14/04/2024 - 'The end of our fundraising and the start of our wheelchair running' by David

Alice and I have been totally amazed by the number of family and friends that have raised money for the Motor Neurone Disease Association in my name and we are so thankful to all of them.

In 2023, the year of my fall and diagnosis, my daughter Rachel, my niece Alex and my work colleague Anna, all ran 60 miles each in August. None of them are regular runners so this really was a challenge and I thank you ladies!

Our lovely MND home volunteer Susan, then walked 75 miles with her dog, Doug in October.

My friend Julie Binnington walked to all 136 churches on the Isle of Wight and the photos on her Facebook page looked amazing. 

My colleagues in the research department of the hospital organised a Great Office Bake Off with 4 weeks of different categories of bakes in aid of the MNDA, and the final week was in my office - yum!

My running friend and fellow football fan Glen Jones organised a Friendly Frolic in October, where 125 runners ran different loops out and back to the Bargeman's Rest pub in Newport.

Three of my friends that I have known since primary school also organised separate events for the MNDA.

Terry Barnes organised his IOW Scooter Alliance friends to do a charity ride out and I got to have my photo taken with nearly 30 scooterists, while Rob Procter and members of his Love Running Tuesday night group ran 100 kilometres in October. Rob included the Solent half marathon and the Great South Run in his quest. Kev and Debbie Bennett, and Cat Keeble also completed this mammoth task. I know both Rob and Kev from our schooldays together, and they only took up running in the last couple of years. They are so supportive of me, and I feel as though they are running the miles, that I now can't do, and I'm so proud of them.

My mother-in-law June, joined Alice, I and over 200 others in our walk from Cowes to Gurnard, along the seafront on the Isle of Wight in November and she set up a Just Giving page for her Southampton friends. 

My friend Becky Haydock organised a concert and the Isle of Wight folk music community came together to raise vital funds in December. 

Also in December, runner Cameron Kerr, ran the Night In The Museum Marathon, a 46 lap run around the Bovington Tank museum.

Into 2024, my daughter Anna, and my friends Andy Barding, Ruth Stockley and Danielle Marriot all walked 15,000 every day in January, which is no mean feet! Did you see what I did there? I'm a genius!

In February, the band I have played in for many years, Bobby I Can Fly, released a record, and Andy Barding and Tony Pendleton, the owners of the label that it was released on very kindly gave all the proceeds to the MNDA. 

After my diagnosis, the boys in the band agreed to play a couple of charity gigs for the MNDA, the first of which was an invitation only, intimate gig at Cowes Football Club. We then brought our 39 year career to a close, with a sell out gig at Strings in Newport.

On Good Friday, my DJ friend Michelle Salsbury (aka DJ Miss Chelle) and I played the second vinyl session she had organised with Sounds and Grounds in Cowes. Both were well attended and the charity box was well used.

 

Last Sunday, our running friend Claire Robinson ran the Southampton half marathon in the orange and blue of the MNDA. It was her first half - the furthest she has ever run, and she is donating the money raised to the Southampton branch of the MNDA. 

My friend of many years, Paul Armfield, is hosting a quiz at the Island Sailing Club in a couple of weeks, and two of my friends, Mave Ash and Julie Binnington, are swimming 6km in May for the MNDA. 

Lastly, Silas Gregory at Chalkpit Cassette Club has given me the opportunity to curate a compilation cassette and download of Isle of Wight and Southampton artists, and all proceeds will go to local branches of the MNDA. 20 bands and solo artists have donated songs, and it is going to be released soon.

So, as you can see, there are so many people thinking of Alice and I and we thank all those fundraising or donating towards caring for and supporting families just like us. 

Alice and I have organised our own fundraisers, where we sell MNDA wristbands and badges and I have played three DJ sets, two gigs, and our charity walk.

So far the total of all the fundraising raised in my name is over £10,000 and Alice and I have raised over £8,000 via our Justgiving page, so the cumulative total plus the fundraisers to come may reach £20,000 which would be incredible! Alice and I are humbled, grateful and totally overwhelmed by everyone's generosity. 

On Tuesday, we went to the monthly MND support group meeting, held at a local school, and we drank coffee, ate biscuits, and discussed how our month has been. It ended as usual, with a raffle to raise funds, and it was nice to see everyone.

Unfortunately, a fellow MND warrior, Terry wasn't there, as he has a chest infection, a common complaint in the latter stages of MND. Luckily I'm not there yet, but it's a sign of things to come. We did chat with Janet and Nigel though, a couple from Bitterne and they've invited us round to their home to see all their aids and gadgets including their through-floor lift!

We handed over £3860 which will go towards funding care, equipment and days out for sufferers and carers in the Southampton area.  The team who run the group were thrilled and we all posed for a photo with us holding up bundles of cash!

On Wednesday, we received a letter saying I am entitled to PIP, and the first payment was transferred into our account. Personal Independence Payment is a benefit from the government, paid to anyone with a long term physical or mental health disability or condition, to help with extra living costs. As I am registered with the DWP as having a terminal illness, I was fast tracked through the system and was automatically awarded the full amount without having to go through any arduous assessments which was a big relief. 

Thursday was an exciting day because my running buggy arrived! I haven't been able to run or walk parkruns for a month, since my legs have become weaker, but with Alice pushing me, the buggy will enable me to get around the course, and continue to participate in something that has been part of my life for the last 8 years. We always meet up with friends and go for breakfast afterwards, so it's a valuable social activity that is important to us. It was totally paid for by the MNDA, and Challenging MND charities, and some very kind friends, and we are very grateful to them. It is the same type of buggy that Kevin Sinfield pushed Rob Burrow around Leeds marathon in last year, and we plan to enter races with it too! We have already entered the Bristol 10k in May, so we, or more specifically Alice, needs to get practicing! We tried it out on a 2k run from our house on Thursday night and she said it's ok on the flat, but although I weigh less than 70kg, it's hard on the hills. She'll be as fit as a butcher's dog soon!

Unfortunately, on Friday I woke up feeling like a poor poorly pig, and I spent the whole day in bed. It wasn't the 100-day cough that a lot of people have had recently, but I had a sore throat, a headache, and nausea that lasted all day, which meant that I didn't eat or drink anything apart from water. I also skipped my trial medication as I just couldn't face it. Now I readily admit that I'm not very good at being ill, and I think because I eat a healthy diet and look after my body, that I shouldn't get ill, and luckily I haven't been poorly for ages so I shouldn't complain (but I will!) I was determined to go to parkrun to try the buggy out, and after all, all I had to do was plop myself in and sit there, so on Saturday, despite the warm temperature, I put my hat and gloves on. Pulling into the car park, we met our friend Claire and she presented me with a green and black striped vegan runners blanket she had been crocheting in secret and it was the perfect size to cover me up and keep me warm.

parkrun is an inclusive event that allow disabled participants to be pushed round and still receive a time so Alice contacted HQ to get me registered into a special category.

We completed our first buggy parkrun together at Southampton, and it was a total success. Alice ran the whole 5k apart from a little walk up the steepest hill, and we finished around 33 minutes, which is very good and better than she was expecting!

I got a personal best time for this year, as my running and walking has been getting slower since my diagnosis, and I came first in the wheelchair category, although I have to admit that I was the only competitor in that category!

My fellow vegan runners were all eager to have a go at pushing me, as we ran/walked to the cafe for breakfast, and I felt like royalty in my carriage. I had two coffees, then took myself to bed for the rest of the day.

I'm sure the Image of me in the running buggy is upsetting to see but please know that we actually had a fun time and I enjoyed being in it. I also don't actually need a wheelchair permanently just yet,  this is just a great temporary solution to getting around where it's too far for me to walk. In fact, when we crossed the finish line of parkrun, it must have looked odd for the other runners to see me hop out and walk over to get my barcode scanned!

On Sunday, we finished a really good week by attending the Vaisakhi celebrations at the local gudwara. The carnival procession included carrying and fanning the book, cleaning and removing litter from the street, and handing out free food. It's a peaceful religion, and I like the socialist ideals it teaches of unity, equality, honesty, selfless service, and the benefit and prosperity for all. Sikhs are vegetarian and lots of the food given out was vegan so we like to show our support and get a nice meal too.

Even though the weakness in my legs has stopped me from doing lots of things that I used to love doing like running, playing football and cycling, I want you to know that I really am still living a great life. I've retired, which gives me lots of time to relax at home and write, watch telly, play my records, and read, and if the sun ever decides to show itself, I will be outside, sunbathing with a drink. 

I'm still able to go to gigs, football games, and get on a bus to see my friends, or walk around the supermarket. I can still walk for about 15 minutes, with a stick or a rolater before I need to sit down, so I've not totally lost all strength yet. 

I think that I will contact my physio and request a wheelchair soon as I will definitely need one at some point, and I can practice pushing myself around in it in readiness, but my legs are still capable of getting me around slowly and I can still climb the stairs at home by holding on to a handrail. 

As my hands have become weaker, I do need help with little things like opening jars and bottles, and cooking, which is one of my passions, is becoming harder. I'm aware that Alice will have to do everything for me at some point though, so I want to do as much as I can while I can. 

Shaving and getting out of the bath are not easy these days, but as Elton John almost said, I'm still standing in the shower.

I haven't dropped anything or fallen over yet so although I need both hands to hold a pint of beer, I'm happy and content, and still ticking off things from my bucket list. I have this week booked two hotel stays and a cruise, and have made plans to visit three museums soon aswell.

So life is good in the new house of Baker.  We feel very content here and are putting pictures up, arranging the rooms as we want them, and are both looking forward to warmer weather and spending time in the garden, which gets all the afternoon sun. 

I'm hoping that because I was active and fit when my symptoms started, that this will give me a few extra years of survival. Obviously, no-one can tell me with any certainty when my MND started but if I think back, I first noticed cramps and fatigue in my legs in 2020. At that time, I was caring for covid victims in the hospital, and this was when we only had simple PPE. We were wearing gloves, a flimsy plastic apron, and the simple blue masks were all we were given, so it is probable that I caught covid from a patient. After a month of illness, I finally tested negative, and as I recovered from my covid, I realised that my running, which up to that point was very good for my age, was severely hampered. I was 54, and had run four marathons in as many years, and I was also cycling and playing football when I noticed that I couldn't run as far as I was used to. 

I, and many health professionals, quite feasibly thought I was suffering from long covid, as my symptoms suggested this, so it wasn't until Alice noticed fasciculations in my legs in 2022, and I noticed a foot drop in 2023, that we started to believe that it may be something neurological. 

After tests, I was diagnosed in July 2023 and the average survival rate for ALS MND is two to five years from onset of symptoms, so I and my consultant now think that the start of my symptoms were actually in 2020, after I contracted covid.

As a research nurse, I am aware that a major shock to the system like a stroke, a hip fracture, or a virus like covid, can produce or exacerbate a problem or disease lying latent in your DNA, which then becomes active, and symptoms become evident. And although my test for all the known genetic causes of MND came back negative, my consultant reminded me there are still genetic causes that have not yet been been discovered. 

So if, as I suspect, that I have had MND for four years, then current knowledge about the average survival rate says that I should die next year. I am in many MND groups on social media, and am regularly reading of people my age being diagnosed and unfortunately dying within a year or two, which is heartbreaking for all concerned.

Although my legs and arms are obviously affected, my swallowing and speech is currently not, so I'm really hoping that the fact that I was healthy, not overweight, and very fit and active at the time of my onset of symptoms, will give me a few extra years than the average survival rate. 

I love this life, and I would like to be around for a while longer for me, Alice, my daughters, and my family and friends for as long as I can x