Understanding progression

[Labinma]

Hi all again, (sorry if repetitive in nature)As a CALS trying to get a handle on timelines of progression. I was wondering if I could get your best guess. My PALS was first diagnosed in June 2014 and only had dexterity issues in his left hand. Flash forward 2 years later, this June 2016, his left hand is claw like, he is slurring, shows weight loss and atrophy in right hand, and sort of all over, and has gate change (left leg struggles, almost have seen him pick it up by pant leg when going upstairs?), however over all 100% functioning, going to work everyday, driving a car etc. You had suggested to mark out a timeline, including before he was diagnosed, however I cant recall or note things before the June 2014 diagnosis. All I could reach for is a personality of less patience and anger perhaps (we had two years prior to his diagnosis that our marriage suffered from the verbal exchanges). Otherwise, symptoms can really only be seen or able to document since June 2014. I followed your advice, and I guess if I look at June 2014 and what was going on and compare it to June 2016 (now), then assume June 2018 (two years from now), then can think that more progression in more forms would be manifesting? Any feed back is appreciated. Many thanks, Lisa

 

[Nikki J]

It is really hard to say. Clearly he is classed as slow progressing but progression is not linear so very hard to say what the future holds. It sounds as if you think he is starting bulbar and lower limb involvement? What does his neuro say?

 

[JennyC]

Definitely sounds slow. My mom is very quick as far as progression I think. Her first symptom was last November and it was left hand weakness, by December she couldn't run anymore and was falling, by June she was using a rollator and now she is wheelchair bound, needs to be fed, bathed, showered and is nearly impossible to understand and is starting to choke on her food and liquid. But like it was stated, no one knows how these things go. She could ...I'm sorry I can't find the words, I have been having trouble with that since surgery...her progression could pause and she could be like this for a year...no one knows, I think thats one of the most difficult things.

 

[affected]

There is just no way to tell I'm afraid.

Progression can speed up and slow down, and it's the breathing that is the thing with how long do they have.

Sorry we can't answer, the variations on what happens and when are staggering.

Of course other variables are keeping weight on, using breathing support early and ensuring safety as injuries from falls can be fatal or hasten progression.

 

[Aussiemndcarer]

Lisa,this beast takes us all on a different journey. My PALS was diagnosed in 2014 as well. His progression has been rapid in comparison. Every month we seem to slip. First it was just inability to do fine motor tasks with left hand. He was taking a midday nap or afternoon nap for a couple of years prior to 2014. He was working hard,but very fatigued. We put it down to getting close to 60!!
Then we experienced tired legs.inability to weight bear when standing,so my PALS started pushing a manual wheelchair for support first. Then wham! It was breathing. Not being able to be on his back & breathe.He has been on NIV for over 20 months now.currently,he cannot feed himself,cannot shower,has lost use of all limbs .He cannot move his hands. He cannot talk without his air mask on. He has full cognitive functioning. Gosh I hate ALS/ MND.

 

[Labinma]

Ugh such a cruel disease. Thank you all. Can now just give up on the guessing wondering and control. This is teaching me a big life lesson as the CALS. Cant do a damn thing about it and no way of telling what where or when or how!

 

[Atsugi]

Ugh such a cruel disease. Thank you all. Can now just give up on the guessing wondering and control. This is teaching me a big life lesson as the CALS. Cant do a damn thing about it and no way of telling what where or when or how!

Day by day, Labinma. Each day, wake up, see what the situation is. Then plan to help your PALS and family get through the day in the best way possible.

 

[tripete]

Lisa, the best we can do is to try and make every day, every moment special. I know this sounds like mushy cliche but it is all we have left. I want my wife to treat me a normal as possible but also to help when I need it and to try and hold on to everything good.

We are not wealthy people but have managed to take two overseas cruises that made new and special memories and if possible might try a third. I like the trips because it is one of the few time my wife just relaxes and forgets about how bad things are and are going to be. Using my power chair I can go anywhere and do anything on the cruise ships. It is my hope that when it is over that my wife will hold on to these things and not the wreck I have become.

Yes, I will progress and I will do so at a rate that I have no knowledge, predictors, or control of. But my mind still works, and with it I will try to beat off depression, anxiety, anger, frustration, sadness, and the myriad of other emotions that threaten me, by showing and expressing love the best I can to my wife.

 

[Nuts]

Lisa, realizing you have no control is a huge step. Enjoy what you can and stay ahead of the disease. Have equipment in place before it's needed. That was one of the first pieces of advice I read here and it stands as one of the mose helpful.
Becky

 

[Labinma]

A humble and heart felt thank you to all.......