Hello! We are the Edgson family and we live in Brecon in the Brecon Beacons National Park.
Firstly, there’s my mum Kathy who is 68 and has cerebellar ataxia, scoliosis, arthritis and is a chronic sleepwalker. Mum enjoys gardening, painting, reading, country walks and fun adventures – and we do all of this while living with ataxia.
My name is Kizzy and I’m 38. I work for a big multi-channel retailer in the photography and videography department, and I’m also my mum’s carer. I love getting out in the forest after work and walking our two lovely dogs. I like being creative, so always have some DIY project in the house or garden on the go.
We have 3 pets: Ragsy our 5-year-old Lurcher, Jottie our 2-year-old Burnese crossed with a poodle (doodle) and His Madgester (think the BFG) our 15-year-old original grumpy cat!
Left to figure things out alone
Mum was first diagnosed with cerebellar ataxia about six years ago, sadly it was not the first time we had heard of it. Mum is one of seven siblings and some of them had previously been diagnosed. Based on what we already understood about ataxia and how other members of our family reacted, mum decided she did not want to pursue the genetic testing which was offered by the neurologist.
Since mum’s diagnosis, our lifestyle has changed dramatically. We have mostly been left to work things out by ourselves. In the early days, especially, we both found it very hard to come to terms with the diagnosis – there was a lot of apprehension and fear about the road ahead. Living in such a small area we couldn’t work out who to reach out to for help, so after a year of despair, we decided it was time to try and work things out for ourselves.
I am looking forward to sharing a lot of our experiences, good and bad, with you all in hope that it may help some other families going through a similar situation.
Cracking the code
Nowadays, we feel like we have finally cracked it and living with ataxia has become the norm, we know that not every day is good, but we find good in every day.
While I am in work, we regularly text each other to make sure mum is OK, and she lets me know if there’s anything she needs.
If she is going out on her mobility scooter or going to take a shower (which could potentially lead to falls or other accidents), she lets me know when she is starting something and when she is finished. This gives mum the independence to do her own thing but allows me to know where she is in case she needs help. It took us a while to get into a routine with this kind of communication but we both know it is better to be safe than sorry.
Ragsy and Jottie bring a great deal of joy to the house, Jottie and mum are inseparable, they often can be found watching TV together or sat out on the garden bench.
Join a Support Group
Throughout the years we have had many ups and downs, but we stick together and always hope for the best. Recently, we went to our first South Wales Ataxia Support Group meeting. This was another game changer for us, it was so important for mum to meet so many people in similar situations.
We recommend joining a Support Group if one is local to you, it’s a great means of supporting each other, as everyone is in a similar situation. Find the list of groups here.