Bad, for me, news.

I have previously posted on here about my (physical and mental) struggles I have received lots of good advice, encouragement and empathy*. This is one of he principal reasons that I like this forum. OK it can can a bit heated but generally I don’t bother too much about that, but when the “excrement interfaces with ventilation equipment”**, this place really works well.

Anyway enough guff, last Friday (12th April) I saw a neurologist for the first time in a while. She is pretty much totally convinced that I have a form of Motor Neurone Disease, probably anterior horn cell disease, at an advanced stage. In May I will have tests, mostly a series of EMG (ElectroMyoGram)*** which will help with diagnosis and any prognosis.

Anyway, I will continue to occasionally browse the forum, and even more occasionally post a reply****. Nothing more to say really, except

I love a footnote ;-). See it’s true*****
I do have a faint hope that there will be a trial of stem cell therapy on my condition, but as it’s rare I’ll need to persuade a medical researcher to start a trial******.

* : I use the word empathy as it has a specific meaning. Cognitive, Emotional and Compassionate is the best short definition I have found. My considered attempt to describe the difference between empathy & sympathy is: Empathy is a feeling of supportive compassion using the ability to understand a person’s condition, whether mental or physical or both, and the effect that the condition has on the person with the condition; Sympathy has an undercurrent of a feeling of pity.

** : I love a good euphemism, especially a sesquipedalian one. The only source for this is I think a quote from Kurt Vonnegut “When the excrement hits the air conditioning”.

*** : Like most people on this forum, with the exception of neurologists, or possibly anyone with a medical training and a very good memory, I didn’t know what EMG stood for either.

**** : I have a number of MTB’ing friends, made from when I started to ride off-road. I used to spend quite a bit of time on MTB-Wales.co.uk (I guessed the URL as it was spammed to death a few years ago) and did a few events with teams that were put together informally, so maybe some of those guys are on STW forums.

***** : As you can tell, I really love a footnote, this is initially due to writing my dissertation and then writing several whitepapers on ICT subjects.

****** : I love a footnote, but my love for a footnote has limits.

That sounds like grim news, sorry to hear.

My eldest son is a post PhD researcher into MND … if you want pointing in the direction of any research papers etc, PM me and I’ll see if I can pick his brains.

Good luck, thoughts with you …

ElectroMyogram sounds like a new social media App!

@HughStew

Well mate, what to say, that’s all a bit crap. Look, I got given some really bad news about 18 months back. I even saw the “stem call implant guy” as he called himself. I shit a brick and did what we all do.

I posted about it in here.

After more tests and a few more days of cacking myself I got more conclusive tests back that changed the diagnosis to something much more treatable.

Now, I can’t guarantee that will happen with you but wait till you get a firm diagnosis of what’s really going on.

Not something I’ve ever mentioned on here I think but I had neurosurgery for Chiari Malformation (a herniated brain) in the 90’s as I was told id die one day by simply having a coughing or sneezing fit that would send a  “shock” down the spine and that would be it. Lights out.

Well, I had the op, sure my balance is crap (hence the STW crashes…) and I have nystagmus in my eyes and some “other issues” but I’m still here and I’ll ride the STW again one F***** day, I swear it. Stuff happens and sometimes it’s shit but it’s not over til it’s over and sometimes the shit sandwich turns out to contain less shit that you first thought. That’s a lot of shit in one sentence. Even for a post from me.

Keep on posting and if you ever want to PM me feel free you footnote nutter! 😁

Terrible news to have to take in and deal with. You sound remarkably calm in your pist

The scan may mean it isn’t what they think it is. Hold on to that thought if it helps.

Sorry to hear this.

I can offer no useful insight into your position but I must compliment you on those epic and well crafted footnotes and encourage you to come back and vent / post with more of a similar standard.

I wish you the best with the tests and outcome and that it is better than you fear.

Something I forgot op, the best bit of advice I got on here 18 months back was not too go googling potential conditions until I knew for sure what I was dealing with.

That was the best advice I’ve had in decades.

Let’s start * with an internet hug. A big sigh, and another hug.

I don’t have the words, and I don’t understand that sort of ailment to say much more. Vent, chat, network, moan and keep taking the tablets.

*Hugs.

That is really crap news Hugh but there is some very sound advice above from Poops – I hope you can focus on that and avoid as much as possible the inevitable and totally unhelpful negative thoughts. Take care of yourself.

PM me and I’ll see if I can pick his brains.

Um, about that…

I must say, to manage such an epic and humorous post about such an unfortunate situation is frankly uplifting, and fingers crossed for the best possible outcome.

To follow on from Poopscoop, even when you know for sure what you are dealing with forget about googling it. My experience only of course. All the best.

Life can be shit but you have to play the cards you get dealt. I found this forum quite therapeutic when I snapped my foot off and was sick of medical people being smiling, hopeful and sympathetic before walking outside the curtained area and discussing who should do the amputation and was it worth waiting until nearer Christmas as there might be less people on holiday in early December.

I swear they thought the curtains were sound proof as they walked back through the curtains and explained that they wanted to let my ‘foot settle down’ until early December when they could do a non-traumatic amputation*.

Posting and reading the crap on here was much more enjoyable.

*Just a little footnote to say that they never got round to the amputation and I still have two feet**.

**Hopefully you will get a positive outcome too***

***or at least a a less negative one

*Just a little footnote to say that they never got round to the amputation and I still have two feet**.

Epic footnote in fairness. 👍

Unfortunately Hugh, I have nothing constructive to offer except ‘big, b@st@rd, buggery – bollocks’

anybody who can reference Kurt Vonnegut is clearly a decent guy and absolutely does not deserve this, keep us all posted on your progress and know that we are with you in spirit – stay strong! (Although that doesn’t mean don’t have a bloody good cry if you feel like it!)

Id love to have something witty, erudite or even pertinent to say.  But i haven’t .  So have a hug

*  i cant even do it in a footnote

** or a second one

My footnote game is extremely poor, so I will just offer an Internet hug and encouragement. We’re here (well, for a given approximation of ‘here’) for you if/when you need to vent or just need a feeling of support.

And, I just checked, I still have a poor level of footnote compared to others here, so probably best if I leave it to them.

This place is just daft good. I don’t know how many posts there have been where people have opened up about some serious medical shit but it always seems to be with calmness and good humor. Then the replies are awesome and supportive.

OP that’s buggeringly rubbish.

* Don’t Google illness at all

** I know this because I told an S1 class not to Google Necrotizing fasciitis pictures

*** One picture showed Necrotizing fasciitis of the penis, reminded of Poop’s posts, sorry Poop.

@HughStew – if you love footnotes you must read “The Third Policeman” by Flann O’Brien. Well, actually you should all read it. It involves bicycles.

“I used to spend quite a bit of time on MTB-Wales.co.uk (I guessed the URL as it was spammed to death a few years ago) and did a few events with teams that were put together informally, so maybe some of those guys are on STW forums.”

Well in that case we may well have met (I was Timothy on mtb-w, I think it was mtbwales.com) – there are quite a few others I think. Very sorry to hear of your health issues – there appear to be quite a few of us who share their’s on here, not that I go on about the effects of my prostate cancer drugs that much. But it is useful to be able to say what you want, rather than facing that question of “at what point (if ever) will it become appropriate to unload my issues on this nice person I am talking to”.

*** One picture showed Necrotizing fasciitis of the penis, reminded of Poop’s posts, sorry Poop.

No problem!

Yours,

Cyberdyne Systems Model T-1000

“The Third Policeman” by Flann O’Brien

Transference of atoms. Rider becomes more bike, bike becomes more rider as time proceeds.

…and as Kurt Vonnegut also said:

What’s the white stuff in bird poop?

That’s bird poop too.

I think we should hold onto that thought at this poopiest of times.

Also, when times are dark, it’s ok to change your standards and expectations of normal to get through the days. Or to paraphrase: it’s better to be shitting in the sink than sinking in the shit.

KBO

Best of luck with – whatever it turns out to be – OP

Please don’t post too rarely; not everyone has a thread with “sesquipedalian” and Kurt Vonnegut quote* in post 1 and then The Third Policeman and its bike-obsessives**

* Granted, your quote’s only the scond best one

** One of whom is @maccruiskeen IIRR

*** Err,

not everyone has a thread with “sesquipedalian” and Kurt Vonnegut quote

Yep, I had to use Google lens on both of those.

Yours, Poopy the Prole.

Thanks for all the replies. As I said, this place can get petty, but then the chips are down it’s a great support network.

Re: “The Third Policeman” by Flann O’Brien, my best mate at college was, and actually still is, Irish, from Belfast, but still Irish. He alerted me to Flann O’Brien, so I know the book well. He lives in Australia now, but is coming over this Summer, so I can spend some time with him, and introduce him to my wife Mk2 and meet his wife Mk 2.

As state above my neurologist has said that it almost certainly is MND, Advanced Anterior Horn Cell Disease, but thinking about it I suspect it started 8 years ago, so I should have a while left. I’m having an ElectroMyoGram (EMG) of 31st May so should have more news after that.

When I know how much time of productive life I have, I will probably go back to work, as it will give some purpose and structure to my life. This depends on what the prognosis is.

Thanks,

Hugh

Hiya mate, I was thinking about your post yesterday as you said you had a consult/ test coming up in May. Sorry it’s at the latter end of the month as I’m guessing you’d just like to get it done and know what’s going on.

Anyway, I hope the results are in your favour, keep us updated. 👍

Appreciate the update.

*lack of footnotes not acceptable

Sorry to read this Hugh and really wish I had something more supportive to type. Just wish you all the best and please keep posting (with footnotes of course) and updating us all . Take care and hugs and love from over the internet

You seem remarkably calm considering the situation and the possible outcomes. Sending healing vibes and best wishes for a positive* result from your scan!

*by positive I don’t mean that the result of the scan shows positive evidence of a disease, but that you get a negative result which will be a positive outcome.

Appreciate the update.

I thought an update was required, as I’ve been through the mill of emotions in the last 2 weeks, from “Oh god I’m going to die horribly. Aaaaah!” to “Que sera sera, you’ve got to die of something, and it’s better than being stoned to death by the Taliban.”

*lack of footnotes not acceptable

*Fair* criticism, although I did notice that you didn’t reference this footnote back to the original text.

*Fair in the sense of “reasonable” rather than “Light of complexion and hair**”

**I’ve nothing in general against blond***/blonde haired people

***Except both BoJo and my wife’s first husband are both blond, coincidence – I think not, both are about as trustworthy as a weasel with a grudge and a gatling gun.

“Oh god I’m going to die horribly. Aaaaah!” to “Que sera sera, you’ve got to die of something, and it’s better than being stoned to death by the Taliban.”

That perfectly sums up how I felt at the initial diagnosis, my head was doing loop the loops.