- Status
freddiesnetty
Distinguished member
- Joined
- Nov 2, 2007
- Messages
- 241
- Diagnosis
- 12/2006
- Country
- US
- State
- Tx
- City
- Houston
mmmmmmm how I miss my cosmos! I had one yesterday, it was way too strong. Can't take care of Freddie drunk?!?!?:mrgreen:
But it was GOOD!
But it was GOOD!
joelc
Moderator emeritus
- Joined
- Jul 15, 2006
- Messages
- 2,835
- Reason
- PALS
- Diagnosis
- 09/2005
- Country
- CA
- State
- BC
- City
- Abbotsford
I can't believe how things have changed since getting a tracheostomy and vent! I lost 80 pounds last year by not being able to eat much, I used to get full very quickly and food did not appeal to me. Since getting my tracheostomy my appetite has improved and I am eating steaks and whatever I want, I am even gaining some weight! Life is great!
freddiesnetty
Distinguished member
- Joined
- Nov 2, 2007
- Messages
- 241
- Diagnosis
- 12/2006
- Country
- US
- State
- Tx
- City
- Houston
Amen Joel!
Freddie had lost so much weight during the last few months, when we went to go in for surgery, they had told me that he was starting to shut down. He was severely malnourished. Since he has gotten the feeding tube I do see his face filling in. As far as his body, He is so thin. Kind of looks like a skeleton with skin.....His breathing is so much better. I think we waited maybe a little late for the peg, but I am slowing weaning him off the Jevity and feeding him a diet of other things...pureed of course. Another guitar player that has been on a vent for 19 years maintains this diet and is still around. Lots of seeds, herbs, eggs meat, fish and tons of vitamins. He is also drinking a gallon of water a day......But life sure is a lot better since the trach and peg. I know that some people do not want these life sustaining measures, but not to push my opinion........
ALS does not have to be fatal:mrgreen:
Just an opinion
Hugs
netty
Freddie had lost so much weight during the last few months, when we went to go in for surgery, they had told me that he was starting to shut down. He was severely malnourished. Since he has gotten the feeding tube I do see his face filling in. As far as his body, He is so thin. Kind of looks like a skeleton with skin.....His breathing is so much better. I think we waited maybe a little late for the peg, but I am slowing weaning him off the Jevity and feeding him a diet of other things...pureed of course. Another guitar player that has been on a vent for 19 years maintains this diet and is still around. Lots of seeds, herbs, eggs meat, fish and tons of vitamins. He is also drinking a gallon of water a day......But life sure is a lot better since the trach and peg. I know that some people do not want these life sustaining measures, but not to push my opinion........
ALS does not have to be fatal:mrgreen:
Just an opinion
Hugs
netty
kelly
Senior member
- Joined
- Oct 6, 2006
- Messages
- 672
- Country
- US
- State
- ny
- City
- saratoga springs
hi Netty,
I have been following your posts closely and think about you both daily. My husband and I just got back from the ALS clinic....they brought up the feeding tube. My Husband has lost so much weight in such a short period of time. It is going to take us both time to process this latest decision. His initial reaction was no way...but I hope he changes his mind. How are Freddie's spirits? How are your cosmos? I fine wine to be my medicine of choice. Thanks for keeping us up to date! Fondly, KR
I have been following your posts closely and think about you both daily. My husband and I just got back from the ALS clinic....they brought up the feeding tube. My Husband has lost so much weight in such a short period of time. It is going to take us both time to process this latest decision. His initial reaction was no way...but I hope he changes his mind. How are Freddie's spirits? How are your cosmos? I fine wine to be my medicine of choice. Thanks for keeping us up to date! Fondly, KR
brendapals
Senior member
- Joined
- Jul 6, 2008
- Messages
- 957
- Reason
- PALS
- Diagnosis
- 06/2008
- Country
- US
- State
- any
- City
- any
joelc,
Way to go! yes, that is very encouraging to hear such positive news! Glad you're doing well,
and yes,
life is great!
Keep the faith,
brenda
Way to go! yes, that is very encouraging to hear such positive news! Glad you're doing well,
and yes,
life is great!
Keep the faith,
brenda
freddiesnetty
Distinguished member
- Joined
- Nov 2, 2007
- Messages
- 241
- Diagnosis
- 12/2006
- Country
- US
- State
- Tx
- City
- Houston
Hi Kelly,
My advice to you is to really think about that feeding tube before he loses too much weight. We lived a long time in denial,Freddie never wanted the feeding tube or vent. I wish we would of gotten the peg earlier. I do not know if he will ever get the weight back...I hope so. WE are doing well, it is a little tiring but we are still in the transition period, Freddie is doing ALOT better now. At first I think it was not what he thought it was going to be, but he has learned to trust "Iron Man" that is what he has named his vent. And a little sleeping medicine does wonders. It has been hard for him to sleep, he has been a musician for over 25 years. But we are trucking along...
Thanks for asking and pm me sometimes!
I can give you my email
Hugs,
Netty
cosmos are far and few in between, I remember when Freddie was on stage, he used to tease me in front of the crowd about me and my Red drinks........aahhh the good ole days
My advice to you is to really think about that feeding tube before he loses too much weight. We lived a long time in denial,Freddie never wanted the feeding tube or vent. I wish we would of gotten the peg earlier. I do not know if he will ever get the weight back...I hope so. WE are doing well, it is a little tiring but we are still in the transition period, Freddie is doing ALOT better now. At first I think it was not what he thought it was going to be, but he has learned to trust "Iron Man" that is what he has named his vent. And a little sleeping medicine does wonders. It has been hard for him to sleep, he has been a musician for over 25 years. But we are trucking along...
Thanks for asking and pm me sometimes!
I can give you my email
Hugs,
Netty
cosmos are far and few in between, I remember when Freddie was on stage, he used to tease me in front of the crowd about me and my Red drinks........aahhh the good ole days
- Status
Similar threads
