ALS, Lou Gehrig's Disease - Page 2

DanaC · 01-27-2009, 05:57 AM

Shit V. That's awful, absolutely awful. What a nightmare for all concerned.

No, you're right, it won't be 'ok'. But saying it is just a way of trying to help and comfort. Don't be hard on yourself for wanting to help and give comfort, V, it's who you are. Everything's heightened, the little phrases that slip from our mouths unbidden in times like that, aren't always right for that exact circumstance. A thousand other times those words will be the right thing to say, rather than just the instinctive thing *smiles*

wolf · 01-27-2009, 09:07 AM

Quote:

Originally Posted by BigV

I have put my foot in it by saying it will all be ok. It will not be "ok".

Of course it won't, not immediately anyway, but that's what you're supposed to say. And like any of life's tragedies, we adapt, and move on.

sweetwater · 01-27-2009, 10:47 AM

Wow. I am a twin, also, so this hits me double. And genetically vicious diseases are, at this point, impossible to defend against. Yes, there is one in our family, also. Cards, photos, and recordings were one way distant family members were able to remind our ailing beloveds that they were being held in thoughts. Perhaps son could do that? I'm sorry for this sorrow. Keep in touch.

BigV · 07-09-2009, 11:53 AM

An update:

M had a doctor's appointment yesterday. It was very grim. The doctor prefaced his remarks by saying it was going to be an unpleasant conversation, and gave people the chance to leave the room. No one did. He was right.

M has been in a wheelchair for a couple months now, but her breathing is no longer strong enough for the CPAP machine to help her, so a trache tube has been suggested. Likewise, her swallowing ability is very weak so a feeding tube has also been suggested. Darkest of all, the doctor said a decision on these items, and hospice care needed to be made this week. Hospice care?!? ffs.

Tink's taking tomorrow off to go to see M, just hang out, a little sister time. I've asked Tink to send along my love. I'll forward all your support and best wishes in the same psychic package.

Sheldonrs · 07-09-2009, 12:34 PM

Same advice as earlier, If you can, contact the ALS foundation ( www.alsa.org ). They have good people working for them and can put you in contact with support groups and any equipment supplies you may need and advice on home aides, etc.

I'll keep you all in my good thoughts and prayers.

footfootfoot · 07-09-2009, 01:43 PM

V this disease can progress at varying rates with different people. My FIL died about two days after we were told to contact hospice. (He was living with us) He was able to breath, didn't like the cpap, and had had a feeding tube for a couple of months. It could be two months or it could be two days.

I'm sorry to hear the news. Take Sheldon's advice and call the ALS people.

BigV · 07-09-2009, 02:42 PM

She made today's paper.

Quote:

MOUNT VERNON — For Marilyn Leer, it all started with a twinge in her thigh.

“It just felt different,” she said. “Walking up stairs or running, it just didn’t feel normal. I really didn’t give it much thought. I really didn’t think about what it was or what it could be.”

That twinge, however, persisted. Months later, Leer, a nurse at St. Joseph Hospital in Bellingham, decided she needed to see a doctor. The diagnosis was that the 45-year-old Leer was suffering from some sort of nerve damage.

Both she and her husband of 24 years, Jeff, believed they had dodged a bullet.

You see, a disease has stalked Marilyn Leer’s family for years, claiming the lives of nine family members.

As time went on, it became apparent the Leers hadn’t dodged that bullet.

Though the disease is ravaging her body, her spirit remains unbowed.

Quote:

“Obviously, it can be a very scary process,” admitted Marilyn Leer. “I can’t cut up my own food. I can’t get myself ready for bed. Honestly, though, because of all the support I get from family and friends, I still have a great quality of life.”

@Sheldonrs and footfootfoot, we (they) have been in contact with the ALS Foundation for a long while. Sorry I hadn't made that clear from the op. I thank you all for your support. It makes a difference, even though you may not see it.

Sheldonrs · 07-09-2009, 02:59 PM

Quote:

Originally Posted by BigV

@Sheldonrs and footfootfoot, we (they) have been in contact with the ALS Foundation for a long while. Sorry I hadn't made that clear from the op. I thank you all for your support. It makes a difference, even though you may not see it.

No problem. I just wasn't sure if you'd seen the 1st post. *HUGS*

BigV · 07-09-2009, 03:10 PM

Thank you.

Queen of the Ryche · 07-09-2009, 03:58 PM

Holy wow. Why didn't I see this thread before? Give Tink and M my healing thoughts too. (Full plate, huh?)

Clodfobble · 07-09-2009, 10:27 PM

Send along the Fobble family's best wishes too, V. I hope Tink and the rest of her extended family are holding up well.

BigV · 07-16-2009, 02:38 AM

The support from all of you is a welcome blessing and I thank you sincerely. I also send along grateful thanks from Tink.

M will be having surgery on Monday. She's having an operation to help her breathe, a tube (tracheotomy?), and Tink says the doctor's description was very scary about how M's body must adapt to this new breathing regimen, or else. She's very weak, and Tink fears that M may not survive the surgery.

Goddammit. I've been sitting on this news for hours. I don't know how to communicate to all of you the crushing fear and sadness that comes with helplessly watching a loved one suffer. Please let me be clear, this is in no way a poor me situation. I love Tink. I love M. I love her husband and their children. I love her father, my father-in-law. They are all suffering and all I can do is watch.

If it were for a larger purpose I could rationalize away the pain. If my child were suffering but there was a lesson to be learned cemented by the pain, I could watch that. I could watch that knowing that the suffering I witness was like the smoke and sizzle of a branding--elements that accompany the introduction of an important lesson, one that literally leaves a mark.

But what is the lesson of ALS? You have bad luck in the genetic lottery, you suck? Yeah. That's instructive. I am lost, and they are lost.

TheMercenary · 07-16-2009, 08:43 AM

My thoughts and prayers go out to you V. I know what you are going through is a difficult one? I have been there. You have no control. Best wishes to all.

classicman · 07-16-2009, 09:04 PM

sorry V - I feel your helplessness and know all to well the feelings you are experiencing. If there is anything...

Alluvial · 07-16-2009, 09:38 PM

All of y'all are in my thoughts, V. I lost a grandparent to this.

01-27-2009, 10:47 AM	#18
sweetwater lives inside a Mobius strip Join Date: Dec 2007 Posts: 1,120	Wow. I am a twin, also, so this hits me double. And genetically vicious diseases are, at this point, impossible to defend against. Yes, there is one in our family, also. Cards, photos, and recordings were one way distant family members were able to remind our ailing beloveds that they were being held in thoughts. Perhaps son could do that? I'm sorry for this sorrow. Keep in touch. __________________ I knew I shoulda taken that left turn at Albuquerque! - Bugs Bunny

07-09-2009, 11:53 AM	#19
BigV Goon Squad Leader Join Date: Nov 2004 Location: Seattle Posts: 27,063	An update: M had a doctor's appointment yesterday. It was very grim. The doctor prefaced his remarks by saying it was going to be an unpleasant conversation, and gave people the chance to leave the room. No one did. He was right. M has been in a wheelchair for a couple months now, but her breathing is no longer strong enough for the CPAP machine to help her, so a trache tube has been suggested. Likewise, her swallowing ability is very weak so a feeding tube has also been suggested. Darkest of all, the doctor said a decision on these items, and hospice care needed to be made this week. Hospice care?!? ffs. Tink's taking tomorrow off to go to see M, just hang out, a little sister time. I've asked Tink to send along my love. I'll forward all your support and best wishes in the same psychic package. __________________ Be Just and Fear Not.

07-09-2009, 12:34 PM	#20
Sheldonrs Master Dwellar Join Date: Oct 2006 Location: Los Angeles, CA Posts: 4,412	Same advice as earlier, If you can, contact the ALS foundation ( www.alsa.org ). They have good people working for them and can put you in contact with support groups and any equipment supplies you may need and advice on home aides, etc. I'll keep you all in my good thoughts and prayers. __________________ Laugh and the world laughs with you; cry and the world laughs AT you. Last edited by Sheldonrs; 07-09-2009 at 12:50 PM.

07-09-2009, 01:43 PM	#21
footfootfoot To shreds, you say? Join Date: Aug 2004 Location: in the house and on the street-how many, many feet we meet! Posts: 18,449	V this disease can progress at varying rates with different people. My FIL died about two days after we were told to contact hospice. (He was living with us) He was able to breath, didn't like the cpap, and had had a feeding tube for a couple of months. It could be two months or it could be two days. I'm sorry to hear the news. Take Sheldon's advice and call the ALS people. __________________ The internet is a hateful stew of vomit you can never take completely seriously. - Her Fobs

07-09-2009, 03:10 PM	#24
BigV Goon Squad Leader Join Date: Nov 2004 Location: Seattle Posts: 27,063	Thank you. __________________ Be Just and Fear Not.

01-27-2009, 05:57 AM	#16
DanaC We have to go back, Kate! Join Date: Apr 2004 Location: Yorkshire Posts: 25,964	Shit V. That's awful, absolutely awful. What a nightmare for all concerned. No, you're right, it won't be 'ok'. But saying it is just a way of trying to help and comfort. Don't be hard on yourself for wanting to help and give comfort, V, it's who you are. Everything's heightened, the little phrases that slip from our mouths unbidden in times like that, aren't always right for that exact circumstance. A thousand other times those words will be the right thing to say, rather than just the instinctive thing smiles

07-09-2009, 03:58 PM	#25
Queen of the Ryche is fleeing the scene Join Date: Apr 2005 Location: Beautiful CO Posts: 1,510	Holy wow. Why didn't I see this thread before? Give Tink and M my healing thoughts too. (Full plate, huh?) __________________ Once, in an interview, Chuck Norris admitted that he was not the most awesome thing ever. He declined to elaborate; but I believe we all know that he was referring to the existence of chocolate covered bacon. I'd rather be judged by twelve than carried by six.

07-09-2009, 10:27 PM	#26
Clodfobble UNDER CONDITIONAL MITIGATION Join Date: Mar 2004 Location: Austin, TX Posts: 20,012	Send along the Fobble family's best wishes too, V. I hope Tink and the rest of her extended family are holding up well. __________________ My book My other book My spirit animal

07-16-2009, 02:38 AM	#27
BigV Goon Squad Leader Join Date: Nov 2004 Location: Seattle Posts: 27,063	The support from all of you is a welcome blessing and I thank you sincerely. I also send along grateful thanks from Tink. M will be having surgery on Monday. She's having an operation to help her breathe, a tube (tracheotomy?), and Tink says the doctor's description was very scary about how M's body must adapt to this new breathing regimen, or else. She's very weak, and Tink fears that M may not survive the surgery. Goddammit. I've been sitting on this news for hours. I don't know how to communicate to all of you the crushing fear and sadness that comes with helplessly watching a loved one suffer. Please let me be clear, this is in no way a poor me situation. I love Tink. I love M. I love her husband and their children. I love her father, my father-in-law. They are all suffering and all I can do is watch. If it were for a larger purpose I could rationalize away the pain. If my child were suffering but there was a lesson to be learned cemented by the pain, I could watch that. I could watch that knowing that the suffering I witness was like the smoke and sizzle of a branding--elements that accompany the introduction of an important lesson, one that literally leaves a mark. But what is the lesson of ALS? You have bad luck in the genetic lottery, you suck? Yeah. That's instructive. I am lost, and they are lost. __________________ Be Just and Fear Not.

07-16-2009, 08:43 AM	#28
TheMercenary “Hypocrisy: prejudice with a halo” Join Date: Mar 2007 Location: Savannah, Georgia Posts: 21,393	My thoughts and prayers go out to you V. I know what you are going through is a difficult one? I have been there. You have no control. Best wishes to all. __________________ Anyone but the this most fuked up President in History in 2012!

07-16-2009, 09:04 PM	#29
classicman barely disguised asshole, keeper of all that is holy. Join Date: Nov 2007 Posts: 23,401	sorry V - I feel your helplessness and know all to well the feelings you are experiencing. If there is anything... __________________ "like strapping a pillow on a bull in a china shop" Bullitt

07-16-2009, 09:38 PM	#30
Alluvial Phenomenologist Join Date: Apr 2009 Location: Central Mississippi Posts: 270	All of y'all are in my thoughts, V. I lost a grandparent to this.

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