"on" / "off"?


#1

Regular use is made of the terms "on" and "off' to indicate how well a person diagnosed with PD is functioning at any moment in time. But just what does it mean to the individual?

In my own case 'off' means my right leg becomes heavy and weak, and from a sitting or lying position I struggle to raise it. Sometimes, but not always I drag my right leg when walking.

It also means my right arm becomes weak and my fingers stiffen and are difficult to move.

If I am sat in a deep armchair it means I struggle to stand up.

If I am in bed I struggle to turn over or get in/out of bed.

A complication is I also have Peripheral Neuopathy which can  also be a cause of the above, so am I 'off' or am I having a PN moment?

'On' to me is when none of the above are affecting me.

I would be really interested to learn from other PD patients what 'off' and 'on' means to them.


#2

"ON": I feel relatively normal, but still a poor posture, side to side tap test result over 60.

"OFF": walking excepted (which is barely affected) everything in slow motion, tremor gets much worse, side to side tap test result under 30.

Non-motor symptoms, like constipation, tend to be "off" almost the whole time.

John


#3

OFF..........................immoblie, stuck in a chair, but shaking uncontrolably,or not being able to get up from a chair, for hours. Being stuck in the bedroom not able to get dressed in the morning or walk downstairs, and the same at night.

OFF.............being so frozen that  everything has to be done for me.

ON....................a few short periods, some days, when the above does not happen, which is rarely these days.


#4

 

off.. right now sluggishly moving my fingers slowly across the keyboard and mouse to type this

on.. in a hour or so, i hope lol.


#5

I to have PN in my feet that came on hand in hand with my Parkinsons symptoms 10 years ago.I dont really know what an on/off period is I know I have good days and bad days where walking is my worst symptom and my legs just refuse to go and I only get around in a wheelchair now.Some people get an immediate reaction after taking their meds but I dont.Regards PP