14/07/2024 - 'Who knew MND would keep me so busy?' by David

I've had a busy but enjoyable week and the rollator and I have been out every day!

On Monday Alice and I were up on the common being interviewed and filmed for promotion of the Great South Run. Alice is taking part as a pacer, encouraging runners to attain a certain time. She's been given the job of pacing 2:10 and she's also hoping to push me on the 10 mile course around the roads of Portsmouth and Southsea. The pacers are sponsored by Solgar vitamins and supplements and they are going to use us in their promotion of the product and of the race.  They had asked all the pacers if they had an interesting story to tell and we thought it would be a great opportunity to promote inclusion for assisted runners in races. We were a bit nervous but we faced the cameras, answered the questions and ran up and down a path while they filmed us. 

On Tuesday the rollator's wheels hardly stopped turning. My daughter Anna travelled down from London to see me but the rain spoilt our plans to walk through the parks of Southampton. I met her off the bus and we walked back to the house. We spent a lovely afternoon talking and laughing in the conservatory while the rain reverberated on the roof.


We walked back to the bus and I then met Alice and one of our running friends for a coffee. Kerry and her husband Richard, moved to Wales to run a gorgeous holiday cottage and it was lovely to catch up with her.


In the evening, the rollator was back out as we went to our monthly MND support group meeting. The speaker this month was from REMAP, a charity group of designers and engineers who make free,  bespoke, custom made equipment for disabled people, which was very interesting.  

On Wednesday we met up with some of our running friends and Jon and Ella took their buggy driving test!


They both realised how hard it is to push me, but I'm pleased to say that they both passed and now have their Bakermobile certificate and can push me in a future parkrun. 


On Thursday I really had to test my legs as I travelled over to the island by myself. I walked to the bus stop, then rested on the bus before walking from town down to the ferry terminal. Then after resting on the ferry, I had to walk up a short but steep hill up to my mum's flat. Not only do I have to rest my legs on the seat of my rollator after about 5 minutes, but I also get out of breath too these days. I have a respiratory appointment soon and I'm expecting my lung function to be further repressed. 

Mum and I had a lovely afternoon in the company of a couple of visitors. First up to the top floor was a mutual friend to both mum and I. Brian Munroe is a bit of a local celebrity, having been a country singer, a crooner and jazzateer with the legendary Goose Island Syncopaters for nearly 50 years on the island's musical scene. He's also an ex work colleague, fellow Subbuteo player, and friend of the family.  He's on my charity cassette for MND and I gave him a copy. We all sat and chatted for a couple of hours, and as all three of us have our health problems and it was great to reminisce on happier times.


My daughter, Rachel then popped in to see her dad and her Granny. She'd been to the chip shop so she was doubly welcome! She then drove me up to watch Max play cricket for The Full Tossers - what a great name! My brother, Rich and his son Isaac joined us for a drink as we cheered Max on as he took one wicket and knocked a couple of fours. 

On Friday I played a DJ set with my friend Michelle and lots of my mates turned up to support me and raise some more money.


Our JustGiving total is now £9,800 so I'm sure we will break the £10,000 mark soon. I had a bit of a dilemma as I needed to fit all my clothes and toiletries for my 2 night stay in my rollator so I couldn't carry many records over. I had a genius idea of asking mates to bring their records for me to play and Guy, Paul and Rich brought some bangers. I played The Jam, The Smiths, Aztec Camera, The Stray Cats, Thomas Dolby, The Clash, The Specials, The Human League, Prince Buster, and lots of reggae which got the crowd dancing. 


On Saturday Rachel took mum and I out to see dad's tree and she tidied the plot and planted some daisies from her garden.


We then drove to St Helens beach which was lovely for mum and I as this was one of our favourite beaches when I was young, and we sat looking out to sea, watching families making the same memories as we did all those years ago. 


I travelled back with my rollator and Alice met me off the bus and once home, I realised that the exertion of the week had caught up with me as I could hardly lift my fork to eat. I pulled myself upstairs for an early night. 

On Sunday we prepared lunch for a visit from mum, Rachel, my sister Lois, and her daughter Alex. Lois and Alex hadn't seen the house so I gave them a tour and after lunch, they all had a turn pushing me in the buggy. The sun shone so we were able to sit outside and it was a lovely way to top off another action packed week!


Unfortunately I have to report that I think my speech has started to be affected by this horrible disease. It's only slight so far, and hopefully it will progess as slowly as my legs and hands have, but sadly, it is pretty much an enevitability with MND. We have both noticed that my voice has been a little more croaky and weaker in the last two weeks. I have already banked my voice via the Speak Unique app and will be able to communicate through via my phone, and if I no longer have use of my hands, I can use the eye gaze computer system that Rob Burrow used. 

It was Rob Burrow's funeral this week and Alice and I re-watched the BBC documentary called 'There's Only One Rob Burrow' and were emotionally affected by it's humour and sadness. It's not an easy watch but I would really like anyone who is reading this, or is thinking about me, to watch it as it is the honest portrayal of living and dying with Motor Neurone Disease. 

You will be pleased to know that I share Rob's determination to embrace and enjoy my life, and I will keep smiling and fighting MND until it takes me. 

As Rob said, "In a world full of adversity, we must still dare to dream."

Comments

  1. AnonymousJuly 14, 2024 at 10:41 AM

    I have to admit you tell a story a little better than you sing!!! No doubt many people reading this will say they same,you a truly wonderfull couple of people in many ways. Keep taking what ever it is. Take care.
    ps xxx for Alice you can have a hug Dave.

    ReplyDelete
  2. AnonymousJuly 14, 2024 at 11:14 AM

    Thankyou for sharing your story. I find such comfort in your blogs. I used to see you at whiteley parkrun some time ago when you were in the earlier stages. My lovely mum fought for a long time with a cruel disease called multiple system atrophy. It's different but shares many symptoms. Unfortunately, she was too sad to enjoy her final years and so those memories just make me sad. But your story of life continuing alongside MND brings me alot of comfort and content. Life is always worth living even when it's trickier than we deserve. Keep going you are influencing and living simultaneously

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    Replies
    1. DavidJuly 14, 2024 at 11:28 AM

      Thank you for your kind words. These conditions certainly affect all those around us. I am enjoying life and making memories that my friends and family will remember after I've gone x

      Delete

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