02/06/2024 - 'A wobbly week' by David

I think I have come to terms with, and accepted my diagnosis, but every now and again I have a little wobble and this week Alice and I were discussing how my leg strength has really deteriorated in the last two weeks. We were not only discussing how much longer I will be walking, but we also talked about whether the wheelchair we have is adequate as it's only suitable when Alice is around, and as she is still working full time, I may need an electric wheelchair that I can control myself to maintain my independence.  

I contacted Gemma, our occupational therapist and she popped round to see me the very next day. She assessed the house for wheelchair accessibility and we discussed the ramps we will need to get in and out of the house, and she has referred me for an electric wheelchair.

I have been out every day for the last two weeks and it's probably no coincidence that my legs have suffered as a result. I might have to curtail my public appearances but I also want to do as much as I can while I can so I have a bit of a dilemma. 

It was while watching the amazing photography and beautiful wildlife on BBC's Spring Watch this week, that it all came home to me as I thought about everything that I will miss out on.

I want to see how well Derby County and England do in the football world.  I want to know how England women do. I want to know how England rugby and cricket get on. I want to watch lots more Olympics, Tour De France' and Wimbledons. I want to watch the seasons come and go and see my daughters grow, and most of all I want to spend the next twenty or thirty years with my lovely Alice. She will be a widow in her 40s and that is just not fair. 

Then I think about all the things in the last year that I have had to give up like playing football, cycling, running, driving, and in the next few weeks or months I will soon have to make the decision to stop walking and become wheelchairbound, if my legs haven't already made that decision for me. 

It's not just my legs either. Motor neurone disease will also take my hands and my voice in time, so how much longer will I be able to control the records to do my DJ sets, or prepare and cook food? How much longer will I be able to sing in the shower or hold Alice and my daughters tight and tell them that I love them?

With that in mind, I find myself thinking that everything I do may be the last time before I give in to my MND. I would like to climb the stairs at our favourite hotel, the Holmwood in Cowes and stay in one of their front facing rooms that look out over the Solent one last time. I am determined to hold on to Alice's arm for as long as possible as we walk, before I succombe to the wheelchair. 

Talking about showers, I have started to shower sitting down now. I have begun to feel a bit wobbly and I really don't want to fall, so it was the sensible thing to do. It's not too bad really. It's quite relaxing and a bit like like sitting on a park bench naked in the rain (come on, we've all done it), except it's lovely and warm. You will be pleased to know there is no photo to accompany this part of the blog!

I started another busy week by travelling over to the island on bank holiday Monday to see my mum and I used my rollator on the bus, the boat and the walk up to her flat in Cowes for the first time. My sister took us out for lunch one day, and mum and I walked (rolled) into town for lunch on the second day. I managed to relax my legs on Thursday which was very nice. 

On Friday Alice and I took the coach for a few days in the capital. 

We took the buggy to London for the first time and we opted not to venture down into the underground system but to use busses or walk to get around. Alice pushed me over Chelsea Bridge to meet my daughter Anna at Battersea Power Station.

She works in a coffee shop within the building, which is now retail and housing. It was lovely to see her as always.

I went for a quick toilet stop before we headed to the bus stop and found I couldn't do the buttons up on my trousers. Not wanting to make a big deal of it, I came out of the bathroom with my hands in my pockets to stop my trousers falling down and stayed like this before finding a quiet moment to ask Alice to button me up. 

Thanks to the generosity of Alice's sister Ellen and her boyfriend Shaun, we went to the Royal Albert Hall to watch Air.

Neither of us have ever been inside and Ellen knew it was on my bucket list to hear a gig inside this beautiful building and the auditorium was breathtaking. The acoustics were amazing and we all had a great night.

We stayed in Dulwich because we had pre planned a good parkrun for buggies and wheelchairs and Dulwich fitted the bill perfectly. Despite having pushed or carried the buggy most of the day before, Alice ran 28:32 - her first ever sub-30 with the buggy, even though her arms and shoulders were burning throughout. 

We then met Anna again at Crystal Palace to see the victorian dinosaurs. They are impressive, if not a bit weird. They were commissioned in 1852 to accompany the Crystal Palace after it's move from the Great Exhibition in Hyde Park. With only bones and little scientific knowledge at the time for reference, these sculptures are inaccurate by modern paleontology, but they are great fun none the less.

Anna pushed me and also held my arm as we walked around the park, before we boarded the overground train. Anna got off at her stop and we continued on home for a well earned rest for both us.

It's Sunday now so I'm enjoying doing absolutely nothing in the garden, soaking up the sun with an ice cream and a rum and coke, resting my legs and trying to regather a little strength in my limbs.  As we sat sunbathing, Alice put my DJ playlist on the speaker and 'Long Hot Summer' by The Style Council came on - what a time to be alive!