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Main Forums => Living With HIV => Topic started by: Matty the Damned on October 05, 2011, 02:55:44 pm

Title: Don't Leave Me This Way: Motor Neurone Disease
Post by: Matty the Damned on October 05, 2011, 02:55:44 pm
A few months back I was told I had a condition called Hereditary Spastic Paraplegia. Turns out it's probably not that, but another thing called Primary Lateral Sclerosis.

Which is a form of motor neurone disease. Not the Lou Gherig sort. The other kind. Or so I'm told.

To be blunt, I'm a bit desperate.

Having AIDS is one thing. I can deal with that. But this horrible, creeping, spastic paralysis is quite another.

My doctors don't really want to discuss it. They tell me that it is what it is and if things get intolerable I can have a baclofen pump inserted in my spine.

So if anyone here has any experience of this stuff, I would appreciate your insight. Drop me a PM. Send me an email (my addy is in my profile) or even lay it on me in this thread.

I know I'm a bastard and all that but I want to know my options.

MtD
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: RAB on October 05, 2011, 03:34:50 pm
I had to do a Google search to find out what the disease is.

I read the Mayo Clinic info and it wasn't pretty.

While it is not fatal, it is a progressive disease, for which there is no cure.  Is that correct?

The only treatments are to mostly address the symptoms, force yourself to exercise to retain as much muscle as you can and slow down the progression.

This all just sounds awful.  I'm no sorry you're going through this.  

And for the record, you might be a bastard, but we still love ya anyway.

RAB

Edit to add this link, though you probably know all this already.

http://www.bing.com/health/article/mayo-MADS01115/Primary-lateral-sclerosis-PLS?q=primary+lateral+sclerosis
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: GSOgymrat on October 05, 2011, 03:53:20 pm
I've never heard of Primary Lateral Sclerosis. Like RAB I read the Mayo Clinic info. This sounds like something where the symptoms vary considerably from person to person. I hope that your doctors are wrong again about the diagnosis and, if not, that your symptoms don't become severe. I am truly sorry that you are having to deal with this at all.  It completely sucks.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Matty the Damned on October 05, 2011, 03:59:10 pm
I had to do a Google search to find out what the disease is.

I read the Mayo Clinic info and it wasn't pretty.

While it is not fatal, it is a progressive disease, for which there is no cure.  Is that correct?

The only treatments are to mostly address the symptoms, force yourself to exercise to retain as much muscle as you can and slow down the progression.

This all just sounds awful.  I'm no sorry you're going through this.  

And for the record, you might be a bastard, but we still love ya anyway.

RAB

Edit to add this link, though you probably know all this already.

http://www.bing.com/health/article/mayo-MADS01115/Primary-lateral-sclerosis-PLS?q=primary+lateral+sclerosis

Rabala,

Yeah, that's it. And you are so lovely for taking the time.  :-*

Let's be clear about this, I don't have Amyotrophic Lateral Sclerosis. That shit is reserved for baseball players and particle physicists.

I am neither that fit nor that numerate.

After the original diagnosis of HSP, Lady Jane (my GP) sent me to another neurologist. Genetic testing is next to useless and I have upper body symptoms. HSP is a strictly downstairs arrangement.

So let us put all this shit to one side.

I don't wanna be trapped in some drooling carcass only to expire from pneunomia because some so called "aged care nurse" forgot to clear my trachea tube.

I don't have a living will. My next of kin are sentimental idiots.

I beg y'all to stop worrying about Atripla side effects and disclosure issues.

At what stage does a decent Christian woman consider necking herself?

MtD
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Matty the Damned on October 05, 2011, 04:03:10 pm
Also I thank Ford.

Typing is a bit of a schlepp.

MtD
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Dachshund on October 05, 2011, 04:07:45 pm
First things first you know I love you madly and I hate that you are going through this. I don't know if you want to talk about this but do they have any idea the rate of progression?
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: bmancanfly on October 05, 2011, 04:09:19 pm
Your absence lately has been noticed and you've been missed.  Sorry to hear that this is the reason.

As if HIV weren't enough of a weight to carry,  now this.  So sorry.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Matty the Damned on October 05, 2011, 04:13:30 pm
First things first you know I love you madly and I hate that you are going through this. I don't know if you want to talk about this but do they have any idea the rate of progression?

The rate of progression is part of the puzzle. HSP has a really slow progression as well as a familial history sort of thing.

PLS progresses more quicker it does why not?! And you can't hang it on your parents. PLS is sporadic.

Which sucks.

MtD
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: skeebo1969 on October 05, 2011, 04:17:17 pm


   I wondered where you were and suspected it had something to do with the news you previously told us.  As if it could be, this seems worse.  Matty, sorry hardly expresses how I feel about it... Bastardly ways or not, no one deserves this crap.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Matty the Damned on October 05, 2011, 04:34:48 pm
Y'all are so sweet. :)

I had some clever shit to add here which totally would have humiliated Leatherman but I can't remember what it was.

Maybe next time.

Time to lay down.

On the upside my niece is to be born this week some time.

MtD
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: anniebc on October 05, 2011, 05:28:16 pm
First things first you know I love you madly and I hate that you are going through this. I

Ditto on what Dachs said.

I'm so glad you called in because you know you don't have to handle this on your own, miles mean nothing when it comes to helping those you love.

Hugs and Aroha
Jan :-*
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Buckmark on October 05, 2011, 06:25:18 pm
Matty,

I don't have any experience with PLS, nor do I likely have any medical answer for you.  If I did, I'd be a famous researcher instead of a two-bit programmer.  But I can keep you in my thoughts and send lots of love out to you.  I hate that your doctors don't want to discuss this with you.  Fire the bastards.

Hugs,

Henry

Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: denb45 on October 05, 2011, 06:34:44 pm
Man  ??? still strong Matty, and don't give up as I know you won't ,you better NOT  ;)
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: newt on October 05, 2011, 06:44:38 pm
Bummer

Before it gets to the pump stage, there is much you can do, including simpler (oral) early treatment, so insist on a neurology referral << maybe you done this >> and pester your docs to talk about it, if they don't know shit (which is quite likely) there must be someone in the kangaroo eats rabbit continent who does.

The tests and especially the interpretation of the tests to separate PLS from other similar things are complex and need expertise. As does the management.  I personally would not be settled on the diagnosis yet, even if broadly speaking PLS is in the ball park. For there is no definitive test, it's an expert guessing game. Get the best you can get from the bow ties.

Your HIV doc needs to talk about it cos HIV can do this and look similar, and the solution (perhaps) may be, erm, AZT (unfortunately). But I do not hold out a short plank off a ship of hope for you to walk. The docs need to do the medicine.

So a hug (( x ))

- matt


Edited for extra verb
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Tim Horn on October 05, 2011, 06:57:57 pm
Matty:

I know a few top-notch neurology folks who have spent a whole lot of years focusing on various common and uncommon neurologic manifestations of HIV: Jennifer Lyons at Massachusetts General Hospital in Boston and David Simpson at Mt. Sinai in New York. This is not to say that PLS diagnosis -- and I'd be inclined to agree with Matt; additional testing and opinions are probably a good idea -- is at all related to HIV, but if you're not coming across anyone able to at least explore a possible HIV connection (and thus, potentially, exploring some way to explore the motor neuron decline), I'd be happy to help connect you.

Hang in there.

Tim 
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Jeff G on October 05, 2011, 07:04:27 pm
Matty , you will be in my thoughts daily .
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: aztecan on October 05, 2011, 09:30:36 pm
Comrade,

This news makes my heart heavy.

I would try to follow up with what Matt and Tim mentioned.

Oh, and get the damn docs to talk. ALL of them!

Energy heading your way.

HUGS,

Mark
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: bocker3 on October 05, 2011, 10:21:57 pm
Oh Damned One -- this is not good news.  Much wise advice has been dispensed.  When you wake up from your rest, perhaps it would be good to consider Tim's offer of help. 
Doctor's "practice" medicine because our bodies can be a bit bitchy and seem to point in many directions.  Always a good idea to discuss things with a number of educated minds.

I, too, have missed your posts of late and was concerned it spelled trouble.
You will be in my thoughts.

Hugs from afar.......

Mike
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: OneTampa on October 05, 2011, 10:32:43 pm

I know I'm a bastard and all that but I want to know my options.

MtD

Matty,

You know the words "a star" are between the two pillows lettered b and d in bastard. Goodness knows you shine and stand out from the rest often.

I will be thinking about you and just know you will make your health care team earn the right to wear their smocks as you work through this.

You take care of yourself.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: jkinatl2 on October 06, 2011, 03:13:59 am
Matty

Since you did not share this in a more private forum, I am forced to reveal feelings and emotions here  - something I don't do very often anymore, since they are often utilized to further distance me from this place.

But God Damnit.

What I know of you, worries me that you would even make an offhand comment about necking yourself.

Oh listen, I totally get it (stop a little short of "support" it) when a person's quality of life diminishes beyond a reasonable capacity. And of course, that's about as wide a latitude as the breadth of the internet.

I also know that your physical being, that vessel in which you dwell, does not have the support and help that you might need in times to come.  Family oddity, societal craziness, that stubborn Aussie independence, and yes, your prickly personality might all come into play here.

But surely you don't need ME to tell YOU how valuable you are.

You rescued me over and over, here and elsewhere. Thanks to you, I have gotten myself evaluated and have come to terms with being, well, brain damaged (or brain enhanced, depending) thanks to neuro evaluation YOU recommended. Thanks to you, I have managed my meds and my illness and my despairs to a level I would not have imagined otherwise. And thanks to your patience and understanding, I have been able to be a person in this world, with some sense of purpose, long after my usefulness should have ended.

In short, Matty, I owe my life to you.

I would never beg you to stay around in a broken body with no help, no hope.  That to me would be torture.

But I sincerely hope you exhaust every other avenue available to your superior intellect before you did so.

You are one of the smartest people I know. And one of the kindest and most generous people I have ever met. And frankly. people who disagree do not deserve to drink the water that arises from the piss you place into the ground, filtered by earth,. raised into clouds, and cast upon our soil in rain.

I do not know what I would do without you.

I thought the same about my dad. He has been gone ten years. And I still find myself asking that question. And that question about Dear Dear Kate, Daddy Tim, and all those who SHOULD NOT BE GONE.

But wishing people here is not the same as wishing people pain.

My selfishness notwithstanding, I want you to find the path that makes you whole and happy. The one that transcends misery and entrapment, the one that creates your true and whole self. I might not agree with that path ( like it's my vote, ever) but I support and respect your direction.

I want you to find a way to fight this, to place your esteemed self above it. I want to live in a world where Matty, piss and vinegar intact, rules his world.  My wants, my wishes, I throw out every other day with the ferret litter.

You have been a rock to me.  To every incarnation of me that in the multiverse who has had the fortune to encounter you. Your opinion and counsel, half a planet away, has often meant more than every doctor and specialist here in Atlanta.

You know this.

I honestly know nothing about your malady. I have tried to research it, but beyond HIV transmission theory and treatment, my brain cells are pretty much trapped in an infinite loop pf causality.  I've surrendered to the flow, and am happier for it, for the most part. Except when I wish to all Hells that I knew more than I did, which is now. About this.

As cheerleading messages go, I think this falls rather short. Captain Carl would have had a much better and more succinct way of saying it. Daddy Tim would have browbeat it to a single sentence. Darling Kate would have thrown her heart into the ring, and made you her defender and champion. All I have is this, this awkward stupid prose.

I love you, and I know what it took for you to post this here. Which is why I post this here, myself.

I feel I need you to know so many things. But I also feel you know them already.

You have saved so many lives, many of which remain clueless and ungrateful. But your light, your lighthouse, shines so brightly that it's little surprise it consumes the body in which it resides. I would want it to be forever, as if there were such a thing.

But I hope you will be selfish and think of your health, your happiness, and your own journey first.  Please let us know what we can do. What we can offer. And please know that some of us get it.

Let us inspire you, if we can, if we have that capacity. You deserve so much more than this fucking world has bestowed. There are, as Stephen King put it, other worlds than this.

rant/rage over.

Jonathan
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: spacebarsux on October 06, 2011, 05:28:36 am
Matty,

I am so sad to hear you’re going through this.  I wondered on several occasions about what might have caused your long spell of absence.

As you might expect, I cannot provide any meaningful assistance as my knowledge on the subject is confined to Google searches – so all I will say (and I mean it) is that, like a lot of your friends here, I miss you a great deal. I  sincerely hope, wish and pray (I can hear you rolling your eyes at that word  ;)) that you get some relief and start to feel better real soon.

I haven’t known you as long or as intimately as the others but from the moment I joined the forums I could tell there was a rare-shining gem that lay at the core of your devilish exterior.  You were most kind and helpful to me when I was diagnosed and that is something I will always be indebted for and will never ever forget.

Big Hug. You’re in my thoughts.

PS- The quote in my signature line appears to be fitting to your circumstance.

"Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of whom they know nothing." -Voltaire
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: camille07 on October 06, 2011, 08:59:42 am
Matty-  You've made me smile from a far many times.  This simply hurts my heart greatly.  It makes me want to put on an old pair of doc martens and kick a wall.  

But follow Newt's guidance.  I have a friend who has the big bad...ALS.  I know it's not the same thing, but it is the same line of defense.  She was early in on her diagnosis and they put her on a trial run.  A year later the disease hasn't progressed.  

Please don't lose heart, we love you.

Big hugs,

Camms
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Assurbanipal on October 06, 2011, 09:05:51 am
Matty

I've missed you here.

 I wish I could offer something but the best I can do is this link to a research foundation that runs a support forum.  http://www.sp-foundation.org/discussion-forums.html (http://www.sp-foundation.org/discussion-forums.html)

Pretend its wrapped?

wiith love and respect
A
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: WillyWump on October 06, 2011, 10:47:38 am
Matty,

I'm not very poetic or creative so I cant give you an inspiring line of words to make you feel better.

But just wanted to say I am taken aback by your revelation and am truly upset. This just sucks.

 I am sending you healing thoughts...actually I don't really even know how to send healing thoughts or what that even means. But fear not, as you know I am a Christian soldier and as such I got on my knees last night and sent up a heartfelt prayer in your honor to the big guy. Of course, any prayers earmarked with your name are promptly sent back (mostly due to your Pope jokes). But after a lengthy discourse with the Lord he assured me that even the most damned of his sheep are worthy of his attention.

And like it or not, I will be sending up prayers each night until you are better.

Keep your chin up

Much love,
Will
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Growler on October 06, 2011, 11:28:40 am
Hi Matty,
My name is Joe, I've some experience in neurological nursing which basically means I can't tell you much more than you've probably already read on the internet.

That said let me assure you that the good christian woman still has a full life-time of debauchery ahead of her, before having to consider reaching for the nembutal......but don't forget the last minute bed side confession, it cleanses the soul and can have the added bonus of scandalizing the family!

Best Of Luck mate
Growler
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Ann on October 06, 2011, 12:05:45 pm
Matty, I'm tongue-tied. Even so, you are in my thoughts, albeit currently garbled thoughts. I hate that this is happening to you. I read this yesterday and after doing some online research, I just couldn't respond. I'm sending you positive energy and hopefully, some calmness too. I'll do my best.

Hugs,
Ann
xxx
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: phildinftlaudy on October 06, 2011, 12:25:38 pm
Matty -
This sucks big time -
As you have so often said - "I will keep you in my daily anxieties."

The very best I can do is to let you know that you are in my thoughts and I am sending lots of healing energy your way (it may take a bit to get from the US to Austrialia - but rest assured that it is on its way, and once the first dose hits, the other doses will keep arriving continously).

One thing I know about you - is that you are not going down without a fight - and I think that your energies in politics and in being a welcoming force (BIG SMILE) here in the forums wil go a long way in keeping this little bugger at bay.  You are a survivor (first and foremost).... the bastard part runs way way way way behind the good-hearted Matty (I know you probably hate hearing that, huh?) 

But, it's true --- you've sent out tons of positive energy in Matty the Damned style -- so, it should be no problem recapturing some of that energy and focusing on you during this time of uncertainty. 

I got you in my thoughts and will keep you in the front of them - exactly where you should be.

Love you!
Phil
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Miss Philicia on October 06, 2011, 12:26:15 pm
I felt the same when first reading this. Not knowing anything about this condition, and still feeling I don't after reading blurbs about it, I'm left not knowing how to channel my sense of concern and worry. Simply saying "this sucks tremendously for you" doesn't seem adequate, but it's about all I can say right now, at least until more is revealed and known by your doctors.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: LM on October 06, 2011, 03:10:05 pm
Whatever happens, give it a good fight. I wish you much strength and lots of people to support you.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Joe K on October 06, 2011, 09:53:30 pm
Matty,

Nobody plans on leaving you, no matter what happens.  My heart aches for you.  I love you and I will always be here for you.  Forget "necking" yourself and I expect you to do whatever you have to do.  

I can't bear the thought of losing you.  It is simply not your time.

Joe
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Since2005 on October 06, 2011, 11:27:03 pm
Matty,

I am as ignorant as I could be about the disease. I  know you will fight it out! I hope you would get all the strengths and energy that you need for it. Best wishes!!

--Since
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Bucko on October 07, 2011, 01:23:46 am
Quitting is for quitters, darling, and that's simply not you.

My heart aches because there is nothing I can do for you here, and I can't get there. As yet another someone whose life you saved on a very dark night about five years ago, my impotence enrages me.

Brent
(Who has always loved you most)
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: komnaes on October 07, 2011, 04:29:07 am
Hey Matty,

We still haven't achieved world domination yet.. I still want my post as the minister of religenoide. (yeah, I just made that word up, but you know what I mean). I mean who cares what a Christian lady might do, think about what fun we could have with the lot of christianists when you rule the world.

Kidding aside, since you already knew how shaken some of us must be feeling after reading your posts , I won't repeat it... all we can do is hope for the best for and worry with you about this doggone it motor neurone thingie.

Hugs, Shaun

(edited for typos)
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: BT65 on October 07, 2011, 07:33:54 am
Son of a fucking whore.  This makes me so deeply sorrowed, Matty.  I don't know what you're going to be doing this weekend, but maybe we could try to connect on skype (unless you're not talking right now).

Anything I can do from here.  I love you so much. :-\
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: OneTampa on October 07, 2011, 08:09:33 am
Matty,

Thinking of you today.

Hugs
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Andy Velez on October 07, 2011, 08:44:43 am
Matty, I'm very glad you've spoken up. I'd been missing you of late and now I know why you have been quiet. I don't at this moment have anything to say beyond sending you hugs and good wishes and hoping this turns out to be less terrible than it sounds.

Thinking of you and wishing you well.

Love xo. 
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Theyer on October 13, 2011, 03:25:33 pm
Yet another example off life ain't fair its randon, Soak up the love Matty and keep on keeping on .with love
mhtv
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: David_CA on October 13, 2011, 09:01:36 pm
Wow, I really hate this, Matty.  I say this with affection, but you're far too mean for something like this to keep you down!   ;)  Seriously, I know you've helped many here (and elsewhere), and I sincerely hope that some of that same 'help' comes back to you.  
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: odyssey on October 13, 2011, 09:45:43 pm
I'm really sorry to hear about this Matty. But remember... I'm here for you, and so are all the other people who have posted on this thread as well as others are too! You haven't given up on us, and we won't give up on you. Please don't give up on yourself! Send me a PM if you want/need to. *big hug*

odyssey
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: AlanBama on October 19, 2011, 10:51:55 am
How in hell did I miss this thread?  Guess I don't check in as often as I should; I did notice your absence lately....but didn't quite link it up in my head.

I have tears rolling down my lipo cheeks as I read this sad news, honey.   You know, without saying it, that I love you dearly.   You have been there for me, and for so many of us... I wish there was something more I could do or say....but there isn't.

So, I'll simply say, I love you, my friend.  I wish you peace, and serenity, in whatever comes your way.   You are a fighter, I do know that.   I'm in your corner honey.

Love,   :'(

Alan
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Jody on October 19, 2011, 03:16:08 pm
Dearest Mattala...Like Alan I also missed this post but I just wanted you to know how much you have meant to me and how much you have brought to this website as well.  I can only hope that your condition will not get too bad and that you can keep on truckin'.

Best wishes from the other side of the planet.

Hugs, Jody
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Matty the Damned on October 20, 2011, 05:17:59 am
Well aren't you all lovely! :)

My nan died yesterday.

She was a a protestant (Presbyterian) and lived her life in that way. Flint hearted and with all the compassion of a cornered rattle snake.

Unsurprisingly, we were very close.

That said she was a decent woman. She had one husband. She didn't drink or smoke or give her self to profanity.

She worked hard and was honest. She loved her kin and was charitable to her kith.

She was a good woman.

Anyway she spent her last days confined to a dismal nursing home. With the faint scent of faeces and what I can only imagine to be the  waft of Leatherman's aftershave in the air.

Grim days.

One of the things the nursing home folk made us do is have "quality time" with the poor old bastard. There she was gasping away on her oxygen tube and we had, each on our own, to sit with her.

Now my Nan lived in her own house until we dumped her in the Boolaboolabongbong equivalent of Long Term Survivors. We're talking from 1946.

And, for the last 50 years her next door neighbour had been a terrible old slag called Fay Hasler.

Nan and Fay hated each other, the details of which need not be recounted here.

On Monday my time to have "last moments" with Nan came around we talked of politics.

Then the time came to part. I asked Nan if she had anything she would like me to do.

She did.

"Fay Hasler and I never got along. But if you see her, I want you tell her something",

"Of course Nan, what is it?"

"Tell her I said, 'Fuck off, you big fat cunt.'"

 :-*

MtD
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Dachshund on October 20, 2011, 06:39:09 am
Condolences apple that didn't fall far from the tree.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: BT65 on October 20, 2011, 06:56:05 am
Matty, so sorry about your nan.  At least she was spunky, right up to the end.  :-*
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Matty the Damned on October 20, 2011, 07:17:48 am
Bummer

Before it gets to the pump stage, there is much you can do, including simpler (oral) early treatment, so insist on a neurology referral << maybe you done this >> and pester your docs to talk about it, if they don't know shit (which is quite likely) there must be someone in the kangaroo eats rabbit continent who does.

The tests and especially the interpretation of the tests to separate PLS from other similar things are complex and need expertise. As does the management.  I personally would not be settled on the diagnosis yet, even if broadly speaking PLS is in the ball park. For there is no definitive test, it's an expert guessing game. Get the best you can get from the bow ties.

Your HIV doc needs to talk about it cos HIV can do this and look similar, and the solution (perhaps) may be, erm, AZT (unfortunately). But I do not hold out a short plank off a ship of hope for you to walk. The docs need to do the medicine.

So a hug (( x ))

- matt


Edited for extra verb

'Sup Noot.

You are of course, right.

But frankly this whole thing, it doesn't matter so much.

To the rest of y'all, if you can have a good poo in the morning then things are pretty good.

I always feel I can rule the world after a decent shit.

Save tonight and all that . . ..

MtD
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Jeff G on October 20, 2011, 09:40:50 am
Matty , condolences about your nan . Its good to see you posting again .

My grandma had a next door nemesis she called old lady Gallman even though old lady Gallman was a decade younger . They made it a point to sit on the porch and discuss they're differences on a daily basis for hours on end .  
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Andy Velez on October 20, 2011, 10:27:16 am
Condolences about your Nan, Matty. She'll still be with you is how I see it.

You have been in my thoughts and prayers as well and hoping you are hanging in and going to be on the mend. Hoping so for you.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: denb45 on October 20, 2011, 11:08:06 am


thoughts and prayers Matty, glad your still around & posting  ;)
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Cliff on October 20, 2011, 04:45:09 pm
Thoughts are with you Mr. M. Good poo and all.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: thunter34 on October 20, 2011, 05:23:01 pm
The very next really quality dump I take....I'm gonna dedicate it to you, my friend.


 :-*

Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: bocker3 on October 20, 2011, 05:47:27 pm
Sorry to hear about your Nan -- although your lineage is quite clear, isn't it!

Have been thinking about you and very happy to see you posting.  Your Aussie wit is missed.

Hang strong -- and shit up a storm, oh Damned one......

Hugs,
Mike
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Theyer on October 20, 2011, 06:54:15 pm
I do agree about the poo thing. Hope yours is blissful tomorrow
t
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: klassykitty on October 20, 2011, 09:05:10 pm
 Mtd
Sorry to hear about your Nan, she sounds like she was a great lady. 

You will always rule the world no matter what your body functions are doing.  I imagine when I run to the bathroom in the morning your name will pop into my brain.

Sending hugs and good thoughts your way.   As David  said some of that help will come your way.

Miss you on here :'(
Michelle
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: anniebc on October 20, 2011, 09:46:50 pm
I'm so sorry to hear about your Nan Matty, I hope you passed on her message to Fay, I think of you every day.

Aroha and hugs
Jan :'(
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: komnaes on October 21, 2011, 12:11:40 am
Sorry to hear about your nan Matty..

Miss you and take care, Shaun
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Ann on October 21, 2011, 06:17:17 am
Sorry to hear about your Nan, Matty. At least you're still here to carry on her cantankerous tradition and I know you'll do her proud.

I had a lovely poo this morning and named it after you. Alas, I had to flush, but there's always tomorrow. :)

Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: skeebo1969 on October 21, 2011, 10:16:14 am


  Matty,

    Sorry to hear about the passing of your Nan.  I disagree about the poo thang, I prefer to hold it till 9 pm.

    (http://ts1.mm.bing.net/images/thumbnail.aspx?q=1269829992940&id=62d5404f432aecd060a3944dcd03e37e&url=http%3a%2f%2f4.bp.blogspot.com%2f_Kh0CZuWd0T8%2fSz3zA_1p5lI%2fAAAAAAAAGmc%2fG5Ps8IiIPwk%2fs400%2fFUNNY%2bSPIDERMAN%2b(6).jpg)

   
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Ann on October 21, 2011, 12:21:07 pm

I disagree about the poo thang, I prefer to hold it till 9 pm.


Typical stoner - always putting things off! ;D
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: skeebo1969 on October 21, 2011, 02:03:10 pm
Typical stoner - always putting things off! ;D

It regrets me to inform the forum that my stoner days have been left solely to dreams of being surrounded by pot plants since moving to this miserable place called Massachusetts.  The police here scare the shit out of me..

I also would like to report that I really thought the "what percent are you" thread in off topic was about the American public's new considerations regarding legalization of marijuana.  I am part of the 50% who now approve.  I also think it's a fine way to get us out of the current financial woes that plague our country..

Sorry Matty for the hijack.  I fully expect a thrashing for this...

Skeebo
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Miss Philicia on October 21, 2011, 03:28:23 pm
Sorry to hear about your grandmother, matty -- as well as the after shave.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: odyssey on October 21, 2011, 10:04:22 pm
Matty-

Sorry to hear about your nan. Of course, it took a minute or two to get it through my thick Yankee skull of what relationship a "nan" was, but anyway...

Also very glad to see you back here on the 4ums. I was really starting to worry and was about to pester all the frequent posters to see if anyone had your phone number and could call you and check up on you. So glad you're around again!

Hugs and good thoughts!
odyssey
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: northernguy on October 22, 2011, 12:10:21 am
Jeez, I haven't been around for a while.  Sorry to hear about this Matty.  And I refuse to believe you're a bastard (despite the curmudgeonly genes from your nan)! 
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: spacebarsux on October 22, 2011, 02:29:25 am
I understand how painful the loss of a grandparent is.

My condolences Matty.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: OneTampa on October 22, 2011, 11:03:32 am
Matty,

Sorry for your loss.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Solo_LTSurvivor on October 22, 2011, 02:44:14 pm
"Fay Hasler and I never got along. But if you see her, I want you tell her something",

Matty, sorry to be tardy for the party ~ I'm sorry to hear of your nan's passing.

She sounds like she was one helluva gal.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Matty the Damned on October 25, 2011, 06:09:59 am
So we sank Nan in the hill today.

You know, they say your nails don't really keep growing after you're dead. But I swear with the Living Lord Jesus as my witness that old bag had claws like a manchu lord at her viewing yesterday.

Anyway she's under the sod now and my extended family are finally fucking off.

Moreover I've stopped feeling sorry for myself and I have a hunger for forums meat.

So expect me back amongst you shortly.

MtD
(Who thinks you're all a bunch of cunts)
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Theyer on October 25, 2011, 11:02:52 am
Let the flagellation begin......
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: denb45 on October 25, 2011, 11:16:22 am
Good for u Matty  ;) glad to have u back in the forums u have been missed  :-*
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: newt on October 25, 2011, 01:45:26 pm
Dear matty

You can't spell cats

- matt
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: anniebc on October 25, 2011, 04:58:45 pm

MtD
(Who thinks you're all a bunch of cunts

Not all of us surely... ;).

I'm glad it's over and look forward to having you back among those who really do care about you, and stop using naughty words in front of the children you know how upset they get.. ;)

Missed you.
Aroha
Jan :-*

Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: WillyWump on October 25, 2011, 05:08:58 pm

, and stop using naughty words in front of the children


and the sissy men amongst us.

Hurry back, there are some members who need some schoolin' from the Damned One.

Oh , and glad your Nan is RIP'ing in the hill.

-Will

Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: bocker3 on October 25, 2011, 06:43:43 pm
and I have a hunger for forums meat.
MtD
(Who thinks you're all a bunch of cunts)

Welcome back -- you have been missed!!

Oh -- there is a new Big Pharma conspiracy thread that should help feed your 'hunger".

Hugs,
Mike
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: jkinatl2 on October 25, 2011, 08:57:38 pm
Welcome back -- you have been missed!!

Oh -- there is a new Big Pharma conspiracy thread that should help feed your 'hunger".

Hugs,
Mike

That's probably way too easy for Matty. I suspect he likes his prey a little tougher and stringier. Something in a jerky he'd have to pick from his fangs after.

Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: bocker3 on October 25, 2011, 10:39:10 pm
That's probably way too easy for Matty. I suspect he likes his prey a little tougher and stringier. Something in a jerky he'd have to pick from his fangs after.



You are probably correct -- I don't know what I was thinking, we all know the dearest Damned One likes a challenge...........
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: phildinftlaudy on October 25, 2011, 10:50:44 pm



(Who thinks you're all a bunch of runts)

My grandpa used to call us runts when we were younger - thanks for bringing back some happy memories

He called us runts and rug rats

Sometimes guinea pigs too -
But only when we got out of the pool all soakin' wet

I think you are quite the runt to...

Come to think of it - I guess many of us are runts -
I love running with the runts

If I could smoke a blunt, run like a runt, let out a little scrunt, and a little grunt --- people would probably then start calling me a big ole' queenie actin' little *unt   (I didn't want to say any naughty words - because I know how those types of words are very offensive to you)

Welcome back oh runty one!  Luff Ya!
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: Ann on October 25, 2011, 10:52:28 pm
My grandpa used to call us runts when we were younger - thanks for bringing back some happy memories

He called us runts and rug rats

Sometimes guinea pigs too -
But only when we got out of the pool all soakin' wet

I think you are quite the runt to...

Come to think of it - I guess many of us are runts -
I love running with the runts

If I could smoke a blunt, run like a runt, let out a little scrunt, and a little grunt --- people would probably then start calling me a big ole' queenie actin' little *unt   (I didn't want to say any naughty words - because I know how those types of words are very offensive to you)

Welcome back oh runty one!  Luff Ya!


Runt the duck was that all about?
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: phildinftlaudy on October 25, 2011, 11:40:08 pm
Runt the duck was that all about?

I don't know -
but it made more sense then the conspiracy theory thread.... didn't it?  ;)
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: thunter34 on October 26, 2011, 12:01:59 am
I don't know -
but it made more sense then the conspiracy theory thread.... didn't it?  ;)

It made sense to me.
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: jkinatl2 on October 26, 2011, 12:10:08 am
I don't know -
but it made more sense then the conspiracy theory thread.... didn't it?  ;)

I've picked stuff off my scalp that made more sense than that.

Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: anniebc on October 26, 2011, 02:13:34 am
Runt the duck was that all about?

It's just Cupid Stunt messing with your heads, I think he is just thankful that summer is over so those poor wee guinea pigs get the chance to dry out and all the pools have been covered over for winter... ;)

Aroha
Jan :-*
Title: Re: Don't Leave Me This Way: Motor Neurone Disease
Post by: aztecan on October 26, 2011, 10:39:08 am
Well, thanks to century link's takeover and a three-month battle when I have had very intermittent internet, I am late to the game.

First, Matty, condolences about your Nan.

Secondly, glad you've seemed to get your second wind. I have missed your sorry butt miserably.

HUGS,

Mark