Will you help people like Tracey to make the most of every opportunity so that they can live the lives they choose?
Tracey, now 53, was diagnosed with Facioscapulaohumeral Muscular Dystrophy (FSHD) at the age of 16. This form of muscle wasting condition affects all muscles in the body and Tracey is no longer able to stand as her leg muscles are too weak. She has lost all the muscles around her shoulder blades meaning that lifting her arms is now very difficult. The condition also affects her facial muscles, including her mouth and eyes, which at times impacts on her vision. While maintaining as much independence as possible through her powered stand up chair, Tracey relies on the support of two carers who help her with daily tasks we may take for granted like brushing our teeth, showering and getting dressed.
Not one to let being in COVID-19 social distancing restriction slow her down, she has been working with our social worker Lindell about a few projects she’s not previously had the time to focus on. Tracey is driving the need for a ‘Changing Places’ toilet in her local area and is using this ‘down time’ to really put some planning into making this idea a reality and the ‘My Life, My Path’ project allows her time with our social worker to help her navigate the path. Additionally, in conjunction with her local radio station, Tracey is developing a disability focused podcast which will feature people and services from the community.
Tracey isn’t the only one of our clients who has been using this time to catch up on things that always tend to fall by the wayside in the ‘busy-ness’ of life. Our Social Worker, Lindell, has been busy taking calls from people on our charitably funded Helpline. “With the changes in routine of day to day due to COVID-19 I expected to be talking to clients about how to manage feelings of anxiety and helplessness and depression and loneliness”, said Lindell. “The potential risk of people with MD catching COVID-19 is really concerning, and the stress of the very real possibility of needing to identify new supports as service providers changed the way they were operating posed a huge challenge for many.”
As these challenges and concerns became reality for some, Lindell has also been helping an overwhelming number of clients who have called the Helpline as they find the time and space to assess their goals in life, really look at the supports they are receiving, and identify missing elements from their funding which will help them on a daily basis. Through the charitably funded Helpline, Lindell has been able to offer free of charge advice and assistance. “Our clients are really using this time in the most positive way possible”, she said. “So many people will be prepared to come out of social distancing restrictions with more appropriate plans and funding to help them live the lives they choose.”