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karzy81

Active member
Joined
Nov 7, 2017
Messages
41
Reason
Loved one DX
Diagnosis
03/2018
Country
CA
State
Ontario
Hi All,

My dad was officially diagnosed with als in March 2018 although he was exhibiting signs as early as May 2017. I remember going to the neurologist for the diagnosis and my dad walked there. Slowly but he walked. Now he can barely walk in a walker. His left side is much stronger than his right side but he is physically weak nonetheless. He can still lift his left leg and has a pretty good range of motion there but not on his right side. Even his right arm doesn’t lift as high as it used to. His eating and breathing is perfect. In fact at his last appointment in December his breathing was at a 96 which was better than the previous test of 92. I guess what I am wondering is will the breathing, speaking and swallowing progress at the same rate that his limbs have or can he have a long grace period where it doesn’t affect that part of his body? Everyone keeps saying that it will continue to progress at the same rate but I was hoping that there was a chance that the bulbar symptoms will stay away for a while and that they won’t progress as fast as the limbs did. Any insight would be much appreciated.

Karen
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,530
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Honestly there is no way to predict, we all wish there were. So many things can influence progression.

The fact his breathing and swallowing are not affected yet means you can concentrate on lots of quality of life in the now. Today is after all, all that we have. I think it is empowering to look at what you have and what you can do now, and enjoy it while you have it.
 

ThroughThatValley

Active member
Joined
Jun 23, 2017
Messages
35
Reason
PALS
Country
FRA
State
France
Honestly there is no way to predict, we all wish there were. So many things can influence progression.

The fact his breathing and swallowing are not affected yet means you can concentrate on lots of quality of life in the now. Today is after all, all that we have. I think it is empowering to look at what you have and what you can do now, and enjoy it while you have it.
Spot on.
I may add: "today was the day I feared yesterday".
It's a rule not only terminally ill should contemplate but healthy people too. You're healthy until you're not anymore, and that is another rule no one can escape. So it leaves us all with the "make the most of that very minute".
It takes time to adjust to that rule as mind is prone to wander ahead, but with practice it will become a way of living.
 

Doglady

Active member
Joined
Aug 6, 2018
Messages
65
Reason
PALS
Diagnosis
04/2018
Country
US
State
Minnesota
I know it may not always feel like it but it sounds like your dad is doing really well for a PALS. I’ve noticed that as my normal way of doing things gets harder pretty soon I figure out a new way. And each day is one to enjoy doing doing whatever I can still do. Awareness and anticipatory planning is super important but too much worrying just keeps me from sleeping well. Good luck with this journey. It’s great that he has your support! He’s a lucky dad.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
517
Reason
PALS
Diagnosis
05/2014
Country
CA
State
Ontario
Karen, I go to bed evert night planning to wake up in the morning and have a good day,,and that is what happens. I DO NOT have a terminal sickness Iam just not well. Life is terminal but most folks don’t think of it that way,but we are put on earth to die just like any other living thing. No one knows what there life span is so way think about it? Just carry on living. Like the song says “DONT WORRY “
Al
 
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