Indeed you'd think this would be automatically built into service provision and assessment ie it be a basic concept of PD 'it's a fluctuating condition'....again it is always up to the client to impress upon the provider what they need and try to make it clear...staff should at least be trained enough to ask questions about this very common situation.
Bit early in the day for a rant :-)
Hi, my neurologist in NZ advised that there was little point worrying about a label of a particular stage per se, it was more about geting an accurate picture of what he could do to make my day to day life better. Those scales are useful from a clinical trial perspective because they allow the researcher to compare results between beginning/end of trial for an individual and as a group as a whole vs general population aka the control in a trial. Then you can accurately extrapolate data and make statements like 40% of PD patients develop dementia
That being said, I completely get where you are coming from wanting to attribute a "value" to my illness so I can track it "objectively" (in my own mind at least)- as a 37yo with PD all I want to do is to somehow make sense of it, especially since in the 2yrs since dx, I am now being told DBS surgery is a very real possibility in the next 6 mths.
My advice? Don't look at the scales or "stages", as all they'll do is scare the cr@p out of you. They sure did me.
All the best, AJ
That being said, I completely get where you are coming from wanting to attribute a "value" to my illness so I can track it "objectively" (in my own mind at least)- as a 37yo with PD all I want to do is to somehow make sense of it, especially since in the 2yrs since dx, I am now being told DBS surgery is a very real possibility in the next 6 mths.
My advice? Don't look at the scales or "stages", as all they'll do is scare the cr@p out of you. They sure did me.
All the best, AJ
Going back to your original post on this, Abd,
I agree , lets not think about it !
I like words, specially these:
If you mean to keep as well as possible.
The less you think about your health.
the better.
Oliver Wendell Holmes.
Over the teacups.(1891)
Good night all
I agree , lets not think about it !
I like words, specially these:
If you mean to keep as well as possible.
The less you think about your health.
the better.
Oliver Wendell Holmes.
Over the teacups.(1891)
Good night all
All irrelevant, because they're going to find a cure next week.