When do they hit you with the prognosis?

[missbelle]

Hey guys. Hope you're all okay! My mom just got confirmation of ALS from a second neurologist last week, and are going to her first ALS clinic day tomorrow. I was wondering when the doctors will tell us how long my mom has? Will they let us know tomorrow at the clinic after doing an assessment of progression? Do they tell us what kind of ALS she has? Do we have to ask or do they just tell us? Is it better to not know? I have terrible anxiety so am trying to prepare myself for anything shocking or unsettling. I'm so scared. My poor mom.

Anyway, any advice or words of wisdom are always appreciated, and I thank you in advance for your time!

 

[soonerwife]

Sorry to hear about your mom's dx.

Where did your mom's symptoms start? That should let you know what type she has.

My PALS was dx'd in Oct '15, we have never been told how long they expect him to have except for the standard 6 months to 3 years because he has bulbar onset. He doesn't want to know but I do want to know. When the progression moves to the point that I am concerned, I will be asking via email and letting his neurologist know that he doesn't want to know.

I hope this helps? Again, so sorry to hear about your mom.

 

[codyclan]

My husband is also Bulbar Onset. The first neurologist gave us the standard 18 months - 3 years for bulbar onset, but the doc at the ALS clinic says that he never gives such an estimate because he's always wrong. From our discussions for the last 3 years, it appears that it is hard for docs to give such life-span estimates, especially if PALS choose a bi-pap and PEG tube.

 

[missbelle]

Thanks guys! Yes, this helps. I was thinking of asking in secret too, in case my folks don't want to know.

Her symptoms started in May of this year with slurred speech and difficulty swallowing. That has progressed quite a bit and she now has weakness in her entire left side. I suspected Bulbar Onset but neither of the docs have mentioned it.

 

[soonerwife]

My PALS started wit slurred speech as well in July'14. His is bulbar onset.

 

[missbelle]

Thank you.

 

[affected]

Sorry to welcome you here.

Hon don't ask - the cannot answer this! When they do, it's a vague answer that means nothing. Every PALS is so different, even within the subsets of onset types. They live sometimes a couple of months, and Diane here is 31 years.

The type he has is ALS and we talk about onset. So if someone is called bulbar onset it started with the tongue - speech and swallowing. You already know your mum's onset. All PALS that live long enough develop bulbar symptoms either sooner or later.

What is really the important thing is not her impending death, but what life she can have now and how much you can be involved in making it wonderful for her.

 

[Barbie]

remember that no one has an expiration date stamped on their foot. the docs cant give you a prognosis. they can guess but that is all it is. there are people here that lasted a few months and then those that lasted years and years. The docs told my husband 3-5 years...it was almost nine. not saying that will happen for you, and not saying those 9 years were great. but this disease is a bugger and docs don't know it all.

 

[Narrowminded]

Welcome Missbell, the people here are awesome, so ask away Don't ever feel that a question is stupid or not worth it. We all learn from others questions.

My DH was dx with limb onset. We spend 2.5 years figuring out what was going on as he was limping for no apparent reason. We are now just about 12 years in including the time hunting. He was trached and vented 6 years ago, or he probably still would not be here. There is no way of knowing when anyone will go. Even with the vent, we have had "scares" to the point i call him my cat with 9 lives.

Don't try to pin it down, you'll drive yourself crazy if you do.

Hugs,

Sue

 

[faithandlove]

With ALS some of us progress slowly and some much faster. When I went to the ALS clinic recently, they decided to see me monthly instead of every three months, because I am progressing fast.

When I go to the clinic, I see bulbar ALS patients who can not talk, but they can walk. I was thinking which would be better? I miss walking, and I'm tired of worrying about falling. It was unfair to feel that way, since I do not know the obstacles, yet, that they face. They may feel the same way about me being able to talk and express my needs to my CALS.

You have to also take in to account what the PALS will and will not do. Will they have a PEG? Will they be willing to use a bi-pap or trilogy? Decisions need to be made, but you will need to wait for your PALS to make those decisions. It is important to get legal documents in order.

I decided to use the trilogy to help with the CO2 so that I don't sleep so much during the day. I will get the PEG, but it may not be used. I just want it just in case I change my mind. From what I read on this forum, if you wait too long, you won't be able to get one. So, just in case, I'm getting one.

Many decisions are made based on quality of life. When I was just sitting on my lift chair all day and then going to bed, I wanted it all to end. Then I got my PWC and a handicap van, and my whole outlook on life changed.

I'm sorry you and your family are going through this. This forum will give you good advice and support when you need it.

Hugs,
Deb

 

[missbelle]

Thank you all so much for your thoughts on this.

They did not give us any prognosis yesterday at the clinic, and I felt relieved. I had my paperwork for Family Caregiver Leave (we're in Ontario, Canada and this is a workplace security option where you are allowed 8 weeks per calendar year off of work to care for a family member) and the doctor said there was no point in signing them now since my mom is in okay shape! She has progressed since the first visit in July, now has some weakness in her left arm, but all the tests and people we met with had no major concerns at the moment.

So, you're right. I am trying not to get ahead of myself but with anxiety it's hard not to worry. I have been reading more and more stories about cases of ALS where people were told the standard 2-5 years but have lived with the disease for 10 or more. These stories are encouraging, I'm sure not just for me but for many of you as well. I also realize the time can be shorter. So many unknowns in this. In anything, really.

Side note: The doctor also told us yesterday that the clinic we're a part of will be revealing some results in March from a drug trial that they've been doing. She was very excited about it! I know it won't be a cure but hopeful something useful and encouraging will come of it.

Just gotta keep taking it day by day. One step at a time. Thank you all again, I truly appreciate your time.

 

[Lkaibel]

Best wishes for a slow progression for your mom. My husband is getting near to 4 months from diagnosis without major changes so it does indeed happen.

 

[lgelb]

If she presented w/ problems with swallowing and speech, that is pretty much the definition of bulbar onset. But ALS speeds up and slows down in different ways so the lack of expiration date is true. We do know that on average, bulbar onset and older PALS progress somewhat more quickly. Breathing and nutrition are the two keys for how long most people live.

Best,
Laurie

 

[Atsugi]

For anyone reading the question about prognosis, I'll give my little story.

I think every doctor pretty much gives the party line answer: 2-5 years. This is for lots of reasons, the biggest being, "Who knows?" ALS is quite variable.

But I got a different answer.

This happened on two different occasions.

We were with an expert specialist who really understood ALS very well, and he had examined my wife and her tests at length. Our appointment was quite long. At the end of the visit, as I accompanied my wife out of the office, I excused myself very quickly as though I had forgotten something. Then, alone with the doctor, I told him my predicament. "I have to make practical decisions. I'm planning on building a house to accommodate my wife's needs. Of course, I'll need to take out a half-million dollar loan. Practically speaking, can I plan on my wife living long enough to use the house?"

Each time, the doctor looked down, shook his head, and said quietly, "She won't last a year." So I didn't build the house. Unfortunately, of course, they were right.

Of course, I never told my wife. She hoped for a very long life to come, and I wouldn't take that hope away from her. Hope, even when it's unrealistic, is sometimes all we have.

 

[missbelle]

Mike, thank you for sharing your story. I'm very sorry to hear about your wife. I was wanting to know for practical reasons as well. The neurologist said she will let me know when the time comes. You're absolutely right about holding on to hope.