Hello and Welcome...
... to the 8th Dominic Morrogh Trust newsletter!
My Forty Days of Lent for Dominic
Tara
Sonja came back from school just before Lent began and asked me what we were going to do for it. It kicked off a very interesting discussion between the two of us on whether we should give up or take up something for Lent. After a long chat, we decided we both would take up something positive for the forty days. For Sonja it was a commitment to read a chapter of a book every day. For me, well, it was something that had given me much guilt recently: Dominic.
See, here is the thing: with time, life moves forward. For each one of us, life gets busy. We go through new challenges, joys and tragedies and make new choices, all of which slowly move us forward in life.
This year marks 6 years since Dominic’s accident, something that dramatically changed my life. At first, I spent most of my time just keeping busy and just simply waiting; but with waiting for him to change, I found myself getting stagnant, not being the person he loved. So I had to move forward and get plugged back into life. And with that, I started to live and feel again, to be present in my days. But this meant that, while I continued to push for Dominic and organise things for him, there were a lot of little things I used to do that I no longer did, like regularly update his iPod, do his daily exercise or give him a facial. Between trying to do a PhD, run a house, bring up a daughter and live my life, these little things fell between the cracks. And in all of this, Dominic continued to be silent. It is very easy to move forward when the other one is silent.
So, I decided that during Lent I would do something small every day for Dominic. It didn’t have to be big and it didn’t have to be specifically for him. It could be doing something for others close to him.
Over Lent I pushed ahead on plans that we had for Dominic, including the fMRI and his standing chair, and attempted to move forward with his fundraising strategy. I even did little things like his laundry and cutting his nails, and getting brave enough to cut his hair! But I also made time to reach out to people we both love, to meet them, have a chat and let them know that he would appreciate what we were all doing for him.
I failed on some days, though, when I did nothing. I thought about it and just didn’t manage to follow through. But throughout these forty days, I thought of him and remembered the vivacious, friendly and fun loving guy he was. And I thought of the man we still have, who is so vulnerable and needs us more than ever.
And so, Lent was a good opportunity for me to reflect and think about how we can move on into the future while still being there for Dominic. It allowed me the time to realise that it is ok for me to move forward and that I don’t need to do something for Dominic everyday, but also that I cannot afford to stop being his voice and fighting for him, because in his silence, he is easy to forget and leave behind.
We have come far in our fight for Dominic. And thanks to you all, we have finally gotten him into the best place in Dublin for his needs. He now has a permanent bed in the Royal Hospital in Donnybrook. It is a relief to know that he will continue to be looked after with some of the best care Ireland has to offer. However, with this relief, I must admit comes a bit of sadness, as it cements the fact he is not coming home.
As always thank you so much for your incredible support. We could not do this without you.
Dominic’s New Space
We are really excited to let you all know that Dominic has finally moved to his permanent space in Donnybrook! He has a nice room which is right near the garden. And to personalise his new room, we’re looking for ideas on artwork and wall hangings, anything to make a colourful, homely space for him and all of you, his visitors. So if you have any ideas, we would love to know. And more importantly though, you’re all invited to visit him in Rowan Ward, Room Four. Also, do say ‘Hi’ to Richard, his room-mate.
Your help and effort has made this move possible, so we’d like to take this opportunity to thank each and every one of you!
Sonja checking out Dominic's new digs, including a test of his bed comfiness!
A Message of Thanks to the Excellent Nursing Staff and Carers in Maples Ward on International Nurses Day
In honour of International Nurses Day, which takes place on the 12th of May each year, we’d like to extend our gratitude to the nurses and caregivers of the Maples Ward in Donnybrook who took care of Dominic in the last five years. And Sonja especially wants to thank them for looking after her Dad so well. Apart from the regular duties of ensuring he was not in pain and always checking-in on him, the kindness of the little extras for Dominic - from the sharing of jokes to the singing of songs - meant so very much. Dominic became more than just a patient to them. They checked-in on his family, made sure that they were well and even gave out to Tara about her messy clothes folding; although, they seemed to have given up on her and took to sorting it out themselves. So, to the staff on the Maples Ward, a big heartfelt thank you!
They will most definitely be missed by Dominic and the rest of us, with his recent move to the Rowan Ward; but, it is comforting to know they are just down the hall (and it seems some of them have moved to the new ward with Dominic).
To the nurses of the Maples ward:
"Love all of you, Sonja."
Update on fMRI
Padhraig 'Pak' O'Loughlin
fMRI is functional magnetic resonance imaging. It measures brain activity by detecting changes associated with blood flow. The logic goes that cerebral blood flow and neuronal activation are coupled, and so when an area of the brain is in use, blood flow to that area will increase and can be detected by the scanner. Then inferences can be made from that area which is active in terms of how active it is, and how long and what it is that is stimulating that activity. At least that is the theory.
For the past number of years we have looked into arranging an fMRI scan for Dominic. In the early stages, we considered getting him to Oxford where there is an internationally-recognised centre for these scans and more pertinently, their interpretation. There was potential to have a scan done in Dublin since the machines and relevant software were there; however, there was no suitable expert to perform specific stimulation during the scan and also to interpret the findings post-imaging.
Fundamentally, we knew that scanning Dominic would not be straight-forward even when you disregard the technology itself. Transporting him to the scanner safely and in a way that distressed him least was important. Positioning him in the scanner would be another challenge. And finally, but most importantly, ensuring that he lay as still as possible in order to ensure a clear, high resolution image would be tricky. This is difficult with Dom because when he is awake he tends to be consistently moving parts of his body, such as his head and neck. Sedation could be employed to ensure he moved less, but this would influence his responsivity to stimuli and the brain activity detected.
In March 2014, Tara emailed a researcher at Trinity College Dublin, who specialised in neurological studies. Mary was working in Beaumont Hospital at the time and a colleague of hers had mentioned that the researcher's focus was fMRI. This lead to an eventual meeting between Tara and the neuroscientist, and after some discussion, Dominic was considered as a potential subject in the research plans. Ultimately, the researcher met Dominic to get a sense of him and his condition.
There followed a prolonged phase of communication with the Ethics Board at Trinity about including Dominic in the research. Issues over safety and consent were raised. Eventually, it seemed that Dominic would be formally included in the study and so, finally, have an fMRI scan. Alas, when the final plan was drafted a decision was made to simply use a conventional MRI scan to assess him.
Fast-forward to March 2017, when one of the Rehabilitation Medicine Consultants became involved in the co-ordination of the proposed study. Tara met with the research team, including the consultant. I, too, had a long discussion with the consultant about fMRI and its utility for Dom. As it transpires there have been a few large studies of late, which have questioned the efficacy of fMRI and the best way to interpret the imaging. It seems the jury is still out as to how to best use this technology.
And for this reason, the decision was made not to do a study using fMR, as they felt that there is currently little concrete evidence to support this particular mode of image interpretation. This is of course, notwithstanding the challenges we are likely to encounter if and when we get Dominic to a scanner in the future.
Given that the fMRI was no longer to be used - it would just be a plain MRI instead, we made the decision not to include Dominic in the study as currently being implemented. We felt that subjecting him to a repeat plain MRI scan (he had one previously in St. Vincent's hospital) will not change his day-to-day management - is ‘treatment’ better instead of managment?. Of course, one could also argue that that may be the case with fMRI also, though the question that we wished to ask with fMRI was how much activity is going on in Dominic's brain, where specifically and what does it correlate to.
For now, we are none the wiser regarding fMRI; all we can do is keep abreast of developments within this specific imaging field and also be aware of other modalities to gather more information to get a sense of, and better care for, Dominic.
Valentine’s Day Fundraiser in Cork
On Saturday 18 February, friends celebrated Dominic by hosting a fundraiser in his honour. In previous years this event had been at Christmas time, so it was fun to have a Valentine’s Day twist. Blackrock Castle was decorated festively, creating a fun atmosphere. There was musical entertainment provided by the wonderful soprano Amanda Neri. Friends and family gathered for a great evening of good food, drinks and dancing. The raffle never disappoints, with a range of fantastic prizes that were generously donated by both companies and individuals alike. We would like to thank all of the organisers, Blackrock Castle Observatory, soprano Amanda Neri, and the prize donors for creating such a fun and successful event. If you weren’t able to join in this year, we encourage you to come along to the next one—you won’t be disappointed!
We look forward to some fun and exciting fundraisers happening this summer and will keep you updated through www.dominicmorroghtrust.ie.
For those interested in hosting a fundraising event, whether a social night or sporting event, please contact dominicmorroghtrust@gmail.com
Have a wonderful summer!
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