Tuesday, 5 November 2013

intensive care

I am currently in intensive care after a mucous plug in my lungs nearly killed me. I have had the traditional emergency tracheostomy and am hooked up to a ventilator on cpap being suctioned every half an hour. If I hadn't been in hospital anyway I would have died. Lucky break I guess.

Tuesday, 30 July 2013

Botox after a week

So it's been a week on the botox and the saliva is certainly better from a quantitative standpoint if not from a qualitative one. By which I mean there is definitely less saliva but I still need the bib, still choke at regular intervals and still can't lie on my back. There are a couple of benefits I have noticed, though. I can hold my head upright for longer before I have to lean forward and dribble. And I have less trouble choking in bed. Which are no small benefits.

So a cautious thumbs up to injecting your mouth with poison.

Friday, 26 July 2013

Lethal Injections

I went to hospital on Monday to have botox injected into my salivary glands. Well, two out of three of them anyway. The appointment went ok. As usual the worst bit was the transport, because of my weak neck muscles. Basically I get whiplash every time the ambulance speeds up, slows down or goes over a bump. Traffic calming humps are the worst. I have always disliked them on principle but now I loathe them with a passion.

Luckily my gorgeous daughter was there to hold my head and soothe my anxiety by prattling on. My wife was following in the car, because despite the transport having 10 Seats, all unoccupied, I was not allowed more than one carer. Typical NHS.

The procedure itself was fairly routine. Sit here, hold still, small prick. That kind of thing. They injected my parotid and submandibular salivary glands, but not the sublinguals because apparently they're a bit hard to find. Quitters.

It's a bit too early to judge the effects as it can take up to a week. More later.

Friday, 29 March 2013

Kidney Stone - Slight Reprise

So the wimpy kidney stone finally reappeared. This time I was reclining in front of the tv in the evening while my loved ones were out. This meant that there was no one to help me and I had stupidly not set up any means of contacting anyone. This meant that I was in a lot of pain with no help in sight for a couple of hours. And it was my own stupid fault.

As an aside, here is a picture of the surface of a kidney stone:

Help eventually arrived and I was transferred to the bed and given paracetamol. When that didn't work I had some morphine which we had handily got in after last time. When that also didn't work, it was back to hospital. The journey wasn't quite so bad because we had specifically asked for one that I could sit up in, but otherwise it was a reprise of the first trip. By the time I got to hospital the pain was lessening and soon it was just a question of waiting for the ambulance home.

Apparently the pain was caused by the stone moving into my bladder so this should be the last of it. And now I have spare morphine. Yay!

Friday, 8 February 2013

Yippee! Free Stuff

I officially love the NHS, my occupational therapist and the British taxpayer. After only waiting a couple of months, and with very little hassling, they have brought me a Tobii PCeye eyegaze system and a samsung tablet pc to use it with. My ultimate aim is to be able to control my home environment entirely with my eyes, since eye movements are one of the few things that are (usually) unaffected by MND. Here's a video of a Norwegian doctor with MND who is doing just that. I like his spirit.

Sunday, 3 February 2013

As if MND Wasn't Enough

On Monday, I woke up at 5:00 with an excruciating pain in my left kidney. I woke Elaine and she got me out of bed. I thought that it might be wind or constipation, which can be surprisingly painful, so I had Elaine take me to the loo. This is a palaver at the best of times with two carers, but with just Elaine, and me in pain, it was a major ordeal. In any event, it made no difference except that we couldn't get my trousers back up again.

We dialled 999 and when they arrived the two young female ambulance crew were treated to the unedifying sight of me groaning and rocking with my trousers around my ankles. They got me decent in short order, although by now I was feeling dizzy, and couldn't have cared if the whole of Ealing got a look at my tackle.

They got me into the ambulance and strapped me to what I can only describe as an ironing board. I hate being laid flat on my back, because saliva pools at the back of my throat,so they had me on my side. Aside from the pain in my back, this was a pretty uncomfortable position, and I kept feeling as though I was falling off the ironing board. Suffice it to say that between pain, panicking and choking, the journey to hospital was one of the worst experiences of my life. Not something I wish to repeat.

In the event, the hospital was a major anticlimax. The relief at being moved onto a proper hospital bed was immense, and the administration of a bit of IV paracetamol sorted out the pain. I drifted off to sleep as the pain diminished, which was delicious. It took the rest of the day hanging around the hospital before a scan revealed that I had a 2mm kidney stone in my left kidney. Apparently 2mm kidney stones don't even warrent being broken up with ultrasound and should just 'pass' naturally. I bet the other kidney stones kick sand in its face too.

We finally got home at 3:00 am in the morning, after another rather unpleasant ambulance ride. I await the stone's passing with interest.

Thursday, 17 January 2013

So, It's Been Two Years

So here I am at the two year mark of my dreary slide into physical dependence. I think it's time to take stock.

Over the past year I've given up both walking and eating. My hands are basically flippers, except rather less useful, as I can barely raise them from my lap. My speech is sufficiently slurred that strangers have trouble understanding me,even when I can actually manage to speak through all the excess saliva that's always threatening to choke me.

Having said that, I'm still pretty cheerful and enjoying life. I do have a rather cool power chair and the state pays for my food, so its not all bad. I'll be getting an eye gaze system soon and I have brain-computer interfaces to play with. Lots of fun stuff. I'm starting to finally achieve my long held ambition to become a cyborg.

The house is mostly finished with just some electrics and automation to go.  It's looking really good too. Aside of a couple of powered ceiling hoists, you wouldn't know it was designed for a crip. I'll stick some piccy's up on FB soon.

Wednesday, 16 January 2013

Oh, No It's Another MND Blog

Traditionally the first blog post sums up the purpose of the blog, and since I'm a stickler for tradition (not!), I shall do the same. The primary purpose is to answer the perennial question 'How are you?' Which normally elicits the polite rejoinder 'I'm fine', but with MND requires a rather fuller response. Which, with MND, is considerably harder to give. So, I shall endeavour to post regular updates on my condition, mental state, and the various trials and tribulations that comes with being a crip. Then, when I'm asked how I am, I can just reply RTFB.

The blog name actually comes from the phrase 'All watched over by machines of loving grace', but seemed appropriate given the sheer number of helpers, carers, healthcare professionals and  assorted bureaucrats who keep an eye on me now.