July – August 2010 – Reaching A Plateau – More Shows / Trips – Possum System – Hand Splints

July started with a trip up to see the family and a party for Carol’s cousin in Blackpool. We’d been invited to Sarah’s 21^st a few months ago and I wasn’t sure about it but Carol had really wanted to go. In the end I was glad we went as it was great to see all the family, and the first time we’d been together with them since Annie’s funeral. Carol had progressed since they last saw her but that’s the beauty of families – it doesn’t matter – everybody was really pleased to see us and Carol was able to catch up with all the gossip.

We also had a change of venue for our stay as our very good friends Hils and David were kind enough to offer us a place to rest our heads at their new house in Appleton Thorn. We spent a couple of days with them and it was really good to catch up, and be shown the local sights(?!) - and I know Hils will always thank me for demonstrating my gardening skills and helping her clear that dreaded ivy off the wall of the house! No trip back home would be complete without a diversion around Birmingham and down into London – yes it was “JB” Sunday matinee again – still keeping count out there?

One major point to note about this two month period was a distinct slowdown in Carol’s progression. I’ve read a lot of different reports and stories about MND’s patterns and this was where we really started to see Carol’s progress change. After 5 months or so of rapid deterioration Carol had one of those plateaus where very little changed. Yes there were slight differences, in feeding / swallowing and hand strength, but nothing of any real note during this time. We suddenly felt good about how the next few months would look and actually booked a holiday for mid October – a cruise around the Canaries (a cruise - that’s another one of those things we could now cross off “the list”).

I do feel we did make one real mistake here though, and it was because Carol was feeling so good we delayed going to see the specialist about the PEG.  An appointment for Carol to be assessed did come through but we chose to wait until after the holiday. I would regret that decision later and it’s still probably the only thing I’d change when I look back on how we’ve dealt with all of Carol’s challenges – I wish we’d had the PEG fitted earlier.

Carol went back to Marie Therese House for an assessment with the physiotherapy team but there wasn’t anything new to discuss around the condition. However, we did talk to a different specialist that day and she suggested Carol should get a Possum system installed in the house. Possum is a system that allows you to control numerous devices from a central point using a remote control.

When the engineer came round he advised us what the system could do and recommended which household items Carol should programme in to control. There’s so much more that can be done with this system than we actually had set-up, but Carol’s limitations really set the boundaries. Carol was given a touch screen remote unit that could now control TV, DVD, Sky, lights in the lounge and even the front door (with an intercom and remote door release). The engineer even added the house telephone into the system, and there were pre-programmed statements added – things like “hello”, “how are you” and so on. Carol never used that part of the system as I don’t think she wanted to risk getting into telephone conversations with anyone outside of the family. I must admit that Possum is an excellent system and it would work really well for Carol for a number of months to come.

The other appointment Carol had in August was with the specialist “splint” team at Treliske. They had been asked to look at Carol’s hands and fingers to see if they could create a bespoke splint for comfort. Carol had a number of the Velcro wrist guard type supports but wanted something that would specifically hold her fingers in place (they were starting to curl under into the palm of her hand). They did a great job and Carol left with a strange moulded resin / plastic kind of fingerless glove. The physio said it was something similar to a splint he’d made before, but he changed the design a little on Carol’s, and watching him create it was very interesting. Carol would get the other hand done a couple of weeks later.  

We finished August with a flurry – as another treat for our 20^th wedding anniversary that was coming up on 31^st (to go with the cruise). We booked 4 days in London over the bank holiday weekend and tickets for 4 shows. We also changed the hotel this time, as I knew getting around on the tube with the powered wheelchair wouldn’t be easy. We moved to the Holiday Inn near Regents Park – just a 5 minute walk from Oxford Street – and that would serve us well for getting around (and Carol really enjoyed the scrambled egg for breakfast!).

We saw shows on each of the 4 days and had a great time wandering around London - or even just sitting and watching crappy TV together in the hotel room – it was a really good weekend and Carol was on great form. I was even refusing to get too stressed about all those people walking into the wheelchair because Carol was suddenly invisible again.

The weekend started with “Jersey Boys” Friday night (no surprise there) and then on Saturday we saw “Priscilla - Queen of the Desert”. I’m not 100% certain but I may have been the only straight man in the whole theatre – but it’s a fun show and worth a visit just for the sights in the audience! You can probably guess what Sunday matinee was – yes it’s “JB” again – I’m making no excuses I did warn you that we love this show. The only slight disappointment came on Monday night, we went to see “Sister Act” again. Now I only booked these tickets because the date was during the scheduled run where Whoopi Goldberg was playing the Mother Superior character. Whoopi Goldberg – Sister Act – London Palladium - you’ve just got to go and see that haven’t you? Unfortunately over that weekend Whoopi’s mother had passed away back in the States so when we got to the theatre we were advised that she wouldn’t be appearing. As I said a slight disappointment but we still enjoyed the show and had a good night.

So it was a quiet 20^th wedding anniversary after that busy weekend and we were looking forward to our cruise with Carol in good spirits.