Status
Not open for further replies.

freddiesnetty

Distinguished member
Joined
Nov 2, 2007
Messages
239
Diagnosis
12/2006
Country
US
State
Tx
City
Houston
Thanks so much for all of the support, I know that I came in and then went out again. I can not seem to get Freddie over this pneumonia crap. It seem to come around about every 2 to 3 months. I wonder if it is because he got that damn pneumonia shot..? But anywho things are getting a little better, after my come to jesus talk with him about getting up in the chair and start living with me, He has been getting up in the chair about 2-3 hours a day....THAT is alot for him. On the other hand I was thinking to myself.......(see the smoke)...lol... I do NOT know how he feels everyday nor the toll this has taken on his body, Sure it sounds easy for me to TELL him that he can do it, but I actually don't know what it feels like to sit with bone rubbing on bones. Freddie seems to be in constant shoulder pain, I don't know if this is common in his late stages of this disease. Freddie's body has real gone to hell. The last time we weighed him was around November and he weighed 116, I know that sounds horrible, but for him that is pretty good, when he got trached he weighed around 96, he is 6'3. So he is very tall to be so thin.They had to pump food in and out of his stomach when he first got the peg, He was literally malnourished, they were amazed that Freddie even survived all of the procedures. So I have been trying to think about what he really feels like sometimes....I did go out over the weekend, Freddies old drummer, has another band and it was kind of like old times.....I sure did miss my Freddie playing his strings though...But I think once we ALL learn to accept what now our new roles are that GOD has given us, it is much easier to accept what we ALL go through. I find that if I sit around and dwell on our old life, it makes it so much worse, I am trying like HELL to figure out what this new life is. I do know that there has got to be some purpose for all of this.
I know that I did tell yall that the passings were really getting to me also. I feel better about that now knowing that they are pain free and getting on with the real lives that are forever. I think that resentment was the real deal that was starting to eat away at me. I am grateful for the things that I have it could of turned out in some kind of weird way alot worse, if that could even make sense. I tell myself everyday to do the things that make me "sane" I have started getting up and doing something to myself instead of the typical ponytail and some sort of clothes, My friends could really start to notice the difference in me. I feel better, some days when I am trying my best I start to pick at the situation and that only makes it worse. But I am trying...........and I am so grateful to all of you, I know that I popped in and *****ed, popped make in and then gone again.
Well I have been working on some music with Freddie, wait till you hear this one......I am so proud of it........... Well Freddie is very well known for playing the National Anthem, so he dubbed in the Lou Gehrig speech into it and WOW! I am hear to tell you that it is whewwwwwwww....Something else, I did have to go through the Lou Gehrig estate to get some permission. They were blown away! I am currently working on our annual fund raiser for "Rock 4 A Cure" This is given me back my old self...I thrive on awareness for the community. So Zen Archer, get in touch with me I want you to listen to this for your website.........You are going to love it...I will get with Matt my right hand man and see about getting a link on here to it...............Well I have rambled enough!
I want to thank all of yall for the support, I couldn't get through this without yall
netty
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
Missouri
City
Springfield
Netty,

Thanks for the update on all you and Freddie have been up to. You are surely on my "hero" list!

I'm pulling for the two of you!
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
City
any
netty and freddie-
So good to hear from you all. netty you hang tough-I can't wait to hear freddie's music! You are both heroes in my book,
take good care,
-b
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
Netty, Thanks for the update. I am encouraged for you, and can't wait to hear what Freddie has done with the song. ((hugs)) :)
 

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
Got the message, I'll send you a PM.
 

thelma313

Senior member
Joined
Aug 25, 2008
Messages
888
Country
CA
State
Quebec
City
Montreal
Netty you are a superstar and a true hero. Please tell Freddie that I simply CANNOT wait to hear this new music. It sounds brilliant.

Best of luck to you both! :)
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Good to hear from you again, Netty. Sounds like you and Freddy are doing a great job with awareness. Now if you can only get his pneumonia under control! Regards, Cindy
 

freddiesnetty

Distinguished member
Joined
Nov 2, 2007
Messages
239
Diagnosis
12/2006
Country
US
State
Tx
City
Houston
Well I have been trying to figure out how to send this file and it is a wave, so I can not attatch it..
Zen I will email it to you!

Thanks for all the support!
netty
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi nettie! Glad to hear that hopes are up at your end.......God bless you and Freddie. I am trying my best not to get OFF TOPIC, but I have been trying to call you to let you kinow that my husband's right leg is coming off. Will keep you up with the latest. Gotta dig out your phone # again. Am trying my best not to get off topic! I know it could create a problem! May God bless you and Freddie dear!

Irma
 

kelly

Senior member
Joined
Oct 6, 2006
Messages
661
Country
US
State
ny
City
saratoga springs
Nettie....
I admire both of your strength so much. Please know that I think of you both every day. I can't wait to hear your song...I know it will rock. Hang in there girlie! Kelly
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Glad to hear you are putting some energy to your own needs. We always hear that you have to put your own mask on first! Can't wait to hear the music.

Sharonca
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
hi nettie.
so good to hear things are a little better and you are taking a little time out for yourself.
its encouraging to know freddie feels able to work on his music again,can't wait to hear some.
as always you both are in my thoughts and prayers:)
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
You and Freddy are in my heart and prayers every day!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
good to hear from you Netty.

AL.
 
Status
Not open for further replies.
Top