30/10/2023 - 'Flooding, football and fun' by David

We've had some rain this week haven't we? In Southampton, we had lots, and on the Isle of Wight they had lots and lots and then a little bit more. 

When growing up on the island, I remember the coastal road between Gurnard and Cowes flooding every winter, but I don't ever remember closed roads and buses cancelled! This is the same route that we are walking on our MNDA charity walk in two weeks' time, so fingers crossed that we don't need wellies or snorkels!

On Tuesday night, I heard a rainstorm from my bed and it was so ferocious that I opened the curtains and the window, knelt on the bed, with my elbows on the windowsill, and just watched it all happen. The rain hitting the pavement under the lamplight, the sound of the rain hitting the car roofs, and the lovely smell of the air during a downpour. Some people call it petrichor, I call it beautiful. 

On Wednesday, I did a DJ set with my mate from school Darren. 'DJ Dazzer', was a proper professional disc spinner on the island in the 80's but hasn't performed on the wheels of steel since, and seeing an amateur like me getting up there and doing it over the last few years, has encouraged him to come out of retirement. We played some bangers, had a great time and entertained a packed bar.

On Saturday I attended the last of the three football reunions that have been organised for me since my diagnosis, and it was again, lovely to see so many friends that I haven't seen for years. Between 1986 and 2010, I played 500 games in the white of Osborne Coburg and there were players from all eras of the club, which is 40 years old this year. We discussed the promotions, the relegations, the great goals, the awful misses, and laughed at the funniest stories on and off the pitch over the years. Our old shirts were sold off for donations and many years later, some were a little tighter than others! Over £500 was raised for the Isle of Wight branch of the MNDA - thank you boys!

Everyone wanted to show me their sympathy and love, but no-one knew quite what to say. This is a common problem that I find, as there are really no words that anyone can say to convey how sorry they feel that one of their friends is dying. All I say is that you don't have to say anything, just hug me and hold me, I will feel everything that you want to say. 

I received lots of hugs and kisses and one of my very best friends told me that he loved me as we parted, and I could easily have cried. This is testimony to just how many great friends I have, but also to the positive change in society's attitudes between men. In our youth, when we were running around the pitch, fighting for each other, testosterone racing, we would never have used the word love to convey our feelings toward each other.

With regard to my condition, I have to report that unfortunately my legs are weakening further, and I need the help of Alice to get up the hills to and from work, and as such, have decided that from now on, I will work from home two days a week and have asked my boss to enquire as to whether I can retire on ill health. 

I'm obviously not going to get the long retirement that I had always planned to enjoy, so I really need to finish work and enjoy as much time as I can with Alice, my family, and friends while I am still mobile and able to do so. 

I seem to still be able to walk okay on flat terrain, and can still manage a slow 5k on a Saturday which is a bit weird as my legs during the week feel wobbly and I say to Alice that I feel like I may stumble at any time. I ran Medina parkrun on the island again and used my poles for stability, and my trusty friend Rob, for company and encouragement (and pushing me up the hills)!

I've been running all my life, posting long distances and good times, but am now getting slower, while he's just started running, and is entering 10k's and half marathons and I feel as though I am transferring my strength, energy and speed to him as he runs and raises money for me. His Just Giving page for the MNDA has so far raised over £3,000 and he still has four more events planned - I love you Rob x

My life at the moment, seems to consist of a very disappointing and despondent midweek, when I feel that this disease is happening way too fast. My arms and legs are weak and I'm so tired that I'm in bed by 7pm. Then, every weekend, I have something lovely planned, that makes me so happy, so grateful, and feel so loved. My limb weakness disappears and is replaced by hope and inner strength. 

I am sure that my many, many friends that read this blog, must think that my life since diagnosis is just sad and terrible all the time, but I really do want to tell you that although we both fear for the future, Alice and I are most of the time, having a happy and fun filled time.

Motor Neurone Disease is upsetting, horrible, frustrating, debilitating, and will ultimately kill me, but my life at the moment, is a happy one. It's exciting, and full of laughter, and long may it continue.

Speaking of the blog, since we started it in August, over 10,000 people in over 20 countries have now read 'MND Can Get In The Sea! That is absolutely mind blowing and we are overwhelmed. It's therapeutic for us to write, and hopefully it's entertaining but also real. Please send the link to anyone that you think it might bring comfort to or anyone who has a loved one going through something similar.

Thank you to all of you that love me, hug me, think of me, read the blog or donate x