Parkinson's Disease Tulip


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Old 09-12-2007, 11:19 AM #11
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Default Ladies, take note!

We women are a stubborn lot, aren't we? Check out this study (and note that the write-up was reviewed by our own DocJohn). I thought it went along with the topic of taking care of ourselves.

(To read the entire article, go to:
http://psychcentral.com/news/2007/09...ease/1264.html )

Family history and environmental behaviors heighten the risk of cardiovascular disease.

A new study discovers women are less likely to change high risk behaviors such as smoking, or not getting enough exercise, even if they have a family history of heart disease.

Scientists from UT Southwestern Medical Center report in the September issue of the American Heart Journal, that women with a family history of heart disease are less likely than men to change habits such as smoking and infrequent physical activity.

They also are more likely to engage in lifestyle choices that increase their risk of heart disease than are women who did not report a history of heart disease.

“A family history of heart disease is as important an indicator of future cardiovascular health in women as it is in men – perhaps more important,” said Dr. Amit Khera, assistant professor of internal medicine and senior author of the study

source: http://psychcentral.com/news/2007/09...ease/1264.html
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Old 09-12-2007, 12:29 PM #12
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Default Hungering and Thirsting for Health

Before I start, thanks to Peg, Judith, Howard, and Birte for your contributions and to those who pushed the "thanks" button.

OK, Peg, good point, so let me talk about arthritis. By now everyone knows that I had a hip replacement, but maybe not everyone heard that by the time I had surgery I had no cartilage left in the joint and had ground down the bone enough that my orthopedic surgeon had to lengthen my leg with the joint prosthesis. He also said that the osteoarthritis had eaten away so much of the pelvis on that side that he almost didn't have enough bone to attach the cup of the prosthesis.

Now, I won't go on a rant about how many doctors, mainly my Primary (whom I fired after diagnosing myself from the internet), told me to exercise and never mind the pain. I guess they thought PWPs complain too much

Pain? Pain! I did not dance at my daughter's wedding. Before I got some help with pain management, I cried, I prayed, I prayed for death, and best of all, I hungered and thirsted for exercise. I longed with all my heart to be able to get to the bathroom without a wheelchair.

Today is a gorgeous day for a walk, and it's a quick drive to the therapy pool where I'm a member. I'm terribly busy preparing to teach a class and doing homework for one I'm taking and reviewing my notes from a meeting last night and planing dinner and organizing my beads and my yarn, but I'll do my exercise. I'm a convert.

I hope someone reading this decides to try a little exercise or at least work on their posture. If you can't walk, get a "Sit and Be Fit" tape, if they still sell them. Move your outstretched hands in circles. Try to reach your pelvis with your shoulder blades without bending backwards or forwards. If you can. Or maybe tomorrow.

Thanks for reading.
Jaye
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Old 09-12-2007, 06:39 PM #13
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Default

Jaye you post here often and if I remember ocrrectly, you have mentioned you crochet. It's good to hear you are doing so well, and why! Keep it up!
My docs have also told me the symptoms I show are pretty mild, 4 years since diagnosis (with symptoms about 2 years prior to that).
I take carbi levo dopa 25/100 x4, detrol for bladder. No antidepressants yet. Exercise was helping so much, then I quit at the beginning of summer...lots of stuff going on. Am chomping at the bit to get back into it, after you stop for a hilwe, it's hard to go back.
One big thing for me is the meds; I am have been a horrible patient. Could never take them on time, would skip doses (or "forget" them) and felt physically, mentally and emotionally terrible. Not anymore...
And ditto every one on attitude...gotta keep a good one & try to hang around with other good ones, because a bad one can drag a person to the depths of despair.
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Old 09-12-2007, 09:39 PM #14
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Wink just in case you didn't know...

For the folks who don't know, SherylJ and I created a website called "PDplan4life" that talks a lot about the things in this thread. Things like how exercise helps us, and about advocacy and the things we do to help us live with PD, and more.

This is a project that we both enjoy working on. And we hope that it offers hope and positive ideas about living with this disease.
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This isn't the life I wished for, but it is the life I have. So I'm doing my best.
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Old 09-12-2007, 09:55 PM #15
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Default "Motivating Moves"

There's a great sit-down exercise video available through PDF. "Motivating Moves for People With Parkinson's" by Janet Hamburg. I met her at a PAN forum, and she is as animated and jubilantly encouraging as the video portrays.

Information on how to obtain a copy can be found at:
http://www.pdf.org/Publications/motivating_moves.cfm

or visit Janet's website:
www.motivatingmoves.com

Peg
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Old 09-12-2007, 11:27 PM #16
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Default Yes, emptynest, I wake up crocheting

That's me behind the pink swatch... I think it helps me maintain hand dexterity. -J.
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How we take care of ourselves can make a difference!-weddingshawl-jpg   How we take care of ourselves can make a difference!-mypicture-jpg   How we take care of ourselves can make a difference!-nothershawl-jpg   How we take care of ourselves can make a difference!-shellshawl2-jpg  
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Old 09-13-2007, 07:05 AM #17
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Default And I knit.

You are right, Jaye, both knitting and crocheting keep hands and fingers nimble. I knit sweaters for the grand babies. By now we have almost six. The almost is a little sister from China for little Ping from China. They hope to pick her up in November. So I am getting the needles out and looking at yarns. I make my own patterns so I have double fun thinking up the shape as well as choosing colors, and I exercise my brain with all the basic math of measuring and counting stitches.
Cotton yarn is the thing now - not one of the grandchildren is willing to wear wool. I have vivid memories of my Mormor (mother's mother) knitting at top speed, with needles clacking, the itchy, scratchy woolen underwear I had to wear in winter when I was very young. I could almost say that I've worn a hair shirt.... In the 40's in Denmark new yarn was hard to come by, and all of it was hard and scratchy. But it did keep me very warm in the war winters when fuel was scarse.
Sorry, I digress. I guess I've hit memory age.

birte

Last edited by BEMM; 09-13-2007 at 11:30 PM.
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Old 09-13-2007, 08:00 AM #18
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Default Drugs from other diseases

Jaye,
I notice you are taking iradipine. When did you start taking it, and at what dose? I now have 5 examples of PWP who have experienced slow or no progression, who have been taking hypertension drugs. One of them even wrote a book attributiing his non progression to exercise. However, it has now emerged he has been taking 3 different classes of hypertension drugs for years. Another lady I know personally, was diagnosed 6 years ago though had symptoms for years before. She was diagnosed by her doc., a PD specialist and a PD Nurse. She has never needed ANY PD drugs. She has been taking the hypertension drug, Ramipril.
So far I have found 4 hyertension drugs which reduce the permeability of the BBB, Losartan, Captopril, Nifedipine and Flunarizine
This doesn't mean to say the others don't reduce the permeability, the 4 are the only ones I have found data on.
Does anyone take statins, sinvastatin has been reported to help PD, and reduces the permeability of the BBB. Are there any slow progression stories from statin users? However, not all statins improve PD.
There is a recent report about the epilepsy drug, Byetta (Exenatide), helping PD. I have not had the time to check and see whether this is another BBB permeability reducer.
We may only be seeing the tip of the iceberg. Hypertension drugs are the second most widely prescribed drug in the USA. How many people are there taking drugs which have the side effect of reducing BBB permeability, whose PD symptoms are so mild, that they have never been diagnosed.
I have no access to any of these prescription drugs, so will keep on taking curcumin and CDP choline, they also reduce the permeability of the BBB!! A reminder of what opens up the BBB pores, Stress, ageing, pesticides, eg organophosphates ( I made many of them in the lab. when I was a research chemist). Add in Prof. Leenders work showing PWP have defective BBB's, and there is a strong case building up on the role of the BBB in PD.
I have found a professor who is a BBB specialist, and who seems enthusiastic about the idea of the PD connection, and has commented,
"There is accumulating evidence for BBB dysfunction in PD".
Ron
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Old 09-14-2007, 01:51 AM #19
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Default my one silly question

Quote:
Originally Posted by Jaye View Post

I found myself again challenged to offer my views on why I'm doing so well almost 8 1/2 years after diagnosis (with symptoms several years before that). One thing he pointed out is that I've always kept my meds very balanced, keeping myself neither too...

Jaye
Hi Jaye, good to hear you're doing well. I have one silly question: Usually, the effectiveness of medication we take, say sinemet, will deteriorate over time - end of dosage wearing off and require a more frequent interval of intake and an overall higher dosage. I wonder if you experience medication wearing off and please enlighten me how you cope with it?

I also agree that exercise is definitely helping to alleviate the symptoms and I can almost become symptom free after walking for half an hour.

Best

LING
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Old 09-14-2007, 04:54 PM #20
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Default Thanks for the great responses

Jean, the site looks very nice.

Thanks for the tape reference, Peg. Seems like every time I have gone by their table at PAN or some other event, they've just run out.

Birte, I'm crocheting a blanket for that new grandson of my spouse's, hand movement permitting. We still need to get together, I don't know where the time goes...

Ron, I have been taking isradipine only since mid-June, only 5 mg a day, and only because my blood pressure was starting to creep up. The lipitor is for a hereditary high cholesterol, and has been suspected of slowing down Alzheimer's and PD I've heard. My primary doctor was kind enough to prescribe these on a "no contra-indication" basis. My neuro said that there is no justification for giving me a higher dose of either based on one study on animals, and that the regime I'm on now is worth sticking with. I'm inclined to agree. I'm probably doing more by exercising than with a hit-or-miss dose of drugs or supplements. I also eat bright-colored vegetables and fruits on a daily basis. Wish I could be of more help, but keep up the cogent thinking, old friend.

LING, I cope with wearing off by taking the medication in question at more frequent intervals, taking them on a full or empty stomach, as required (Sinemet on an empty one), and using the other medications that stretch out the Sinemet, as mentioned above--Comtan, istradefylline, dopamine agonist (Requip). I NEVER wait for the next appointment if I feel I need a medication adjustment. My doctors work for me, not I for them, so I will call if I need advice. And in my humble opinion (IMHO), it's not that the medications become less effective, although some doctors say that to soothe us, it's that there are simply fewer functioning dopamine-producing brain cells to make dopamine out of the levodopa. I believe we shouldn't be afraid of Sinemet, though, just careful with it. Again and again, at symposiums I've been to, some mightly great doctors have said that--try to keep its delivery steady and don't go all the way off because you fear the next dose. Holding off doses so the blood level goes up and down is the worst thing you can do with Sinemet. As you can tell, my faith is with the best of the medical establishment, aided by our own thinking and observations, not to say that our own peers here in our forum aren't coming up with some really useful insights.

I've been happy to use some of my first full "on" today with this typing, but now I'm grabbing that baby blanket and putting another five hundred stitches on it before the babe grows up and goes to college.

Jaye
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