08/06/2025 - 'Why is my feeding tube called Phil?' by David

Apart from a quick visit to the island, we have spent the last few weeks at home in Southampton, which makes a change from our usual gallivanting around the country at weekends. Not that we've been idle though. We've run two local parkruns in Hampshire, I've DJ'd at my first outdoor event, we've had a visit to hospital, and I've had a couple of home visits.

My friend Mark, is one half of Southampton DJ duo Soul 45, and he was kind enough to give me a slot on their annual Boogie Down BBQ, a free, community event on the common which has become very popular. He told me it had to be dance music all the way, so I left the punk, pop, glam, and electro at home, and went for soul, funk, reggae and disco.

The fact that I went on first at midday to an audience of about 30, didn't stop me having a great time, and I had a bunch of 'groupies' from our running club cheering me on.

We stayed and had a picnic, while watching proper DJ's do some impressive things at the decks. 

Our brief stay on the island was to support the local MNDA group at a charity event Party In The Park, and it was lovely to meet the volunteers Doreen, Donna, Mark, Pam, Paula, and Ginny, who gave up their day to raise funds and awareness of Motor Neurone Disease.

We did rather well in the raffle, and one of the prizes that we won was a family ticket to the wildlife sanctuary that has been raising money to rescue two bears, who have been a side show attraction in an Azerbaijani restaurant almost all of their sad lives. We recently took part in a charity marathon relay for the bears, and I'm delighted to say that Benji and Balu arrived this week. The whole island has been transfixed on the live cameras as they timidly appeared from their travel cages into their beautiful new enclosure, where they can dig, climb, swim, and play out their days in the sunshine, like all bears should.

Our parkruns were on Southampton Common, where our friend Razza took the controls, while Alice did some pacing and at Bartley, where sport related fancy dress was encouraged, and I wore goggles, a dry robe, and a towel, as a swimmer.

Alice pushed me to another course record for the male wheelchair category, our 13th since we've had the Bakermobile!

I've had my Percutaneous Endoscopic Gastrostomy (PEG) feeding tube fitted this week. I don't need to use it yet, but we were told that it's advisable to get it done before my swallow deteriorates, as it surely will.

The procedure was performed under sedation and the combination of Midazolam and Fentanyl meant that I slept through the whole thing. I worked at the hospital for 17 years, and in the short time I was in, I saw four people that I used to work with, so hi Dean, Adam, Carlo, and Michelle! 

My tummy was tender and bruised for a few days, and it was painful turning in bed, but apart from that, it was fine. Alice has already flushed it through and cleaned it with saline, and we are getting used to our new friend Phil (because it will eventually 'fill' me up!) Peggy was just too obvious. 

I was advised not to shower for 3 days, or bath for a week until it had healed enough, but because the wetroom isn't yet complete, and I'm not strong enough to hold myself up in the shower, I sat on the toilet and Alice shaved me and then washed me down with a flannel and a sink of soap and water. Come on builders, get a move on! I'm looking forward to flopping around like a fish, while Alice chases me around the wetroom with the shower hose!

Jodie, who works with the Home Enteral Nutrition (HEN) team, came out to show me how to look after and flush through the tube, and I'm now on yet another medical team's list. One perk I've discovered of having the PEG is that we can push my medication down it. I'm on a research trial and they provide the medicine in liquid form so it can be swallowed or given via a tube but it tastes disgusting! I've been persevering with it for over a year now so it's been a relief to bypass my taste buds. It's the small things!

I've also had Peter from the wheelchair service round to assess the house for my electric wheelchair, which I will need soon. The builders have fitted a ramp to the front door, widened all the door frames downstairs, and fitted electric hands free access to the front and back doors, so he was quite happy to approve my request for an electric wheelchair. 

The building work is virtually finished -  how many times have we thought over the last 10 weeks? All we need now is the magic toilet being plugged in, a seat in the shower, and hand rails fitted all over. I'm waiting for a profile bed, which is like a hospital bed, that will enable me to sleep safely, and in comfort downstairs. The back door leads out to a new block paved area in the garden, where I can sit in the sunshine and drink coffee - I can't wait! 

Talking about coffee, I had a first world disaster this week. Our coffee machine broke, and I'm such a coffee snob, that I can't drink instant any more. On her return from work, and before she helped me upstairs for my bathroom routine, Alice took it apart and mended it, so that I could have my morning fix the following day. She's my action hero.

I think I have mentioned before that MND is a virtually pain free disease, and I'm very pleased that I don't have to endure the sickness of chemotherapy, the pain of COPD, or the loss of memory with dementia, of other terminal disorders. Even though I will be wheelchair bound soon, I will still be able to get on buses and trains, attend football games and concerts, and with my favourite race chair pusher, I will still take an active part in running events. 

Happily, the annoying cramps and spasms that affected my legs, arms and neck early on in my diagnosis, have on most occasions, become more like aches, which although annoying, I can deal with much better. They are worse at night while lying in bed, and despite being absolutely still, my leg muscles just ache as the neurons try unsuccessfully, to communicate with the involuntary muscles that are just not responding. 

Sometimes however, I can lie still and there is no ache, pain, or pulsing, and that is my sweet spot. It's almost as though my legs are not there, and I just lie there, enjoying the comfortably numb feeling, for as long as it lasts. 

Unfortunately, I've had another fall, although it was more like a stumble really. I was trying get myself to the front door while Alice was getting my wheelchair in the car, and I missed my grip on a wooden unit. Because my arm strength isn't what it used to be, I managed to stop the drop to the floor with my face against an ornament on the unit. It probably didn't look good, and didn't feel too good either, but I managed to stay upright, just. Another sore face for a while, but no permanent damage to my boyish good looks thankfully. 

I'll finish with latest thank you's. Firstly, thanks to Margaret, Gwen and Pam from my mother's book club, for their kind donations to our just giving page for the MNDA, which is currently at £11,837! 

Secondly, Caroline and Anne, two of our fellow vegan runners read the last blog, where I detailed our frustration and disappointment at the length of time it's taking for our house adaptions to complete, and they gave us a lovely card with a meal voucher for our favourite cafe, Thrive! I'm pleased to say that we were able to share a meal with them today. 

Finally, we had some very nice news this week, when Martin from Delichon, the company that manufactured our running wheelchair, said that we could keep the racing chair that we borrowed for the London Marathon, on a long loan. It's lighter, has larger wheels, and is more comfortable for me to sit in.

We are very grateful to Martin, those lovely ladies, and everyone else, for their kind words, deeds, and donations!