Is there a rhyme or reason?

karzy81

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My dad was diagnosed in March 2018. He walked out of the office, slowly, but on his own. September 2018 he was still walking with a walker. Breathing was great. Fast forward to May, he is in a wheelchair, his breathing is under 60 and he has very little movement in his arms.

He can still eat but gets tired when he does and is constantly spitting up bile (what is that about by the way).

My question, or I should say comment, because there is never any answers with this disease, is that they say progression stays it’s course and continues progressing as it has been progressing. If this is the case then do we have no hope of a plateau? I hear stories of people progressing fast and then all of a sudden hitting a plateau and remaining the same for a while. I don’t know what I’m even asking here, just having a rough night and wanted to write here.
 

lgelb

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I'm sorry for your rough night, K. I hope tomorrow is better. Feel free to post any time, in this thread or another.

Does your dad have a BiPAP? Is he considering a feeding tube? Sometimes it's hard for a PALS to process food, even apart from swallowing, because the muscles that help it move between the mouth, throat, esophagus and stomach are weak and get stuck or leak. Sometimes changes in what he eats and drink can help. Crunchy, shredded, grainy and mixed-texture foods can be the hardest.

Progression tends to be fast, slow, then fast, roughly speaking. But for some people, and your dad may be one of them, it moves pretty fast all the way through, even in fits and starts.

If he needs BiPAP and/or a feeding tube and does not choose them, his life will be shorter. If you have any questions about how getting either one works, let us know. Does he go to a clinic?

This would be a good time to discuss what his wishes are, make sure an advance directive is done, etc. but the quality and quantity of life from here in is also dependent on his state of mind and what he still values and wants to accomplish. So that's a good talk to have if you haven't, or update if you have, since he is progressing more quickly.

Sometimes people think that kind of conversation is giving up or courting death, but it isn't. If you give your dad the invitation and space to stay honest with you, you will always be happy that you did.

Best,
Laurie
 

karzy81

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I'm sorry for your rough night, K. I hope tomorrow is better. Feel free to post any time, in this thread or another.

Does your dad have a BiPAP? Is he considering a feeding tube? Sometimes it's hard for a PALS to process food, even apart from swallowing, because the muscles that help it move between the mouth, throat, esophagus and stomach are weak and get stuck or leak. Sometimes changes in what he eats and drink can help. Crunchy, shredded, grainy and mixed-texture foods can be the hardest.

Progression tends to be fast, slow, then fast, roughly speaking. But for some people, and your dad may be one of them, it moves pretty fast all the way through, even in fits and starts.

If he needs BiPAP and/or a feeding tube and does not choose them, his life will be shorter. If you have any questions about how getting either one works, let us know. Does he go to a clinic?

This would be a good time to discuss what his wishes are, make sure an advance directive is done, etc. but the quality and quantity of life from here in is also dependent on his state of mind and what he still values and wants to accomplish. So that's a good talk to have if you haven't, or update if you have, since he is progressing more quickly.

Sometimes people think that kind of conversation is giving up or courting death, but it isn't. If you give your dad the invitation and space to stay honest with you, you will always be happy that you did.

Best,
Laurie
Hi Laurie,

Always grateful for your response. He does have bipap and it doesn’t help that he also has echolasia which doesn’t help with his eating. He goes to a great clinic in Toronto and we have discussed feeding tubes. I’m Canada they have something called MAID which is medical assistance in dying and he is registered with them and can choose to do so at any point so the discussions have happened. I guess I just wanted to know if the speed will remain the same at this point but there really is no answer. Thanks for the reply.

Karen
 

blitzc

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Karen,

I can totally understand your question regarding the progression of your father and your deeply emotional concern. We all have rough days. I found comfort in the reply Laurie has given you. The many highly valued members of this forum have a plethora of insight and experience that all of us Cals and Pals can trust.

ALS has graced us with daily, weekly, monthly, and even yearly losses. With acceptance, we can learn to make the adjustments and modifications to daily living so that our lives are not filled with heartache, but joy in all that life still has for us!

I am not dying from ALS, I am living with it.


Cathy 💕
 

ReginaS

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My pALS was diagnosed in Feb. 2018 and was still walking rather OK by then. By November he had his wheelchair and was glad to have it. He did not need or use trilogy/BiPAP very much until he was rather close to the end. He never wanted a feeding tube. He never experienced a plateau.
Usually he could predict which abilities he would lose next. His lungs / breathing was the one area that was not affected too much.
Once his ability to swallow was too compromised the decline became more rapid. He would feel too much discomfort swallowing something like ensure plus as it caused too much mucus in his throat. Then he only ate what he liked and could swallow which was very smooth soups but they don't have many calories (dairy / cream did not go well either.) He could not keep is weight up he lost more abilities faster. Eventually he could not swallow at all.
The decline was breathtaking in the end. However, just as Cathy said, there was joy and humor in just about every day.
 

vltsra

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Karen, my PALS is a slow progressor, and was in pretty good shape for 3 1/2 years. Suddenly in March he progressed very quickly. He was walking independently before and even playing pickleball. Now walks with a walker, tires easily, and for a while would not eat much. He had the same issue with bile, said food did not taste good. We put him on Prilosec and that has helped a lot, he gained some weight back (because we were feeding him high calorie foods 6 times a day). His appetite is better. Bipap has helped him immensely and I think he has hit another plateau. Everyone is different though. And you are right, there is no answer.

V
 

affected

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I am always concerned when anyone says 'progression tends to be xxxx' because the only predictable thing I have ever found about ALS is how unpredictable it is. Yep there are often a group who can say it was this or that way and they seem similar. But to take any set of similarities and try to predict what will be for anyone is impossible. We only find similarities when looking back.

This is why trying to organise as much in advance as possible is wise, then just living each day as it presents gives the best way to find joy in each day. I'm truly sorry we can't give something more concrete, but we can walk along with you.

FWIW my husband probably progressed really slowly for a couple of years with symptoms we barely noticed. Then things got a bit faster as the bulbar issues started. Then it went wild and he was gone within 11 months of diagnosis. We never had a plateau, I just ran like the clappers trying to keep up.
This doesn't mean anything so far as what will happen to another, but does mean cherishing every day, and talking clearly about what matters most so that you make the most of whatever time you have together - now.
 

Narrowminded

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We were probably further on the other end of the spectrum than Tillie. Looking back, I think there were small insidious symptoms we never realized were symptoms at all. Then he started limping and that started the progress. I guess for a while you could classify it as slow, because it took us 2.5 years for a DX. Mostly due to Brian “not having time for that”. After DX it was 3 years until he was trached and vented. He was in a WC w/in 2. Years of official DX. Once trached and vented things slowed a little again. We spent 8 years in that state before he finally succumbed to ALS. My guess is he would have gone 8 years earlier had we not vented.

There are others here who had more good years before vents and very short time on the vent. It’s never the same for anyone unfortunately. I so wish we had answers or timelines to give those that follow, but we don’t. So as the others have said, just enjoy every moment you can.

Hugs
 
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