What a busy two weeks we’ve just had. It all started with a nice man called Alex
arriving from the CRC (Central Remedial Clinic) in Dublin. He brought me my new Eye-Gaze computer,
kindly given to me by the IMNDA (Irish Motor Neuron Disease Association). And what fun we had the first day we used it!
Alex got me to type some short sentences with my eyes and then to use the “speak” button. I decided to try out the first ones on Frank the Dog but as the computer has not had my own voice put on it yet, Frank was not very impressed and paid no attention to what I was saying via the computer. And Neil was laughing, so I decided to get my own back on him, and I typed “Sit, Neil” and pressed the speak button. Needless to say, Neil was not very amused…
After about an hour I had to stop as my eye muscles had never had such a long work-out. Since then I’ve spent time putting together more sentences and adding them to the databank – things like “Crystal Palace are great, Chelsea are second rate”, etc. It’s going to take quite a while to get used to this Eye-Gaze, but I will master it and will have the strongest eyes in Ireland. I wonder if there are any Olympic sports I could enter with my strong eye muscles?
The “new” belly button (peg-feed tube) I had been given was unfortunately too small/tight and was giving me a lot of pain so I went back to Beaumont Hospital in Dublin and a new one was put in. Very strange being wide awake while someone is putting wires in and out of a hole in your belly! I am happy to report that the new one is working fine and causing me no pain. What a relief.
It’s been quite hard to get used to living on a building site but it’s very, very exciting to watch the new bedroom and wet-room taking shape. Michael the builder and his dad Mick have been really, really good: having spotted the big pile of fence posts that we bought two years ago and never got round to doing anything with, thanks to Mick they are now up - and even painted! They are also going to build me an extra ramp not in the plans and a patio so I can enjoy the garden. And Mick’s bringing a regular supply of free-range eggs from his own hens at home! What great builders, and men, they all are.
The extension is now almost at roof height, the roof trusses and roof itself have been ordered, as have the windows. We will have to move the Sky dish very rapidly or Neil will be watching the world cup in the pub! I think Neil’s head is about to explode with all the instructions I am giving him about moving things about and the good thing is, I don’t have to do any of the cleaning or housework… Everything has a silver lining – even MND!
Another new toy just arrived this week for my “new” belly button: a feeding pump. Now while I’m asleep I get fed. It’s very strange waking up with a full tummy! This way I get all the vitamins, minerals and proteins that I need, so I can supplement it with whatever I like, like Ben & Jerry’s Caramel Chew Chew ice cream.
We both thought that the new disability adaptation-extension was going to be really big – until when you think about all my equipment, and then it seems to shrink. It’s going to be so much fun telling everyone what to do when it comes to painting it, etc, and not having to lift a finger!
Neil is turning into a proper little housewife – it’s a pleasure for me to watch, but I can’t get him to wear a pinny…
More soon, thanks for reading, and don’t forget my Facebook group page where you can keep up to date with lots of photos and stuff.
Ciao!
Eimear X
Alex got me to type some short sentences with my eyes and then to use the “speak” button. I decided to try out the first ones on Frank the Dog but as the computer has not had my own voice put on it yet, Frank was not very impressed and paid no attention to what I was saying via the computer. And Neil was laughing, so I decided to get my own back on him, and I typed “Sit, Neil” and pressed the speak button. Needless to say, Neil was not very amused…
After about an hour I had to stop as my eye muscles had never had such a long work-out. Since then I’ve spent time putting together more sentences and adding them to the databank – things like “Crystal Palace are great, Chelsea are second rate”, etc. It’s going to take quite a while to get used to this Eye-Gaze, but I will master it and will have the strongest eyes in Ireland. I wonder if there are any Olympic sports I could enter with my strong eye muscles?
The “new” belly button (peg-feed tube) I had been given was unfortunately too small/tight and was giving me a lot of pain so I went back to Beaumont Hospital in Dublin and a new one was put in. Very strange being wide awake while someone is putting wires in and out of a hole in your belly! I am happy to report that the new one is working fine and causing me no pain. What a relief.
It’s been quite hard to get used to living on a building site but it’s very, very exciting to watch the new bedroom and wet-room taking shape. Michael the builder and his dad Mick have been really, really good: having spotted the big pile of fence posts that we bought two years ago and never got round to doing anything with, thanks to Mick they are now up - and even painted! They are also going to build me an extra ramp not in the plans and a patio so I can enjoy the garden. And Mick’s bringing a regular supply of free-range eggs from his own hens at home! What great builders, and men, they all are.
The extension is now almost at roof height, the roof trusses and roof itself have been ordered, as have the windows. We will have to move the Sky dish very rapidly or Neil will be watching the world cup in the pub! I think Neil’s head is about to explode with all the instructions I am giving him about moving things about and the good thing is, I don’t have to do any of the cleaning or housework… Everything has a silver lining – even MND!
Another new toy just arrived this week for my “new” belly button: a feeding pump. Now while I’m asleep I get fed. It’s very strange waking up with a full tummy! This way I get all the vitamins, minerals and proteins that I need, so I can supplement it with whatever I like, like Ben & Jerry’s Caramel Chew Chew ice cream.
We both thought that the new disability adaptation-extension was going to be really big – until when you think about all my equipment, and then it seems to shrink. It’s going to be so much fun telling everyone what to do when it comes to painting it, etc, and not having to lift a finger!
Neil is turning into a proper little housewife – it’s a pleasure for me to watch, but I can’t get him to wear a pinny…
More soon, thanks for reading, and don’t forget my Facebook group page where you can keep up to date with lots of photos and stuff.
Ciao!
Eimear X
