MND

This is a list of existing blog posts that specifically relate to MND.

A result …

A result …

Two days ago, after watching the APPG discussion, I wrote, "Whether the meeting has moved anything forward I doubt.  We'll see." There was a result.  Given that assisted dying is illegal, Matt Hancock asked for more information on suicides by terminally ill people. ...

APPG. Worth it?

APPG. Worth it?

Continuing one of the items from the last blog post, at 2pm yesterday afternoon I received an email from Dignity in Dying.  It said that they had just received permission from Matt Hancock's office to live-stream the online All Party Parliamentary Group discussion on...

Wall? Elephant? Both?

Wall? Elephant? Both?

Hello. I’m still around.  Quite pleased with making the target of 200 blog entries. Quite pleased with the April Fool jape.  Quite pleased with the discovery of that short recording of my actual voice ‘in concert’, even though it was oration rather than natural...

Another purpose …

Another purpose …

A reminder to myself: the blog is multi-purpose. Triggered by the illness and a life shorter than expected, it gave me a hobby and a focus.  Time to tell stories from my life.  Time to say things I’ve not said in the past.  Time occasionally to comment on current...

Comms and Alerts …

Comms and Alerts …

Two days ago I had the pleasure of a Zoom chat with Professor Tony Watts who set up the MNDA Fund in my name.  It was a general catch-up call and Tim joined us, partly to translate my growling.  I also did some text to-speech typing, generating the e-voice that you...

Sleepover …

Sleepover …

What a pleasure to be in hospital just for one night, knowing that nothing unpleasant is going to happen, with very friendly staff and a specialist ward doctor prepared to give a lot of time to the patient. I wrote the previous blog at about 8pm on the 17th.  Two...

A Night without Alice …

A Night without Alice …

I’m  writing this from the hospital bed on the 17th, yesterday. Since arriving in the chauffeured Mercedes - thank you again, NHS - they’ve looked after me well.  It’s a large room with just two beds. Tim, in the role of carer, is in the other one. Medics galore:...

Odds and Ends …

Odds and Ends …

Today, for want of anything better - or rather, for want of inspiration - here are a few random bits and pieces in the immediate DP world. Sunday’s 7am self-administered Covid swab test kit was collected at 11am.  The result came through yesterday morning, 24 hours...

Zoom with a View

Zoom with a View

I wrote to some colleagues yesterday afternoon, thanking them for their help and saying, “Wish I could have a pint to celebrate!” Yes, the “Explore Culture” Zoom discussion was over. Scheduled to last an hour, we had to stop it after 75 minutes. Joining us were over...

All the latest ….

All the latest ….

Every few months since the blog started I've provided an update on how motor neurone disease - amyotrophic lateral sclerosis - is affecting me.  It never makes for comfortable reading, but it was the terminal illness and the shortened life that it is forcing on me...

Cultural Storytelling – Dear David

Cultural Storytelling – Dear David

I'm not having a rest!  We've just done a rehearsal for the Zoom Talk next Sunday.  When that's over we intend to keep a recording of it available on the blog.  The Zoom recording of Sunday 14th March's 'Cultural Storytelling - Dear David' talk will appear here as...

Trying to spread the word ….

Trying to spread the word ….

Let me introduce Xu Minji.  We’ve not met, but six weeks ago she contacted blogmaster Tim with an idea.  We thought about it and we contacted a few others who might be willing to help us.  It looked feasible, so we decided to go ahead.  It’s taken a lot of of hard...

Grateful but uneasy ….

Grateful but uneasy ….

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...

Voices …

Voices …

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...

Speechless?  Nonsense!

Speechless? Nonsense!

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...

What a year!

What a year!

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...

It must be stopped ….

It must be stopped ….

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...

State of Play

State of Play

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...

News from a friend

News from a friend

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...

The new toy ….

The new toy ….

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...

To reassure ….

To reassure ….

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...

Just a matter of time ….

Just a matter of time ….

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...

Limbo x 2 ……

Limbo x 2 ……

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...

Limbo …

Limbo …

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...

Victim or Invictus?

Victim or Invictus?

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...

Wrestles and Rigs ….

Wrestles and Rigs ….

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...

Botox!  Pavlov!  Housemaids!  Whatever next ….?

Botox! Pavlov! Housemaids! Whatever next ….?

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...

The Housemaid’s Tale ….

The Housemaid’s Tale ….

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...

Thank you!

Thank you!

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,...

MND/ALS … weighing it up …

MND/ALS … weighing it up …

Can I say a few positive things about this illness?  It's a nasty business as everyone knows, but I've been living in the valley of the shadow for a year now, and my perspective might be worth recording.  The salvation, for me, was when I accepted the inevitable just...

The Big Question ….

The Big Question ….

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...

4 July … and counting ….

4 July … and counting ….

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...

MND/ALS … and pigeon  ….

MND/ALS … and pigeon ….

Today’s will be skipping around.  As you know, each day’s ‘post’, as the software calls it, is launched to a salivating world at 0900 UK time, so it’s normally written the day before.  And that’s what I’m doing now.  Going through a bit of trouble physically though,...

The daily round …

The daily round …

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...

Slowly but surely ….

Slowly but surely ….

.... 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...

Smile, and the world smiles with you, MND …

Smile, and the world smiles with you, MND …

Why not smile if you can, even with such a thing as MND/ALS? Since the age of 40 I've worn daily contact lenses, or glasses occasionally.   Three weeks ago I was furious: it was 11pm, I was tired, and I'd tried time and time again to take the lenses out but had failed...

40 days … and a different voice

40 days … and a different voice

Today is the 40th of these scribblings.  We've had 39 days of me rattling the keyboard and 39 days of you struggling through the verbiage, so I thought...

Before, After …. and Now

Before, After …. and Now

Sorry about the pictures!  It was a bit of fun.  Just over six weeks ago I challenged friends to join me in a Lockdown Project: no shaving for the duration.  Well, I didn't expect it to go on for so long, so a couple of days ago the hairiness was removed.  Above you...

This and that ….

This and that ….

First, the Rather Serious.  Talking to myself, yet again I have to ask why I'm doing this.  It's easy to lose sight of the reasons, especially when I see that in the last week or two there's been a lot about my own background and experiences.  Perhaps I've drifted...

Mulling ….. and just a little more about MND

Mulling ….. and just a little more about MND

I was sitting in my roof garden yesterday, a beautiful day, warm, quiet, calm, with London air the cleanest for generations, and I was mulling on a remarkable turn of events.  The illness has made it increasingly difficult for me to socialise - the speaking is slow,...

Dear Readers ….

Dear Readers ….

I started the blog with four broad intentions: periodically to let friends know how I am;  to write down some unusual incidents from the past as a sort of record;  to comment on current events if I felt I had anything to say (because the physical voice might not be...

MND and me ….  or A Day of Two Halves

MND and me …. or A Day of Two Halves

Today, a short story with a long attachment. The story tells what happened on the day of the diagnosis.  The longer attachment describes how the bulbar version of motor neurone disease / amyotrophic lateral sclerosis is affecting me, more than 12 months after I first...

The 12 Days of Blogging …. Why?    And more questions …..

The 12 Days of Blogging …. Why? And more questions …..

This blog began on 1 April.   If anyone is still reading it I hope they did start at the beginning: that should put everything into context. It's a self-imposed challenge, frankly.  A couple of days ago I started wondering if it was such a good idea after all, and so...

Heroes, and more ….. a tribute

Heroes, and more ….. a tribute

These are truly difficult days for everyone as we try to outwit the virus, huddling in corners in the hope that it will slink away and burn itself out. And quite rightly we salute the multitudes of hospital and emergency workers and all the teams that support them as...

It’s probably time I talked about Dignitas ……

It’s probably time I talked about Dignitas ……

It's probably time I talked about Dignitas and my motor neurone disease, at least to get some of it out of the way.  If this isn't something you're interested in, please skip it.  No idea what tomorrow's will be, but expect something lighter and very different. For...