View Full Version : Bad News
LONGSAM2
08-30-2007, 07:33 PM
Hi Everyone.......haven't posted in a while. Was diagnosed 11/06. I want to thank you all for helping me out when I went on Bipap, Cough Assist, etc. I was so terrified of everything.
Went to ALS clinic last week and got upsetting news. It is time to go on Hospice. It felt like I got my DX all over again. I thought I would have more time but progression is rapid. Onset of symptoms started 4/06. I can still type with one hand so I'll keep in touch. God bless you all, CALS and PALS..........Sharon
Icanmanz
08-30-2007, 07:50 PM
Hi Everyone.......haven't posted in a while. Was diagnosed 11/06. I want to thank you all for helping me out when I went on Bipap, Cough Assist, etc. I was so terrified of everything.
Went to ALS clinic last week and got upsetting news. It is time to go on Hospice. It felt like I got my DX all over again. I thought I would have more time but progression is rapid. Onset of symptoms started 4/06. I can still type with one hand so I'll keep in touch. God bless you all, CALS and PALS..........Sharon
Sharon, may God bless you! You strike me as being so courageous, and I respect that. When you said that you are typing with one finger, I saw my son. He fought and fought, until he could not fight anymore. He had such a good relationship with God. He remained calm and sweet to the end. I will be praying for you. You are already an angel of God. May God bless you!
Irma
patricia1
08-30-2007, 08:17 PM
I feel so bad .It must be terrible to hear that news But what do they know they have been wrong more times then not. Why do they want you to go to Hospice Cant hospice come to your home,Do you feel you need hospice. They cant play God Fight Fight and pray As I will to.Pat
hboyajian
08-30-2007, 09:40 PM
Dear Sharon, I sincerely hope Hospice will be able to help you with all your physical and emotional needs, that your family is there with you, and that you last a good long time yet with everyone's help. You are in my prayers tonight. Holly
edna may
08-30-2007, 10:17 PM
Dear Sharon, I sincerely hope Hospice will be able to help you with all your physical and emotional needs, that your family is there with you, and that you last a good long time yet with everyone's help. You are in my prayers tonight. Holly
Hi SharonI may God bless you & your family. You will be in my prayers & never under estimate the power of prayer. EM,
LONGSAM2
08-30-2007, 10:41 PM
Hi Pat,......yes, Hospice is coming to my home and I feel with each passing day that I need it. I have lost 42 pounds but try to eat healthy meals. I jusrt don't have an appetite anymore. I also have "head drop" and my diaphragm is very weak. I will continue to fight, however and try to enjoy each day that is given me. I only pray for an easy, peaceful death and I feel sure Hospice willl provide this for me and my family. It is all I can hope for.....God willing. I continue to pray for you all. Sharon
LONGSAM2
08-30-2007, 10:44 PM
Hi.......to all of my friends who replied to my post a million thanks. Sharon
Icanmanz
08-30-2007, 10:50 PM
Hi Pat,......yes, Hospice is coming to my home and I feel with each passing day that I need it. I have lost 42 pounds but try to eat healthy meals. I jusrt don't have an appetite anymore. I also have "head drop" and my diaphragm is very weak. I will continue to fight, however and try to enjoy each day that is given me. I only pray for an easy, peaceful death and I feel sure Hospice willl provide this for me and my family. It is all I can hope for.....God willing. I continue to pray for you all. Sharon
Sharon, I already know that God will bless you with a peaceful departure. You deserve it, you are an angel of God! Our Father has a spot picked out for you! Bless you, I will say a prayer or two for you tonight. You are such an inspiration!!!
Irma
I am so proud of people like you!
Hi Everyone My Als Clinic Said We Would Call Hospice When Breathing Is 30% Mine Now Is 65%. So I Wonder How Long, Only God Knows,jan
Sharon, God Be With You Now And Until The End. Peace Be Still And Know That He Is God Blessings Janf
Sharon, Do You Have Bulber Onset ?
trustinggod
08-31-2007, 01:28 AM
Sharon,
I've written about my friend Linda and her experience with hospice and her very peaceful, easy death. Please don't misunderstand, I don't mean to suggest that it was easy for her knowing that she was dying -- that was the most difficult part for her.
By easy I mean that she was very comfortable and never once struggled or gasped for breath. I know because I was right there with her 24/7 the last three days.
About six months before she died we made a CD with her favorite praise and worship songs so that we could listen to it while I showered her and did her makeup and hair each day. The words to the songs were so comforting and Linda decided that she wanted that CD playing most of the time in those last days. In the final hours before she went home to heaven, several of us, her friends and family, were gathered around her bed softly singing, humming or just listening to the beautiful music and we all saw the sweet smile upon her face as she gently slipped through the curtin that divides the living from those who've entered into eternity.
Because the music was so powerful to everyone in the room, we decided to copy it onto CD and give it to everyone who came to Linda's memorial service. If you are interested I would love to send you one of them.
God bless you,
Jeanne
CindyM
08-31-2007, 08:02 AM
Hi Sharon and Jan- this disease sucks big time! I hate to learn about how it affects freinds like you two! Bless you both. Cindy
patricia1
08-31-2007, 09:00 AM
Hi Pat,......yes, Hospice is coming to my home and I feel with each passing day that I need it. I have lost 42 pounds but try to eat healthy meals. I jusrt don't have an appetite anymore. I also have "head drop" and my diaphragm is very weak. I will continue to fight, however and try to enjoy each day that is given me. I only pray for an easy, peaceful death and I feel sure Hospice willl provide this for me and my family. It is all I can hope for.....God willing. I continue to pray for you all. Sharon
Sharon Do you have a peg maybe the weight loss has weakend you Have you tried a nutrienist to fatten you up and how is your swallowing . May god help you,and like I said dont give up there is always hope. Pat
LONGSAM2
08-31-2007, 11:41 AM
Hi Pat.......I do not have a peg. I think my lungs are too bad .....45%. I can swallow fine.
Just had a tuna on rye. Also take Ensure once a day, sometimes twice. Sharon
LONGSAM2
08-31-2007, 11:48 AM
Hi Jeanne,.......What a wonderful offer to make. I would be delighted to have the CD and it would be special that it gave another ALS patient such comfort. I will send you my address. I would feel honored. Sharon
patricia1
08-31-2007, 10:32 PM
Are you considering a vent I know Mike is very happy he chose it.Pat
nsmith555
08-31-2007, 11:49 PM
Sharon,
I am praying that God will overwhelm you with His peace. You sound like a very brave and faithful woman. For that, it is obvious God has found favor in you.
God Bless YOU!
Nicki
LONGSAM2
09-01-2007, 01:53 PM
No, Pat, I have decided not to have a vent and won't change my mind about it. I have given it long and serious thought. I would rather go Home. Sharon
trustinggod
09-02-2007, 09:10 PM
I wanted to offer to send a copy of the CD I sent to Sharon to any and everyone else interested.
You can private message me with your address and I'll send it to you.
Happy Labor Day,
Jeanne
georgia
09-02-2007, 09:25 PM
Cd sounds nice.
Do you have any copyright issues with copying it?
guwainengle
09-02-2007, 10:07 PM
I don't think copyright issues really matter in this case. I would really be suprised if there is a problem sharing information about this life impacting disease. I would think companies would be happy to make this awareness more available.
G
trustinggod
09-02-2007, 10:41 PM
I may be wrong, but I thought since I owned the various CD's that I used to make this one, and the fact that I give them away, no copyright issue apply.
georgia
09-03-2007, 09:54 AM
This is only one link to this issue. I have copied stuff too but under this thread you might at least know what it says about it.
http://www.templetons.com/brad/copymyths.html
jimercat
09-03-2007, 09:59 AM
Sharon,
Thank you for sharing your struggle with us all. You are very brave to let us in on this journey into hospice. This is very helpful for me as a caregiver and you have expressed a peace that I hope my husband and I both will have when his time arrives.
I'm praying for you.
And Jan- please continue to let us know how you are doing.
joelc
09-03-2007, 04:50 PM
I believe since you are not copying a single CD, but just an individual song off many, it is okay and falls outside of copyright issues. I looked into this several years ago and was told a compilation like this does not infringe on copyrights. Hopefully that has not changed.
