13/10/2024 - 'You take the high road and I'll take the low road aka shouldn't have flown' by David (and Alice)

The blog has not been easy this week and I'm not sure why. It usually flows quite naturally but I didn't feel like it this time so Alice has pitched in and tidied it up as well as adding anything I've forgotten. I still enjoy writing it and I will continue to do so but this week...meh.

I had a couple of nights on the island, staying one night with my mum, and one with my daughter Rachel and her husband Max.

We went to the woodland burial and tended to the flowers around dad's tree and we sat in the sunshine and remembered how caring and funny he was. Afterwards we had lunch at a new Alzheimers Cafe within a Dementia resource centre which includes chiropodist, hairdresser, and masseuse. Dad used to go to an Alzheimers cafe, and he liked to do colouring in, baking, and making Christmas cards in a friendly environment. It also gave mum some much needed respite, from full-time care. 

I also had a doctors appointment to try and determine why I'm getting so many sore throats and colds as I think I've been poorly three times this year. He said my latest bloods had come back normal and looked in my mouth but couldn't see anything out of the ordinary. I have a respiratory appointment next week and then I'm seeing my neurologist the week after. After discussing my croaky voice with the speech and language therapist, she booked me in for a nasendoscopy in the ENT department to coincide with my neuro appt which is handy as getting up to the hospital on my own is now too difficult. I'm hoping when they put the camera up my nose, they will see why my voice is so strained. I'm not sounding slurred or slow which is usual in MND so it may be something like a nodule on the cords which could potentially be treated. 

The GP also weighed me and I'm now 62.5kg, which is 2kg down since my last weigh in. I still have a good appetite and because I'm no longer exercising, I even have a little tummy tub, which I've never had before. The reason for the weight loss is the deterioration of my muscle mass. I looked at my legs in the bath and they look very thin and that is why I can hardly walk unaided now - poor little pins!

I'm as worried about my voice and my hands, as I am about my legs these days, as they both seem to be deteriorating quite rapidly, which is obviously disappointing. I have difficulty with my knife and fork and I end up tearing the food rather than cutting it now, and washing up glasses and mugs is hard as I haven't got the strength to get the cloth in and around them. The most disappointing thing this week was having to change one of my favourite pairs of trousers for a pair of jogging bottoms because I just couldn't get them down and up again when going to the toilet because they were too tight. I always knew that the day would come when I have to give in to wearing joggers every day for that very reason, but as a person who has always cared about what I wear and how I look, it was a sad day. I have a pair of stretch jeans and a few pairs of looser trousers which I can still wear while out, but my favourite cream sta press strides may have to go to the charity shop. 

Alice and I went to the last face to face Tuesday night MNDA support group meeting before it moves online as the winter nights draw in. We didn't have a speaker this month, but it gave us an opportunity to just sit around the table, chat and laugh about life. After a couple of hours of stories and banter, we realised that we had hardly mentioned MND, which was quite nice. We all have too much going on in our lives to worry about dying. 

We finished, as usual with a raffle made up largely, with items that we have brought ourselves, that we want to get rid of so it has become a bit of a joke that nobody actually wants their number to be picked out. The same picture frames and rain ponchos seem to appear every month and we have been known on occasion, to return home with the same 'gifts' that we actually brought to the meeting. 

We attempted to take our new companion, Teddy the cat, to the vets for a manicure and general check up but young Ted was not impressed by this idea. He was happy enough in the carrier until he was set free on the big black table where he promptly lost his rag and went wild. He was chased round the room by a nurse with a towel, all the while hissing and growling until we finally gave up. My attempt to provide some reassurance to him resulted in both scratches and bites and as my skin is now thin, there was lots of blood and bruising.

As the nurse tended to my punctures, the vet told us next time, Teddy will need  sedation. He was weighed in his carrier and we left feeling embarrassed and dejected. Luckily, he's so cute, he was quickly forgiven.

We had a weekend in Glasgow celebrating 20 years of Vegan Runners with lots of friends from all over the UK. We took part in the Queens Park parkrun on the Saturday which has 9 hills, and the 10k Great Scottish Run. We flew up from Southampton as it was much cheaper than the train and the hour flight is much quicker than the 5 hour train journey. We dont enjoy flying though, and after a delay of nearly 2 hours, and sitting in a ball of metal, holding each other's sweaty hands, and arriving after midnight, we both agreed that we wished we had opted for the choochoo and relaxed as the cities, fields and trees passed us at ground level, rather than at 8 miles high. 

The parkrun was very hilly so Alice opted to walk me to save her legs for the big race the following day however, it soon became apparent that the buggy had suffered a mishap in the hold on the plane. The front wheel was veering to the left so badly they steering was extremely hard. Combined with the hills, Alice soon became fed up and we needed help from our friends. After finally finishing, we inspected the frame and found the forks had been bent. Not knowing how to remedy this situation, it looked like Sunday's race was a non-starter however Alice messaged Martin at Delichon (the company who make the chairs) and was kind enough to videocall her and talk her through some possible solutions. Some brute force later and the Bakermobile was back on the road.

The weather stayed dry, we ate like kings, and I even managed a Gay Gordon at a Ceilidh on the Saturday night.

I had to be wrapped up very warm for the race on Sunday. I had on layer upon layer including a dry robe and blanket and I was still cold. 5 minutes before the start, I had to ask Alice to get me a coffee to warm me up!

We set off (up a huge hill!) and saw and thanked lots of runners in MND vests (mostly MND Scotland) and afterwards we went and had a chat with the My Name'5 Doddie Weir Foundation. We know most people who raise money for these MND charities have a deeply personal reason but we do like to tell them that my chair was part funded by the MNDA so they can see how their hard earned sponsorship helps people just like me. 

Alice pushed me in a great time of 1 hour and 2 minutes and we are now looking forward to the 10 mile Great South Run, which will be the furthest that she has pushed me.

We have been given the chance to be part of the pacing team which is great as it will raise the awareness of inclusivity at running events. The pacers are sponsored by Solgar, a company that makes vitamin and supplement tablets and they filmed us running around the common a couple of weeks ago wearing their t-shirts and talking about our story of how my running career has been curtailed, but how the running buggy has allowed me to continue taking part in events. They released the video this week as part of the promotion to the race, and we are proud to be able to highlight the opportunities available to people with a disability in sport.

I went back on Vectis Radio to update my MND journey and I listed all the things we have achieved over the last year.

I said that I have walked my daughter down the aisle, bought a house, been on a cruise, sold my Citroën 2CV, finished walking the Island's coastal path, curated a charity album, played my last gig with Bobby I Can Fly and released a 4 track ep, found Worzel Gummidge's field, and renewed our wedding vows. 

I then said that we've also travelled on the Waverley around the island, visited the Hovercraft museum at Lee On Solent, ridden the IOW Steam railway and been to football matches, the theatre and concerts including one at the Royal Albert Hall - phew! We have been busy!

I gave a shout out to all the friends and organisations that have raised money in my name since my diagnosis. It's a community radio station available worldwide online and set up and run by my friend Ian Mac more than 10 years ago. It's the third time I have been on now and I also got to choose the music during my hour slot. I went for Start by The Jam, Distant Sun by Crowded House, Free As A Bird by The Beatles, and Speak Like A Child by The Style Council. I really enjoyed it and he asked me again to start doing a weekly show for him. You know, I might actually do that sometime! 

I have quite a few DJ sets coming up, which is fine by me because there will come a time when I won't be able to handle the vinyl any more. I actually have 7 gigs booked in before the end of the year so DJ Tintin is going to be busy at the decks. I must mention my fellow DJ Michelle, who in collaboration with Jamie at Sounds And Grounds, a record shop and cafe in Cowes have raised an amazing £1000 for the MNDA. They have very kindly hosted a number of  fundraising events since my diagnosis and Michelle and I have shared the decks at each one of them. It's always a good night and has something fir everyone as Michelle plays 50's and 60's rock and roll and northern soul, and I play 70’s and 80's disco, funk, punk and electro.

Yesterday, we were back to parkrun but stayed local this time.

As usual, I was freezing cold despite many layers. We saw lots of friends during the morning and had a nice chat at the start with Mario, a visually impaired runner we see there quite regularly. Like us, he and his guide strive for inclusivity at events and races and he wished us well for the Great South Run next week. For the 3rd time, Alice got up all the hills and we were even recognised on the way round by stranger who had seen our Solgar video on Facebook. We felt like celebrities!

The rest of weekend was spent very much relaxing. We're so busy, Alice gets very little down time so she enjoyed our empty calendar and made the most of having nowhere to be and nothing to do. Next week of course, will be a different story I'm sure!