifton suspension bridge (also designed by IKB). After a tasty Asian Poke Bowl and a gorgeous cheesecake, Alice and I were asked to give a short speech to explain why I have gone from a 21 minute parkrunner and marathoner to being pushed around in a buggy within a few years. We also thanked everyone for their love and support that the running community have shown us. None more so than the buying and wearing of the green and black striped Baker Socks, that so many Vegan Runners are wearing around the country. Some of the proceeds raised go to our local hospice, Countess Mountbatten House and some to Animal Free Research. 

We then enjoyed a little dance together as a couple of VRs, Kathryn and Simon, performed the hits, including Aztec Camera's 'Somewhere in my heart' which they played for us. 

I was asked to do a DJ set to round the night off and DJ Tintin had a great time playing a set of dancefloor favourites.

On the Sunday, Alice pushed me around the Great Bristol 10k, our first proper event in the buggy. We took the VRUK mascot, Bronwyn the broccoli. along for the ride and although it was very warm, sometimes hilly, and hard running on the cobbled section, Alice ran an unbelievable 1 hour and 1 minute time!

The reaction we received out on the course was amazing, with so many cheering us along and shouting out our names.

We had a great time and we thank the organisers for allowing us to show inclusivity for all. As well as the wheelchair race, there was a visually impaired, and 1 mile family race. We have another 20th anniversary celebration in Glasgow in October, so we hope to run there too. 

Regarding my current symptoms, it looks like the swollen feet that I've had for a few weeks now, are due to my MND as I've found out that blood flows through muscle (who knew?) So as my muscles weaken and die, my blood flow is compromised. Also, my voice has this week been very croaky, but it's too early to tell whether this is the start of my voice becoming weaker or due to my recent tonsillitis. 

Have a great week, stay groovy and as our lovely friend Kate said to us in Bristol, Life Is Now x