Final stages of ALS

[digby]

My mother was just told she has ALS. One of the Doctors said she is in the final stages. And its progressing rapidly. Does anybody have any idea how long the final stages can last? What usually happens in the final stages?

Thanks you
Digby

 

[PDaddy]

First, I am so sorry Digby, what more can I say?

Second, what are her symptoms and how long has she had them? Her age?

 

[digby]

she started having problems with her feet 2 years ago, but she just put it off as poor circulation. She just turned 67. She really started going down at the end of last year. Her right hand was getting really weak and she was finding it hard to use it. The doctor sent her for carpel tunnel surgery, but it did nothing and during that time her left was getting worse. Her right hand now is totally useless and she can barely do anything with her left. Her legs are getting weaker day by day. she just had a bad fall 3 days ago. She didn't break anything but got banged up good. Her voice is getting weaker. She already has COPD(lung disease) and a partially collasped lung as well as empazima,and bronchitis. (don't mind the spelling..lol) I live at one end of Canada and she lives at the other end of the country I was just down to visit last week for 2 weeks. She is gettingweaker. I was just wonder what are the final stages are like what too expect with her condition and how long final stages can last.

 

[Icanmanz]

digby, bless your heart, and your sweet mom may she rest comfortably, and become painless during these last days. Did I read that your mom was just diagnosed'ed? If so, has she been experiencing the Als symptoms for quite sometime, but did not know what it was, and finally went to see doc? I am sooo sorry this is happening. You know, my son, I remember, and also have letters from him, when he lived out of town, describing the liitle symptoms back in October of 2002. Little did we know about this damn, demonic disease! He let it go at that, was okay for another while, and then Bam! The year was 2005 and the symptoms were at him like crazy. It was terrible. An uncontrollable cough 24/7, he started feeling tremors more and more. His torso, let me tell you, it looked like he had worms under his skin! His speech started getting slurred, then I thought that he was walking around with a stroke. I urged him to go and see a doc. He went to see a doc, then at a latter appointment, I got the call that killed me. Als was introduced to me, and I died, but am still breathing! Can you figure that out? I am sure you can, dear. That is why we Pals and Cals are so close to ech other, and we can understand each other so well, and we pour our hearts out to one another. I will be praying for you and your dear Mom. God bless you all!

Irma

 

[digby]

her symptons started out almost 2 years ago and they were just minor at first. It was last fall that her arms and legs really started to bother her. And yes she was just diagnosed a couple weeks ago. Does anyone know how long the final stages can last? Thanks you Irma for your kind words.

 

[Icanmanz]

digby let me tell you something about Als. It is a sneaky disease. It affects these Pals differently. Each case of Als is different. The symptoms may be the same, but the final moments are different. But, let me tell you what I have learned from this forum, most of these Pals when they depart, they do it peacefully. I was sooooo afraid to face my son's final day. I did not know what it was going to be like! I was not ready to release him, and yet I did not want to see him trapped in a non-functional body, especially after knowing what he was like when he was healthy. It was just not fair. Well, the day finally came when he had to go Home to his Father, and I told him to go ahead and join his Father. It was sad, it was frightening, very, very heartbreaking. Who wants to see their child take the last breath? He did not struggle for air or anything, the only thing that really tore at me was that he went through spasms seven times before he passsed. I held him real close to me each time this happened, and I could see the tears coming out his eyes, he could not talk, and me, well I wanted my life to end then. When he finally had his seventh spasm his heart stopped, and my world stopped, too. I am slowly coming out of this, but I still cry. I think about him all the time. Well friend, I am checking out, may God bless you and your dear mom. God bless us all!

Irma

 

[cajuntexusa]

I do not know how long the final stages are. I have read that it happens at a very slow rate. I can tell you to make her as comfortable as possible. Did her doctor offer her anything such as Rilutek?

I hate this disease along with many others. I did read Tuesdays with Morrie and it has helped me in some ways to learn to deal with certain things in my life. ALS is a horrible disease with no cure. We are hoping that Lithium will slow the progression.

My husband was diagnosed back in March 08 with ALS (Arm onset) and has had symptoms for a little over a year.

God bless,
Aleta

 

[crystalkk]

digby,

Who is taking care of her?

 

[digby]

she is in the hospital. She is unable to stay in her own home. She had no one to stay with her at home. She is waiting to get into a nursing home. One of the Doctors said she is in the final stages. Andthat she won't make it in a nursing home. She is not hooked up too any machines but she does have some trouble with her breathing. She is also prone to getting phnenoma. And has COPD. I know no one can put a timeline on how long she has. Iwas just wondering if other people that have gone through this knows how fast or long it can go on. I am on the other side of the country and its so hard being away.

 

[anneinma]

So sorry

Every person is different. I wrote about my husband's recent passing below. He was diagnosed less than a yr. ago. Savor every day. Try and find something good in each day as hard as it is.

 

[laurel]

Digby,
I am sorry to read about your mom. Are you wondering about whether you should fly out to be with her since you are asking about how long the final stages last? I think her doctor could give you an educated guess since you mention that she has COPD, bronchitis, and is prone to pneumonia. She will be more vulnerable with those issues, and he mentioned that he didn't think she would leave hospital and go to a nursing home. It would be fine for you to call him and ask your question. Obviously he can't predict exactly, but with her respiratory issues he will have a good idea of how bad her lungs are right now. Blessings to you and your mom.
Laurel

 

[cajuntexusa]

Digby

I am so very sorry to hear this is happening and you being so far away. I agree, call your mother's doctor and ask the questions. That is what they are there for.

I know that it is difficult to be there but try if you can.

God bless,

 

[beaner1]

Hi Digby,
I'm from Redcliff (right next door to you), and my husband has ALS - he was diagnosed 2 1/2 yrs. ago but has had symptoms for at least 2-3 yrs. prior. The doctors tell me that he is in the latter stages too - but have no idea how long, etc. - this disease is so different for everyone. My husband was just kicked out of the hospital in Medicine Hat on Wednesday - they sent him home to die cuz it wasn't happenning fast enough - he'd been in the hospital for 83 days by this point, and originally went in for pneumonia which caused a heart attack - he's 47 yrs. old.

What the doc told us is that as a terminally ill patient weakens they begin to silently aspirate into their lungs, which in turn causes pneumonia, and typically that is what the patients die from. My husband has had pneumonia at least three times this year due to aspirations. He cannot walk at all, has limited use of his hands and arms, voice is very weak, and breathing is very laboured. He is on quite the string of medications - morphine for pain and anxiety, atavan (anxiety), heart meds, stuff for constipation (as if he doesn't have enough to worry about!), sleeping pills, combivent meds for breathing, and is on oxygen 24/7 - as high as the respirator will go. He can still eat fairly well - as long as we mash or cut up his food, but has probably lost 45 lbs. since last fall - he's 6 ft. tall, and if he weighs 120 lbs. I'd be surprised! We try and fatten him up as much as we can, but he can't breathe well if he overeats so is eating several small meals/snacks a day.

If you'd like to talk more (as we're so close!) send me a pm and I'll give you my private email and/or phone number - I've received so much help, I'd sure like to give back!
Good luck!
Beaner

 

[CindyM]

Hello Digby- sorry to hear about your Mum. I am glad you found some friends here. I believe the docs may be doubly concerned for her as she also has lung problems. Just a guess, of course, but it seems like you and she have been handed a double challenge. Keep in touch. We will help in any way we can...Cindy

 

[digby]

thank you beaner for your message. It sounds like your husband is having a hard time. I am really sorry to hear about your troubles. Maybe its good that he his home with you. I can't believe he has had pneumonia 3 times and he is still going. He must be a very strong man. You are right you are really close. I was too redcliff a couple of times to a hair salon there. Maybe sometime we could talk. That would be nice. I will talk to you again on here. Thanks again

Digby