28/10/2024 - 'Prohibition, 'ppointments and pumpkin pasties' by David

It's been a fortnight of appointments, testing my legs and having fun, and as usual, we have lots to report. 

Last week, Alice pushed me in the wheelchair to the bus stop and we headed off for my three-monthly respiratory appointment at the hospital and I'm happy to report that all the numbers from various tests came back positively and the doctor was very pleased with the results and slow progression from a respiratory perspective.

My cough flow average is now 480 L/min (usual adult range is 440-1200 L/min) so I'm still in the safe range, I've put on over a kilo in weight, my blood pressure, heart rate and oxygen levels were fine, and the sniff test and blood results were equally good. I'm down about 10% from last time on my diaphragm strength but they're not concerned and that they don't want to see me for six months now, which Alice and I were happy about.

I popped in to see my ex-work colleagues as usual, and I sat at my old desk in my old chair. It was the first time they had seen me in a wheelchair which was a bit upsetting for all of us I suppose, but it was nice to see them. 

I also had a home visit from a dietition called Felippe, and we discussed my diet, my appetite, and what to expect in the future with regard to my swallowing and eventually being liquid fed via a stomach tube called a peg. She reassured me that there is a vegan version of the feed available but hopefully that's still a long way off. She was very happy with everything at the moment, and left me with a sheet of recommendations for sources of nutrition, most of which I'm eating already. You can never have enough oranges, bananas and cashew nuts can you? With the odd cake or biscuit for medicinal purposes. 

The last appointment was from Jackie and her manager from the council regarding the means testing to determine who will fund the house refurbishments which I will need as the MND progresses. I will need a downstairs bedroom when I am no longer able to climb the stairs, and I will also need a wet room for when I can't wash myself. We've had so many appointments that we are now on first name terms with them, and although they are both very pleasant, it is really frustrating how long this process is taking. We first applied to the council in April and we are still waiting to hear if we qualify for financial support for a project that is essential to us, and is required through no fault of my own. 

On a more positive note, I have done two DJ sets recently. The first was part of the open decks night at the Overdraft in Shirley and on a terrible night of pouring rain, we were very pleased to see that 20 souls had braved the elements to hear a mix of musical genres from DJ's Tintin, Dazzer, Cockles, & Haddock. 

Alice and I went to a charity prohibition party at Northwood House in Cowes and we had a great time. We were invited by a school friend of mine Sarah, who organises this annual event, and I was asked to do a DJ set before the band and it was great to see people dancing to my tunes.

The main DJ for the night was a guy called Ronny, who I hadn't met before but vinyl collecting is a universal language and we hit it off straight away. He has been DJ'ing for decades and taught me a few tricks and we plan to do something together again sometime. 

There was a raffle of small prizes, and an auction of larger prizes, and the island's new MP Quigley was the host. He used to be an amateur comedian and he was hilarious, and big bids were offered for festival and ferry tickets, a holiday, and various products and experiences.  We even won a mug and miniature bottle of rum with winning ticket 384.

Everyone was dressed as flappers, dappers, slappers, and gangsters, in feathers, spats, and everything 1920's style, and we spent a lovely evening in the company of our friends Julie and Guy. Alice and I had some photos taken of us in various poses, we drunk as though alcohol was outlawed, and I managed two visits to the dancefloor although I told Alice that she couldn't let go of me. I'm aware that each dance we share may be our last so we enjoyed every moment. 

£3,189 was raised in total which is incredible and will be split between the Isle of Wight branch of the Motor Neurone Disease Association and Earl Mountbatten, the local Hospice. The MNDA have helped us immensely since my diagnosis and I may well need the hospice at a later date.

The big disappointment of the last few weeks was the late cancellation of the Great South Run due to the incoming storm Ashley. Alice and I had been chosen to be part of the pacing team and the 10 mile race would have been the furthest distance Alice had pushed me, so we were looking forward to taking part.

In the week preceeding the event we were featured in Yahoo News, MSN News, and local papers, the Portsmouth News and the Southern Echo with a photo and report

Unfortunately, southerly winds and rain forcasted for the course along the seafront between Portsmouth and Southsea was assessed as too dangerous for the run to go ahead and we were left disappointed. They are offering participants the chance to do it virtually to claim their t-shirts and medals but not sure what they did with the 25,000 finish line bananas?

There was some good news though - we've been offered the same pacing spot again next year, tornadoes permitting!

I had a bit of an adventure recently while trying to get my covid vaccination. The flu jab two weeks previously, was unproblematic. I got the bus to my doctors surgery and was home again within the hour, but the covid vaccination was unfortunately, a different story. 

I was booked in at 9am at the pharmacy within a row of shops locally, and despite it being further than the bus stop that I can just about walk to, I thought that with the ability to sit down on my rollator on the way that I should be okay. Unfortunately my legs felt very weak and I was struggling after only about two minutes. I also had to contend with an audience of teenagers on their way to catch the school bus, and younger children with their parents walking to the primary school on the way. I was really concerned about my legs giving way so I put the brake on and sat down to remove my sweater. I was getting hot, bothered and upset so I thought I would rest my legs and ring Alice but I then realised that a man sitting on a rollator outside a school with his camera out wasn't a good look, so I put my phone away and decided to shuffle around the corner and have a rest away from prying eyes. 

After another two stops, and speaking to Alice, telling her that I shouldn't be going out alone any more, I finally got to my appointment ten minutes late and after being jabbed, I treated myself to a coffee and breakfast at Starbucks to rest and build up the energy for the trip home. 

I think I only stopped twice on the return journey but was very glad to get through the door. I told Alice that I was home and went back to bed thoroughly depressed, knowing that this was the next phase of my deterioration. I'm well aware that falling is inevitable with the progression of MND but despite a number of stumbles, I haven't yet tumbled either around the house or while outside, and for that I'm very grateful. When it does happen I think I may succumb to the wheelchair full-time but we shall see. Until that time comes, I have decided it's not safe for me to be out of the house alone, unless getting into an Uber. 

You may remember that I previously said that any step that I take after walking Rachel down the aisle last April would be an amazing gift. I desperately want to stay mobile for as long as possible so I was really pleased to have had a lovely summer of walking around the house independently, and walking outside with Alice's hand or the rollator or stick. I have reassessed the timeline, and I'm now hoping to walk until Christmas, and if I am still walking by then, I will then set another goal. 

Speaking of the C word, I made my traditional Christmas cake with the rum that we won at the prohibition party and I'll be feeding it with the rest of the rum up until the big day. This year, I needed Alice to open jars and take lids off, as well as all of the mixing but despite her input, I'll still take all the credit!

I spent a night on the Island at the theatre listening to cycling reporter and commentator Matt Rendall, with an old school friend Carl. On my whirlwind visit, I managed to see my mother, brother, sister, daughter, nephew Eddie, and Daisy the dog.

I also enjoyed a trip to Woking Football Club to watch the mighty top of the table Forest Green Rovers with my friend's Nathann and Jay. We saw chances at both ends, two goals and a sending off, and we ate the biggest pumpkin pasties the world had ever seen!

Our parkrun on Saturday was at Bartley Park in Hampshire and our running club had decided to dress up in Halloween fancy dress. As well as the skeletons, witches, and vampires, we had Sirious Black, Bellatrix Lestrange, and a man with a hollowed out pumpkin on his head! Alice went as the Cheshire cat, and I went as Beetlejuice. The course wasn't Bakermobile friendly so I marshalled and Alice walked as she is recovering from pneumonia. In the company of other runners, we were in our element, but walking through the Waitrose car park and through the streets of Romsey, on our way to the coffee shop was a little weird, and we drew some strange looks!

That evening, I realised I didn't have the dexterity to remove my contact lenses so Alice had to do it for me. Good job she's not squeamish and she quickly whipped them out but I may have to stick to glasses full time now! Just another thing on the list that's become too hard but that one is no hardship compared to the others. 

I finished the week watching one of my favourite bands with one of my oldest, and best friends. Dee and I were in the same year at school and we met as 9 or 10 year olds at middle school and we played football and music together for many years and became close and very good friends. Over the years, we have looked after each other through love and life and it was very appropriate that it was Squeeze that we went to watch, as it was their coloured vinyl records that we used to play to each other in our bedrooms as we discussed football, music, and girls in the late 70’s.  Cool For Cats in pink vinyl, Another Nail In My Heart in clear, Slap And Tickle in red, and Up The Junction in lilac, and my favourite Pulling Muscles From The Shell, disappointingly in black, we had them all.

I have loved their music for decades now but somehow had not seen them live before so it was great to finally hear them belting out their songs, hit after hit. They played all those singles and many more, and it was lovely to spend some time chatting and singing along with such a dear friend. 

As you can see, I am still very busy enjoying everything life has to offer and Alice and I are grateful to our lovely families and very good friends for their continued love and support. 

Obviously, we both have bad days when it's all a bit too much, but luckily they are far outweighed by the good days, and I am very happy and I feel lucky to have been given the opportunity to prioritise and appreciate my beautiful life.

It's not just the big things that I sometimes get sad about like dying and missing those that I love. It's also the silly things that get me down like not being able to fold crisp packets into a triangle, or telling my "Mummy! Mummy!" jokes, or doing that thing where you jump in the air and click your heels together - I used to love doing that. Sometimes it's hard to come to terms with how I am now, but I just have to. I used to be so fit and now I struggle to pull up my trousers. 

I've passed the triangle and heel click thing, and the jokes onto my daughters though, so I know that generations of Bakers will be folding, jumping and entertaining for centuries to come. Just remember to leave the one about the dog until last Rachel and Anna x x