Patientslikeme

Well, it's been a while...lots of things going on here. At the moment we have two guys replacing some of the windows - so lots of noise etc. Oscar is demented - and risks certain death as he noses around outside, large pieces of wood just missing him (bam!) as they crash to the ground outside. What's that they say? Curiosity killed...I think he may have decided that discretion is the greater part of valour and the back garden is safer.

I have just joined Roch in registering on a world wide site called Patientstlikeme. We have joined an online community of patients with MND and their caregivers. It's a bit like Facebook but the patients can compare their monkey symptoms, chart their progress (or should I say decline), list their medications and if and how these are helping. Other members can comment. It's really interesting - but there's a kind of morbid curiosity in comparisons - how long has he had it, did it start with the same symptoms as Roch, how far gone is he now? So many people and with a huge variety of the monkey. Roch showed me one comment posted by a caregiver, whose husband died yesterday. He had not wanted any artificial interventions to help him stay alive. It was pneumonia at the end.



We also had news of another death. We met Glynis in February, when she and Roch, among others, gave evidence at the House of Commons. (The Joint Party House of Commons Committee on a National Strategy for Palliative Care). Glynis gave evidence in her role as her husband's carer. Graham had MND. Glynis got in touch to let us know that he had passed away last Friday. We got on really well with Glynis, who impressed us with her bravery, her openness and her rather black sense of humour...and our thoughts are with her now.



This is turning out to be a long one - mostly because I haven't been blogging lately. In other news...I really must tell you that my wonderful friend Cecilia came to visit last week and gave me one of her full body massages. It just helped so much. It's not just massage. It's being the focus of attention for a whole hour, it's about the importance of the human touch - it's about feeling cared for. It's a wonderful thing. Roch, you should re-consider...



Recent developments: we are test driving a Citroen Berlingo (already dubbed 'the Bejingo' in this house - you have to watch 'Scrubs' to get that one) tomorrow. This will be a 'motability' car and is basically a brand new car which is leased to Roch and I will be a named driver. The car is paid for with part of his DLA money each week, and insurance and maintenance is covered. We get the car for three years, and at the end of that time, we replace it with a new car. It's much easier for Roch to get in and out of it and the boot is large enough to hold a wheelchair (or the dreaded rollator). It'll be quite handy for our long-legged Tom, too. Watching him as he folds and unfolds himself in and out of the Corsa, like some human praying mantis - well, it's getting ridiculous. We'll keep the Corsa tho' and will have joined those legions of two car households. Now we have to go about organising the disabled space in front of the house. Watcher! No parking in our disabled space or else! Actually, I don't think you can police this kind of thing...