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Author Topic: Don't Leave Me This Way: Motor Neurone Disease  (Read 23107 times)

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Offline Matty the Damned

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Don't Leave Me This Way: Motor Neurone Disease
« 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

Offline RAB

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #1 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

Offline GSOgymrat

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #2 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.

Offline Matty the Damned

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #3 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

Offline Matty the Damned

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #4 on: October 05, 2011, 04:03:10 pm »
Also I thank Ford.

Typing is a bit of a schlepp.

MtD

Offline Dachshund

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #5 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?

Offline bmancanfly

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #6 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.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline Matty the Damned

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #7 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

Offline skeebo1969

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #8 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.
I despise the song Love is in the Air, you should too.

Offline Matty the Damned

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #9 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

Offline anniebc

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #10 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 :-*
-----------------------------------------------------------------------
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Offline Buckmark

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #11 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

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline denb45

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #12 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  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline newt

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #13 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
« Last Edit: October 05, 2011, 07:18:54 pm by newt »
"The object is to be a well patient, not a good patient"

Offline Tim Horn

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #14 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 

Offline Jeff G

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #15 on: October 05, 2011, 07:04:27 pm »
Matty , you will be in my thoughts daily .
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Offline aztecan

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #16 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
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline bocker3

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #17 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

Offline OneTampa

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #18 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.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline jkinatl2

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #19 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
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline spacebarsux

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #20 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
« Last Edit: October 06, 2011, 09:13:26 am by spacebarsux »
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline camille07

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #21 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

Offline Assurbanipal

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #22 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

Pretend its wrapped?

wiith love and respect
A
« Last Edit: October 06, 2011, 09:07:36 am by Assurbanipal »
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%
2014 VL UD - 48
2015 VL 130 Moved to Triumeq

Offline WillyWump

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #23 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
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline Growler

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #24 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
“If loving someone is putting them in a straitjacket and kicking them down a flight of stairs, then yes, I have loved a few people.”

Offline Ann

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #25 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
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Offline phildinftlaudy

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #26 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
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline Miss Philicia

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #27 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.
"I’ve slept with enough men to know that I’m not gay"

Offline LM

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #28 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.

Offline Joe K

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #29 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

Offline Since2005

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #30 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
« Last Edit: October 08, 2011, 12:53:13 am by Since2005 »

Offline Bucko

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #31 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)
Blessed with brains, talent and gorgeous tits.

Blathering on AIDSmeds since 2005, provocative from birth

Offline komnaes

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #32 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)
« Last Edit: October 07, 2011, 05:49:51 am by komnaes »
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline BT65

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #33 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. :-\
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline OneTampa

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #34 on: October 07, 2011, 08:09:33 am »
Matty,

Thinking of you today.

Hugs
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline Andy Velez

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #35 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. 
Andy Velez

Offline Theyer

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #36 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
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline David_CA

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #37 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.  
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline odyssey

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #38 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
01/09/09- diagnosed HIV+
01/16/09   CD4-425    22%  VL- 32,415
11/09- started Reyetaz/Norvir/Truvada
03/10- stopped R/N/T
10/18/11   CD4- 328   20%  VL- 84,000
10/25/11   CD4- 386   22%
10/28/11- start Truvada/Reyetaz/Norvir
12/30/11  CD4- 523  29%
03/08/12  CD4- 503  31%  VL 57
07/02/12  CD4- 897  43%
08/31/12  CD4- 745  39%
12/27/12  CD4- 884  40%
03/28/13  CD4- 819  39%
07/19/13  CD4- 739  40%
10/17/13  CD4- 535  36%
01/16/14  CD4- 743  43%

02/14- switched from R/N/T to Tivicay/Epzicom because of CKD 3 suspected from tenofovir.

03/14- switched back to R/N/T due to severe nausea and inability to eat on T/E.
 
04/01/14 CD4- 898  42%   VL-

Offline AlanBama

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #39 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
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Jody

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #40 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
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline Matty the Damned

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #41 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

Offline Dachshund

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #42 on: October 20, 2011, 06:39:09 am »
Condolences apple that didn't fall far from the tree.

Offline BT65

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #43 on: October 20, 2011, 06:56:05 am »
Matty, so sorry about your nan.  At least she was spunky, right up to the end.  :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline Matty the Damned

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #44 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

Offline Jeff G

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #45 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 .  
« Last Edit: October 20, 2011, 10:35:54 am by jg1962 »
HIV 101 - Basics
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You can read more about Transmission and Risks here:
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You can read more about HIV prevention here:
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You can read more about PEP and PrEP here
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Offline Andy Velez

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #46 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.
Andy Velez

Offline denb45

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #47 on: October 20, 2011, 11:08:06 am »


thoughts and prayers Matty, glad your still around & posting  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Cliff

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #48 on: October 20, 2011, 04:45:09 pm »
Thoughts are with you Mr. M. Good poo and all.

Offline thunter34

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Re: Don't Leave Me This Way: Motor Neurone Disease
« Reply #49 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.


 :-*

AIDS isn't for sissies.

 


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