07/07/2024 - 'Permanently unfit for any work in any capacity' by David

The Motor Neurone Disease Association was formed in 1979, when I was 13. Little was then known about the life-shortening disease, and how it affects your arms and legs, and the way you talk, eat, and breathe.

The Association was born when three volunteer-led support groups in the UK joined forces – spurred into action by their own personal experiences with MND. They were united by a goal to ensure that anyone living with the disease could access the right care at the right time.

The MNDA became a registered charity, with Professor Stephen Hawking as Patients' Patron, and embarked on the first research project, into the risk factors associated with MND. Within the first decade, 40 local branches of the association opened, and the inaugural national MND Awareness Week was held, and the annual income exceeded £1 million. 

Each decade since has been marked with ground-breaking new developments in the provision of transformational care and support for people living with, or affected by MND.

In the 1990s, the SOD1 gene was discovered and identified as a cause of MND. The first dedicated MND Care and Research Centre opened at Maudesley/King’s College Hospital in London. And a new medication – Riluzole, was licenced for the treatment of MND.

The early 2000s brought more milestone achievements, with the launch of the national MND DNA Bank and Clinical Database. In 2006, an MNDA funded clinical trial evidenced the benefits of non-invasive ventilation (NIV) in MND. That same year, their income surpassed £11 million. 

2012 saw over 33,000 individuals and organisations sign the new MND Charter, prompting councils across the country to adopt it, helping improve the lives of people with MND.

The global Ice Bucket Challenge in 2014 raised over £7 million for the Association. This funded Project MinE, the international gene-hunting initiative, which led to the discovery of several new MND genes.

In November 2023, the UK Motor Neurone Disease Research Institute (UK MND RI) was launched, to accelerate the search for a cure. Many of its planned projects have their roots in MNDA funded research studies. 

I'm on a research trial through Southampton Hospital called MNDSmart trialling various drugs verses placebo and my drug is Amantadine. It was first used as a treatment for flu in the 1970’s and has recently been used against Parkinsons so they are wondering if it will have any affect on MND. Some of the adverse effects of this drug are drowsiness and confusion, but also it can also affect liver function and on my latest bloods, my consultant said my proteins and enzymes were slightly raised and would like to do some more tests. Depending on the results, I may have to think about coming off the trial although I may be on the placebo and the bloods come back fine. 

I started the week with a couple of relaxing days on the island. I stayed at mum's and we sat on the balcony watching the cruise ships leaving and returning to Southampton. On one day we walked down to our favourite Italian cafe, and on another, my sister Lois drove us to the seafront so that my mum with her stick, and me with my rollator, could walk along the esplanade between Cowes and Gurnard.  A while ago, I thought I'd feel embarrassed using a rollator but now I'm used to it, it gives me stability, security and the option of sitting down whenever I need to.  

While on our walk we stopped a couple and asked if they would take our photo and a lady asked me if I was David? to which I replied yes. She apparently has been reading my blog and recognised me - how lovely! So thank you and hello to Sarah Thomas!

Lois walked me back down to the ferry, and once back in Southampton, I hopped on the bus and shuffled the short distance home. My legs are very weak now and being able to sit down was such a relief.

The Grant Officer from the council came to assess the house for a wet room and downstairs bedroom for when I can no longer use the stairs. He said as my condition is terminal, my case would be prioritised which is good news. It's means tested but as we spent all our savings on the house, we haven't got much they can take. 

parkrun this week was local at Southampton and our friend Mark pushed me to allow Alice to run free!

We spotted a lady in an MND running top so we rolled over to speak to her. We recognised each other and we discovered that she works in ED at the hospital and she remembers me from when I used to respond to the emergency bleep. She told us that four members of her family have had MND, which is terrible. They must surely have the genetic form of the condition, which I was tested for. I thankfully tested negative so I haven't passed it on to Rachel or Anna. 

I'm very pleased to say that my curated charity album on cassette and download of Southampton and Isle Of Wight artists has sold out it's first run and they are now shipping the next batch. All the proceeds are going to our local branches of the Motor Neurone Disease Association, who have helped me so much so please do buy one.

This week I received a letter from the NHS pensions team, stating that 'Mr Baker should be considered permanently unfit for any work in any capacity.' While this blunt statement was hard to read, it is the truth, and it will allow me to take my pension immediately. 

We finished our week by supporting at the Lordshill 10k.  It was only across the road from our house and we wanted to see our friends taking part. I spend most of my weekdays alone in the house, which is not a problem as I'm quite content, but it was a nice opportunity to get out and catch up with friends in Starbucks afterwards where we had lots of laughs and made plans for some upcoming trips. I didn't have the strength in my legs to make the 5 minute walk there so Alice drove us and we made use of the blue badge, parking right outside. 

The Lordshill 10k is a race that both Alice and I have run before and only 5 years ago, I ran it in 47 minutes 44 seconds.

At last year's race, a friend of ours asked Alice why David wasn't running. It was just before my diagnosis, and Alice and I both knew there was something seriously wrong with me so Alice had to lie and say that I just didn't fancy it that year. 

Weeks later, I announced my bad news and in 10 days time it will be a year since the day we sat in the consultant's office hoping for good news, while knowing deep down that it wouldn't be. 

We move on together, living every day to it's fullest.