Hello and Welcome...
... to the 9th Dominic Morrogh Trust newsletter!
We hope this Christmas edition finds you and yours in happy festive spirits, and that you are enjoying the crazy lead into the holiday season!
Dominic is well and has settled into his new ward. His team are really attentive to his care and have developed a thorough understanding of his needs. His room is filling up with art pieces (quite a few from Sonja). We should also have his family and friends’ picture board up soon, so if any of you want to send a picture to put up, please do. Otherwise, more art is always welcome!
So... let’s get straight into business, we'd like to update you on a potential fMRI for Dominic including a review of Into The Grey Zone by Dominic's father Alec. In addition to this article, Niamh Carroll tells us what all your fundraising is doing for Dominic and asks for more fundraising ideas for the future. We also have a round-up of the amazing events done by you all for Dominic. Finally we have a new website for the trust thanks to Chris Harrop which will make it easier to find out what has been going on and how to donate.
A Functional MRI for Dominic
In the previous newsletter, we reported on the disappointing prospects of helping Dominic access a functional MRI (fMRI) scan. Since then, an article, courtesy of The Guardian Newspaper on a book called “Into the Grey Zone,” has really challenged us because it put into question what we actually knew about Dominic’s level of awareness and the potential (though not guaranteed) prospect of the fMRI helping us gauge his awareness.
This article lead to a number of conversations and some soul searching. As a result, quite a few of us went and read the book, a few others put their research skills into action and started tracking down centres who would be able to conduct fMRI scans. Slowly a plan of action began to emerge, below you can see a more in depth reading of the book in question. We hope to bring some news on that to you before the next newsletter.
We asked Alec, Dominic’s dad, and Shirley, one of Dominic’s therapists to give us a review of the book and their view of why something like the fMRI could benefit Dominic. We also have made some contact with centres here in Ireland on doing an fMRI for Dominic.
Thoughts from family and friends
Into the Gray Zone by Dr. Adrian Owen
Words by Alec Morrogh
In his recently published (September 2017) book "Into the Gray Zone", Neuroscientist Adrian Owen recounts the amazing investigations he has undertaken over many years into the half-world, or underworld, in which those who suffer from severe brain injury are confined to live. Owen is a scientist who has been advancing our understanding of the brain function of people in 'vegetative' or 'minimally conscious' state for many years.
This area of study has been greatly enhanced since the development of functional magnetic resonance imaging (fMRI), which has come to replace the older method of using PET scans. Owen and his fellow scientists have learnt to bend the new tool to their purposes. They have learnt to analyse reactions in the brain of patients to whom they address questions or to whom they show images. And by analysis of the responses, they have been able to establish tiny lines of communication with people who are classified as vegetative or minimally conscious. What an achievement !
This study is of huge interest to those of us who follow and support Dominic in his injured state. Dominic is classified as being minimally conscious. We ache to get an inkling as to what is going on in his mind and what, if anything, he is suffering.
Owen interweaves stories of cases from his early postgraduate research with more recent stories, and with the ups and downs of his own private life, in a manner that is affectingly and beautifully related He tells the varied and wholly unpredictable outcomes of these patients with clear-eyed lack of sentiment, although his feelings are never much below the surface of his narrative. He is a scientist with a beating heart.
For 12 years one accident victim remained in a vegetative state from which the doctors were certain there was no recovery until he proved them to be wrong. For 19 years another victim in a similar state was nursed by his wife, who shifted his position every few hours, before eventually he too woke up.
Owen does not avoid the philosophical conundrums arising from the fact that we are able to keep such people alive, albeit in such limbo, and whether this is fair to them or not. Among responses recorded by people who have returned from these states, some have told of their awareness of much that had been going on around them but said that they had not been in distress. What a blessing it would be to get such reassurance.
Compassion is the impetus for Owen's work. This, allied to his wonderful scientific skill and his power of lucid narration, makes this book very hard to put down.
A perspective on “Into the Gray zone” by Shirley Roe
I read into the Gray zone a few months ago. It was a delight to read and a much needed boost to how I thought of Dominic and his current state.
When you work with a non-responsive person for more than six years, twice a week, it is inevitable that your conversation can go flat and your enthusiasm can wear down a little. Although I have always believed Dominic understands what is going on around him, the progression that Dominic has shown is so incremental, it has at times left me questioning this belief.
It renewed my energy and interest in communicating with Dominic more regularly and trying to get him to communicate back to me.
I started to speak to Dominic about the book, and how it may be possible to communicate with him. The first time I did this, Dominic reacted by moving his upper body and his head vigorously, moving toward where I standing. He was focused and extremely vocal. At every visit I remind and assured him that I believe he can hear and understand me. I genuinely believe he is more present and vocal as a result of this.
In the book, one of the patients Kate thanked doctor Owen for giving her a voice. She wasn't referring to her new audible voice but to the "Yes" and "No" answers she was able to relay through the medium of an fMRI scanner. Without which she might still be stuck in the gray zone.
Using two sets of images, Owen and his team were able to deduce whether a patient was saying yes or no depending on two activities. If a patient wanted to answer "Yes" they were to imagine playing a game of tennis (can you imagine Dominic being asked that question?). This causes the premotor cortex to light up. If the answer was "No" they were to imagine walking around rooms in their house, lighting up the parahippocampal cortex.
By asking Kate a series of questions they knew the answer to the fMRI tests revealed that Kate was conscious, and as a result, friends and family were more active and more present. They came into the hospital and read to her, talked to her, knowing fully she could hear them and understand them. Knowing that people believed she was conscious motivated Kate to push herself out of her minimally conscious state. She now had a reason to push herself as hard as she could.
Regardless of how long it might take to get these tests for Dominic, we want to know for sure whether he can understand us, and if so, how much? The book highlights how giving the people who are in this “no-man's land” the gift of belief, can help cause a shift in their mental activity towards feeling like a person again.
Finally, one of the main things Owen recognised in the book is that the patients who made the best recovery were the ones who were given all the extra care and attention through therapies and contact from friends and family, not just the essential medical care which is given to them by the hospital staff.
Recent events and inspiration
Celebrating a 100th and fundraising for Dom
It is only as an adult that I have taken the time to get to know my grandfather, Ron, the realisation of which I am not proud. A teacher by profession, he is always ready with strong-minded, sound and compassionate guidance. The more I speak with him and the more he reveals about his past, the more I am astounded by his honesty, influence and morality. Ron celebrated his 100th birthday in April of this year and customarily, he threw a party for friends, family and past students. It was well attended; a chance to share the matchless anniversary message from Her Majesty The Queen.
His instructions were clear: no one was to bring a present as instead there would be a raffle. Below Ron writes humbly of the success of the raffle and subsequent support for the Trust.
“Doubtless Anna (Morrogh) has related something of my recent birthday celebrations by telephone. Originally I intended to donate £100 to D.M.T. but as I sat down to write a cheque a habit I practised for 13 years at Bradwell C.S. School to raise extra cash kicked in. I organised a ‘raffle’ by donating the Prizes and requesting the 150 family and friends, including 30 odd former pupils, to buy tickets of £1 each rather than give me a present. The result was £1 became £570 in half an hour. Most satisfactory, and very pleasing.”
Sadly Ron passed away in November but we thought that this story on his generous support of the Trust Fund needed to be shared.
Dublin City Marathon 2017
This year, we had two Dublin City marathon entrants raise funds for Dominic! We would like to extend our thanks to you and your great achievement. Well done!
Running the Dublin Marathon for Dominic seemed like the perfect way to contribute towards his charity and embody Dom’s love of fitness. My fondest memories of Dominic were our competitive tennis matches that we had in the back of Alec’s house, when our two competitive natures came out in full force! Hence, the Dublin Marathon with its mind over matter philosophy, is a race that not only ticks a box off my bucket list, but also, in my mind, perfectly sums up all the great qualities about Dom. I’d also just like to say a quick thank you to everyone who help sponsor me in running and to my Mam and Dad who made the effort to meet me at multiple stages throughout the race with plenty of water and energy bars!! However, I still wasn’t able to beat Dom’s sister Mary’s superhuman time of 3hr 04 minutes, so I’ll definitely have to come back next year!
On a beautiful crisp October day, my friend and I hit the streets of Dublin for our first ever marathon. It was a wonderful, exhilarating experience which gave us a huge sense of accomplishment. After much time and effort spent in preparation for this event, we finished in one piece and even enjoyed the day! It was not always smooth sailing, but the one thing that kept me going throughout the race was the knowledge of the overwhelming support I received from people who donated to the Dominic Morrogh Trust. This kept me motivated and determined to complete the challenge. I am proud of my efforts to raise these funds for his cause, especially with knowing how these funds contribute to giving him a better life. Thanks to everyone for their support! See you next time!
On the 22 October, friends of Tara’s, the Dublin 8 mothers, organised a Kids Halloween event in aid of the DMT. We had pumpkin carving, a fancy dress costume shop, spooky yoga, arts and craft workshops, biscuit decorating and chess games. The turnout was amazing! A huge thank you for all who helped organise the event and everyone who came along and a particular thank you to Amy van den Broek for her planning and organisation of this wonderful and successful event.
Annual Tea, Cake and Craft Event
Saturday 2nd December, was a lovely day filled with craft shopping and cakes and a catch up with friends, hosted by Tara and Caterina, and of course Sonja and Elena. They welcomed a wonderful turnout of friends and family looking for unique gifts and an opportunity to buy Christmas presents. The two girls did a diligent job as sales managers, while guests enjoyed browsing and eating some delicious goodies! There were delectable cakes and treats of all kinds, with a special mention for the amazing and popular chai cake of Tara’s. It was a wonderful way to kick off the Christmas season. A big thank you to everyone who came and donated. It was great to catch up and you helped create a warm and festive atmosphere. Thanks to Tara and Caty for organising this wonderful event once again. We’re already looking forward to next year!
St Catherine's Assembly Donations.
Sonja's primary school is also helping to raise funds for the trust which is a really nice indication of Sonja's integration into the school and our local community and how supportive they are towards Dominic. A third of all monies collected from their 3 assemblies to date (€275), money collected tomorrow and the collection during the Offertory Hymn in Christchurch goes to the trust. and the rest is going to two other charities close to the hearts of those at St Catherine's.
Have a Merry Christmas
Happy New Year!
Copyright © 2017 Dominic Morrogh Trust, All rights reserved.