Wednesday, 28 December 2011

My present

My Christmas present, an aquarium, unfortunately Cheryl-despite-being-a-male, the most impressive looking, has already gone to the great fishbowl in the sky. Apologies for Daniel's shakey videoing

Saturday, 24 December 2011

Christmas Eve

The boys are still hedging their bets so a final trip to the fabulous Painshill Park grotto, although sadly I couldn't manage it this year

Wednesday, 14 December 2011

Disappointing drug trial results

I have just heard from Kings College Hospital about the Trophos trial they have been running and that I have participated for 2 years. The results have been released and it appears that the drug had no effect on disease progression.


Friday, 9 December 2011

Tipping Point

Its been a tough week. First I had this chest infection causing constant coughing. Coughing is bad on many levels; it's tiring, it constantly interrupts eyegaze use, it's messy with saliva and snot everywhere which stays everywhere until someone is available to wipe it up. Coughing causes me to slip down in my chair which results in my weight resting on the back of my lungs, causing me to cough even more. Finally it makes it difficult to sleep which has been the biggest problem.

I am used to coping with sleeping badly; 4 or 5 hours broken sleep is fairly normal but 3 nights in a row, watching each hour passing for 11 hours is awful. 9am arrives and you have that buzzing sensation as you crave sleep. I am sure everyone has experienced it for a night but after 3 consecutive nights of it I had been awake for 80 hours and was suffering from the shakes and waves of hot and cold flushes. I was so tired but I just couldn't fall asleep. Last night, after 3 nights trying various medication, I finally got a few hours sleep and feel a little more human today, although the cough has returned! I have felt very near my tipping point this week. To add to everything, my excellent regular carer has gone back home for 2 weeks and may not return. '

I have at least been able to enjoy my music again having treated myself to one of these Bowers & Wilkins Zeppelin Air speakers

It was nice to be able to spend money on myself which wasn't just more MND related equipment. These speakers, apart from sounding fantastic have Apple's Airplay technology which allows me to stream music from my Itunes wirelessly so I haven't got to put up with the tinny internal speakers. '