Parkinson

A Journey of Growth: Emaan’s Story

We hear from Emaan, Team Charco’s Science Communicator, on how her perspective has changed during her journey with us.

Joining the Team

Having no prior knowledge about the physiology of Parkinson’s Disease or its presentation, I sat beady-eyed in my first ever Charco team meeting, ready to learn – a sea of friendly faces welcoming me. I was fueled by Charco’s mission to put smiles back on people’s faces and, having seen my uncle struggling with this disease as well, all I wanted to do was to dedicate myself to helping Charco succeed. I’d seen my uncle fall numerous times, end up in hospital and undergo DBS treatment, only to see him end up having to use a walker – unable to walk, talk or participate in daily activities normally. I felt so helpless, but when I came across Charco, I genuinely believed this was an opportunity for me to do something for him and for the entire Parkinson’s community – to be a part of the organisation that could make a difference. My whole perception of Parkinson’s changed. I went from thinking there is nothing that can be done, to viewing it as a disease with the potential to be managed. Through extensive research and validated therapies, there was new hope to combat the symptoms people with Parkinson’s faced.

I was quite nervous starting off, as I felt I didn’t have enough experience or knowledge to fully contribute. However, my whole time at Charco has been an amazing learning experience, where I’ve absorbed so much information from my colleagues, people with Parkinson’s, as well as through research.

Role at Charco

One of my main roles is organising user testing for our mobile application, and through this I’ve met with so many amazing people who’ve shared their stories and feedback, and put their faith in Charco. Hearing how Charco has the potential to improve the lives of many living with Parkinson’s – and how in some cases that has already been achieved through beta testing – made me quite emotional, but also filled me with a sense of pride and appreciation. I felt so grateful to have the opportunity to contribute in any way!

Team Charco

The Team at Sports Parkinson’s!

As part of the user testing, Charco utilises the MDS-UPDRS assessment, a gold standard for quantifying Parkinson’s symptoms in clinical research. Therefore, I decided to complete the MDS-UPDRS qualification from the International Parkinson and Movement Disorder Society so that I could get more involved at testing and have more of an interaction with people with Parkinson’s. After obtaining the actual qualification, putting it into action proved to be a bit daunting. I was scared I was not going to be able to communicate properly or be able to connect with people; however I was completely taken by how friendly everyone was, and how eager they were to converse with me.

I still remember my first testing – walking up to the door, my hands all sweaty and shaky, scared that I was going to mess up by saying or doing the wrong thing. But all my nerves were put to ease when I was greeted by a big, welcoming smile – the conversation flowed so easily and right away I was able to put my nervousness to the side and focus on conducting the testing. First up was the UPDRS assessment, which involves a number of small motor tasks which are then rated from 0-4. We followed this up with a timed-up-and-go exercise which requires the tester to stand up from a chair, walk up to and around a cone, and back down to sit on the chair. Along with this were other small tasks such as a finger tapping and balance exercise. These tests can sometimes prove to be a bit difficult for those with advanced Parkinson’s, as it can easily tire them, so making sure we took breaks in between the exercises was crucial. But seeing how the CUE1 device made such a difference in just a few minutes was truly magical for me.

It has been an amazing experience getting to know the members of our community, and hear their powerful stories.

Challenges Faced

Undertaking my internship with Charco during the COVID pandemic was an additional challenge as, even though we all were quick to fall in love with Zoom, the connection that was made when meeting people in real life was not there. I struggled to open up and involve myself in conversations, take part in group discussions and felt a lack of motivation.

Team Charco Zoom Screenshot

A Zoom meeting with the team

However, during my first few days with Charco, I was quick to see how enthusiastic the whole team was (even virtually), and how inclusive and easy it was to talk to them. It was apparent that regardless of what the situation was, we all still had a common goal that we had to work towards, that we all were motivated towards our cause, and that we were going to work our hardest to help and improve the quality of life of people with Parkinson’s. When we were finally able to meet in person, that motivation only grew, and there was a sense of community that I was so happy and proud to be a part of. This feeling only grew when I was lucky enough to visit some of our testers’ homes, meet them and learn more of their story.

Moving Forward

The experiences I have had working with Charco so far have been truly invaluable and now I am looking forward to continuing my journey as Science Communicator. I have so much more to learn and I am eager to get more involved in the main operations of Charco, especially by taking more responsibility and interacting more with the community that helps us be who we are!

 

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