ALS Timeline of progression(17 months) and questions

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Alsmess

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Hi,
My dad has ALS, and started to show symptoms of ALS a year ago.

January 2019 - First he had difficulty with his voice and talking and had muscle twitches, and slightly loss of power at his one arm. These were at minimum , like around January 2019. He was laughing easily to funny things much more than his usual reaction.

April 2019 - A little difficulty in walking, loss of power in left hand to grip. Slower and slurring speech get worse. Sometimes crying. I didnt see my dad crying until this illness.

August 2019 - Same symptoms keep getting worse. His loss of power increased in his boyh arms and legs. Started to walk slower, started to talk a bit more slower. Laughing and crying was same. He doesnt cry at home often but for example if a relative or friend see him after a long time, he cries. (Feeling shy because of his situation).

December 2019 - A bit more slower speech, slurring a bit more. Walking slower than before because of loss of power. But still was able to go out and make 30-60 minutes of walking daily. (Always with my mom, when walking, but no need for support to walk). Still able to drive car.

May 2020 - Now his rate of walking is much slower, he didnt go walking in last 3 months because he walks very slowly anymore and its hard/tiring for him. His steps are around a feet. He can walk in house without support, but he cant move his arms as good as before. So he needs help for showering. He can eat himself but for example he cant break a bread wih his hands, because of more loss of power. He cant drive a car anymore. Sometimes coughing when eating, but never told that he has respitory problems. His appetite is good and he didnt lose any weight.

When i asked to Doctor if it can be PLS for a hope, he personally said me it is ALS %99, %1 PLS, but this was like 5 months ago. My dad dont want to go doctor anymore.

Now, i want to ask you a few questions ;

1) Is this a fast progressing ALS, or normal. Not a slow progressing for sure?
2) Is there a chance that his symptoms to get plateau for speaking/walking/power?
3) Do you still think is there a chance that he is PLS, not ALS? Is there a chance that he is PLS while he has both walking and speech problems, loss of power and excessive crying/laughing in some situations?
4) If you had ALS, can you tell me how was the timeline for loss of speech totally or walking, using your hands to eat on your own.

I totally know “you are not a doctor and you cant exactly know the answers of my questions”, im just asking your opinions. I will be very happy for every single answer and opinion.
 

Nikki J

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Looking at your previous posts it seems he had an emg that was consistent with MND which would be ALS rather than PLS

it sounds like a medium progression at most as he is breathing ok apparently and getting around. If he is coughing I wonder if his swallow is impaired. He may need a feeding tube if he wants one at all. He may be aspirating

plateaus happen. Not for everyone but they are not uncommon. We can’t predict who will get one when or how long

everyone is very different in progression so hearing other’s timelines really doesn’t help predict yours. Even family members can vastly different.
 

Alsmess

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His swallowing is not as great as normal person but he has not difficulty with eating most times. Sometimes if he eats something like nuts etc. he “may” cough but thats all. He wouldnt want feeding for now because he can eat well. I hope we doesnt need that on a soon date.

He ignores medicines like Rilutek and going to doctor anymore because it is not making any difference for most patients according to what he reads and i also read so...(he is somehow right about this i guess). But i wonder if there is still hope for 1-2 more years to still be able to walk and speech without needing any equipment to breath or eat. I hope it plateau :/
 

Dee Dee 0617

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You have a magnificent heart. Your Mom and Dad did a great job. The love and respect you have for your family is so evident in your writing.

I made the mistake of not getting a feeding tube early on when it was suggested, because I didn't "need" it at that time. I also wasn't aware of why it was being suggested at the time. I need it now 3 1/2 years later, and because my breathing is compromised I may not be a candidate any longer without further complications. While Daddy is still pretty strong, I would council to have it done while it's still not needed. I do take rilutek, and radacava, I can't tell you if it is doing anything or not, because I don't know at what stage I would be without it.

I am so sorry your family has been afflicted with ALS.
 

Nikki J

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He can still eat if he is able with the feeding tube. if he ever wants one though sooner is better. The cough still worries me.
He isn’t going to the doctor but for anyone reading who thinks they want one sometime they should pursue it the first time the doctor says it is time

feeding tubes and meds are personal choice.
 

Firefighter58

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Yes now is the time for a feeding tube,. I still eat normally but much slower now But I use the tube for bad tastings vitamins and prescription pills. Your doctor can prescribe medicine for the crying, mine did and it stopped the embarrassment of crying spells for no apparent reason. ALS is much easier to live with if you take the advice of your doctor and the folks here who have a ton of experience dealing with this terrible disease.
Al
 

Alsmess

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Thanks to all of you for answers.
As I read some info and understand that feeding tube operation is not risky, not hard, not something that will make my dad to feel pain and not something that will restrict his usual daily life like walking, eating etc. So after pandemic get a little better i will talk this issue with him seriously and we will consider this. But for now I’m a hundred percent sure he would ignore it anyway because its not hard to eat for him for now in most cases. Just choking maybe once a day for a few seconds and its okay for him. Thats why he won’t accept it but after a few months, i will make him sure to take it, before its late.

Do you think chances are higher for him to spend 2020 with still being able walk and speak, or it is going on a fast pace according to timeline ? I’m asking this because we will have more time to spend with family after 2021, thats why dad could take more help after 2021 because of my personal life will be in a situation that i can take care of him more next year.
 

affected

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The only predictable thing about ALS is how unpredictable it is. We just can't answer these questions, I'm sorry. I know you want to know, but every person is different and there are so many variables.
For example one aspiration when eating and a pneumonia could be life changing for him.
Progression speeds up and slows down in ways we can't predict, and moves around the body.
You are best to plan for the fastest progression, help him do all he can to live in each day, and try for the best quality of life.
Every day is a blessing and no one knows what tomorrow will bring for any of us, ALS or not.
Planning for things in a year or two with ALS isn't really practical, I'm sorry but that is the reality. Start planning what you can do with and for him now, not in a year or two.
 

JerryM

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If your father is a military veteran, get in touch with the VA. It's good he's not losing weight. Don't let him give up. Yes there are meds for the crying/laughing.
Check out available clinical trials near his location.

God Bless !!
 

affected

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I would actually say that it's important to do things according to what your father wants. Many PALS choose many different mixtures of strategies according to how they want to respond to their own rate of progression. Find what he wants and advocate hard for him to have that - try to avoid things like saying some strategy or refusal of a strategy is 'giving up' or is 'fighting the fight'.
Supporting what he wants is more important than trying to guess timelines.
 

lgelb

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You have received good advice. We don't know what tomorrow will bring, but once your dad understands what is going on, the choices are his.

The most predictable thing is that if your dad does not get a walker or wheelchair, and he can only walk a foot at a time right now, he will fall at some point and get worse or die. That would be the first thing to talk about, for me.

It is also important that your dad knows that a feeding tube is available and that the need for it can come suddenly. But it is also true that day may not come before his breathing becomes the major problem. My husband was advised that he needed a tube nearly 2y before he died, still eating a modified diet without one. But others choke unexpectedly and never recover.

If nothing else, I would try to get across that nuts, rice, corn, peas, things like that are more dangerous and could very much shorten his life. Diets can be modified. For example, nut butters can be separate or an ingredient in a pudding or smoothie, and cornbread with no kernels can be dipped or mashed into milk or something thicker.

Best,
Laurie
 

Alsmess

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@JerryM, my faher is not military veteran and he is using antidepressants for a few months. Thank you all for your answers again. I will seek for advices from this community later again. I wish the best for you and your patients.
 
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