ALS, Lou Gehrig's Disease
 

Tink's twin sister, M, has ALS, Amyotrophic Lateral Sclerosis, Lou Gehrig's Disease. She was diagnosed last month after some increasing weakness and difficulty walking.

This is a tough disease, taking your muscles and leaving your mind. Nine people in Tink's family have died from the disease in the last two generations, M is number ten. M is putting on a brave face, no, that's unfair. She *is* brave. Tink is brave too. The terrible part is that there's nothing to do. Literally, no exercise. The doctor say *life* is her exercise. And there's some medicine, but it's pretty worthless.

You can live a long time with the disease, look at Stephen Hawking. Thirty years and still kicking. Well, clicking. I saw him deliver a talk once a few years ago. He was great. He spoke through his speech synthesizer, talking about his book A Brief History of Time.

But it is scary as hell. Tink watched her mother die in less than a year, and she lingered the longest. Her brother, J, was diagnosed two weeks before he died. That doesn't count the denial time, of course. But still it was like a bolt of lightning.

It's so tough and scary and discouraging. Her mom at first had trouble getting around, until she moved into the wheelchair. At first J had trouble eating and swallowing, until he got his feeding tube installed. They both eventually had trouble breathing and that was the end.

What will the future hold for M? Of course we don't know. Will it be two weeks? Two years? Or two decades? We're all hoping for the best, but we just don't know and that's the worst. Click the link. Join the group. Keep her in your thoughts and prayers. Please.

Here are a couple links

www.alsa.org

ALS group

Your family are all in my prayers

Oh V (and more inportantly Tink) that's such a hard thing to hear.
I'm sorry for the previous losses, and that M has been struck by something with such a such a poor prognosis.

I wish her all the best for the future, and for you and your family too.

I'm sorry to hear that V. will do

My mother in law died two years ago from a similar neurological condition. She was brave too, but it was awful watching her. It affected her speech first, then her swallowing muscles, so no more food, then her legs, and finally her breathing. Yhe worst thing was she spent her last two months in a nursing home and the hospital, because she had been very active up until the onset of symptoms, doing aerobics in her garage with a group of friends and walking her dog daily. She was 74 but still had a lot of living to do. My thoughts are with you and Tink, Big V, I know this is a tough thing to go through.

Sorry BigV. You guys are in my thoughts and prayers.

Sorry to hear that BV! What is the chance Tink will get it?

Very sorry to hear that, BigV. I'll be thinking of your family.
Strength and courage to all of you.

I am so sorry to read your bad news, Big V. Life can be so tragic and unfair. You and your family are in my prayers.

V has asked that I post the response to this question.

There is a 50% chance that I will get this. Just because one may carry the gene does not mean that one will get the disease. It is devastating to watch your family die one-by-one. They have difficulty breathing, eating, swallowing, walking, talking, holding things. My mother was beside herself as she could no longer give her children and grandchildren hugs.

The gene that my family carries is a known familial gene. The mutation of the gene is evidently a very aggressive one. That is why no one has lived beyond a year from diagnosis. I hope she throws that statistic right out the window on its ass!

I LOVE to exercise! I've recently added a bit of running to my treadmill routine. Do I stop? Exercise speeds the progression. If I stop and never get this.....well. If I keep exercising and am going to get this......well. It's a crap shoot.

Right now, my sister is being extremely courageous and I applaud her. I don't like to think of the "what if's" for me. Is this the last Christmas, the last birthday we will share together? I hope not. For her, her husband and her children..

I'm so sorry. My thoughts are with you.

BigV and Tink,
I am sorry to hear that you are going through this. My wife's dad passed away in 2000 from ALS. He stayed with us for the last couple of months of his life and he died at our home. While caring for him was emotional and difficult for all of us, it was something that we felt we were in a position to do and we both wanted to make him as comfortable as possible.

He was a non stop talker and the disease presented itself in his throat first, progressing fairly rapidly. At first he and his friends joked that he had "used up his life's allotment of talking." Ultimately it was very harsh for a person hell bent on communicating to lose speech and then the ability to type.

My heart goes out to you both, I know you have a lot more experience with this than most people, but I'm sure it doens't make it any easier.

I'm so sorry, for both of you as well as for your sister's family. My prayers are with you all.

I'll keep you and everyone in your family in my thoughts.

My last job shared office space with the Arizona chapter of the ALS Foundation. It's a good organization. They offer counseling as well as help with getting any equipment that might be needed, etc.

kind of an update

M is declining visibly. Some of the medicine she was taking to retard the progression of the disease caused a serious side effect with her liver enzymes. Despite the fact that the degeneration of the muscle response was slowed considerably, she had to quit the medicine because of the side effect in her liver. Now she has a happy liver and the muscles deteriorate more quickly. Goddammit.

Her family is hanging together, but no one is ignoring the fact that this is a terrible situation. Tink has bemoaned the fact that our eldest son, away at college across the nation, can't/won't travel often enough, soon enough to see his aunt again. This wears very heavily on Tink.

Tink feels good, physically. This is a welcome change, due probably to the elimination of one big stress factor.

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

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*

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.

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.

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.

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.

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.

She made today's paper.
Though the disease is ravaging her body, her spirit remains unbowed.@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*

Thank you.

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

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

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.

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.

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

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

Damn V. My thoughts are with you. :(

Thank you all. Today is a stressful day.

this just in:

thank you facebook

Great!

Tink's sister, M, died yesterday.


There's *so* much more and I can express none of it, I can soothe none of it.

Oh, man, V. I'm so very sorry to hear this. Condolences to you and your family.

Big V, so sorry to hear of your loss. My heart goes out to you and to Tink and her family.

Sorry to hear it V. I guess the writing has been on the wall for quite some time. RIP to her and hopefully the family can get some peace and move on from there. Tough situation losing a sister.

So sad to lose someone so young. She is at peace now.