Research Study into effects of Hydrotherapy Treatment in Duchenne Patients
Jack has enrolled into a research study at the Royal Preston Hospital evaluating hydrotherapy for health in boys and adolescents with Duchenne.
We suspect that the right type of exercise and hydrotherapy may be of benefit to boys and young men living with Duchenne Muscular Dystrophy, but we don’t have any evidence to support this and in truth, we are still learning a lot about of what this should look like in people living with Duchenne.
This study will look at whether there are any benefits to participants physical and mental wellbeing. The study is recruiting 44 boys and men and I am proud to say Jack is going to be one of them.
So this week, Jack went through a day of rigorous clinic assessments. He completed various respiratory tests including the North Star Ambulatory Assessment and the Performance Upper Limb Assessment.
A fancy machine also measured his body composition and he completed lots of questionnaires about how he finds activities in daily living and how he is feeling mentally.
Finally he was fitted with a smart device to monitor his movements over the next week and given a food diary to complete.
It was incredibly tiring for him but he was an absolute trooper on completing the assessments.
As Jack is getting older some tasks are getting harder for him to complete and the decline is hard of us to watch. But we can’t get down because he does all of this with a smile on his face and his sense of humour has everyone in stiches. He is so cheeky. I’m hoping to be able to film some of the assessments in the future to be able to share.
Jack’s physio Candiss knew exactly how to work with him and get the best out of him. We are so grateful to have such wonderful people wanting to help everyone living with Duchenne.
As hard as it is to see Jack’s decline, the appointment wasn’t a chore, it was actually a pleasure to watch him growing up and start to take charge of his own health. He is doing this study not just to help himself but to help everyone with Duchenne.
We hope that this study will enable exercise guidelines to be produced for families and if hydrotherapy is proved to be beneficial, we will be in a stronger position to develop campaigns which will help families get better access to both hydrotherapy and physiotherapy.
You can find out more about how you can take part in the study on our clinical trial finder.
