So, today the riser recliner was taken away. As you know, it was no longer performing its function and Roch rarely chose to sit there. But a huge thank you to the MND Association – that chair helped out for eighteen months (see blog post Tuesday 8 November 2011) and became part of the furniture in our house (ha ha). It’s kind of sad to see it go, but it makes way for a new model, one which will hopefully be not only comfortable, but practical too. The new model hasn’t arrived yet but I will keep you posted.
As with all people living with MND, Roch is passing through the different stages of reduced function, more slowly than most, it must be said. There are so many innovations, so many gadgets and gizmos to help out. Mostly, as functions fade and strength diminishes, one of the professionals will have a suggestion to help. Inevitably, the time comes when each gadget fails to perform its original function and then we move on to another stage.*
There is a cupboard in our bedroom in which I store many useful things but lately I’ve noticed that items end up there which have outgrown their usefulness, at least for us. A bag of ‘foot ups’ and ankle straps – those were life savers and allowed Roch to continue walking by keeping his feet up and preventing his big toe from dragging on the ground or catching on the pavement as he lifted his foot. It was the foot ups that got Roch noticed when we were in Venice in July 2010. A friendly American, travelling on a vaporetto with us asked Roch why he wore them and that led to a conversation about MND and about the research the American was doing in Venice (involving saints and their dogs, which naturally included Saint Roch – coincidence or what?) and so we met Lerick and made a new friend. When we were in Venice, Roch was using two sticks – his sticks have been put away now, too, although one of them comes in very handy when the toaster sets the ultra-sensitive smoke alarm off in the kitchen. Sometime soon, I will blog about other trips after diagnosis in the days before the blog (New York October 2009 and Tenerife February 2010).
Roch went on from using sticks to using the rollator. Ah, the day the rollator arrived, I remember it well (see blog post Friday 26th March 2010 where I recorded Tom’s reaction when he saw it). Roch hated it at first, but it became his best friend. Now we all call it ‘rollie’. This morning, for the first time in ages, Roch was able to get out of bed by himself and, using old rollie, went to the bathroom and then the kitchen to make himself an espresso. A good start to the day.
In other good news, the OT reminded us that we had a handling belt somewhere and I went in search of it. Yes, it was in the famous cupboard! Yesterday Roch had lunch out with friends and the belt proved really useful when helping him to stand. Another great innovation.
The ‘sock putter-on-er’ is also in the cupboard now. Roch continued to dress himself for as long as he could. I remember remarking to someone only last year how I would use the time he spent putting on his socks and shoes to put on my make-up (it took longer and longer for him to put the socks on but my face never looked any better). Eventually it took him so long and he was so tired that he surrendered this task to others. But the ‘sock putter-on-er’ was another Godsend.
Sometimes I hardly notice when one stage is over and another begins. When I saw the bag of ‘foot ups’ in the cupboard I sat back on my heels to think. I couldn’t remember the last time he used them.
A new phase is beginning for us with the new car. We have our first test drive tomorrow in a WAV (wheelchair accessible vehicle) which is exciting. We are test driving the Fiat Doblo SpacePlus. I can’t wait to be able to drive off to new places together. The fly in the ointment is the new wheelchair. The other day (hot and sunny – remember what summer felt like?) Roch spent most of the day in the garden in the new chair, which was fully charged. He may have come in and out of the house a few times over the course of the day, but by tea time, the indicator on the chair was suddenly down to one light (from full) and the chair would not respond to commands. He called me outside and we were just working out how to get him in to the house when the lights flashed on and the controls responded again. Back inside, I plugged the chair into the battery charger and the charger showed empty although the arm control pad showed full. How can we trust this chair on the streets if we can’t even trust it to take him back into the house from the garden? I say we need a brand new chair as clearly this one is a mess. But we will use it for our test drive tomorrow, because we are sick of waiting and our lease is nearly up on the old car. Frankly, I need to be able to get him out and about, further afield than the High Street.
So, if anyone wants a sock putter-on-er or some foot ups, you know who to ask. Actually, you can probably get them from your OT, but if anyone wants ours, that’s fine too.
*Liam Dwyer has a really helpful website called www.disabled4disabled.co.uk which is worth a visit. Liam has spent a lot of time and money researching suitable equipment/facilities to suit his needs as a person living with MND. On his site you will find a useful A-Z listing positive experiences not just from Liam but from his readers too. You can add to the information on his site with useful tips and ideas.