Day before my 59th birthday I find out I have ALS

[RamboLiberal]

Not looking for sympathy just some DU hugs. Gonna have a lot more time to spend here once I find an assisted living facility. Otherwise daytime TV might make me crazy.

I've been expecting this for a couple of months. Tried going to the state of denial. Then depression. Now acceptance. Of course there is fear what this f'in disease will do to me. Just hope the medical system will let me go out on my own terms when ready.

Love all of you here even when we fight!

[SugarShack]

1. (((hug))) and I'll say a prayer for you...

[Cal33]

161. This is for RamboLiberal. There are many new treatments for Alzheimers today. Just

Google "New Treatments for Alsheimers." I am writing
you here in the hopes that Rambo will see this post.
I've written the same post in msg. 158. Hope Rambo
gets to read one of the two.

[suninvited]

173. ALS is not Alzeimers.

Hugs for you RamboLiberal.

[pnwmom]

2. So sorry, RamboLiberal.

Sometimes life sucks.

:hug:

[Hassin Bin Sober]

3. .

That sucks.


:hug:

[gristy]

4. I'm sorry, man.

That sucks. :hug:

[eleny]

5. I'm so sorry RamboLib

[TwilightGardener]

6. I am sorry to hear this.

:hug:

[otohara]

7. Hugs

I have Post Polio and I've read the pain and symptoms are similar.
If you need a shoulder to lean on, PM me anytime.

[CBHagman]

8. I don't know what to say...

...except that I'm sorry, and I hope you'll keep coming round here.

[GreenPartyVoter]

9. I'm so sorry! Do you have medical coverage or finances that will help you out? I would be

just as stressed over the logistics, I think, as I would be with the diagnosis. :hug:

[RamboLiberal]

48. I'm fortunate I have a good esop

401k & Ira. That quacking duck will pay me 24 months. Also will get SSDI & medicare in 5 months even though ALS is automatic qualifier. And that is thanks to advocates and reps like late Sen Kennedy

[GreenPartyVoter]

125. Phew! I'm glad that you don't have to worry about that too. *hugs*

[Auntie Bush]

222. Thank God (or Kennedy lol) that you won't have financial problems.

Too bad all people don't have that advantage...they should have!
I wish you the best of luck Rambo and will send healing prayers your way.

Maybe they can help slow the process down a little. I too believe you should have the final say in your ending treatment. I plan on taking control of mine when the time comes...but it's still scary. :scared: :hug:

[w8liftinglady]

112. I have a lot of experience caring for ALS. Feel free to rant anytime

I'm sending healing thoughts your way.

[RamboLiberal]

199. Are you a caregiver for relative or work as one?

You could probably give me advice.

[stockholmer]

215. hugs, plus here is a really good blog on ALS, has many links to scientific studies

http://friends4eric.blogspot.com/

:pals:

[rury]

10. I'm so sorry and am thinking of you

Take care...life is often so cruel.
HUGS!!!!

[xfundy]

11. Is ALS what was known as "Lou Gherig's Disease?"

That does suck, but there have been tremendous gains made in med and therapies. Also, I, like you, I bet, once could never consider 59 "young." But it is young, and far too young.

If you don't mind, my advice, based only on my own life plan, is to make as many memories as possible while you can, and then play them back in your mind, in detail, when you need to escape whatever condition you find yourself in.

I wish you the best of everything, and the ability to recognize it in whatever measure it comes.

Wish I could do more.

[DrunkenBoat]

41. This might offer a bright spot: recent announcement that they'd figured out the cause:

August 22, 2011 (WLS) -- A new discovery about ALS could finally lead to an effective treatment.

ALS, also known as Lou Gehrig's disease, is a devastating illness that can kill within three to five years, but a new Northwestern medicine study could change that.

Researchers have found a common cause of all forms of ALS. They've pinpointed a pathway, and it's a damaged protein called ubiquilin 2.

The malfunction of this protein seems to lead to the accumulation of damaged proteins in the brain and spinal cord neurons of ALS patients. This interferes with the nervous system's ability to carry signals, resulting in the gradual loss of movements such as swallowing and breathing.

http://abclocal.go.com/wls/story?section=news/health&id=8320623

[Th1onein]

51. Hmmm...

You obviously can't take that protein in orally; the stomach juices would degrade it, of course. But I wonder if they could deliver it IV? Or, you could maybe find some supplements, that would increase the ability of that pathway to function properly, and retard the progression of the disease that way.

My heart goes out to you.

[sakabatou]

83. Yep

[bicentennial_baby]

12. Please read this...

I am going to PM you after I post this...and give you my personal email. My mother has ALS, diagnosed in 2007. My father had MS. I have more experience than most with neuro disease. I can be here to talk to you, hold your hand. I've got your back 100%, even if I don't know you.

You are now a PAL...I'm a PAL buddy for you. :)

[FourScore]

44. oops. delete.

[jbnow]

13. Damn! Well DU hugs to you

Hugs of all sorts! May the symptoms progress slowly... and god knows may some way to halt or cure it be found. I know there are some hard at work on it.

You say you've "been expecting this for a couple of months". Is that when the doctor first brought up the possibility or just your own suspicions of what was causing your symptoms? (If you feel like talking about it)

Hope you find a good on line support group

[hlthe2b]

14. and many many hugs you shall have!

:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:
:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

We'll be here for you and ready to fight along WITH you (not at you)...;)

[WCGreen]

15. Enjoy every minute...

[Bozita]

16. Sending big hugs and my very best vibes

A very important person in my life had supranuclear palsy, a first cousin of ALS.

OTOH, I'm looking forward to your posts.

I've always found your stuff to be well worth the click.

Best to you.

[spanone]

17. damn, hate that....

:grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug: :hug: :grouphug:

[riverwalker]

18. big hug

we are here for you.

[onestepforward]

19. Lots of hugs for you.

I'm so sorry.

:hug:

[msanthrope]

20. I am so very sorry, and I wish you peace, nt

[a kennedy]

21. have you read this??? and I know, such a small, teeny topic here...

http://thechart.blogs.cnn.com/2011/09/21/new-als-gene-mutation-discovered-embargoed-until-september-21-1200p-noon-et/ and I know, years off....but, some good news about ALS.... :hug: :hug: :hug: :hug: :hug: :hug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

[RamboLiberal]

200. Yep Patient 11 aka Ted is blogging on 2 als forums

Nice guy. Hope it continues regression.

[one_voice]

22. I'm so sorry to hear this!...

No sympathy from me...just a :hug: and vibes.

I have no advice, no magic words...but know that I will have an ear to listen, and a shoulder for you to lean on and arms to hug.

Peace to you!

[Greybnk48]

23. You can have all the hugs you want.

And you can have some sympathy too. No need to be tough, we're with you. :hug:

[cliffordu]

24. No words.

Send me a PM if you ever want to rant.

I can listen.

I will listen.

c

[Chorophyll]

25. So sorry to hear this.

Sending you good vibes and light. :hug:

[CaliforniaPeggy]

26. You'll be in my thoughts...

My neighbor had it for many, many years. It progressed slowly; we didn't even know he had it.

I wish the same for you...

But even more, I hope they find a way to at least slow its progression...

:hug:

As much as you can, live in the moment...

[Lydia Leftcoast]

27. Sorry to hear this, Rambo Liberal

Strength and courage to you in the coming years.

:hug:

[VenusRising]

28. Sending you vibes and lots of hugs.

:hug::hug::hug::hug::hug::hug:
:hug::hug::hug::hug::hug::hug:
:hug::hug::hug::hug::hug::hug:
:hug::hug::hug::hug::hug::hug:

[Marie Marie]

29. Sending you the biggest hug I have in me.

Please hang out here with us often - you have friends here who care.

[midnight]

30. Hugs.. I have been holding hope out hope for the stem cell

community to provide some relief to many medical ills. "Research at Stanford Medical School has shown that transplanted neurons grown from embryonic stem cells are able to form proper brain connections in newborn mice. The discovery, which demonstrates that stem cells can be directed to become specific brain cells, could be used to develop new treatments for nervous system diseases such as amyotrophic lateral sclerosis (ALS), as well as for spinal cord injuries. (HealthDay News, Jan. 19, 2010)http://www.missouricures.com/site/PageNavigator/Learn/StemCellBreakthroughs_092508#.ToPmwHMW9zx

[emilyg]

31. Hugs and prayers.

[mod mom]

32. Big hug from me!

:hug:

[Old and In the Way]

33. Sorry to read this, RamboLiberal....

My mom was diagnosed with ALS back in the late 90's. There have been some recent breakthrough's on isolating the gene's effected.

http://thechart.blogs.cnn.com/2011/09/21/new-als-gene-mutation-discovered-embargoed-until-september-21-1200p-noon-et/

http://www.cnn.com/video/#/video/bestoftv/2011/08/23/exp.am.gupta.als.treatment.cnn

Keep exercising and look into participating in some of these clinical trials if you can. Best of luck, my friend.

[The Second Stone]

34. I'm sorry to hear about this

Best wishes.

[ellisonz]

35. Be strong - RamboLiberal.

[frazzled]

36. Sending hugs as well

I don't know what it will do to you, either. And I pray you won't find out for a long time. But one thing to be positive about: "ALS does not affect the senses (sight, smell, taste, hearing, touch). It only rarely affects bladder or bowel function, or a person's ability to think or reason."

You may be twitching (please PM me if you want to know about implanting a baclofen pump to ease that; the son of friends of mine just had that done and it has given great relief)--but your mind will be clear as a bell, you'll be able to see, smell, taste, hear and touch all the wonderful things in the world, and you won't be pooping in your pants! So we expect to continue to hear from you here. Stay connected and enjoy the hell out of everything you can every day.

[Ilsa]

37. Hey, Sweetie, I'm so sorry.

:argh: Hang in there. Let's hope it is slow. :pals:

[devilgrrl]

38. My heart goes out to you.

:hug:

[MannyGoldstein]

39. Some with ALS can go for many years

Let's hope and pray.

[PoiBoy]

40. Hugs and tons of Aloha to you...

:hi:

[murielm99]

42. I am sorry to hear this.

We all want to help and support you. I am glad you will continue coming here to be with friends.

:hug:

[Demonaut]

43. hang in, I'm sure you know what to expect, are you a military vet?

and you're a woman? very rare disease any rarer still for a woman.
I lost a friend to this a year ago, I learned a great deal about internal strength.
I hope that you don't find my post offensive, I only wish you the very best.
please pm if I can help

[FourScore]

45. {{{Hugs}}}

We'll be here.

[PADemD]

46. Don't give up hope

Study finds pathway to ALS cure

http://abclocal.go.com/wls/story?section=news/health&id=8320623

[alp227]

47. Daytime TV? Can you please include Thom Hartmann in your lineup?

Maybe his show will keep your brain running as long as it can - 12-3PM Eastern weekdays, livestream.com/thomhartmann, and a bonus hour for Chicago listeners at WCPT at 3PM Eastern on Fridays. And keep enjoying your life and have dignity from others until your final minute.

[RamboLiberal]

71. oh gawd what if I get a Faux loving roomie?

Be my luck.

[alp227]

75. that's what smartphones are for n/t

[Mz Pip]

49. I've been thinking about you

I hope you will be able to take advantage of whatever new treatment may be out there. Seems like some progress is being made.

Take care. :hug:

[ThomCat]

50. Please do what you can to be well.

:hug:

[prairierose]

52. (((((hugs))))) .......n/t

take care

[lady lib]

53. Sorry...so sorry.

:hug:

[mahina]

54. Big hugs man

Here's ten hugs and a prayer for effective and safe treatment soon. Aloha Ramboliberal.

[Arctic Dave]

55. (((())))

[Warpy]

56. You get to turn down any treatment you don't want.

One thing ALS does is leave your mind intact. While that makes it a rotten disease all around, it also keeps you sharp enough to keep the guys with the ventilators away.

[Paka]

57. Lots of hugs to you.

I had a very dear friend die from ALS over ten years ago. I know a little of what you are facing. He was so brave and kept insisting to the end that he was going to beat it.

:grouphug: :hug: :grouphug:

[Lint Head]

58. My thoughts are with you and your family. DU is anonymous but this

situation makes us all realize we are the same no matter who we are and will experience in our own way the twists and turns of life. I have nothing but love to send and admiration of the strong soul you obviously are.

[Odin2005]

59. Oh no!

:hug:

[Divine Discontent]

60. no! so sorry to hear this RL! Please know many of us are pulling for you, and I will say a prayer

please hang in there and do your best to stay positive. And I totally agree with you about that last sentiment about the dang ALS, that you are allowed to deal with it on your own terms and things aren't decided for you.

A true hug from DD in Florida has been sent your way, I really imagined it, and I hope you get lots of them from all of us!

God bless

[kestrel91316]

61. Look at Stephen Hawking and be inspired. And keep an eye on medical developments - you

never know what might be just around the corner.

:hug:

[Bluenorthwest]

147. I'll add Charlie Mingus, David Niven, and Lead Belly

all of them had ALS.

[FrenchieCat]

62. Sorry to hear this......

Very sorry. :cry:

[Iwillnevergiveup]

63. First off

HAPPY BIRTHDAY, RAMBOLIBERAL! You have already been through a lot, and I wish for you peace, comfort, wellness and HOPE for many more years to come. Please drop by often and let us know how you are progressing, okay?

:hug: :hug:
:hug: :hug:
:hug: :hug:

[Ohio Joe]

64. Check out this article and talk to your doctor about it

Deadly Progression of ALS Reversed in an Amazing Stem Cell First

http://gizmodo.com/5844786/deadly-progression-of-als-reversed-in-an-amazing-stem-cell-first


Best to you!

[progressoid]

65. ...

[Zorra]

66. All hugs, all the time. So very sorry, RL.

:hug:

[eridani]

67. Do look up some of the many aids to stay connected on line-

--that are available these days. My BIL with ALS has found them sanity-saving.

Still, this really sucks :grouphug:

[TuxedoKat]

68. So sorry to hear this RL

what a thing to find out anytime but especially right before your birthday. Will be praying for you. Are there any clinical trials you could participate in? I see Johns Hopkins has an ALS Research Center but maybe there is another place closer to you. I hope the recent discoveries they've made about ALS will come up with some new treatments to delay or halt the progression of the disease. (((HUGS!!!))) Happy Birthday too. PM me if you ever want to talk. God bless you.

[RamboLiberal]

204. I'm going to try for UPMC

Cleveland Clinic has a more promising but a little too tough w/o a caregiver. Wish they would quit placebos with PALS and also open up stem cells to any PALS who wanted to try. We have very little to lose.

[MADem]

69. Keep mentioning it. I have a friend who is fighting the same fight.

We can not only sympathize, we can keep our eyes out for new medical advances and clinical trials you might be interested in joining.

How's your health at this stage of the game? Are you actively looking for a place to move to NOW, or are you still in the "down the road" end of things, and have the home health people come in to your place for now?

Make sure the facility you choose has good internet, or they will let you put in your own without any crap. Now, too, is probably a good time to start checking out adaptive equipment to keep you on the net when you have mobility issues. There's lots of stuff out there.

I wish you a snail's pace in the progression of the disease, and a cure sooner rather than later.

[RamboLiberal]

205. I need to move soon for my own safety and sanity

I already have a little local tech company I've dealt with on my job promising me to help setup what I need in future.

[MADem]

237. My friend uses a bindi pointer on his head. He does very well with it.

There's a lot of adaptive stuff out there; it's good you have an expert standing by, so you get the best stuff at the best price. The voice software out there has gotten a lot better too, which will be helpful if you start to have trouble with typing.

Try to avoid stress...I know, easier said than done.

I hope you have help--friends, family, etc. That can make a lot of difference.

You've got them online here if not nearby.

[polly7]

70. I'm so sorry.

Medical advances are being made every day, I'll be hoping for you and yours. :hug:

[Cali_Democrat]

72. Stay strong and keep positive

Live life to the fullest :grouphug:

[jwirr]

73. You gladly have my hug. Take care.

:grouphug:

[highplainsdem]

74. I'm so sorry. Sending hugs.

:hug:

[Liberty Belle]

76. Good luck to you. I have nerve damage, and find that high-dose B 12,

the sublingual (under the tongue) variety really helps when the pain gets too bad. Also ginger supplements to reduce inflammation have helped provide relief. I don't know if they work for ALS.

As many here have noted, they may be close to finding a cure, perhaps with stem cells, after isolating the protein that causes ALS.

Today the key with ANY serious disease or illness is to do everything you can to improve your general health and stay strong enough to live long enough for them to find a cure or an effective treatment.

My daughter was one of the first children to have radiofrequency ablation done for a heart arrythmia, which was previously treated with open heart surgery. It cured her. My husband was one of the early patients to have a kidney stone zapped -- and cured--with a procedure that was nonsurgical. These miraculous advances are happening every day now.

[catrose]

239. My husband mentioned the ketosine diet

I can't get a link for you right now, but I will later, if you're interested. Blessings,

[turntxblue]

77. So very sorry for your news

I wish I could say or do something to help. My husband has MS, and we're about to fly out of the country as medical tourists for stem cell therapy. This will be our second trip. He initially benefited considerably, but gradually worsened again...so we're trying it again, and hoping for more improvement. I tell you this only to point out that there may be help on the horizon, as the medical research field seems to be exploding. With improved technology, there appears to be a great deal of information and sharing of that information which possibly might help manage many illnesses that were once deemed hopeless. I'll be sending prayers for you.

[renate]

78. I'm so sorry you didn't get a different diagnosis

It must have been hard to maintain hope all that time and to live with that uncertainty. Now you know and it's not what you wanted to hear and I'm so sorry.

Since your brain won't be affected, I hope you can spend your time compiling some wonderful memories--both before and after your condition makes it difficult to do everything you're used to doing. You don't need a fully functioning body to have a good time. I mean, sure, it helps, but it's not a prerequisite.

Best wishes. Keep us posted on how you're doing. I'm so sorry you didn't get the diagnosis you wanted.

:hug:

[renate]

79. whoops--accidental dupe

Well, I guess I just meant what I said extra sincerely. :hug:

[jaysunb]

80. Soldier on !

Lyrics of "The Beach" by Oscar Brown Jr.

And now, I’ve landed on this beach
It takes sixty odd years to reach
As this generation of mine
is ordered on to life’s front line
The targets of a fusillade
that force us to think of God

Reluctantly we storm this beach
Advancing to fill up the breach
Created by that fallen corp
Of elders who charged here before
While we enjoyed our middle age
We moved from fire, we now engage

A withering barrage rakes this beach
Its bullets bear the names of each
Of those who set foot on these sands
Old general calendar commands
Advancing to a sure defeat
Without The option to retreat

We knew, before we hit this beach
The enemy that we besiege
Has ammunition for us all
Who has casualties must fall
Not one will manage to survive
Nobody leaves this beach alive

For those arriving on this beach
There is no prayer to pray or preach
To beg us off in any tongue
Since we’ve outlived dying young
And for surviving, in exchange
Now face the fire at point blank range

The witness we bear on this beach
Has only one lesson to teach
Here the carnage never stops
As everyday another drops
Some classmate, relative, or friend
Whose attack comes to abrupt end

So on into the breach my peers
Who knows how many weeks or years
Remain ‘til you and I are hit
As we inch onward bit by bit
We only know our lives will bleach
Eternally out on this beach

Fight on !!

[juajen]

81. I am so very sorry. Cannot possibly know what you are going through

right now, but do know that the human spirit is strong and we can manage much better than we think. I will pray for new developments that might make a difference. Strong advice is to get many comedic routines and laugh a lot. This will fill your soul and help tremendously with depression.

[Frustratedlady]

82. I'm so sorry to hear this. Are you a veteran? If so, you must apply for benefits.

A couple years ago, the military finally agreed there might be a connection and have made ALS one of the diseases they cover with 100% disability. If you are married and/or have children, they can also collect benefits.

My husband had ALS and I will be happy to answer any questions you might have or offer any help I can provide.

[RamboLiberal]

206. Not a vet

[Ken Burch]

84. It happened to a friend of mine.

And at about the same age.

His name was Joe Sonneman, and he was a long-time activist in Alaska Democratic politics(and was the Democratic nominee for the U.S. Senate the last time Frank Murkowski was re-elected to that chamber). He had to go out of state to get palliative care because he was slightly too young to be eligible for the VA hospital.

God(or whatever other cosmic forces you might or might not believe in)bless you.

[Ichingcarpenter]

85. Fight on my friend.. hug.... n/t

[JournalistKev87]

86. HUGS!

Stay strong--it's so fucking hard but even more important to do it.

Cut to you at 65. ;)

[DrunkenBoat]

87. They have recently discovered the cause, so that offers better hope of treatment or cure.

http://abclocal.go.com/wls/story?section=news/health&id=8320623

I meant to post this to you but posted it accidentally to another poster so i'm reposting in case you hadn't heard about this already.

[pacalo]

88. I'm so sorry, RamboLiberal.

:hug:

[KT2000]

Sending hugs

your way....:hug:

[KT2000]

89. Sending hugs

your way....:hug:

[area51]

90. {{{{hug}}}}

:hug:

[Dragonfli]

91. Man that is some really bad news, I am so sorry...

Hugs help, they really do.
As far as the medical system letting you go out on your own terms, that is a hard battle.

I hope you win whatever your terms are.

:hug:

[spooky3]

92. +++++++++++ >>>>>>>> >++++++++++ >>>>>

[JI7]

93. hugs

:hug:

[Festivito]

94. (Hugs) To be applied liberally.

And, hope for a cure.

[democrank]

95. As you can see, a lot of people care.

Hang in there. My best to you...

[PCIntern]

96. Words cannot express my upset and concern...

I hope you have good doctoring and support: advances are being made - I'm just speechless. Keep strong.

PC

[malaise]

97. Happy Birthday

:grouphug: Enjoy life!

[AtomicKitten]

98. The best advice I can give is plan ahead and you clearly are on top of that.

Tough break. Heartbreaking, in fact.

Happy Birthday. Enjoy every day.

[ProfessorGAC]

99. Good Vibes To You

I have MS, which is bad enough. So, i can empathize somewhat. Take care of yourself.
GAC

[irisblue]

100. (((hugs)))

best wishes for you..((hugs again))

[era veteran]

101. Damn!

We will send good thoughts your way.

[harun]

102. Hug

[cate94]

103. Hugs to you.

I wish there was more that I could do.

:hug:

[Enthusiast]

104. Sorry to hear of your illness.

I hope you can find the help you need.

[JCMach1]

105. Sorry to hear that...

and my hopes for the best as it relates to your situation...

[babylonsister]

106. Love you more, RamboLiberal.

So sorry you got this crappy news; please do hang with us here, and keep us posted. :hug:

[DesertFlower]

107. so sorry. sending positive thoughts.

[barbtries]

108. ...

:hug:

[madokie]

109. A great big ole Okie hug for you

The cyber kind

[BumRushDaShow]

110. ((HUG))

:hug:

[Major Hogwash]

111. And the fight goes on . . .

For a better tomorrow in America.

"I have a dream . . ."

We all do.
And this is why I will never take a step backwards, or accept the "status quo" as the best we can be in America.
You, our kids, our friends, our relatives, our family members, our neighbors, our fellow citizens, all deserve better than what we have now, today.
And believe me, brother, I'm not going to stop until they start throwing dirt over me, too.

[lunatica]

113. (((( hugs )))))

I'm sorry

[salin]

114. (((RamboLiberal)))

many, many hugs sent.

[spinbaby]

115. Hugs

I'm in the Pittsburgh area. If there's anything I can do to help--errands run, scrabble partner, beer delivery etc., let me know. Seriously.

[RamboLiberal]

208. Thank you spinbaby might take you up on it

What part of the Burgh? I live in McKeesport. Don't know yet what facility I will choose.

[tpsbmam]

116. Damn! Damn! Damn! Hugs galore to you, RL. I'm encouraged

by what I've read lately about ALS and some of the links here.

A friend recently gave me the longest, strongest, warmest hug I'd ever gotten. I wish I could physically pass it on to you, but know that I'm giving you that same hug now.

:hug:

[Bragi]

117. Thanks for sharing that

I send very warm greetings, positive thoughts and best wishes to you and yours from north of the border.

Your openness here helps me sort through a personal decision I've been pondering, which is: whether to retire now (I'm 61) or wait a few more years, make a few more bucks and defer plans for my wife and I to travel, move to the country, enjoy ourselves more, etc.

I'm thinking more and more that now is the time to do that, cause you really don't know what life will serve up.

So thanks for sharing. I look forward to your continued contributions to DU.

[RamboLiberal]

209. That is one of the injustices Repukes & fools are pulling off

Continually trying to push back retirement ages.

[MissDeeds]

118. So sorry RamboLiberal

Sending out lots of hugs and good vibes.

:hug: :hug:

[Vinca]

119. I'm so sorry. Why do such bad things happen to such good people?

:hug:

[yellerpup]

120. We are better fighters with you in the mix.

Wishing you a much better outcome than anyone expects. And, hugs. Lots of hugs. :hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug::hug:

[Darth_Kitten]

121. Hugs!

:hug:

[blue neen]

122. Rambo Liberal,

:hug:

We are fortunate to be in an area of the country where the medical care is very good...they come up with new advances everyday.

I hope your doctors are able to come up with a treatment plan that will keep the progression of this very slow.

My heart goes out to you.

[xchrom]

123. Wow. You have my best wishes and thoughts.

& also to your family & your friends.

[crim son]

124. Sending lots of hugs, RamboLiberal.

You will be in my prayers. And remember, if you need sympathy, you can find it here. ((((((((((hugs))))))))))

[mainstreetonce]

126. I know a long term survivor

Please have hope. Like Steven Hawking, I have a friend who has survived. 40 yr now. He has not lost speech or need assistance with breathing. He has been in a wheelchair for about 34 years, but lives a very positive, happy life.

Please don't give up. Mental attitude is everything.

[12AngryBorneoWildmen]

127. Well, your Pirates beat out my Cubs for 4th place.

My mom suffered through an ALS related malady. It was rough for her (understatement of the year), but she did still smile even towards the end. From the world of the eerie; today is 2 days before my 59th birthday. "Own terms"-stick to it. All the best

[PA Democrat]

128. Love you back, RamboLiberal. I had been hoping the news would be better.

:hug:

[FailureToCommunicate]

129. Daytime TV WILL make you crazy. Stay here instead and continue to enlighten us

Is there a book or memoir inside you?

I also am finding that exercise improves almost everything life throws at us.

http://www.als-mda.org/publications/everydaylifeals/ch8/



Wishing you ongoing strength, Rambo.

:patriot:

[SnowCritter]

130. Sending good thoughts your way

:hug:

[Bunny]

131. I'm sorry to hear this.

:hug: I hope you get the best quality of care for as long as possible.

[secondwind]

132. DAMN! Sending you a HUGE one, Rambo. and if you ever need anything, just

give a holler here on DU, I will hopefully read it and help you in any way AT ALL. I mean it.

[hue]

133. Rambo here's a little hope-->stem cells!

http://www.cnn.com/2011/09/28/health/early-als-trial-results-encouraging/

There are always breakthroughs in medical technology. Be aggressive in achieving the best and safest care for Yourself!
More clinical trials like this are popping up! This is a safe procedure!! Perhaps You can qualify for a clinical trial like this.
You have to search & never give up!!

PS: HAPPY BIRTHDAY! Wishing You happiness, health, prosperity & love this year & always!!

[ThatsMyBarack]

134. ....

:hug:

[Octafish]

135. No matter what, you always keep up the good fight, RamboLiberal!

Because that is the kind of person you are.

It is an honor to be on your side.

Love ya, Sister!

[K8-EEE]

136. Hugs to you

I'm so very very sorry! Love, strength, healing vibes sent your way.

[TheCowsCameHome]

137. I am sorry to hear that, RL

All the best to you in your coming challenges.

[WI_DEM]

138. hugs and support this way too.

[TygrBright]

139. RamboLiberal, I greatly appreciate being able to share DU with you.

You have a community here. I'm here for you, WE are here for you. ::gazes up at long, long thread of hugs and support with a grin::

This is a fight you'll need all your resources to fight. You have to do all the hard stuff. But we're here. Ask for help on the easy stuff. If there's something you need, ping us. We'll find a way. Even if it's just listening and responding and friendship, that stuff can help and we've got it in stock 24/7.

Fight on, fight hard, we're with you.

appreciatively,
Bright

[intheflow]

140. I'm sorry to hear this, RL.

My sister went out with a debilitating form of MS that left her mind locked in her non-functioning body not unlike ALS. It wasn't an easy way to go. You have the biggest hug I can send your way - for strength for your journey. :hug:

[raouldukelives]

141. So sorry to hear that

Sending good thoughts your way.

[alfredo]

142. There are two great lessons we can teach the younger generations:

how to live and how to die.

Stay strong brother

[BobbyBoring]

143. OH NO!

My heart goes out to you. ALS is something I have way to much experience with as it claimed both my mother and mother in law.

One bit of advice. Spend as much time as you can working on manual and mental dexterity. Type, do puzzles like Sodoku, etc.

Sorry I can't add more but my thoughts are with you.

[blm]

144. Hey, I thought fighting was your favorite part? You've got my hugs, RLib, anytime.

.

[KoKo]

145. RL.....Hugs and VIBES to you!

((((HUGS)))) and (((((GOOD VIBES))))

So many new discoveries out there..and so many good thoughts coming your way...you're gonna get through this.
:grouphug:

Hang in There! and get a ROKU box so you don't have to watch the crap on US TV...International News/Documentaries/Current TV with Keith...good stuff. (it's been a lifesaver for me mentally.. and the remote is an easy clicker not requiring complicated fussing)


K.

[joeybee12]

146. Sorry to hear that...hear are some hugs...

:grouphug:

[rhett o rick]

148. My best. I hope you have a good doctor that will understand your wishes. nm

[Taverner]

149. That sucks. Take care and best wishes...

:hug:

[SHRED]

150. hug

:hug:

[Sheepshank]

151. Sending back liberal amounts of love and hugs

Somethings just don't matter on the grand scale of things. Other things become more poingnant. Applying liberal amounts of love to your fellow man is one of those.

I admire the way you posted your news and will hold out for some continued upgrades in the research and implementation of new processes.

(((((((((((((((((((((HUGS)))))))))))))))))))

[defendandprotect]

152. So sad to hear --

Overall, it seems that what corporate America is best at doing is making

citizens ill --

And agree with you re "your own terms" -- I think the majority of us undertand

that need.

:hug: :hug: :hug:

[joanbarnes]

153. Love you too, RamboLib.

[abq e streeter]

154. My heart ,thoughts, and prayers are with you.I wish I had something more profound to say...

[snappyturtle]

155. Hugs,,,,today, tomorrow and way out in the future! Hoping you get a

great room-mate who becomes a good friend but, no matter what, you've got a gazillion friends on DU 24/7!

:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

[stillrockin]

156. Sending hugs your way . . .

[TBF]

157. (((hugs)))

I have a chronic illness as one, but one that is typically slower acting (well, as long as the meds work). I will be thinking of you.

[Cal33]

158. There are new treatments for Alsheimers today. Just Google:

"New Treatments for Alsheimers."

The very first article says: "There are new treatments for Alzheimers today with proven results."
Don't give up hope so fast. There are many, many articles.

All the best to you, plus a hug.

[RamboLiberal]

210. This is Lou Gehrigs disease not Alzheimers

[OnyxCollie]

159. I'm sorry.

My uncle died from ALS.

[millijac]

160. sending hugs...

and prayers that your life be filled with love and laughter and the knowledge that you fight the good fight. In your name and in the names of millions of others, we will fight on. Blessed be.

[OhioChick]

162. I'm sorry to hear this...

Don't give up hope though, as new research, treatments and gains are being made.

:hug:

My thoughts are with you.

[mainer]

163. Courage, friend! And a question.

There are some studies postulating a link between ALS and a chemical called BMAA, associated with algal blooms in ponds. Have you, by chance, lived on the downwind side of a body of water? There is a startling cluster of ALS cases in New Hampshire, all of them residents near ponds.

http://www.ncbi.nlm.nih.gov/pubmed/19254284

If there is a link, it suggests possible new approaches to treatment.

[RamboLiberal]

212. Nope though as a kid we spent the summers at Conneaut Lake

Not far from swamp & spent time walking old RR tracks that cut through swamp.

But then I also got bell rung a few times going off horses & 27 years martial arts.

[RedCloud]

164. best wishes and some glass factory advice.

Hi Rambo,

For several years I worked at a glass factory and one of the marketing ploys we used was our glass does not cause ALS like their canned products do. This was many years ago but the toxicity from canned products was shown to be eventually harmful.

[KamaAina]

165. Assisted living facility? I won't hear of it!

Get thee to the nearest Center for Independent Living pronto. Their job is to help you stay independent as long as possible. PA has some of the best centers in the country. Find yours here:

http://www.ilru.org/html/publications/directory/pennsylvania.html

Also, do avail yourself of DU's Disability Forum:

http://www.democraticunderground.com/discuss/duboard.php?az=show_topics&forum=250

:loveya:

[kiranon]

166. Many hugs and look forward to more DUing with you.

[libodem]

167. Sending hugs

Vibes and prayers.

[Ikonoklast]

168. Here's to seeing you post on your 80th birthday.

Stay strong.

You have friends.


:hug:

[Arugula Latte]

169. I'm so very sorry.

ALS has got to be one of the hardest diagnoses to get. I f*ing HATE that disease!

Hugs to you ... :hug: :grouphug:

[DFW]

170. Daytime TV is the quicker death

To your mind anyway.

Denial is useless, depression is understandable, acceptance is the most difficult part. I've seen enough relatives and friends do it.

BUT....I've also seen some medical miracles (including a few performed on me, otherwise I'd be playing chess with the Reaper
by now). So stick around while you can, and maybe medicine will come up with a miracle or two on your field. "It ain't over
til it's over." And that doesn't apply to just baseball.

[Altoid_Cyclist]

171. Nothing that I say can make this news any less devastating.

All that I can do is send you a DU hug and let you know that a lot of people really care about you.

:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

Keep fighting with everything that you've got. S. Hawking has shown that time lines aren't always 100% correct.

[Crunchy Frog]

172. I know this is a long shot, but you might want to consider

getting evaluated for Lyme disease. It can mimic ALS, and there have been people with apparently advanced cases of ALS who got better under aggressive antibiotic treatment for Lyme.

And I know it's very much a long shot, but you might as well cover all of your basis.

Best wishes to you.

[orleans]

174. sending you a warm embrace. sorry to hear this news. n/t

[Horse with no Name]

175. ,,,,,,,,,

http://www.freewebs.com/vindy/


:grouphug:

[CakeGrrl]

176. Good thoughts to you! -nt

[PRETZEL]

177. You know, something's got to give here,

there's been too many great people here who don't deserve this.

This blows,

[H2O Man]

178. Sorry to hear this.

You have a strong mind. Stay there.

Your friend,
Pat

[Granny M]

179. (((( RamboLiberal ))))

So sorry about this terrible news. I hope you find everything you need easily. This will be a hard journey. Hugs from Ireland.

[blueamy66]

180. more hugs coming your way

:hug:

[soleft]

181. Best wishes for you

[RebelOne]

182. I had to Google ALS, as I had no idea what it was.

I am so sorry because it seems like a horrific disease.

[Liberal_in_LA]

183. ...

:grouphug:

[benld74]

184. Hugs and prayers from a 14 yr MS patient

[dotymed]

185. The best to you

:pals:

[livetohike]

186. Sending you hugs, positive vibes and strength to deal with

this diagnosis :hug:. I'm up here next to Cook Forest State Park....I come to Monroeville frequently. If there is anything I can help with, please PM me.

Hang in there! We are the same age....we know how to fight!

[WinkyDink]

187. {{{RamboLiberal}}} You take care. We're here for you and with you.

[Playinghardball]

188. Here is something to read about ALS trail results

Not a cure yet...

http://www.cnn.com/2011/09/28/health/early-als-trial-results-encouraging/

[gateley]

189. Hug, here!

:hug:

And I know those of us who don't see this thread would want to join in -- :grouphug:

I'm glad DU is here for you, and for all of us for that matter.

I'm so sorry this is happening to you. :(

[radhika]

190. ((((HUGS)))) and all the healing energies I can muster! n/t

[unapatriciated]

191. I found this article regarding a trial treatment in my area.

It looks promising.

Patient, doctors encouraged by ALS trial:
(CNN) -- A little more than two years ago, Ted Harada felt his left leg weakening, and he found himself quickly running out of breath. Doctors first thought he had asthma, but in May 2010 they told him he probably had ALS, or Lou Gehrig's disease.
In August 2010, doctors confirmed Harada, then 38, had the fatal disease, and he knew it was progressing........

Harada joined a clinical trial at Emory University in Atlanta, where doctors were injecting neural stem cells -- the precursors to nerve cells -- into the lower spinal cord of ALS patients.
Before the procedure, Harada walked with a cane and would get winded just by walking to the mailbox. He had to quit his job as a manager for a shredding company. He was so tired he couldn't play with his three children. He was too weak to pick up his youngest child. He couldn't even open a Ziploc bag.
Harada hoped the treatment would help, but he didn't expect it to. However, two weeks after getting the stem cell injections in March, he says he started to feel better.

http://www.cnn.com/2011/09/28/health/early-als-trial-results-encouraging/

sending hugs your way.

edited to add: It looks like this has already been posted up thread. If by some chance you can get into this trial you have a friend in Atlanta.

[Solly Mack]

192. Hugs!

Lots o'hugs.

:hug:

[Tumbulu]

193. hugs

and thanks for letting us know.
More hugs.

[tropicanarose]

194. (((Hugs))) and loving thoughts and prayers to you, Rambo.

[mimitabby]

195. damn

this is a tough one. you have to fight it with all you have.

[DainBramaged]

196. I can send you nothing but love and hope, there are no words I know to comfort you

Sorry isn't appropriate. I know you will be strong.


All my best


DB

:loveya: :hug: :cry:

[LoisB]

197. RamboLiberal

Here is a BIIIIIIIG HUG! Give the fight your best shot and don't EVER give up.

[RamboLiberal]

198. Thanks all it really really means a lot to me

[closeupready]

201. Hugs to you!!!

:hug:

[mstinamotorcity]

202. much love

to you and you can have a virtual hug from me anyday.:hug: :hug: :hug:

[slay]

203. :hug:

screw daytime tv - some cool dvd boxsets might be nice though. let me know if there is any show (or movie) in particular you would like to see and i will get to to you. :hug:

[NNN0LHI]

207. Sorry to hear the sad news

:cry:

[Firebrand Gary]

211. Valerie's letter to V seems to express my thoughts. (V for Vendetta)

It is small and it is fragile, and it is the only thing in the world worth having. We must never lose it or give it away. We must never let them take it from us.

I hope that - whoever you are - you escape this place. I hope that the world turns, and that things get better.

But what I hope most of all is that you understand what I mean when I tell you that even though I do not know you, and even though I may not meet you, laugh with you, cry with you, or kiss you: I love you.

With all my heart.

I love you.

-Valerie."

~ Firebrand

[uppityperson]

213. well that sucks. best wishes to you, hoping things go slowly for you.

best wishes

[WheelWalker]

214. Blessings.

:hug:

[blackspade]

216. Sorry, That is sucktastic news.

:hug:

[UpInArms]

217. you know, dear RamboLiberal -

I am so sorry that I have never told you how very much I love you -

but today, I'm going to start



and, just know that every time I have seen you post, my world has been better

sometimes, I just hate the anonymity of the internet

[yardwork]

218. Hugs to you. I always enjoy your posts.

[Yo_Mama]

219. Consider ceftriaxone - this trial should be currently enrolling

http://clinicaltrials.gov/ct2/show/NCT00349622?term=ALS&recr=Open&rank=9

Bad part - you get shots. Good part - it just may work. I have taken ceftriaxone for a neurological disease with motor problems.

You have a massive, warm hug from me!

This should be a current list of all ALS trials, in case you are interested.
http://clinicaltrials.gov/ct2/show/NCT00349622?term=ALS&recr=Open&rank=9

You could also try finding a doctor who will set up a compassionate trial for you, if you want to try the ceftriaxone, or talk to a neurologist who is willing to try it on an experimental basis with you. I have no idea of how the current phase III is going, but it's worth trying it for a month or two to see if your symptoms improve as long as you can tolerate that drug.

I did it for two years - my diagnosis is uncertain currently. But I don't have motor disability and I had no bad effects from the ceftriaxone. It may not work at all for you, but give it a think.

Another site if you are interested in an ALS trial is this one:
http://www.alsconsortium.org/

[Smarmie Doofus]

220. Wooosh.

Scary stuff.

Here's my hug::hug:

Don't know that much abut ALS. Other than that people I know personally ( I'm a year younger than you) are getting it now and it's generally real bad news.


Look forward to seeing your intensified presence here in the months ahead.

[Glimmer of Hope]

221. I am sorry. We are here for you!

[ZombieHorde]

223. ...

:hug:

[robertpaulsen]

224. Hug right here, RamboLiberal.

:hug:

[riderinthestorm]

225. Do you remember Raquel Welch in the teevee movie "Right to Die"?

I'm frightened for you. That movie still haunts me almost 25 years later. I must say though that her performance, like Farrah Fawcett's stand against domestic abuse, was powerful and courageous. Somehow I believe Rambo Liberal will be the "voice" of courage, guiding all of us on DU on this journey. Please know you will not be alone as your DU family is there for you.

I am so sorry to hear this. We've got your back (and your arms, legs, head and mind). Peace.

[femmocrat]

226. I'm very sorry, RamboLiberal.

I hope you have many, many good days ahead. :hug:

[LaydeeBug]

227. HUGS TO YOU!!!!

:grouphug:

[KeyserSoze87]

228. So very sorry to hear that.

My heart goes out to you.

:grouphug:

[NikolaC]

229. I'm so sorry

Best wishes and a BIG :hug: !

[The Wielding Truth]

230. Big bear hugs for you.

[Laura PourMeADrink]

231. love you 2.....just remember in this day and age, nothing is as

bad as it sounds. You are SO funny with your "Love all of you here even when we fight"

Can't wait to spar with you every chance I see your name !

[Alameda]

232. Hugs Hugs Hugs Hugs Hugs Hugs Hugs....hope they help,

may your suffering be ease. I just shepherded a friend....it's not easy, but it sounds like you have a good handle on it.

[me b zola]

233. Many hugs and warmest wishes to you

I have many thoughts and wishes for you, but as my posting history shows, i so often cannot convey properly what I want to say. Just know that I wish you the best and will keep you in my thoughts and prayers.

[CoffeeCat]

234. Thinking of you...

...dear heart.

((((big hugs))))

[MrMickeysMom]

235. RamboLiberal.... I think we don't live all that far from each other...

Please PM me if I can be of any help, as this relates to my profession.

I want to help.... meanwhile, here's a BIG hug :hug:

[Vehl]

236. so sorry to hear this

:hug: I know you will stay strong.

[Pithlet]

238. (((Hugs)))

:grouphug: I remember your earlier post, and I'm sorry to hear this news. I'll keep you in my thoughts and keep up hope for more new developments for ALS. I recently read a couple that a few already mentioned in this thread.

[Honeycombe8]

240. OMG. I'm so sorry. :hug: I'll have to read up on that.

I hope it's possible that it will turn out not to be as bad as you think it might.

Life just isn't fair sometimes. I hope your insurance covers this (and you have insurance).

Focus on what you have that's good in your life, whatever it may be. Keep us posted.

[vanboggie]

241. Hugs to you RamboLiberal

DU always comes through. I'm so sorry you've received that diagnosis, but as so many have said above we are here to support you in any way we can.
Take a deep breath, live and love every moment and do check out those clinical trials, especially since it sounds like the researchers are gaining on this disease.
Best wishes and I join in the :grouphug:

We're here for you 24/7!

[astral]

242. Don't lose hope. There are things that you can do that might help you...

and won't hurt you to try. Here is a link to a much-despised website on DU, but hey, don't throw the baby out with the bathwater and don't shoot the messenger, please.

Food for thought:
http://www.naturalnews.com/028734_ALS_remedies.html

(((((HUGS)))))))

____________________
Quote from the last paragraph of the article only:

Lastly, it is thought that people with ALS have too much acid in their system, often due to a poor diet. It is, therefore, recommended that they follow an alkaline diet. This would necessitate eating a mostly raw diet consisting of fruits and vegetables, preferably organic. All meats, dairy products, refined grains, starches, and unhealthy oils should be eliminated, along with processed foods, junk foods, and fast foods.

[BlueDemKev]

243. (HUG).....

and HAPPY BIRTHDAY!

...hey listen, you take one day at a time and ENJOY EVERY MOMENT. Remember Lou Gehrig's eternal words...."Today I consider myself the luckiest man alive."

[Starbucks Anarchist]

244. I'm so sorry to hear this.

:hug: :hug: :hug:

[Art_from_Ark]

245. Hang in there!

:thumbsup:

[spiderpig]

246. Oh RamboLib...

I've known two people who have faced what you're going through.

Stay strong. Keep up the fighting attitude. We need you, buddy!