Parkinson's Disease Tulip


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Old 07-18-2009, 12:09 PM #1
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Default Curly Toes and the Rebound Effect

(That's the name of my new children's book )

In the potassium thread, I mentioned that curly toes were back this morning. That got me to wondering about the pattern that I have noticed several times. Something will do some good for a few days and gradually lose its effect.

That doesn't strike me as a placebo effect because that would not fade, at least not so soon.

Just brainstorming, but doesn't PD sometimes seem to be about maintaining itself or, rather, maintaining a particular state of being? Bear with me because this is a little tricky.

We have all heard about the PD personality and we know that it is generally dismissed as being non-existent. And like many of us, I know that I am eaten up with it. I seek stability and always have. Whether as a child when my drunken father came home or as an adult who sees nothing wrong with the color blue in my wardrobe. I do best with little change in my life. It is sort of a psychic version of the way a biological system seeks homeostasis or equilibrium.

And there aren't many hang gliders or similar risk takers on this forum. OK, we've got a tornado chaser but we'll count him as our mascot. And even he is counting on stability in wind direction.

Back to the rebound effect, it is as though our subconcious, confronted with a change in our systems wants to restore things without being influenced by whether the change was good or not.

It is even echoed in our symptoms. We walk better in a straight, unchanging line and freeze as we approach doorways. Force us to turnaround and we lock up. Keep us away from doorways and we do better.

Our hormones, especially cortisol, don't fluctuate through he day like normals. Our cortisol pegs at an elevated level and stays there. And we all know what happens when a big stressor comes along and *forces* change in that level, even for a little while.

So we seek stability and avoid change. Unfortunately, as the respnses to my stress survey and conversations here have revealed, life has been tough for many of us.

So, what happens when a creature that has difficulty adapting to change gets hit between the eyes with life? PD, perhaps?
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 07-18-2009, 06:13 PM #2
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Default Overwhelm ......

Rick,
Your post reminded me of this man and his ideas on Overwhelm. I don't know how overwhelm and PD are related but I for one can relate to both conditions. Thought you might be interested in seeing this. Ibby

http://www.heart-2-heart.ca/men/page18.html

oops - meant to add that he - Easterbrook - has Parkinson's.
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Old 07-18-2009, 06:47 PM #3
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Thank you, ibby. My wife is an HSP (highly sensitive person) so I know well what he describes. I have, also, over the years noted many similarities between she and I. There is almost certainly a connection between PD and the basket that I think of as the "Modern Malaise". Things like autism and its attached spectrum, Asperger's, schizophrenia, CFS, etc. PD fits right in all too often.
-Rick

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Rick,
Your post reminded me of this man and his ideas on Overwhelm. I don't know how overwhelm and PD are related but I for one can relate to both conditions. Thought you might be interested in seeing this. Ibby

http://www.heart-2-heart.ca/men/page18.html

oops - meant to add that he - Easterbrook - has Parkinson's.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 07-18-2009, 08:55 PM #4
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Quote:
Originally Posted by reverett123 View Post
There is almost certainly a connection between PD and the basket that I think of as the "Modern Malaise". Things like autism and its attached spectrum, Asperger's, schizophrenia, CFS, etc. PD fits right in all too often.
-Rick
Interesting. I actually experienced panic attacks with social phobia right before I started up with a tremor. It was odd because I'd never experienced any sort of severe anxiety up until that point- first surfaced when I was 29 yrs. old. I was prescribed Paxil, which made tremor worse btw, and sent on my way. The panic attacks stopped as suddenly as they appeared and now I have PD. Well, to be more precise, that was probably an early sign of it. Research highlights the connection between dopamine and behavior. Usually, clinicians focus on anxiety disorder post diagnosis, but I wonder how this stands out more as a presenting sign or precursor for some of us?

-Laura
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Old 07-20-2009, 12:52 PM #5
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Default Just wondering

I wonder if, in a population this large is this comonality is causitive or just coincidental? Perhaps those among us seek community here instead of in the wider world of personal contact. Just wondering.
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Old 07-20-2009, 04:08 PM #6
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wrong thread
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 07-20-2009, 09:55 PM #7
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PD affects the basal ganglia, a part of the brain that is also connected to obsessive compulsive behaviors and other mental problems. My dad had PD with extreme anxiety that did not respond to drugs. He even had ECT several times to combat it. He saw a doctor once a year at Mass General (my dad lived in FL) and the neuro, an MDS, said he didn't want to see him anymore because he could not deal with my dad's anxieties. That hurt my parents a lot.

I think the need to avoid anxiety is at the root of my attempt to live a regimented life without stress. I avoid any thing that might cause me anxiety, in a kind of obsessive way. That leads me to procrastinate, which causes me more anxiety. I've been trying to get a handle on things but it's hard to do it alone. I may seek some therapy soon because I seem to be sabotaging myself in many ways. My life should be simple, and I'm messing it up.
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Old 07-21-2009, 08:21 AM #8
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ZF-
Anxiety seems to be a cornerstone of PD for many of us. It seems linked to the prenatal environment, at least for rats.

You know the usuals: meditation, hypnosis, exercise, etc. They do help, often greatly.

A sense of control of one's life is another, as you have noted. -Good luck.


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Originally Posted by ZucchiniFlower View Post
PD affects the basal ganglia, a part of the brain that is also connected to obsessive compulsive behaviors and other mental problems. My dad had PD with extreme anxiety that did not respond to drugs. He even had ECT several times to combat it. He saw a doctor once a year at Mass General (my dad lived in FL) and the neuro, an MDS, said he didn't want to see him anymore because he could not deal with my dad's anxieties. That hurt my parents a lot.

I think the need to avoid anxiety is at the root of my attempt to live a regimented life without stress. I avoid any thing that might cause me anxiety, in a kind of obsessive way. That leads me to procrastinate, which causes me more anxiety. I've been trying to get a handle on things but it's hard to do it alone. I may seek some therapy soon because I seem to be sabotaging myself in many ways. My life should be simple, and I'm messing it up.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 10-03-2009, 04:23 AM #9
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Yes, anxiety & worry seem to be the very worst thing for my patient with PD. She can be fine one moment & then fozen or having uncontrolable tremor the next just because of a phone call /or rememberiing to worry about something. I decided to to an experiment on myself the other day. I have trouble turning a page in a book. I decided that if I told myself to actually get upset about it and that I must do it quickly , that perhaps I could get a different response from my body......sure enough, after making sure I couldn't do it & in trying harder, I eventually developed a severe tremor & my eyes got starey. End of experiment...I decided that this is how I could be all of the time if I chose to worry & get frustrated over things. I choose to be happy, to be content and laugh as much as I can...and try to make my patient laugh tooooo. Life is so short to bring more trouble in to it. Let's try to lighten everyone else's load, give soomeone a lift in their spirits and yours will be lighter too. I continue daily to try to find ways to aleviate symptoms completely...like my fava bean experiments (which, by the way, am happy to see fall beans coming on in our August 14th planting...LIFE IS GOOD/ GOD IS GOOD!) Aunt Bean
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Old 10-03-2009, 04:09 PM #10
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Default curly toes?

Rick,
I am new to this non-dancing, non-Amgen discussion. You mean curly toes literally? My toes have started to curl badly, as if digging into the ground, and starting to almost cross each other. Also, sometimes my hands and feet turn purple - there is a word for it - and my neuro says he sees that all the time and there is nothing about it in the PD studies. Anybody else have their hands turn very purple at times?
Anxiety screws me up badly. One reason why music and dance help me. If i can get swept away by it. If i can't get into the music it does not help
bob d
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