Firswt visit from home health care/hospice

[nebrhahe53]

Had my first visit today to try to help with peg tube. Nurse was from hospice and said that she sees survival from diagnosis to death of about 1 year. Not what I wanted to hear Also took last blood test to rule out any other possibility no matter how remote. Its official, I have ALS. Wife was heartbroken.

 

[MaxEidswick]

>Nurse was from hospice and said that she sees survival from diagnosis to death of about 1 year.

wait for Appel ... you staying w/ us? what dates? daughter arrives on 9/10, but we can make room. Allergic to dogs?

 

[nebrhahe53]

had to postpone till October Max not sure of dates yet

 

[gooseberry]

Remember, everyone is different. There is no set progression.

 

[Vincent]

That's a worst case scenario. I prefer to think of Steven Hawking, diagnosed in 1963. Maybe one day I'll be brilliant too.
Vincent

 

[SMP51]

so you have an expiration date on the bottom of which foot?

 

[pecas]

I'm so sorry. I think her view is skewed, though, because she wouldn't normally interact with folks who were on a slower progression. Don't give in!

 

[gooseberry]

Many of the health care professionals we have encountered outside of clinic, have no real understanding of this disease. If you have questions about things talk to your clinic doctor when you go. They know the disease and ar ebest prepared to assess and offer aan educated opinion. Clinic offered an assessment for my husband when I pushed but they cautioned me it was an educated guess and everyone progresses differently...that things can change. Please, look to all you can do. Go enjoy each day with your wife. Experience all you can. Its about what you can do.

 

[affected]

NO ONE, not a doctor, nurse or voodoo man should ever say anything like that!

No one knows what you progression will do and what will happen.

Yep, we know the statistics and the probabilities of being in the average, but we don't know how an individual will progress along.

Focus on today, let tomorrow unfold. I think someone should tell that nurse some facts about being professional. I feel quite angry to hear that nurse thinks she has the right to make statements like this!

 

[GregK]

Also please consider one of our own here one this forum: Diane H.
Diane was diagnosed back in 1985! (yep! ~29 years ago) and she's living, living well and glad to be around to help the rest of us!

Diane has her own website with load of information: ALS: From Both Sides

 

[gooseberry]

Well said Greg!

 

[Barbie]

Neil, do not accept what a hospice nurse said. that was inappropriate of her! She is not an expert in ALS and 1 year is not the average survival rate in ALS. I would say just in my opinion and observation here on the forum that a 1 year survival rate is very fast progression and not all that common.

 

[skipper66]

That was totally inappropriate for the nurse to say in my opinion. Each person is different. My dad will be 80 tomorrow and I know with ALS and his age something could happen to him at anytime. But, as of today it doesn't look like he'll be checking out anytime soon. We are just getting too know you on here so plan on being here for along time so we can pick on you. lol

 

[Atsugi]

Re: First visit from home health care/hospice

... Nurse was from hospice and said that she sees survival from diagnosis to death of about 1 year...

Let me chime in with only my experience and my humble opinion.

First, we found that most doctors had little understanding of ALS.
And no nurses had any understanding of ALS.
Nurses, no matter how experienced, have no qualifications in diagnosing.

Second, the ALS specialists gave Krissy the party line, 3-5 years.
But privately they told me one year. (I kept that a secret from Krissy.)
She lasted 9 months. She was totally locked in for the last 24 hours.
But also high as a kite on morphine.

I think, Neil, that your nurse was out of her depth, and shouldn't have ventured such an opinion. Three of my relatives are very experienced hands-on nurses, heavily involved in patient care for decades. But they will be the first to say that they are not doctors, and not qualified to offer such an opinion.

 

[Bad Balance]

Perhaps she was referring to life span after entering hospice care?