John Daly, living with MND.
A personal account of the onset of MND (ALS) of the voice and throat (Bulbar Region) by John Daly
“Silence is far from Golden”
“Early summer 2022 the sailing season begins and I crew on a friend’s yacht as we race around Dublin Bay. A vigorous affair followed by a nice pint and a lift home with my wife Deirdre who was a little surprised by my slight slurring of speech, after only one.
August and our two Canadian grandsons have spent two weeks with us and I am returning them to Toronto. My son’s sister-in-law, Sara, a Consultant Neurologist in Toronto, spots something worrying and suspicious about my speech.
Through the Autumn there are tests and meetings with Professor Orla Hardiman at Beaumont and a steady deterioration in the clarity of my speech. This all ends with the dreaded conclusion that I have MND of the throat region (Bulbar) though it is at an early stage.
I had no proper appreciation at that time of what life is like without my voice, but I did manage to record a now shaky version of my voice on a voice replacement app called SpeakUnique. I spent hours reading phrases supplied by the app. Then with some artificial improvements from the app, I now have a way of speaking phrases and even whole paragraphs that I type into the app. I can use it on my iPhone and iPad and I can amplify it a bit, for social settings, using a small Bluetooth speaker on my waist.
I apologise to those who have not had speech for all or much of their lives. Like many people, I had no proper appreciation of what that life involves. I wonder are we too old or is there a possibility of learning signing.
My life before MND took talking completely for granted:-
- 40 years as a science teacher,
- Ten years of retirement, visiting schools with a demonstration chemistry lecture,
- Workshops for teachers at the start of their careers,
- Writing and singing songs with guitar and keyboard,
- Visiting friends for coffee and chats.
My life was centred without thought, on talking:-
- The oh-so-important everyday dialogue with my love, Deirdre and close friends and relatives,
- Special Facetime moments and shared visits with our two terrific sons, their wives and extended families and of course our five very special grandchildren,
- Even the simplest interaction, as the car is serviced or purchases are requested.
Now I am suddenly isolated, in a world of my own, even with the enormous efforts of those all around me who love, care, and help. If a casual question is asked from across the room, I must write or type a response and show it to the other person or get SpeakUnique to say it. Conversations after all, are full of interjections and rapid changes of topic, and typing falls far behind, and my laborious remark becomes irrelevant by the time it is announced.
People are so kind and caring and make great efforts but you are no longer part of the swing of things. Sitting in the dining room of Balymascanlon Hotel yesterday, and listening to the great buzz of conversation, was very dispiriting. I have, especially with Deirdre’s help, and that of all our friends, made great efforts to remain upbeat almost all the time, but every now and then it gets too much to deal with. It all sinks in, what I have lost, and there are inevitable, short and private collapses of moral.
There are associated problems as well with this form of MND. Swallowing becomes increasingly difficult. Food choices reduce and eating times increase. Even drinks including water, need to be of a thicker consistency, to go down. It is not possible to eat and carry on conversation, as the mind must really concentrate on swallowing. This is another source of isolation.
Sometime in the next few months, I will need to have a direct line put in to my stomach for the delivery of food supplements. Otherwise I would become dehydrated and lose weight, neither of which is desirable.
Now for the “good news” relatively speaking. In saying this, I am very conscious that there are MND patients with other forms of the disease, who have much decreased mobility and dexterity, who are suffering much more than I am.
This being 2023, I can make maximum use of technology and social media.
- Email for oldies,
- WhatsApp until META becomes too unforgivable,
- Facetime & Zoom,
- SpeakUnique (funded by the IMNDA) on iPhone and iPad,
- Swipe and Speak (artificial voice) on any Apple device,
- LCD button-clear boards on which I can write with a plastic stylus.
I have the unbelievable professional, kind, caring support of the MND Clinic at Beaumont Hospital and the equally wonderful support of HSE nurses, speech therapists, dieticians, working in the community and of course the wonderful voluntary work of the Irish Motor Neuron Disease Association. My mind is unaffected, I can walk miles in the Wicklow hills, cycle (an electric 50 kM) until my battery runs out, swim, crew a racing yacht, and write poetry. Let my deterioration be as slow as possible.
So this account is written, not as a moan, but to show you what can happen in life and to ask you on behalf of the IMNDA to support their work for other people caught up in this particular situation. It is also written to acknowledge the enormous and almost overwhelming swell of goodness and kindness that has come my way, since the news spread.
Oh well why not end with a slight moan. Not being able to speak does not mean I am unable to think. Just we like we all raise our voices when talking to someone with poor English, some people automatically treat one’s situation as that of intellectual disability when it is not. I’m sure I have been guilty of this in the past myself, so I apologise for this and ask you also to please think twice when being nice."
