This month we are putting a spotlight on Tink, who lives with a muscle wasting condition.
Sticks, Scooters and Sparkle
Facing Progression
Dealing with condition progression brings challenges. My mobility started to decline six years ago. I’d had issues before that, but this was different. This was like turning around too quickly and your brain had forgotten to tell your legs to move. Initially, I was my usual stubborn self; I could manage. I did have some house aids installed, but eventually I stopped going out, it became too difficult and too exhausting. My outdoorsy hobbies drifted away, and I couldn’t even use my garden because of the stairs. It dawned on me that this was how life was going to be now. But then I realised I need to live my life! We deserve to have fun, joy and connection.
“Getting out of my own way was the answer. After immersing myself in self-help books, it turned out that my daughter telling me off at a supermarket and making me use a scooter, changed my future existence.”
I nervously, and then joyfully, zoomed around that supermarket, and after doing all of the shopping I still had energy left. It was amazing afterwards to be able to chat to someone and not run out of breath.
I have always been a private person, and I didn’t want to be seen using a scooter or a walking stick to go shopping. Why I felt that way is still a mystery. I think perhaps I didn’t want to admit that I needed help. Ridiculous I know, but these feelings were real.
“It turns out, you can tell people the truth and accept help and it doesn’t kill you… I’d recommend it. Things began to change.”
It doesn’t have to be dull. Thank heavens I hear you cry! I hated the mobility aids that were available, that was part of the problem. The ugly metal and grey walking sticks…not pretty. We are vibrant folk! I have tattoos and piercings; I don’t want metal and dull grey sticks, but the alternatives can be expensive. So, my first stick I painted and glittered and it was amazing! Then came the ultimate walking stick, ‘Champagne Fizz’ from Neo Walk. I LOVE IT!
My next purchase was a rollator (like a walking frame with a seat in the middle for when you get tired). The one I had been given from occupational therapy didn’t fit in most car boots; it was heavy, and folded badly. Because of this, I couldn’t use it on my own and it was more frustrating than useful. Looking for something better I found By Acre, the best ones so far; folding small they fit in any car boot and are super lightweight, but unfortunately, they are super expensive. Eventually I found the ‘Arebos Lightweight Rollator’ from The Range, similar to the By Acre at a fraction of the price. It has changed my life and given me back some freedom. Funny what a funky stick and a cool rollator can do.
“Using mobility aids has changed my life, from shopping, to holidays. But there are so many aids that have given me parts of myself back, especially my independence.”
I loved camping and had stopped going as it was impossible on my own. Now I’ve booked for June! Because suddenly, I realised I can pretty much make anything work with the right aids. I’ve bought an inflatable awning with an electric pump, so it inflates itself.
The beach is calling! The other unexpected aid is my beach chair. If I sat on the sand I’d be there until I washed out to sea, hence needing a beach chair. They are cheap, cheerful and great. I also use it for attending classes like gong baths, Qigong and I take it to festivals.
Next year I’m going backpacking through Europe, seven countries in eighteen days. I’ve booked several festivals for this year; I can still get my groove on with my trusty aids. There are loads of festivals that offer day tickets if a weekend is too much. The Access Card and Disabled Person’s Railcard offer fabulous discounts for events, festivals and shows. I saw Hamilton, the musical, last year and the discount and show were incredible.
Acknowledging what you need help with and finding and using the aids available is a great step in a fabulous direction. Whatever you can get your hands on, just try it. If you don’t like the standard free stuff, decorate it or buy something that fits your needs and your personality. I’m now looking for sock aids, after acknowledging I shouldn’t be sitting here typing with one cold foot. I’m also on the hunt for a bungalow as I’m apparently not allowed to jazz up my stairlift and I’d like an accessible garden again.
“Change can be hard, but adapting and accepting is the stuff of life. With some modifications and adaptations we can still have fun and enjoy life to the full.”
Financial support for your equipment or care needs
If you are deemed to have a care need, you will be eligible to receive grants and benefits which collectively are referred to as a care package. The individual grants and benefits are awarded according to an assessment of eligibility and needs undertaken by Social Services.
