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Poco

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I have concluded it is best to always be prepared for dying with a will etc., having things in order at any age, but not to prepare because you are given a death sentence. It is no different than death row to me. With 1 to 3 months and a 2nd opinion of 3 months it does not bring any calmness to the situation, only paranoia. I do best by ignoring things and pretending everything is ok. This site is great but with so many people in a panicked state about their new or pending diagnosis, I feel hesitant to bring bad news here. 3 weeks ago we were discussing feeding tube options etc. and now it is basically over for us. I had been mentally preparing for bulbar symtoms or legs weakening, types of wheel chairs, computer software etc, but never that he was close to dying. All my ideas about death were wrong. I can only advise travel or do whatever while you still can. I thought because Dick could still walk, eat etc, we could do more things. That is not where his head is and it is too difficult to go places with his breathing issues, We are all looking forward to our family reunion in 2 weeks but that has been difficult because we can't all agree whether to move the date closer due to the new diagnosed. Rooms are reserved and tickets are bought and we are just going with the original dates. He just does not look like someone who is dying, he does not look that sick. He is so strong and brave and has come to terms with things. He is so brave and wants to set an example for his kids. He didn't want to end up like his grandfather who could only blink his eyes, so I guess that is good for him. I am not ready to let him go and his family isn't either. The right time isn't in anyone's cpntrol. This is very sad.
Phyl
 

Al

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Hi Phyl. I can only imagine how hard this is for you and Dick. The only glimmer of hope that I can offer is that the docs have been wrong before. If the reunion is only a couple of weeks away then I'd leave things as they are. You have enough stress without worrying about changing things. This is a support forum. Don't ever think that you need to feel bad about bringing bad news here. As soon as we get a diagnosis we know that someday there is going to be the really really bad time and we try to prepare for it. Most of us are never really prepared for that but we are here to listen, offer advice or just be a shoulder to cry on. You are not alone and we are your friends and will not abandon you in your time of need. If you want to vent, you vent. If you just want to let us know what you are feeling you go ahead and do that. We are here to help if needed.
AL.
 

joelc

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Nicely said Al!

Hi Phyl, my heart goes out to you and Dick! Doctors are always quoting time frames that turn out to be wrong.......please try to ignore this and enjoy what time you have left! Only God really knows and worrying does not help. Like Al said - you don't need the added stress.

Enjoy your reunion and we are here for you whenever you need to vent!

God bless you both!
 

John1

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Phyl, this is heartbreaking. I haven't followed your story closely and you may have already considered and discarded the idea of any breathing aids but I wonder if you and Dick looked at Dr. Onders' diaphragm pacing device. He developed it at University Hospitals in Cleveland, Ohio and has implanted it in several PALS with quite good results in prolonging life and actually improving breathing. It seems like a real advance over Bi-pap and/or venting. Here is a link to one discussion of it. As well, he presented in Japan this winter on the results of the implant on PALS and again reported some real benefits. It is possible that Dick's FVC is too low to qualify for it though.
http://www.medscape.com/viewarticle/503538

John
 

POSFirebird_86

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Oh Hun Im sorry bout his new diagnosed. As joelc said Doctors are quoting time frames. They told us 3 months ago my Father in law didnt have more then a month and now it is 3 months later and he is still here. I hope you guys get to enjoy your family reunion and Have a wonderful time with ur families :)
 

CindyM

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Dear Phyl and Dick-My thoughts are with you tonight! I'm pullling for some wiggle room regarding the timeframe. Like others have said, the medicals have been wrong before. I hope you go through with the reunion. I think you will all be sad but feel worse fi you don't do it. It is an opportunity for everyone to hang together when they and you all need it most.

Please don't feel bad about posting bad news! It is the reason for this forum and helps the rest of us come to terms with our priorities. Take care and hug as many people as you can-you deserve hugs today! Cindy
 

sharona

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Sorry

Dear Phyl & Dick,
So sorry to hear what they Docs said. But they aren't God & really don't know our destiny only God does. Live each day to the fullest.Go to the reunion & have a great time I think it would be good for both of you. My Son had cancer & died 6 mos after being diagnosed that was the hardest day in my life so I know what having this tragedy does to everyone.Trust in the Lord & God Bless you & Dick .I will keep you both in my prayers.
Sharon
 

Jamiet

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Phyl,

If your hubby is as strong as you say he is..mentally.....he will make liars out of the dr's.....i just know it.

feel free to post anything, that's why were here. You need us the most right now and we're here for you. Nothing about ALS or any of it's neuromuscular relatives are easy and all have no real good news, so don't worry, were here.

Try to enjoy the time you have, he sounds like a wonderful man and a great mentor for his children. God has a set path for us, mabye his is to make liars out of the doctors and show his children just how strong and good of a dad they have.

The best to you and please vent to us if you need.

Regards,

Jamie
 

Poco

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I am trying so hard to deal with this. There is the logical side, yes we all die etc, but I can't get in touch with any of it. I am really disappointed in myself as a person. I walk around as if oblivious to the whole situation. I complained because Dick didn't want to do anything but I am not much better.Jackiemax's husband was given the same diagnosed. Our lives are paralleling each other. God could change things for everone if he wanted to, but he just lets people suffer generation after generation. Sometimes I pretend I am alone, but I can't get in touch with anything. I know someone always has it worse out there. I watch him a lot, wondering when the last breath is coming. He doesn't want to leave me or his family, but he doesn't want to live like this either. 3 doctors agreed with the 3 month diagnosed or less because of his breathing. I suggested the pacing unit John talked about but it would not work in our situation. I was married twice before and both of my prior husbands died. They were married to other people at the time, but it still haunts me. Nothing makes sense to me, so I just pretend it is ok. I am just having a bad day. I can't wait for the reunion, but each new day is one day closer.
Phyl
 

CindyM

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Phyl-you've been given a big shock. Give yourself time to adjust. the stage of grief you are in is normal, so there is no sense being dissapointed in yourself. Be extra nice to yourself in this difficult time, and don't forget we are here for you. Regards, Cindy
 

MtPockets

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Joined
Jun 1, 2006
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PALS
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05/2006
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Ms
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Gulfport
HOPE, some Doctors don't know the word.

Hey, I know Doctors don't "Know it all", my son is one, a doctor. He says everything that is wrong with me and my wife can be "cured", if we would just lose some weight. :shock: DUH! But, I still love him. I wish it were that simple. I think he's still floating on the river denial. :rolleyes: Actually, he knows I'm dying, but just won't allow himself to say the words.

Then there was my mother in law who the "doctors" said would be dead in 3 months from breast cancer. She lived 10 years after that, went to Hawaii, Europe, river rafting, etc. She never gave up. Pretty good for a dead woman. :-D

The point is don't give up. HOPE! Could stand for:
H----Hang
O----On
P----People
E----Everyday, one day at a time.

Yes I know, that's a bad one, but Hang on to it. Don't give up and take what a "doctor says as the truth. Fight each and every day for all you are worth.

Only God knows when our time is up on this planet. Hang in there and try to keep a positive outlook. I wish I had a "bucket of hope", icon I could put on here for you. Just know we are all with you and in this together.

God Bless
Capt AL:)
 
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