I’m sure many of you who use PAs and carers are in similar circumstances to me right now, whereby all of a sudden, no matter how good your normal support structure is, you are back to relying on family and close friends for essential daily support.
Up until recently I had great freedom with really good carers or PAs allowing me to travel and go on adventures with my son Thomas (7) independently.
Last summer holidays while his mother (my wife Joanne) sadly couldn’t take any annual leave we took an overnight city break each week of the holidays visiting by train; Leicester, Newcastle, Manchester, Stonehenge and York. In April this year we had plans for the ultimate boys holiday to Star Wars land in Florida. As the world has been turned up-side down all thoughts of adventures like these are a far distant memory.
One positive thing I've found about living with limb girdle muscular dystrophy is just how amazing our bodies and brains are at adapting to challenging situations, be they a muscle that has wasted away or a global flu pandemic lockdown situation which has removed our daily assistance.
I remember interviewing my first full time PA (8 years ago) and saying, "please make sure you don’t do too much for me, I'll regress and stop doing daily activities if you take over too much, I want you to support me but don’t let me get lazy.”
Currently I have someone come in to get me up and dressed four days a week, one carer who I could call (20 mins away) and who would drop everything to rush over in an emergency (if I needed to transfer onto the toilet during the day). My wife helps me into bed at night and helps me get up on the days that she doesn’t work.
On weekdays it is down to Thomas and myself to run the household and we’ve been trying to help out as much as possible so that my wife isn’t stretched too thinly (working, cooking, cleaning, helping me, being a mother etc). There are a number of tasks which between Thomas and myself we’ve managed to perfect, they just needed a few simple adaptions and all of a sudden I have some of my independence back.
Making a cup of tea
This was something I wouldn’t have thought I could do myself up until a few weeks ago. As my wife doesn’t often drink hot drinks it would always be my luck that I’d ask for a cup of tea just after she’d sat down or was busy doing something. By moving a couple of mugs and the tea bags to a low down cupboard I can reach I was well on my way to achieving this independently. After some trial and error I found filling the kettle using my drinks bottle (an MDUK one) I could pour the kettle if it wasn’t too full by resting one hand under the kettle and using the other to pour. This would work if I parked my chair side-on to the counter and used the raiser to go up to the perfect spot. As long as the milk container isn’t too large I can pour the milk in a similar way without spilling it.
Emptying /loading the Dishwasher
I’ve always had really good trunk stability (or so the physio’s tell me) and leaning down and coming back up isn’t too bad as long as I’m not lifting anything too heavy. Emptying the dishwasher was always something I would do from time to time but since lockdown started I’ve become quite territorial over it and make sure I’m the first one to attend to the dishes after dinner. I zoom around the kitchen in my powerchair scrapping things into the bin and only need help with very large heavy pots. It takes ages when only carrying one plate at a time but there is a great feeling of satisfaction when it is completed. My first job when I was 15 years old was as a pot washer in a local pub. At the time I hadn’t started to show any signs of the muscle disease and I really enjoyed clearing up. Doing this again now has taken me right back to my childhood.
Cleaning and Tidying the house
I have several grabba hands dotted throughout the house. These are great for helping tidy up Thomas’s toys, and I also find I can load up the foot plate of the chair with cars and then transport them to a storage box. Tom will often be very hesitant to tidy up his toys (like all kids I’m sure) but when he sees me try to carefully pick things up with a grabba hand all of a sudden it becomes fun (hence keeping two in some rooms). Recently we invested in a hand held Dyson V7 hoover; it’s the most lightweight of the Dyson range and I find I can use it in my left hand whilst driving round the house cleaning as I go. Our old hoover was almost impossible for me to push on carpet and on the wooden floors I’d often get tangled in the hose and cables trailing behind. I’ve also found if I raise my chair up I can drive it along the kitchen next to the counter tops dragging my left arm (which has a jay cloth in it) cleaning the counters down.
Whilst lockdown has come with its challenges it has also given me back some independence on tasks I would normally rely on a family member / carer to do. The only thing I have found is that without their help it takes me up to ten times longer to do something myself. On the plus side by the time I made a cup of tea and transported it to my desk, it’s cooled down enough to drink!