What actuallly kills an ALS patient?

[jacquelyn]

Dad has been eating very little over this past couple of days. Mostly jelly, ice cream and "boost". It is so sad to see him like this. He is like he is trapped and can only move very little. We have been thinking that "time is short" for quite a while now and he still manages to hold on. I used to be so scared that he would die and now I am scared that he will live (do that make sense?).

 

[Al]

Yes it does make sense and many here have felt the same way at some time. Don't feel bad or guilty. It's a natural instinct to not want a loved one to suffer.
AL.

 

[freddiesnetty]

The End?

Well I am Annette, and my husband has ALS ( he refers to it as arms and legs suck) He is an entertainer and I say is because in his now little meek and slurred voice he still cracks the jokes. He used to sing the blues and such in his powerful voice. How quickly things change. I am so afraid that he to will suffer in dying, I am told that he would suffocate, I have had to call 911 already due to choking, world series was on so he told the paramedics that knew him( saw him performing before) he wasn't leaving. So they laughed and watched some of the game together, AMAZING strength he has. I am hoping that suffocation is not how this will end. I am new and very scared. I feel like I am going insane sometimes! Thanks for a place to vent...

 

[texgrl]

Hi Annette. Has your husband decided against a vent? my mother in law has ALS and she is very adamant about not wanting any assistance in breathing and has actually refused all help from doctors in general except for valium. Its heartbreaking, and I feel for what you are going through. My mother in law is confined to a wheelchair except for short trips to the bathroom with a walker. I worry about suffocating, just like you.

 

[CindyM]

Hi Freddysnetty- welcome to the forum. Your hubby sounds like a great guy! So sorry he suffers from this horrible disease. I think a lot of our PALS would agree with him that laughter is one of the best ways to cope. Regards, Cindy

 

[Icanmanz]

Hi Annette! My name is Irma, and I live in Tomball. First, let me tell you, I am so sorry for the reason why you are here. May God bless you and your husband. Your post really tore me up. I'd like to ask you a question if you don't mind. My mpm used to tell me all the time, curiosity is what kills a cat, and I am the CAT now! LOL!

I read in your post that your husband is a musician here in Houston. You don't happen to live in the Brookshire/Katy area do you? The reason I am asking is because here a while when we found out that my late son had ALS, my brother that resides in Katy told me that he had a friend that was a musician, and I believe he sang blues, too. Anyway, my brother told me that this young man came down with ALS, and he heard he was in pretty bad shape. He told me he was the heck of a musician. I believe he was in a band. I am not trying to be nosey, I am just curious.

Keep us posted Annette, and may God bless you. Feel free to ask me anything you want to know. I do not mind answering questions. I am here to help. God bless!

Irma

 

[MtPockets]

Thank you all for your sharing

I know for all of us who have ALS every day gets a little more difficult. When we come on the forum and hear your stories it brings us hope and helps us know that we are not alone in this battle.
I hope for those who have lost loved ones already this painting brings a little comfort.
We are looking forward to a place with no pain, no sickness, no disease, and definitely no ALS.
God Bless
Capt AL

 

[Icanmanz]

Al, I have the utmost respect for you, and I love you for that as a dear friend. I want to thank you so very much for showing me the stairway that my son, Rudy climbed to heaven on June 3, 2007! May God bless you friend!

Irma

A very beatiful picture. It brought tears to my yes! You are right, we are not alone!

 

[MtPockets]

All I can say is Amen.

 

[terri]

That is a great picture, AL. May I ask if you know where a copy may be found?

Take care.

terri

 

[freddiesnetty]

Yes it is him, thanks for asking. He just did the telethon here for Houston and it really lifted his spirits, these damn musicians are hams to the end..........lol I was so happy to find this site, I sometimes think that I am losing my mind. This is the most cruel disease I have ever seen. These people that are actually living with it are THE MOST BRAVEST PEOPLE I KNOW. I will be around here alot, it makes me not feel so alone. I was up late last night just reading this site, alot of knowledge here and I need it. I am just so scared!
Thanks to all!

 

[Icanmanz]

Hi again Annette! I talked to my brother after I sent you that post. He told me that he met you and Freddie through Patricia, Autumn, Justin and Miles. Does that ring the bell? These folks they live around Brookshire or Monaville. My sister was married to Patricia's uncle. My sister's husband passed on Dec. 30, 2006 due to Diabetes. My brother told me that Freddie was a great singer. My brother's name is Roy, he is a trucker. I am sure you guys are the same folks. He was so surprised when I told him about you. Take care Annette, keep us posted!

Irma

 

[freddiesnetty]

small world

What a small world, it is. I am so sorry for your loss. This is the most cruel thing I have ever been through. I feel so guilty sometimes because I am so tired and feel like I wish this would end. He is so talented and can not do his craft. It truly is hell on earth. My mother passed away in 2000 of cancer, I thought that I would never get through that but now I have figured out that was an opening act for this. I wake up every day and thank GOD that he is still here. God truly is my beacon. My email is [email protected], email me sometimes I would truly love to hear from you.

 

[Icanmanz]

Hi, Annette! Small world it is! I will email when I get my head together. Exactly 5 months today my son passed, and I have the blues bad. I feel so down. I was in Houston yesterday. I went to visit my son's grave, and remained there for a while. It was a nice, but sad visit. After I left the cemetery I attended mass at the church where his services were held. Again, I felt my heart breaking. It is so hard when you lose a loved one. Annette, can Freddie still talk some? Can he still get around? Sorry for my questions. Let him know that there is someone on this forum that heard what a great singer he ( God, should I use is or was?) I am so sorry Annette! God bless you and Freddy. How old is he? My son was 15 days shy of 39 when he passed. Okay dear, I'm out!

Orma

 

[Icanmanz]

Sorry I spelled my name wrong! My head is not clear!

Irma