I'm cured; Do you ever get that feeling?

[Max19BC]

I'm always mystified in how I feel when my herbs/drugs are working just perfectly. This is when I'm feeling perfectly normal (maybe not to an outside observer but to me). I can walk, laugh, run, dance, etc. I'm feeling like I'm on top of the world. I'm cured!!!!!!! I forget that I had a hard time walking just 15 minutes ago. My mind is so confused about that, How could this be? I feel fine, I don't have parkinsons. Even when I know it's time to take my next dose, I keep saying to myself, "No need, I'm cured". In the back of my mind, I know it's not so. It's so weird feeling like you're normal again, even it lasts only 10 minutes, sometimes a lot longer. It's like I completely forget I have pd, and have a hard time believing it's going to come back when my herbs/drugs wear off.
Here's another mind game. I had a wonderful supper at a nice restaurant with another pd'er last week. We were both a bit overmedicated and moving around like kids listening to their favorite song. We knew people were looking at us from the corners of their eyes, but we didn't care. We knew that we were the only normal ones there and the rest were aliens. We had each other and that was all that mattered.

Enjoy Life
Remember we're the normal ones.
Max

[CTenaLouise]

http://dl.glitter-graphics.net/pub/875/875461pysh868tin.gif (http://www.glitter-graphics.com)

I feel happy & try not to be to sad - because I look for miracles - that's my way ... tena
this is a great quote -
A healthy attitude is contagious, but don't wait to catch it from others. Be a carrier.
-- Anonymous

I love this one!
Each morning when I open my eyes I say to myself: I, not events, have the power to make me happy or unhappy today. I can choose which it shall be. Yesterday is dead, tomorrow hasn't arrived yet. I have just one day, today, and I'm going to be happy in it.
-- Groucho Marx

[Ronhutton]

Hi Max19BC,
I am such an optimist, I get the "I'm cured" feeling often, only to be badly let down when I switch off. I switch on occasionally in the mornings before I have taken any meds. (Does anyone else experience this???). It can last up to an hour, and it gets me in trouble more often than I have had hot dinners. Once I attempted to go with my wiife taking the dog a walk during one of these episodes, and switched off miles from home, giving my wife an awful problem to get me home.
Considering I have had PD for 17 years now, you would think I would not be fooled so often, when I am feeling great. I forget my cares AND my meds, and end up switching off at the most difficult of times, facing up to an hour before I am on again and can finish what I am doing.
More seriously, I attempt things I should not, when feeling good. I have a dislocated shoulder from a fall which happened when I threw caution to the wind during a happy time. I have a hernia permanently now after laying 80 concrete flagstones when I was feeling "normal" My children have removed my chainsaw so no worries there now!!!!
In a happy period, I have booked a trip to Venice next June, going there and back on the Orient Express. What will I be like after another year of PD I don't know. I will have to rely on my wife again getting me on and off those gondolas without taking a dip in the canal!!
Yes Max, I also get the cured feelings!!! We are the normal ones.
Ron

[jcitron]

Max and Ron,

I too have asked myself the same thing. Am I cured? Was this really "just in my head" as my primary care doctor eluded to? Then BAM! I get a twitch, my feet cramp up, my bicep muscles are tight, and I'm no good for anything until my dose kicks in.

I agree we're the normal ones. The rest are the aliens. :)

John

[rosebud]

Yes I too go to that magic polka dot of time where I am cured. I believe I am cured for that moment or hour, but WI'm never allowed to stay there. I think it's just to let me know that my spirit is whole (and still only about 29), it's just my body that gets yanked back into the Parkie Zone.

We are indeed peculiar creatures. When we hang out with other parkies we get very comfortable in our little world. Not in the traditional way, but we feel bolder and more confident as we walk through a department store or cross a street. Pretty soon we consider hanging out at the mall with other Parkies striking fear in the hearts of the "others" as they see that there is more than one of us. :eek: Maybe we could get vests made up with our club name stitched across the back, like the Hell's Angels. We will change the way the world precieves us. The big pharma will fear us! Now that's advocacy for change...YES ! Was it Albert Einstein who said: if you want to change our circumstance you must first change your mind.A

[stevem53]

"You unlock this door with the key of imagination. Beyond it is another dimension - a dimension of sound, a dimension of sight, a dimension of mind. You're moving into a land of both shadow and substance, of things and ideas. You have just crossed over into the Twilight Zone"

I have those "moments" too, only not so often these days..Once in a while I find myself walking almost perfectly..Even my right arm swings slightly as I walk..I had one of those moments a few nights ago..My God, those Cinderella moments feel so good, when the rigidity is at a minimum, and the dystonia is absent from my right side..LOL!!..Reminds me of the Juvederm commercial.."Everyone will notice, but no one will know" http://www.politicalgroove.com/images/smilies/lol.gif http://www.politicalgroove.com/images/smilies/woohoo.gif

[CTenaLouise]

"You unlock this door with the key of imagination. Beyond it is another dimension - a dimension of sound, a dimension of sight, a dimension of mind. You're moving into a land of both shadow and substance, of things and ideas. You have just crossed over into the Twilight Zone"

I have those "moments" too, only not so often these days..Once in a while I find myself walking almost perfectly..Even my right arm swings slightly as I walk..I had one of those moments a few nights ago..My God, those Cinderella moments feel so good, when the rigidity is at a minimum, and the dystonia is absent from my right side..LOL!!..Reminds me of the Juvederm commercial.."Everyone will notice, but no one will know" http://www.politicalgroove.com/images/smilies/lol.gif http://www.politicalgroove.com/images/smilies/woohoo.gif

The arm swing - I need to tell you something a very famous neurologist/neuroscientist/ neurosurgeon told me...
try to swing your arms if they do not swing, you can may the body create chemicals by the very swinging motion of the arms...
All things we do have a great purpose in the master plan of our human bodies
and think in - what you cando's! not the negative -cantdo's
youcando - more with this image as thought...
we are creative beings - create your world, paint the sky, sing with the birds,
when the moments of gloom hit, walk yourself out of the darkroom into the "LIGHT"...

[Max19BC]

Ron, I'm glad to hear that you've booked a trip to Venice next year. That's positive thinking. It's so important to let our bodies know that we will need and depend on it for the future, being tomorrow or 6 months from now. By having goals and activities planned, our bodies will subconsciously get ready for it. Personally, I'm planning on buying a kayak this spring, join a kayak club and go kayaking. I'll be exercising my body over the winter to get ready for it.
Rosebud told me of an interesting condition she observed from a variety of parkie groups she belonged to. She has noticed that some of the men with pd, who were being taken care of by their partners, didn't do as well as the ones living by themselves. These men's partners would end up taking care of them and these men would end up doing less and less over time. The ones living on their own (including myself for almost a year now) were forced to do everything. WE have to do everything if you want to remain independent. I believe that subconsciously, our mind/body keeps us going in order to meet our daily demands. I know when I was married, my wife would do most of the household choirs and I spend a lot of my time just laying around on the couch. This didn't help my pd. It's not like I didn't want to help, she just did it for me. But women with pd still continued to take care of the kids, did laundry, cook, etc. They would continue functioning a whole lot longer than their male counterpoint.
I found this to be quite interesting. Thank you Rosebud.

Plan for tomorrow and enJOY today.
Max

[rosebud]

I have belonged to 3 different support groups over the last twelve years and I have come to know at least 100 people living with PD (either as care givers, or Parkies). Just thinking back to what Max said, I will also add that of the people with PD who have passed away over the years...they have ALL been men. (About 7 of them total). Now just to add another dimension to this sordid post, I worked in the insurance business and once when I was reading somebody's trade magazine I read an article about life insurance that was written by a Doctor and he said that women are better built than men, even though men have the physical strength. Women have an extra layer of fat to protect them in cold climates, are a better design per weight distribution (they carry more weight in the bottom half of their bodies (hips and thighs) where men are usually designed with bulk in upper half of their bodies. AND because women bear the children, they have a more solid structural design. There was more, but unfortunatley I can't recall it. Large men tend to die off first, and the shorter, lighter framed men generally live longer, but they still don't usually outlive their wives.

Aren't you glad you read this?:eek:

[ZucchiniFlower]

Yes, I occasionally experience a cinderella moment. It lasts about 5 minutes. I feel suddenly normal. I walk like I'm well. I usually say, "OMG, I'm walking!"

Sometimes, it happens when I'm walking to the train. I feel normal, sit on the train and then I'm kaput again. I get off the train with great difficulty, and I'm walking like a parkie again.

I always wonder what is going on that can make me feel normal again and why can't I capture it all the time. What IS it?

It's not just that I walk well, it's that I feel like ME again. It's impossible to explain, really. But it's like I have my life back, and then it's gone again in just moments. It's almost like a cruel joke.

[rosebud]

citing a short letter to the editor of the NY Times re; an article that was titled- A Holiday From Illness, All to fleeting. (april 22)

I have been tempted many times to forgo my medication- a day, a week forever! When you feel so normal it s sometimes difficult to comprehend that you need so many pills. I always felt that I was an exception. After reading this article I can see that I was wrong. But it is comforting to know that Physicians like Dr. Dena Rifkin realize that there are things they don't quite understand, yet acknowledge their presence.

Now one of you researcher types can go dig out the article and get the magic link. :D I do the setup, now someone else has to do the research (which is not my bag)...a retro expression


r

[ZucchiniFlower]

It's about kidney transplants:

http://www.nytimes.com/2008/04/22/health/views/22case.html?_r=1&scp=1&sq=A%20Holiday%20From%20Illness,%20All%20too%20fle eting&st=cse&oref=slogin

http://query.nytimes.com/gst/fullpage.html?res=9B02E1D9173EF93AA15757C0A96E9C8B 63&scp=2&sq=A%20Holiday%20From%20Illness,%20All%20too%20fle eting&st=cse

[jcitron]

Yes, I occasionally experience a cinderella moment. It lasts about 5 minutes. I feel suddenly normal. I walk like I'm well. I usually say, "OMG, I'm walking!"

Sometimes, it happens when I'm walking to the train. I feel normal, sit on the train and then I'm kaput again. I get off the train with great difficulty, and I'm walking like a parkie again.

I always wonder what is going on that can make me feel normal again and why can't I capture it all the time. What IS it?

It's not just that I walk well, it's that I feel like ME again. It's impossible to explain, really. But it's like I have my life back, and then it's gone again in just moments. It's almost like a cruel joke.

You hit the nail on the head with this one, ZuccinFlower! This is one cruel joke that's been played on us. I've had these moments too, but mine still last a day or two, sometimes three before everything kicks back to rotteness. I'm one of those single guys that heve to do everything for myself so perhaps I'm lucky in this respect. I drag myself out of bed in the morning, who doesn't really, shuffle around until mid-morning, then if anything is going to work that day, it will by my second dose. If it does not, well then, I know I'm in for a rotten long day.

With a couple or few good days in a row, you begin to forget about the "problem" so when it appears later, it's like getting hit in the head all over again with one big reality check.

John

[rosebud]

Thanks for doing the research. Max needs to read this...after his little experiment a few weeks ago where he went off all his meds. It reminded me of all the times my kids would say "Watch this Mom!" and then do something incredibly stupid. One of my sons (about 4 yrs-old) jumped off a balcony from the 2nd storey and broke his arm and assorted other damage. We had to take him to the hospital. After two days of relative silence from a kid who moved non stop I was sitting on the edge of his bed, and he said to me "I put my arms out, but I couldn't fly." He did however permanently traumatize the neighbours two daughters. That was 25 years ago and they still think of it with horror. :eek:

Got kinda carried away there.