May – July 2011 – Losing Hand Movement & The Search For Suitable Switches – Reaching A Plateau - A Week In MTH

From a general health perspective the next few months would certainly fit with my mantra – “no news is good news”. Carol’s condition had definitely reached a plateau and didn’t tend to change much from day to day. This wasn’t seen in any way as progress but MND is about making the most of what you have – and a plateau was something to make the most of.

Unfortunately, while Carol was in the main feeling ok the only thing left to go wrong did indeed start to go wrong. The thumb / forefinger on Carol’s left hand just stopped working – well, there was still some movement of sorts but it was no longer strong enough to press the buddy button (or any other button for that matter). That of course meant we’d have to try and find a different type of switch for Carol to continue using the laptop – and that was a vital piece of equipment for communication so we needed to sort it quick.

We tried a “blink switch” – this works by reading the blinking action of an eye to replicate what Carol had been doing with the push of a button. Great idea and a very simple piece of equipment but Carol’s blink reflex just wasn’t strong enough to make it work.

“SmartNav” was next – this has a dot sensor that can be placed on the forehead / on a pair of glasses / on a peaked cap and it is read by a camera attached to the laptop screen. The camera reads the movement of the dot as a mouse moving the cursor around the laptop screen – so as you move your head the cursor moves - very clever stuff. Unfortunately, although we got this working, Carol just didn’t have the full range of head movement required to cover the whole screen. The wheelchair headrest and support collar limited Carol’s movement too much, but we couldn’t remove them as they were supporting Carol’s head and neck.

“Buddy Button / Manfrotto Arm” – at present this is what we’ve ended up with. It’s far from perfect, and Carol really doesn’t like it, but it does the job. The buddy button that Carol used to use with her left hand is now attached to a flexible metal arm that holds the button by Carol’s head. Carol presses the button with head movement and this works in exactly the same way as it did under Carol’s hand.

The search continues and we have identified something called the “Tobii PCEye” which appears to be the answer to the prayers of everyone with mobility issues as severe as Carol’s. It all sounds very technical but the movement of the eye acts as the cursor moving around the screen – so no head movement is required. As I said it could be the solution for many people out there – but the price is definitely prohibitive – it’s almost £6000 to buy!! I contacted the UK distributors to see if we could loan or rent the equipment – one company will do a loan but only for 2 weeks and the cheapest rental quote I got was £367 per month – that’s far too expensive for us I’m afraid.

For the first time since November we managed to see a show – there’s a local taxi firm who we’ve now linked up with and he’s got us out and about at last. This show was actually on my list for London but we didn’t get to see it there. We went to Hall for Cornwall to see “Dreamboats and Petticoats” in July – an excellent show with brilliant music – Carol had a great night and when I see that smile and her head moving in the wheelchair I know she’s dancing!

Carol had been invited back into MTH for a weeks’ pampering and this was very different to the last time she’d been in. Carol was healthy this time so was more able to cope with being moved around and the whirlpool baths were definitely on the menu for the week. I think because Carol was healthy she didn’t actually enjoy being in there, as she’d have felt much better being at home. I know these weeks are also designed to give the family a break but it doesn’t work like that. I was going down to see Carol straight from work and not getting home until late – and then I couldn’t sleep as I’m so used to listening for Carol’s movements during the night now. In the end Carol couldn’t wait to get home and she has so far refused further offers to go back in.

During that stay I’d arranged to have a day off so I could go to London to see a show – those that know me have heard the story and I’m not going to repeat it here – but it was a decision I’d live to regret (and I’m sure Tom does too). I think Carol put the jinx on the trip as I was going without her – but I’ll never eat Chinese again!