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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:32 PM
Original message
I'm going between pissed and numb.
My brother was just diagnosed with Lou Gehrig's disease.

He is the most wonderful person you could imagine. Everyone loves him. He's had several bad breaks in life, but still knows how to find the fun and good in things. We lost another brother several years ago, and he is mentioning how painful that was and how he understands how we must feel. Everyone who knows him is heartbroken. Typically, he is worrying about the rest of us -- his kids, our mother, his siblings, his girlfriend. I learned a long time ago that life is not fair, but this is breaking me.
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TallahasseeGrannie Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:37 PM
Response to Original message
1. I am so sorry.
It's a hard thing to see someone you love suffer. Take it one day at a time.
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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:41 PM
Response to Reply #1
3. Thank you so much for replying, TallahasseeGrannie.
It's actually easier for me to say something to strangers than to talk to people who know and love him. I posted out of desperation, and was feeling pretty crappy that no-one answered even to throw me some crumbs of human sympathy. I don't want to visit my feelings on my brother, but I'm very upset. Thank you so much for understanding.
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Radio_Lady Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 08:42 PM
Response to Reply #3
30. So sorry to hear this news. I am an only child, and my parents are gone.
Edited on Thu Sep-29-05 08:47 PM by Radio_Lady
My only experience with terminal diseases is my first cousin, who recently told me she had Parkinson's Disease. She lives far away, so I don't have to watch any deterioration. However, I've just tried to be very upbeat with her. We'll be visiting her and her husband next spring.

My cousin has tried new medications. Perhaps there are some medical trials he can become part of. That's what the actor Michael J. Fox is doing.

I don't know anyone with Lou Gehrig's disease (ALS), but I work with physically disabled people every week in my volunteer job. Mostly people who are blind from birth, or legally blind, or blinded by diabetes and suffering with neuropathy (pain in all limbs). Some folks with cerebral palsy come in wheelchairs. It just sharpens my saw, realize how blessed I am. I take every day as it comes.

How old is your brother? How is he doing emotionally? Are there support groups for ALS relatives? My heart goes out to you.
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Sugar Smack Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:41 PM
Response to Original message
2. God, I'm sorry, honey.
I cannot even imagine what it would be like if I were you. My own brother is so special to me. What can we do for you, July?

:hug:
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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:44 PM
Response to Reply #2
4. I don't know what can help. I just had to say something to someone.
I'm the oldest in the family, and people expect me to be strong, which I try to do. But it's killing me. I just needed someone to act like they got how hard it is, I guess. Thanks for the hug.
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TallahasseeGrannie Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:48 PM
Response to Reply #4
9. I have learned
in life that usually the worst things, the biggest tragedies, give us the greatest gifts. I'm sure you are thinking how could seeing your brother in such discomfort, knowing the prognosis, be a gift... but you will find yourself taking advantage of every second. You will work so hard to express your love to him and make him comfortable. He will grow as he faces challenges he never imagined.

This kind of loss is bitter, bitter sweet. It tears us up but it nourishes our hearts in unbelievable ways. Be ready for the roller coaster. Take care of yourself and be good to yourself, too.

Love is amazing. It can't get sick and it never dies. Sounds like some sappy movie, but I swear it is true.
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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:01 PM
Response to Reply #9
16. My late brother is still in my heart. But we have never been the same.
I don't think I've experienced the gifts you're talking about. I miss him every day. Now I try not to think about a world without another brother in it, but it's very, very hard. I know it's the way of the world, but I hate it. He will probably handle it better than we do, even though he has the greatest burden -- that's the kind of guy he is. We will all do everything we can to enjoy our time with him and help him every way we can. We have a zillion relatives who will do the same. I just can't stand that he can't catch a break. I've had an easy life, and his has been hard, hard, hard. I'm older, too. Why does he have to bear this?

I know what you're saying, and the love is there. We're going to be heartbroken in the end, though.
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TallahasseeGrannie Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:06 PM
Response to Reply #16
20. You are right
that there is no easy way out of heartbreak. Love is a salve but it can't take it away.
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knowbody0 Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:46 PM
Response to Original message
5. im so sorry July
cherish your time with him, and we'll all pray for a cure. lots of love from my family to yours
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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:48 PM
Response to Reply #5
7. Thank you, knowbody0.
I appreciate your support.
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davsand Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:47 PM
Response to Original message
6. I am very sorry.
I'm sure you are all scared by this news, and my heart goes out to you all.

I want to share with you that a friend of mine's father was diagnosed with ALS and lived for over 30 years after the diagnosis. Cy was a teacher, a fisherman and a very active guy. He was also a bee keeper, and his family has always said they think his bees and the stings from those bees helped him live so long and so well.

He passed away because he had prostate cancer that they never found until it had spread all over hiss body. They found the cancer when he had an accident and fell while fishing...

Hang in there and I hope Cy's story offers some hope to you.

Brightest Blessings to you and your brother.



Laura
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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:53 PM
Response to Reply #6
10. Yes, we are all very scared.
We lost another dear brother several years ago, and I don't think any of us has really gotten over it. I am really worried about our mother. We knew his health problems could be Lou Gehrig's, but hoped they weren't. My mother told my sister, "I can't go through this again." She is the toughest nut you can think of, but our brother's death broke her.

I hope my brother will somehow manage as your friend's father did. If he did anything you think my brother could try, please let me know.

We are trying to hang in. The amazing thing is that my brother is being stronger than the rest of us. He is so beloved by all. My husband and my brother-in-law are completely shaken, because he is like a brother to them, too.

Thanks for caring. I feel so confused, and I can't really talk to people who know him, because everyone keeps reacting the same way -- freaked-out panic like the immediate family is experiencing.

Thank you to everyone who's replied, I really need support right now.
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JimmyJazz Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:48 PM
Response to Original message
8. I am so sorry.
I'm sorry. :(
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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:54 PM
Response to Reply #8
11. Thanks, JJ. Thanks. nt
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xmas74 Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:55 PM
Response to Original message
12. I'm so sorry.
I've witnessed what it does to a person. A girl who was two years behind me in high school was diagnosed w/ it.
I can't say how sorry I am for you.
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DeposeTheBoyKing Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:56 PM
Response to Original message
13. What a devastating thing to deal with
I'm so sorry for your brother and the rest of your family. He's lucky to have so many people who care for him and will support him through this ordeal.
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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:02 PM
Response to Reply #13
17. Thanks, DeposeTheBoyKing.
It's kind of you to post.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 06:59 PM
Response to Original message
14. My grandfather passed away last summer from ALS.
You have my utmost sympathies.
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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:03 PM
Response to Reply #14
18. Thank you, Fenris. If you have any advice, please PM me. nt
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Tafiti Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:01 PM
Response to Original message
15. "Between pissed and numb."
That's how I felt when my mother had cancer. She was also the most wonderful person one could imagine.

You have my deepest sympathies, July. Here's a snippet of statistics that might give you hope. It's still a mystery at this point, but scientists could crack the code, so to speak, at any time.

About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:03 PM
Response to Reply #15
19. I appreciate it, Tafiti. A little hope. I'll take it. nt
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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:34 PM
Response to Original message
21. Just want to thank everyone who's replied, one more time.
I felt kind of stupid posting to a bunch of people I don't know about something so important to me, but I just can't talk to people close to us right now, and I'm having a hard time. All of you who have taken the time to talk to me have helped me. I thought I'd go crazy if I couldn't say how upset and afraid I was to someone, and I can't do that to my family right now. A bunch of people I've never met have answered me when I needed to talk. I can only say thank you, again.
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ismnotwasm Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:37 PM
Response to Reply #21
22. I understand.
I'm glad you came here. My thoughts and prayers are with you and your brother.
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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:38 PM
Response to Reply #22
23. Thanks to you, too, ismnotwasm. Another good DUer there for me.
I feel fortunate.
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WindRavenX Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:39 PM
Response to Original message
24. hug
:hug:

I know that doesn't do much, but if you need to talk, feel free to drop a line or whatever :hug:

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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:40 PM
Response to Reply #24
26. Thanks, I appreciate it, WindRavenX. nt
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jane_pippin Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:39 PM
Response to Original message
25. Oh, I'm sorry to hear that.
I don't know what to say--please don't forget to take care of yourself through all of this too.

:hug:
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July Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:41 PM
Response to Reply #25
28. Thanks, I'll try; you're kind to post. nt
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La Lioness Priyanka Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 07:40 PM
Response to Original message
27. all my sympathies...i am very sorry
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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 08:34 PM
Response to Original message
29. I am very sorry to hear this.
You and your family have my sympathy. :hug:
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LynzM Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 08:43 PM
Response to Original message
31. Oh dude....
I am so sorry to hear that. :hug: Love, peace and hugs to you and your family...
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mac56 Donating Member (1000+ posts) Send PM | Profile | Ignore Thu Sep-29-05 08:43 PM
Response to Original message
32. Thoughts and support going your way.
Take care of him and each other.
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