17/09/2023 - 'Did they send Rob Burrow's voice by mistake?' by Alice

This week, David put an email around the research department to our work colleagues explaining that he has MND. Southampton is a large university hospital and our department has maybe 300 employees so not everyone was aware of his diagnosis. Over the last few days, he has had numerous loving hugs and emails of encouragement and I know he's grateful for everyone that reached out to him. We have been selling MNDA wristbands and badges from his desk and people have been very generous. Our Just Giving page has now surpassed £670 so thank you to this weeks donators Joyce Dyer, Lydia Scarlett, Ines Rodrigues, Danny Pratt, Di, Sue, Karen, Jenni McCorkell and Veena. 

David and I went to our first MND social meet up, where local volunteers provide refreshments and a chance to meet and talk to fellow sufferers and carers. We had discussed whether or not to go as it would be the first time we would actually meet someone with MND. We got there first and it was very hard to see that every other sufferer was already in a wheelchair. We are aware of the reality of David's future and once we had communicated with them, we were encouraged to know that they are still living a worthwhile life.

I say communicate because one lady was non verbal and another was losing the ability to talk and her husband was helping to relay her words. Another man was talking fine but was now being peg fed so must have lost his ability to swallow. All were at different stages of their journey and I was encouraged to hear that some were five years diagnosed and still smiling. We couldn't eat any of the biscuits unfortunately, but we did come away with a Radar key, which let's disabled people into locked public toilets. 

Unfortunately, David's strength in the last few weeks has deteriorated a little and he now runs parkrun holding my hand as a bit of security. He's still walking to work although the hills are not easy and it tires him out so his manager has now set him up for home working for any days he can't make it in to the office. He has also noticed the strength in his hands is fading. While clipping his finger nails, has to bring his chin down to the clippers to help his hand and while clipping his toe nails, he felt leg cramps. He has also noticed his once tidy handwriting is becoming messy and small tasks such as opening a bag of crisps, holding his phone and using a screwdriver are now becoming more challenging. As a right-handed person with a weakening right hand, this must be very scary for him.

We received David's voice banking back this week and I was the first to listen to it. My knee jerk reaction was that I didn't like it at all. I even wondered if they had sent me Rob Burrow's voice by mistake as David sounded very northern! Although David's distinctive gravel was there, it sounded slow, too low in pitch and more 'computerised' than I had been expecting. I immediately rang David and told him not to listen to it as I thought it would upset him.

I headed back to the website who remind you that it is a synthesised voice so not a perfect replica and they can adjust accents and tone etc to suit you. I listened to the sample a few more times and got used to it and then played it to David. We both agreed with some tweaking, it does actually sound like him and we are lucky to have access to this technology. Maybe it's just hard to believe we might actually need this one day.

The house hunting continued and we looked at a house in Shirley last week. We had been looking at houses in the area we already live but decided Shirley is also a good location. Fin can still get the bus to school and I can still walk to work.  David was particularly pleased with this suggestion as it's 10 minutes away from McDonald's and the Overdraft pub! The house was lovely but would need some adapting. We've put an offer in but not holding out much hope in getting it. We are starting to accept how many disappointments come with house buying!

Despite David's adversity to tattoos, I wanted to show my commitment to him and this journey by symbolising it forever in ink. I came up with the idea of marking our surname 'Baker' - a surname I have always loved. So what items do Bakers bake? Pretzels! So I had two heart shaped pretzels tattooed onto my arm - one for each of us. Ironic as a coeliac, I can't even eat them!