[burckle]

A number of posters have mentioned that they don't feel "off" or "on" in response to the presence or absence of their medication. Others mention that they feel "on" within an hour or so of taking their medication and they feel the "off" signal when the medication has run it's course. I am in the former group. I don't feel anything after taking my medication. On the other hand, I don't feel anything after the medication has run it's course and I'm due for a refill (I'm on STALEVO and I take it every three and a half hours). To those who have "Offs" and "Ons" what does it feel like? Am I missing something?

All the best,

Lloyd

[paula_w]

Hi Burckle,

I didn't experience off and on until about 5 years after diagnosis, which was really more like 8 years from the onset of symptoms. But medication did relieve my symptoms from the start, meaning the rigidity went out of my right hand and arm and I could walk without tripping.

Once the symptoms progress to other parts of the body, all of these places experience the rigidity or tremoring or both that PD brings. This eventually becomes so bad you can't walk at times (we've all crawled to the bathroom at this point). You can't do much of anything....if you walk, you festinate, meaning the upper part of your body is going to go, but your feet won't and you can fall forward.

It's pretty much like being a battery operated toy - the only way to get "on", meaning being able to move, walk, or whatever being on means for the individual - is to take med. My offs became more noticeable with sinemet, but then my ons became very positively noticeable too.

Eventually, mornings will be the worst time.....now it may be your best time because the body replenishes dopamine while sleeping.

It's a good thing that you don't have off and on. But do you have symptoms? Is stalevo relieving them?

paula

[wendy s]

Lloyd, I was like you until this last year. Never noticed whether I took the meds on time or not.

Now I can describe the on/off as how it affects my walking. I make a lot of trips from my dep't down the hall to the centre of the hospital - when I'm on I walk completely freely and normally. When I'm off, I have to think about heel first, swing my arm, rhythm - in other words automatic has become manual, the easy fluidity of movement is gone. I really enjoy the free easy movement when it's happening.

[burckle]

Thanks Paula:

For your very informative reply. Yes, I do have symptoms...a tremor in my left hand and arm, but it isn't always there. There are times in the morning, usually after first getting up, when the tremor is missing. It's also missing when I'm working on a manuscript; i.e. my mind is elsewhere.

I do have PD though but it sometimes has a mind of its own.

Thanks again for the explanation. It is much appreciated

All the best,

Lloyd

[Teretxu]

Lloyd, unfortunately you will notice the offs as PD progresses. Right now you're probably well covered taking Stalevo every 3-1/2 hours, but someday, hopefully not too soon, you will begin to experience those dreaded offs.

You realize that we are taking dope and that withdrawal symptons are part of the deal. They go something like this: when your meds wear off, not only do all your PD symptons return in full bloom, but you are also provided, at no extra charge, with a virulent set of writhing dyskinesia (choreic movements), dystonia or stiffening of the most affected muscles (neck, back, feet...), can't sit or stand still, can't talk right, your face looks like it's turned to stone, you might even drool, and worst of all, you get desperate. It is then that you should quietly go to your room and rough it out until the next dose kicks in. By roughing it out I mean: do what comes natural, throw pillows or throw yourself on the floor, just pace up and down swinging your arms like a madman or cry a little. In about 20 min. your next dose will kick in and you will be home free.

[reverett123]

This is a very good question, by the way.

My experience of "off" is not what I would have expected before they showed up about two years ago. They are quite unpleasent and include a cognitive component. I'm going to go into some detail and see which parts ge a "me too" response.

I'm on a two hour schedule taking one Sinemet CR 25/100 and one 4 mg Requip each time. First dose is about 7:00 AM and last is 7:00 PM. Normally this keeps me at 100% function from about 8:00 AM to around midnight, at which time I am thoroughly "off". The switch happens over a 15 to 30 minute period.

As I go off the cognitive portion is a sensation of receding - like a tunnel vision feeling. There is a distance between me and the world that wasn't there half an hour before. Keep in mind that it has been five hours since my last dose.

My arms are leaden and it becomes almost impossible to type. I can stand relatively easily but taking my first few steps is incredibly difficult and frustrating. Once I begin walking it is easier to continue. But a doorway or a turn means starting all over. I have never fallen but balance is an issue.

There is a GI component in that bloating is usually present. Also there is a bladder component in that often I have to go to the bathroom on short notice. Talk about stress...

There is a feeling of weakness in my lower legs which contributes to the balance issue. Once I get to the bed and collapse into it, a feeling of great relief washes over.

If I have to get up in the night the situation has changed little UNLESS it is after about 3:00 AM. After that things have improved greatly. I know that the conventional wisdom says that we make our dopamine in the wee hours, but I think there is a lot more to it. I suspect there is a circadian rhythm component that increases the sensitivity of our receptors at that hour.

When I get up around 6:00 to 7:00 AM, I am at 50% function and about ten times what I was when I hit the bed. At this point it has been about 12 hours since my meds. As I make coffee I almost always get dystonia of my left foot and it always lasts ten minutes regardless of meds.

About 30 to 60 minutes after taking my first round of the day, the butterfly starts to tear at his cocoon and -Presto!- I emerge into an "on" state.

Regarding the cognitive component- those of you who NEED coffee in the morning? Multiply the feeling by five to ten.

Sorry to go on so but it is a good chance to talk about something we haven't covered before.

[lou_lou]

dear one,
pretend you are a lamp, and you are plugged and everything is working great,
then suddenly the light bulb starts blinking on and off, you cant read - you stop and start reading, but you can finish what you are doing until the circuitry is connecting correctly...
so on is - the light is on -all is working- circuitry receiving signals -
off - when you can completely walk because the almighty cord to the wall -
(the neurotransmitter) is not receiving or transmitting a signal correctly,
so the light bulb is either blinking or it is out = off.

they say freeze also - which is like - you can't move, - I have done this, but now I know a trick that helps, -
I was told by a brain surgeon when a patient freezes his/ her movement:
it is because the eyes are stuck in a gaze...
but do not worry Lloyd as it may not happen to you.
We mayactuallyfind the cure....
I have had PD a long decade
and it is my great hope, they will cure us soon...

hope you understand the analogy?
best I can do unless -you click the young onset moviein the signature of my post and watch -
a very good selection of young onset PD patients/ my great friends have allowed us a peek inside their world of coping with PD.
and their are neurologist that also explain it ...

[steffi 001]

...Lloyd I cannot really elaborate on the wonderful explanations already given...but to echo Tena,I pray that you have a while to go yet before reaching this stage.I personally,realised that the "on/off" monster had crept up on me whilst I was blissfully enjoying what I thought was a period of respite.
Suddenly,instead of a gentle slide,at overlap of medication times,I plummeted...AND FAST.It hit me hard,and took me by surprise I`m afraid.
One minute I am zooming around like ...well,like Paula`s excellent analogy of a battery powered toy.Then she is so right...it is as if someone stops you in full flow,and takes out the batteries.I don`t even get the luxury of my batteries gently fading.They are just there one minute,charged to the peak,and then WHAM...gone in the blink of an eye.And all I can do is sit and wait until the life floods back into my limbs.I can`t move my arms or fingers,my legs,and my speech becomes almost drunken.My neck and upper body become rigid but I don`t get the tremors which is a blessing.
Even sitting is quite painful,because your body no longer belongs to your brain.Talk about The Body Snatchers. I reckon we`re living it most days.
Lloyd...I know this doesn`t read very comfortably,and I so don`t wish to alarm you or anyone else who doesn`t present with "on/offs" yet.As Teresa said...you may not ever get this. We are all different.So please read and then shelve it.
They say Parkinson`s takes away your smile too. Well LLoyd...I still have mine.And I make certain to use it each day.
God Bless
love
Steffi
x

[DaleD]

Originally Posted by wendy s

When I'm off, I have to think about heel first, swing my arm, rhythm - in other words automatic has become manual, the easy fluidity of movement is gone. I really enjoy the free easy movement when it's happening.

Wendy,

Your response reminded me of a cultural training I attended a few years ago. The training was moderated by a Russian Orthadox priest who is married to an Eskimo lady. He told the story of when his wife was expecting their first child. He said when she finshed her meal she would stand up, bend over and go to the door, open it and go outside, turn around and come right back in. He finally asked her what she was doing and she said, "I'm training the baby. Head first and do not stop."!!

[burckle]

Thanks to those who replied to my post and told some of their personal stories. I had no idea of the level of personal courage that is required to cope with this disease. My hat is off to you.

All the best

Lloyd