Hello guys, My big sister Marley and I were bored in lockdown so we decided to write a song which we have called “lockdown blues” all about the COVID-19 Coronavirus crisis. It was a bit of fun and whilst I did it my tourettes did not bother me! Music keeps me well and happy. We hope you enjoy! 🙂 Xx
School is still out due to the coronavirus, but I still have to practice hard and have my virtual online music concerts to do. At the moment that means a solo from my home for the school’s YouTube page of lunchtime concerts! So here is ‘General life’ by Emmanuel Sejourne played on my marimba. My tourette’s tics generally don’t interrupt my performances, but can get in the way of my practice sometimes. I Hope you like it! Xx
I am sorry that you haven’t heard from me in a while! Life got very busy all at once, so I haven’t had a chance to catch you up on everything. As I am now at home in quarantine I decided that I would start making videos again. I am going to start doing one video per day for probably the next week, if I manage to edit them in time! Today there should hopefully be at least one, but maybe two videos coming out as it is taking me longer to edit than expected because I am a little bit rusty!
These videos are just going to be what I generally end up doing in week of online school in quarantine at home. At the minute I am also in the process of slowly coming off the medication I take for my Tourette’s syndrome, which is quite scary for me as I don’t know if it will make my tics increase again. Although I am very lucky that during this process I am at home because I am usually at boarding school because I am a musician. I explain the reason why I am coming off the medication in the video, so do check it out.
I hope you enjoy this video! see you soon,
UPDATE: My interview is now due to go out in Michael Ball’s special Children in Need special show on Sunday 17th Love 2019 between 11-1pm live from the Savoy.
As you may know I go to something called Tic Fest which is run by Tourette’s Action. Tic Fest is where families with children with Tourette’s Syndrome get to spend a weekend together whilst doing a range of activities that lots of the children with TS (Tourette’s Syndrome) wouldn’t necessarily have the confidence to try, for example archery, climbing and zip wiring. Tic Fest is currently funded by BBC Children In Need.
Last week I got the opportunity to visit BBC Radio Cornwall as that is the closest BBC radio station from my home because BBC Children In Need are doing a series of radio interviews with Children who have benefited from their support. They asked me if I would be interested in doing one of the radio interviews.
The first step was that my Dad and a lady from Children In Need sorted out the permission and paperwork and they sorted it all out via various emails going back and forth between them. Next I had a short phone call interview with someone from BBC Children in Need to see whether I could answer questions easily and to make sure that I was comfortable with talking about my story and my condition.
My Dad then helped to organise a date and time when I was free so I could do the actual interview at BBC Radio Cornwall.
When Iarrived at the radio station we received visitors lanyards and we were taken to this very small room which had two microphones and a lot of tech panels which had a lot of switches and buttons. It all looked rather complicated to me!
The actual Interview was with a lovely lady from BBC Radio 2 who was in London, so my Dad and I could only hear the lady through some headphones.
We aren’t exactly sure when the interview is going to be aired yet but the BBC say the plan is for it to go out on The Zoe Ball Breakfast Show on BBC Radio 2 between the dates of 4th and 8th November 2019 and then at some stage during the week of 11th to 15th November 2019 which is the BBC Children in Need appeal week.
If I get more specific information on when my interview will be going on air I will let you guys know.
Today things didn’t quite go to plan because right now I am still supposed to be on a National Children’s Orchestra (NCO) course, but sadly this time my tics just got in the way so I have had to come home.
Sometimes you just can’t work around things or your Tourette’s just gets in the way a bit too much! Usually I try not to let it stop me or I find something to help me cope better with the situation because otherwise your condition is controlling you, which is just totally wrong, so you have to ask yourselves what is the worst that could happen and then think what is the likelihood of that thing actually happening. I know from experience that this can be quite hard to do but you just have to give it a go and have a positive can do attitude!
Unfortunately today was just one of those days where everything just got a bit much and that is ok sometimes too because as one of my best friend’s mum said to me once “everyone has to crumple at some point!” Today I guess I crumpled and let my Tourette’s win 1-0 but that is ok because I gave it a go and I am sure that I will be winning again soon.
Wilamena 🙂 Xx
I have recently come back from something called TicFest which is when families with children who have Tourette’s syndrome get to come together for a weekend residential and meet each other whilst doing different activities. It gives everyone a great opportunity to chat with other people who are in similar situations.
This video explains what TicFest is and I managed to talk to some of the parents, siblings and children who have TS (Tourette’s syndrome) on camera which I thought was quite interesting as it lets you see other people’s perspectives of life with TS.
I hope that you guys like the video,
Wilamena Xx 🙂
Hello everyone, the other day I went with my parents to this place called the Eden Project for the day. I have been to the Eden Project many many times before, yet there is always something new to go and see! I was a bit nervous about going because it can sometimes be quite busy which would then trigger my tics but I am so glad that I went and saw that there was nothing to be nervous about. Before we left to go to Eden I decided that I wanted to make a video out of it so that is exactly what I did! In the video, you basically follow me around for the day and see what the Eden Project actually is!
I hope you enjoy the video! 🙂 Xx
Hi everyone, I have recently been involved with a research project that is being run at Nottingham University and supported by Tourette’s Action that is looking for lots of young people with Tourette’s Syndrome to take part.
I spent an hour talking with Camilla Babbage, via FaceTime, who is organising this research from Nottingham University. I found it really interesting and we spoke about lots of ways in which an app or web site could potentially be used to help to manage Tourettes.
I was rewarded with a £10 Amazon voucher too! It’s a really interesting project and they need lots more young people to take part and to input into the research, so if you read this and have Tourette’s Syndrome and are aged 9 to 17 then please look into the project.
It has been a lovely process as Camilla has explained everything so well, her video is very clear and she even made a special video just for me as an introduction to the process so that I would know what to expect when we met over FaceTime. The more we can all do to help researchers the better as the more tools we have to deal with our tics the better. Please consider taking part if you can.
You can find out more on the video below and the link:
Hello guys, I am really sorry that I haven’t done an update in a while, it is because my tics have had a big flare up again!
Overnight during the half term, I started having big full body tics again. I ended up having to miss the first couple of weeks of school after the half-term.
I have now been put back on my old medication, Clonidine, which is starting to help.
With Clonidine, you can only go onto it one little tablet at a time every week so it can get quite confusing as to what the dose is on that day! Clonidine helps to reduce some of my tics but not all. One of the side effects is that it makes me really tired sometimes.
I find that the tiredness kicks in towards the end of the day, but not always. But it is worth it because I was having really bad full body’s ticks that were so bad that I couldn’t really do much other than stay on my bed because that was the only place where I was safe and where I couldn’t get hurt. These tics would constantly carry on throughout the day or night unless I used my iPad. When I am on the iPad my tics always seem to lessen because it keeps my brain completely occupied and concentrated, which then means that I can do other things that are more constructive or fun at the same time.
I have now started to go back into school, but I didn’t go for a full day straight away and because I board at my school I have been staying somewhere with my mum that is near the school until I am ready to go back to boarding.
I started by doing all of my music lessons and commitments. Then a few days after that I started to go to a couple of academic lessons that I was the least anxious about going to.
I did that for about a week before I did my first Full day! Now I am pretty much back into my normal school routine other than boarding.
Tonight I am going to go up to my boarding house and decorate the Christmas tree with everyone, which is really exciting! I can’t wait! 😀 Xxx
This video is all about the good things and annoying things about being in a wheelchair.
I use a wheelchair because I get lots of foot tics. The foot tics can be really severe and painful and can cause damage to muscles or tendons in my feet or ankles.
For long distances, or anywhere which involves a lot of standing up, I use my wheelchair, but I only use it when I need to.
I hope you enjoy the video! 🙂 Xx