LEARN 2025 – Alan Ogg’s blog for MND Scotland

In this blog for MND Scotland, Alan Ogg discusses his connection to motor neuron disease (MND). Alan’s wife, Liz, bravely battled the disease.  Alan talks about the impact MND has had, and why it was important for him to attend MND Scotland’s LEARN (Lived Experience and Researcher Network) event at Celtic Park, Glasgow. 

Can you tell us about yourself? 

My name is Alan Ogg. I’m now more or less retired, I have two daughters, four granddaughters, and I love travelling. For the reasons which follow, I have a very close connection to MND and, in a variety of ways, I try to remain involved with the excellent work of MND Scotland.  

What is your connection to motor neuron disease (MND)? 

My connection to MND is simple – in 2013, my wife was diagnosed with MND, and after a courageous three years, she passed away in November 2016 at the age of 68. 

Can you tell us more about the person with MND and your relationship? 

My wife’s name was Liz. By the time of her death, we had had the good fortune to be together as a couple for a total of 49 years. We enjoyed a very happy marriage and a positive relationship, and we supported each other through the usual range of issues faced by every couple. She was an exceptional mother and, until her final days, continued to be a sound support to our two daughters.  

Originally from Cambuslang, she studied English at Glasgow University and subsequently became an exceptional teacher in a number of schools, but notably in Bearsden Academy, where she was much loved by both students and staff. Her love of her subject, her general concern for other people and her dedication to her pupils were evident to all. 

She was a very modest person but quite ready to fight her corner when required. In the classroom, her use of humour and irony – some might say sarcasm! – was the stuff of legends. 

She was passionate about cooking and became known in the family as ‘Nigella 2.0’. Constantly trying out new recipes – some outlandish, but always delicious – she delivered a constantly changing menu for both family and friends.  

How did their illness progress? 

We first noticed things weren’t right almost a year before her final diagnosis in 2013.  

She began to experience problems with slurring speech, excessive saliva and increasing difficulties with managing food in her mouth.  

Firstly, we pursued a variety of avenues through dental medicine but were eventually referred to a neurology unit.  After several months of attendance at the unit, we were by now becoming more aware of the final possibilities.  

The day when the consultant finally gave us the diagnosis will remain forever etched in my mind. It appeared that Liz had bulbar palsy, which was affecting her mouth area and speech. This was confirmed to be a rarer early stage of MND.  

Suddenly, the news that survival was perhaps limited to 15 months brought it all into focus. We knew already but were reminded that the illness was progressive and unstoppable, and that there was no cure. I still remember our first meeting immediately after the diagnosis with the MND nurse, whose kindness I will never forget. And as we left her office, she said the prophetic words: “Good luck on your journey”. 

I find it difficult to describe the impact of that day on us and our family. It took a while for us to emerge from the tears and anxiety, but we did, and we were soon trying to face up to this news. 

Liz eventually defined the moment when we picked ourselves up in her phrase: “MND will not define me. I will define MND”.  And with these few simple words, we tried to move on and set off on our ‘journey’. 

For the next few months, Liz’s symptoms seemed to be on a plateau. Her food had to be processed. She now wished to eat alone to allow her to experiment with food handling.  

Her greatest frustration was not being able to speak coherently – this from a woman whose command of the English language had been first rate. She was one of the earliest adopters of voice apps, which allowed her to communicate, albeit in someone else’s voice.  This allowed her to continue to swear at me, using a variety of voices, including a Russian countess and the Queen Mother! She also encouraged about 40 friends and relatives to attend the Euan McDonald Centre to join the early stages of their voice-banking initiative.  

The months passed, with us both settling into our new life, now working closer together than ever. We managed a few holidays to the continent, albeit dealing with major issues surrounding food. But the kindness of strangers, particularly in the restaurant trade, was of huge assistance. 

Around this time, I encouraged Liz to write and publish a blog about living with MND. She took up the challenge and used her dark humour and sarcasm to craft several editions. Much to our surprise, the blogs were reaching MND / ALS sufferers across the world, and soon an international dialogue was happening. This was developed ultimately into a successful Facebook page, which encouraged significant numbers of sufferers and their families to form a caring and sharing community. Liz was indeed defining her life with MND. 

In basic medical terms, motor neuron disease is about the neurons in the brain ceasing to give an individual the necessary muscle control of basic bodily functions. In her case, this began in her mouth and next spread to her limbs. Over the coming months, Liz was experiencing greater problems in more general movement in her legs and increasingly required support at times.  

Tiredness became more common. Eventually, we had to resort to a wheelchair for general movement outside and a stairlift for indoor movement. Apparently, the stairlift was a necessity so that she could “continue to mess up the whole house, if she wanted to”! 

It became gradually clear that eating was now an almost impossible task, and eventually a feeding tube had to be inserted into her stomach. As an avid cook and enjoyer of good food, this was a major change. No more tasting food and enjoying the texture in her mouth. She was now limited to high vitamin liquids and water being offered through the tube. 

The final year of her life was spent in an increasingly limited world. Neither of us left the house, apart from hospital visits. Carers provided help every morning. We had to install a hospital bed for her and had to stop sleeping side by side.  

The worst part became clear as the final stage of the disease took its toll. The neurons to do with simply breathing were no longer up to the task, and Liz became increasingly dependent on a machine to stimulate her lung function. In all cases, the MND sufferer ultimately becomes a prisoner in his / her own body, dependent on the help of others and on equipment to simply exist. These were times that I will never forget. 

Extreme difficulties with breathing resulted in her finally being admitted to the hospital, where she lived her final three weeks in a semi-conscious state. Throughout her illness, and particularly at the end, despite her extreme physical limitations, her brain remained as sharp as ever. Indeed, imprisoned in your body.  

What impact did this have on you/your family? 

When you love someone and have committed to that person “in sickness and in health”, you simply move to a role of supporting that person in every possible way as they deal with the physical and mental health issues of their diagnosis. Our family, and indeed our circle of friends, provided an incredible level of support from the earliest days to the very end, for which we were very grateful.  

Were you aware of MND before Liz was diagnosed? 

We were not really aware of MND before Liz fell ill, but in the run-up to the diagnosis, we were soon investigating the possibilities online. Our research was certainly enhanced at this stage and later by the very helpful MND Scotland website. 

Can you tell us why it it important for events like LEARN to take place? 

When Liz was diagnosed, the message was simple: this disease is progressive and unstoppable. There is no cure. There is no hope. We knew little of the current research in the field, and opportunities to participate in a clinical trial were next to non-existent.  

There seemed to be a barrier between those suffering from the disease and researchers who possibly had the key to ultimately finding a way to slow down or even stop the condition. 

The LEARN events, which first took place in 2024, have the potential to bring these two sides together. It is a real opportunity to hear from the researchers themselves the direction of travel of their research, their successes and the potential effects of their work on the lives of sufferers.  

It’s an important opportunity for the researchers to meet with those living with or affected by MND and their families out with the clinical setting of a laboratory to better understand the reality of the illness and its stages as it affects real people.       

Is there anything else you would like to add? 

There is a growing trend for clinical trials in MND to become more accessible and more common. In the world of MND where nothing can currently stop or slow down the progression of this disease, the greater engagement of the patient with the world of research can only enhance this whole process.  

The Lived Experience and Researcher Network (LEARN), organised by Scotland’s MND charity, MND Scotland, brings together people affected by motor neuron disease (MND) and local MND researchers.  

For more information, please visit: https://mndscotland.org.uk/news/learn-2025/