The Neuro-GD Study: with Fragile X Coach Deno

Jo shares her story of Dennis' (known as Coach Deno) participation in the Neuro-GD Study run by Dr Andy Stanfield, Dr Andrew McKechanie, Dr Damien Wright and Aisling Kenny at the Patrick Wild Centre.


Background to the study Andy's team were looking for volunteers with Fragile X Syndrome (age 3 - 65 years) to join the study to help better understand how different neurodevelopmental conditions relate to each other. They hope that this study will make it easier to develop and test new therapies for Fragile X and other neurodevelopmental conditions in the future.


Dennis' mum, Jo, explains: "I nominated Dennis' name as we wanted to visit Scotland and meet the researchers at the Patrick Wild Centre with Aisling Kenny and her team; however due to the circumstances, the venue was changed to Sheffield."


(Please note that recruitment to this study has now closed, but if you are interested in other research opportunities, please visit the Research - Take Part section of our website where you can find other studies recruiting participants. )




On the 29th Jan 2022, Dennis participated in The Neuro-GD Study: Fragile X Syndrome The day when we had Storm Malik, all the public transport came to a standstill. Our taxi was diverted as we witnessed scaffolding and litter scattered around on the main road due to strong gale force. As we moved on the motorway our car was swaying from left to right, it was still dark as we headed toward the Holiday inn hotel near Rotherham –Sheffield. Prior to setting up preparations were made, reminding coach that, ”we are going for an interview as the Fragile x society want to talk about your coaching session".


He started having a tantrum, banging doors, swearing at 5am in the morning shouting at the top of his voice etc., as the anxiety was building up and it was nearer the time to depart. When he saw a the taxi, he was not pleased as it was not from the same firm with which he normally travels, so I had to make excuses that they did not have a driver nor the mini bus for long journey and train. Thank the lord that it was not booked in advance as it would have been difficult for us to travel to Leeds by taxi, then run to different platform to catch the train so early in the morning.


To divert his mind I informed him about the buffet breakfast that was served at the hotel, which he enjoyed and got himself calm. He did not say much but showed awareness of the basic things like the toilet, where the lift were situated and the waiting room for the taxi to takes us back it was his first time at this hotel.


We were taken to the test room after Coach Deno finished his breakfast, Aisling Kenny informed him what was going to take place in the room and what was on each table.


EEG:

For the EEG, we put a wire-net hat full of discs (electrodes) on Deno's head. These look at electrical activity in the brain. He had to watch some cartoons on a screen, while a series of beeps played in the background. He also looked at some flashing black and white squares.


Eye-tracking:

Coach Deno watched some shapes, pictures and animations while looking at a laptop screen. A device attached to the screen can track his eye movements.


Cognitive task:

Coach Deno completed a series of puzzles, where he had to match things, find objects in a picture and so on. A bit like schoolwork!


Height and Head measurement:

They took his height and measured his head circumference with a tape measure.




I did not take photographs as I did not want to distract Coach Deno so I requested Aisling Kenny’s colleague to take the photographs. Coach Deno at the end was becoming restless as he started to fidget due to 2 hours of continuous concentration, very focused on the task while he listened to the instructions.


He participated willingly and comments like, ”excellent, very good you have completed the test before time and you are very clever,” boosted Dennis' self-esteem. As soon as we finished the test, he headed downstairs to wait for the taxi. We were in shocked as the mini taxi ordered turned out to be a 16 seater minibus! Aisling Kenny very kindly ordered the taxi.




This was coach second test opportunity the first one was in 2006, at the holiday inn Birmingham at the Fragile X Seminar.


We were driven to the hotel in a taxi from Bradford however there was prior commitment of the taxi driver to his other customer as our plan was last minute. As the taxi had to go to collect his family member, I though since Coach Deno loves travelling on the train we will take the train, at Sheffield station what we witnessed was unexpected it was crowded, football fans were coming out of the station in large numbers chanting their team anthem.


There were police everywhere, the ticket counter advice that it was not advisable to purchase tickets as there were train delays due to the fault in the electric cable.


Secondly when coach showed his train pass the counter staff at the Sheffield train station quickly informed him that the train pass were only accepted at West Yorkshire AREA, I could sense coach Deno's temperature building up.

I quickly acted and mentioned a drink to divert his mind. He went looking for drink in M&S where the drinks were expensive (a small juice bottle for £2.99). However there was no time to argue so I signalled Coach Deno to go ahead and pay for the same.


We headed towards the bus station, it was deserted, not a soul in sight, very scary, deadly silence, no staff about , the only bit that was open was the National express coach counter and they directed us to the service which was operating replacement rail and train ticket passengers. Going around and waiting in the stormy weather was not acceptable to Coach Deno. Added to this was his knee pain which he'd been experiencing for 8 months, accidently he fell on the same knee on the BT line drain slab which was inappropriately placed, he stumbled and bruised himself when he finally got examined by the doctor the diagnoses was Fluid around his knee. I though we will have to cancel the Trip. I was chanting (Mother names for support) I did not want to cancel the taxi or the test last minute.


The next morning he declared a loud “they used my brain that is why I was paralysed and hurt myself.”! I need to go to my GP to check my brain, he was referring to the wire-net hat full of discs (electrodes which was placed on his head).





Thank you to Jo and Dennis for sharing your story of participating in a research project. If you might be interested in other research opportunities, please visit the Research - Take Part section of our website