I’m just coming up to the 30th anniversary of my MS diagnosis and, while I won’t be having a cake with candles to celebrate (!), it makes me realise how much has changed since then.
I’m now in my 60s with progressive MS. At the time I was diagnosed, technology to really help with MS simply didn’t exist. Plus back then I was a bit of a technophobe and felt gadgets, gizmos and computers were just for the kids and my husband.
I panicked about losing my independence
As my legs finally gave up and stopped working, I at least knew that there would be a solution to my mobility problems – a wheelchair. But when my hands started to weaken – first one, then the other – I began to panic about losing my independence. It wasn’t about getting myself a meal or a drink, or even personal care (I’m lucky enough to have good carers for that). It was the idea of not being able to answer the phone, to write letters, or read, or even choose a birthday present for my husband on my own.
I will be eternally grateful for two bits of technological wizardry, which in the end gave me a large measure of control over these aspects of my life. The first is a Possum – a small screen and button on my arm, which allows me to wirelessly:
- Answer and make phone calls
- Switch on the television and radio, or watch a previously recorded programme (including all the usual features for volume, pausing, rewinding, etc)
- Turn the lights off and on
- Page my husband Richard (unfortunately for him!)
- Control the front door access and open and close the curtains (though I didn’t personally want or need these features, as Richard does that for me)
I can just about push the button that makes all this happen, but once my arm no longer moves at all, there is a head control too...
Using technology to stay connected
So what does this mean for me? For one thing, I don’t have to suffer TV programmes just because there isn’t anybody around to switch channels. More importantly though I can phone for help if I need it and, as the evening draws in, can switch the lights on. It also means my husband can go out safe in the knowledge I’m not marooned and helpless in the house.
That’s the practical stuff taken care of. But I don’t want to spend my life watching television or turning lights on and off! That’s where the second piece of wizardry comes in: a game changer the local hospital’s technical department showed me, which allows me to use my computer totally hands-free.
Freedom to create with my voice
This voice-controlled piece of software has changed my life. Already today it has meant I can write this blog! Later on I will answer and write some emails, adding in photographs of the grandchildren from our family WhatsApp group – my mobile phone is linked to the computer so I can take part in group chats with my friends. If I wanted, I could be on Facebook and Twitter, but I’m not particularly interested in those…
In the afternoon I will log onto the Internet and read the newspaper, and possibly do some shopping. Then I might catch up on the episode of the Archers I missed yesterday... After school finishes I will Skype our two grandchildren, and conclude my evening with the novel my book group has chosen this month.
I can do all this just with my voice. I’m writing this with my voice right now. And this freedom is a privilege denied to many people with MS.
Technology empowers us all
There are many ways a disability curtails people’s lives, but we have the technology today to do something about it. To belong in this society you need to be connected. And as I sit here in my living room I can interact with other people just as others do, and am the same as everybody else.
We wouldn't deny somebody a wheelchair because they couldn’t walk, so we should use this new technology to empower us all. Social independence is no less important than physical independence. Everyone deserves the same freedoms I have.