What are the stages of ALS

[sohail009]

Today I went to see a neuromuscular for my father after gone through various reports he also said its ALS. [i was hoping maybe he says its not ALS]

Then he said his score is 15 thus he is at medium stage? When i asked he said lesser the number more serious stage. Score is 15 out of 22. Is it same in US as well? If its differnt then how the stage of ALS is diagnosed and what are the stages and associated symptoms?

 

[Nikki J]

We don’t really stage ALS. We will sometimes talk about early disease and if someone is clearly dying people will say end stage

We have a rating scale that looks at 12 different things and perfect is 48 but I don’t think it is very sensitive and it can be pretty subjective

Japan has a system of stages but I think there are only 4-5. The UK uses King’s sages sometimes but I think they too have 4-5.

People progress so differently you can’t assign symptoms reliably to any order. I have a friend in a wheelchair everything else is ok. I have another friend who started bulbar her speech is bad her hand is a tiny bit weak as is one leg. Someone else can’t talk at all but everything else is ok. All these people have genetic ALS but very different issues

 

[KarenNWendyn]

As Nikki says, there are no predefined stages. Everyone with ALS has a different rate of progression and a different sequence of progression. You can talk about early stage, late stage, and actively dying stage, but those will be different lengths of time and occur at different levels of function for different people.

I also think of different stages in terms of functional needs. E.g. “wheelchair stage”, “feeding tube stage”, “Hoyer lift stage”, “full-time BiPAP stage”, etc. I find this helps me think about what my caregiving needs might be at these different points, for example. Not all PALS reach all those stages.

 

[sohail009]

Thanks Nikki and Karen it makes sense. Maybe in SG they stage from 22 to 1, lesser the number worst the stage.

My father body becomes very stiffed, and also he can not sleep at night for long as he has to wakeup coz of body stiffness. Any reason for this?