From the start of experiencing symptoms, to being diagnosed and adapting to life with ataxia can be challenging to say the least. The one aspect that is prominent during the ongoing process is support. It is there to guide and help us, when we don’t know what to do or where to turn next, and enables us to take a step forward.
Support can be presented in many forms, here are a few examples:
• Physical – physiotherapy helps to regain and manage your symptoms (unsteady gait, muscle weakness, etc.). Occupational therapy gives you the tools to lead life independently, and improve your quality of life.
• Emotional and mental health – talking and cognitive behavioural therapies can help you with coming to terms and accepting your diagnosis.
• Financial – small yet effective ways include reimbursement of transport fares (please double check this with the hospital/clinic that you attend), you may be eligible for a free bus pass too. Benefits are there to help and fund the extra costs of living with a disability.
My own experience
From my own experience, I would have appreciated more support, before my diagnosis, and the days that followed after. When my mobility deteriorated, and finding out I could no longer do certain things (from puzzles, to cleaning myself and everything in between), I struggled to accept this. I didn’t know who to ask for help nor did I know anyone who was experiencing the same as me, which as a young adult, was incredibly daunting.
Admittedly, I became very depressed, and even suicidal. I couldn’t see a light at the end of this tunnel. The symptoms I experienced (and still do today), are hearing difficulties, central vision loss, poor balance, poor fine-motor skills and limited mobility. Having just reached a point in my life where I felt happy and content, to then have everything taken away, was a tough pill to swallow.
When I received my ataxia diagnosis, that’s all I received. No follow-ups, no treatment plans, no suggestions of charities, nothing. I faced a lot of uncertainty with regards to my future.
Reaching out to various places for support was scary at first, but so worth it. I wouldn’t be where I am today, if it were not for the support I have received.
The support that has helped me
During a 9-month hospital and rehabilitation stay, and combined with two more neurological conditions, I received intensive physiotherapy and occupational therapy. I cannot praise these therapies enough for how much they have changed my life. At the beginning of my stay, I was fully dependent on a hoist, and unable to complete average daily tasks.
When I was discharged from rehab, I was able to eat independently, shower without being assisted and I could walk a few metres with my walking frame and the support of two people. Not only did they provide therapy, they also made me realise that I can still live my life, just with extra support.
Charities, like Ataxia UK have played a huge part in supporting me throughout the last two years, especially online support groups. I find it much easier to socialise online, due to my hearing and vision impairment. I don’t feel alone anymore now that I speak to others who are going through or have experienced similar situations. We learn from each other, find new ways to help us around the home, and discover new things in general.
I feel fortunate to be the Leader of Ataxia UK’s Facebook Support Group – Norfolk Branch, which is a small group I check in with fortnightly. It’s comforting to know there are others in my local area, who have ataxia, who can understand and empathise with each other, and just to be able to talk openly without any judgement.
Benefits are commonly seen quite negatively, however they are there to help us. I have experience with PIP (Personal Independence Payment) and UC (Universal Credit), these benefits combined help fund the extra costs, for example, transport fares and purchasing disability aids to help me be as independent as possible. It covers petrol, and it helps with general daily activities.
Help is there for a reason, not to make you feel guilty, but instead enables you to manage daily life.
All of these types of support have changed my life, for the better. And they can change yours too. Never be afraid to reach out and ask for support, even if it’s just once, it could improve your quality of life.