MND

Three things in the tidy-up.  I wasn’t going to write about the first item but I  find I have to:  1. Two days ago I was told that today there might be a Press Association release about the Assisted Dying Bill that is going through Parliament at the moment, with the...

I’ve been quiet for a few days. They’ve been rather difficult health-wise. In one sense it’s ‘more of the same’.  Each weakness that I described in the last State of Play document has worsened.  Head, mouth, throat, neck, lungs, left arm and hand, left leg and foot,...

… for my blogmaster’s strange hobbies. I’m definitely not responsible for his quirky sense of humour. I refuse to take responsibility for his weird taste in music. Any antics are certainly not my responsibility. I reject any responsibility regarding his peculiar...

Friends, this was unexpected. In the last couple of weeks Ellie, at Dignity in Dying, has been talking to me about using my ‘story’ in their ongoing campaign. You might know that on Wednesday their Chair, Baroness Meacher, introduced an Assisted Dying Bill in the...

Is Britain recovering from the pandemic?  No one’s sure but the figures at the moment seem to suggest that it is.  We’ve had almost the worst record in the world for infections and deaths.  At the moment we seem to have almost the best record in the world for...

How is the voice machine?, I’ve been asked.  Well, two days ago the voice therapist visited and I handed back the machine they’d lent me, called a Lightwriter.  It was a rather bulky thing with a noisy keyboard and a small screen front and back so that the other...

Here’s a bit of fun. I’ve lost my physical voice, permanently, but in this quiet period of lockdown, with few visitors other than therapists, there’s not that much to say.  I get by.  Latent acting talent. You’d be impressed by the range of facial expressions, hand...

It’s almost Christmas.  What a year, for all of us! I’m ending it with thanks.  Thank you for following my online mutterings, now over 160 blog entries since April.  Thank you for your supportive Comments, more than 300 here since mid-June.  Thank you for the many...

Friends: After I was diagnosed with MND/ALS in July last year, and especially since the blog started on 1 April, there have been so many instances of good wishes, gifts, and kind, generous actions.  I hope I’ve thanked everyone personally. It wasn't easy to write...

Those darned operations, three of them, have been a distraction.  The blog was intended to be about bits and pieces of my life including some things I'd not talked about before; and occasionally to track the MND and how it's affecting me; and thereby helping others to...

Saying hello.  It’s been a difficult few days, with ups and downs.  That’s expected so I’m not concerned, but things are still slow.  I’m getting care and am in good hands. Birthday greetings came in so I thank everyone for those.  One in particular was a shock.  It...

Writing this at 6pm on the 13th.  Yes, I have a PEG to play with.  They did it this afternoon.  They seemed pleased, and relieved, and we’re all hoping it’s successful. There were some uncertainties beforehand, including when they told me they’d be using a deeper type...

Some friends have contacted me in the last two days, concerned that I might not be coping especially as I live alone.  To reassure everyone, some notes: It’s 3 minutes’ walk to my excellent GP, who will visit me if needed.  2 minutes’ walk to a pharmacist I’ve known...

Yes I’m still around.  Got back home last Friday night the 16th, and then something unexpected happened.   A tiredness hit me, exhaustion beyond anything ever experienced before.  No energy to do anything.  Very very unusual for me.  Spent the last three days...

It’s been a long day today, the 15th. I got a good 6 hours’ sleep, awakened only by some damn machine that started beeping.  The nurses are great, though some of them can’t understand me at times - deciphering the Peace Growl can be a challenge. So has anything...

Well, I’m still in hospital, and obviously writing this on the 14th.  No idea what comes next, and nor for the moment do the medics.  The one good thing is that they did agree to withdraw the NG, the nasogastric tube, and that was done this afternoon. Big relief. I...

Friends, the blog entry for 20 September included the Invictus poem, already known by many and now, I hope, appreciated by others too.  Its sentiments reflect the romantic spirit of the mid 1870’s, and I love the piece. Given my own situation I considered adding some...

It’s been an eventful life.  My word it has.  Writing this blog has been as much an eye-opener for me as it has for others, but I must say that the last three days have been unique, totally different from anything in the past. In the 5 months since the blog started...

Give us another update, someone asked.  So here it is. Mouth and throat muscles almost completely paralysed.  Thin liquids and solid foods are impossible to consume: liquids flow anywhere without control, and solid food, also uncontrolled, is rejected by the throat...

This is a short one.  The illness is progressing, in the sense that it’s even more difficult now to eat, drink, swallow and speak.  When the throat finally stops working, no food or liquid will go down.  It won’t be fun.  Three options: a dash to Dignitas; or a...

Well, it’s been an experience.   A hesitant first step on 1 April, then tiptoeing through the next few days, and then little by little moving from tiptoe …. to walk …. to stride.   For me, a journey of memories, a jigsaw of stories, a journal of health, some junk,...

I reckon, for someone in my situation, it’s natural to spend time thinking about The Big Questions:  What is life?  How can we evaluate a life?  Is it realistic for me to evaluate my own life?  What would be the criteria?  We can’t change the past, so does it really...

Here we are at the 95th blog.  Never thought we’d get here so am quite pleased.  Five more to go till the 100th and I reckon that will be enough.  Or perhaps one more after that, just to be awkward. This will be a short one, with an attachment.  I’d like the final...

This won't be so interesting: just a few things about how I'm spending my days at the moment.  I still wasn't feeling so well yesterday. The temptation was to have breakfast and then do nothing. I knew it would probably make things worse so I forced myself to go for a...

.... the illness is taking hold as expected.  It's little by little; no dramatic change.  A summary follows.  Please don't read it if you're upset by such things. Below are a few things that I feel are new, and others that were mentioned before but seem to have...