Check out Emma Checketts’ story! She has ARCA1 (also known as SCAR8). It’s a rare form of Ataxia. Read more below.
Kia Ora my name is Emma Checketts, I live in Kaikoura New Zealand and I am 29 years old.
I feel like everything has happened super fast this year and I’m still processing everything! I had always been a clumsy child but never really thought anything of it. I could do everything that children can do but would fall over more frequently and drop things. It wasn’t until I moved up to Kaikoura for work (26years old) that things started to change slowly. I was extremely uncoordinated, had poor balance, would get so tired at the end of the day, my hands started having tremors and would make me drop things more frequently, I wasn’t able to carry a cup of liquid without it spilling, and my handwriting was deteriorating. I put a lot of the symptoms I was facing down to the fact I was rather overweight, but after losing 35kgs and having no improvement whatsoever I realised it had to be something more. In January of this year, my parents encouraged me to go to the doctor, which then turned into the hospital, and I was sent for an MRI straight away. They were able to tell me I had atrophy of my cerebellum. And that was about it for three months. What on earth did that mean? Three months later they brought me in for genetic testing, which came back negative. In July, I then had a spinal tap and further genetic testing which were both sent to Oxford. At that stage I was diagnosed with Spinocerebellar Ataxia – gene unknown. Between then and the middle of November, there was a lot of unknown, a lot of fear and worry. Last week, I was diagnosed with Autosomal Recessive Cerebellar Ataxia Type 1 – I am very much still coming to terms with what these mean but I do know that I have an extremely rare type of Ataxia and have presented with two genes.
Before my diagnosis I worked as a barista and made coffees, carried coffees, and waited tables – there is no way I would be able to do that now. Looking back on what I used to be able to do and what I can’t do anymore just makes me feel angry and frustrated so I try my hardest not to think about the past and focus on the present and what I can do to make everyday tasks easier. One thing that I find extremely difficult now are stairs, I cannot go up them or down them without holding a handrail if there is no handrail now I just avoid it if I can.
At this point in my life, I refuse to let it stop me from doing what I am doing. Currently, I am a teacher (of 5-year-olds) I absolutely love it and have had to make some very minor changes to how I teach in my class (mostly around writing). I attend a Boxfit class, Circuit class, and have a PT once a week. There are a lot of exercises I can’t do, but I just adapt e.g. running, jumping, step-ups, burpees, etc but one thing is so important and that is staying active and keeping strong – my neurologist told me if I don’t use it, I’ll lose it. However, the best form of exercise for me is aqua jogging at the pool. I love it so much and it feels so freeing. Unfortunately, I don’t have a pool where I live, but I have one in the city of Dunedin where I am from, so I spend my holidays down there with my family and try to get to the pool every day. It is so so amazing, it’s almost as though you forget you have ataxia for an hour or so!
As for ataxia awareness, I guess I am just coming to terms with my diagnosis myself and at the moment I have chosen not to tell people what’s going on apart from my family and my close friends. Within time, I will be ready but at the moment I’m just letting it sink in.
I must say though that having a diagnosis makes me feel like there is an actual reason for my symptoms and that I’m not just going crazy haha. At the moment my biggest piece of advice would be to make sure you have some support around you whether it be family or some close friends. Also, know that it is OK to feel angry to not be positive all the time because it does a lot to deal with, and just know that there are others with the same condition and are feeling the same as you and that you are not alone. Sending much love let’s get through this together. Emma XXX
Thanks for sharing your story, Emma Checketts!
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