Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 10-09-2006, 01:46 PM #11
reverett123's Avatar
reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
Default Oh yeah...the data...

so I got a little excited....

10/8/06
0600 arose;bs=77; 1 scr; 2 reqp; 1 eldprl
0620 nuts, raisins
0640 bs=93
0730 bs=96; have turned on much sooner than usual
0740 nut, raisins
0800 turmeric, yogurt; turn on has been unusually smooth
0830 black coffee
0845 2 reqp, 1 scr; bs=122; mildly symptomatic; pnut butter, crackers
0900 bs=102; symptoms mild+
0940 bs=82; symptoms mild-
1035 hamburger in tomato sauce on bun; symptoms mild
1045 bs=98
1100 ice cream
1115 bs=104; 2 reqp, 1 scr
1145 bs=124; mild symptoms
1220 bs=122; no symptoms
1235 bs=109; moderate symptoms-

I ran out of test strips at this point, but by 1330 I was going "off" and struggled for the next three hours. A medium level stressor and/or the darned ice cream are my prime suspects.

I have a sense of being my most fragile in the mornings and much less so after noon.

For those who refuse to accept the measurement system of the Empire and must make do with Meetrik , normal is 90 to 95 and you edge into "higher than" about 120. But don't get too hung up on the numbers. It may be that "normal" is much different for PWP.
__________________
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.
reverett123 is offline   Reply With QuoteReply With Quote

advertisement
Old 10-09-2006, 03:23 PM #12
rosebud's Avatar
rosebud rosebud is offline
Member
 
Join Date: Aug 2006
Location: Great Green Pacific Rainforest
Posts: 488
15 yr Member
rosebud rosebud is offline
Member
rosebud's Avatar
 
Join Date: Aug 2006
Location: Great Green Pacific Rainforest
Posts: 488
15 yr Member
Default I'm still here

with the computer threatening to drop dead any minute, I'm grateful it is hanging in. If I suddenly disaappear you'll know why.

Yesterday was yet another day of revelation! Yes Wendy glucose readings are where you have the little hand held gizmo and have to prick your fingers for blood. I know in Canada and probably elsewhere you can get a glucometer free when you buy 100 test strips. If youwant a coupon for a good free glucometer and pentlet go to www.accu-chek.com and root around untill you find the coupon, print on adobe acrobat and your off to the pharmacy. A friend told me all the companies give away their glucometers with an order of test strips. (sounds like a hamburger with a side order of french fries!) The catch is the test strips are fairly expensive I paid $88. for 100

Yesterdays monitoring indicated that the onset of dyskinesia comes when you have a drop in blood sugar levels after you have taken meds. If your dyskinesia is slow to occur, your blood glucose levels are probably moving slowly down...please note: the drops do not have to be very significant. Yesterday I had quite a dramatic effect of dyskinesia onset, just dropping from 7.8 to5.5. (a slower drop would explain end of dose dyskinesia very nicely.) I'm also beginning to suspect that protien foods are not the issue we thought they were, but rather it is how they affect our blood sugar as they are a slow burn food. I agree with the trail mix suggestion that Rick calls "Gorp" ... a good mix would be almonds/raisens/dehydrated apples/little pretzels Another good carry around food is Triscuits, small cubes of cheese and apple. Snack lightly about every hour...you'll be amazed. You need the combo of:1) slow burning foods like low Glycemic indexed foods like whole grains/beans and pulses... and/or protiens, 2) medium burning foods: mid range glycemic index carbs and 3) a little bit of the faster burning...most crackers fit into this catagory. This is a diabetic diet.. the difference is you have to watch how much of this stuff you eat..a little goes a long way unless you are burning it (exercise). Please note: Stress will cause a sharp rise in blood glucose levels...thereby causing your meds to cut out on you. Are you beginning to see a pattern here?

Everett is such a good example of how little your BS readings have to move to affect your PD. He would not test positive for diabetes is my bet, because the tests are not attuned to that low a fluctuation, and in the average non PD person there is no notable effect...but not the case with PWP's

Back to the lab...I just got my BS down to 5.5 which seems to be where my balancing point is and I've taken my regular med dose, and I have an apple, a bit of cheese and 3 Breton crackers. I believe the ratio for a balanced snack is 10% protien/70% low to medium GI carbs/20% high GI carbs Fats will slow everything down and alcohol will throw you for a quick off or dyskinesia because the body has no place to store it and must burn it first and its a fast burn. (when I use the term "burn" I am talking about how our body uses food as fuel to run on) With PD something has been tampering with our fuel pump

P.S. can any of you math heads out there give me a formula for converting imperial to metric and vice versa that I can do on the calculator. Having to flip to the converter site is a pain. Thank you in advance
rosebud is offline   Reply With QuoteReply With Quote
Old 10-09-2006, 07:29 PM #13
reverett123's Avatar
reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
Default

It is now 8:30 PM and I still rate this the best day in weeks. Going to stay up a while and see how miserable I get.


Quote:
Originally Posted by reverett123 View Post
...this is from my experimentation yesterday until I ran out of test strips. Shortly after that I did begin to see-saw after some moderate stress. However, thus far (2:00) has been one of my best days in some time. Today I have been eating steadily, starting with nuts and raisins when I first got up and was taking my first meds. There has been constant "grazing" ever since and my typical late morning slump never materialized.

A suggestion, mix up some "gorp" with nuts and dried fruit. Keep it with you and have a handful everytime you feel a twinge of hunger or a hint of a symptom. See if it makes a difference.
__________________
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.
reverett123 is offline   Reply With QuoteReply With Quote
Old 10-10-2006, 07:17 PM #14
rosebud's Avatar
rosebud rosebud is offline
Member
 
Join Date: Aug 2006
Location: Great Green Pacific Rainforest
Posts: 488
15 yr Member
rosebud rosebud is offline
Member
rosebud's Avatar
 
Join Date: Aug 2006
Location: Great Green Pacific Rainforest
Posts: 488
15 yr Member
Default Update:

I was off to see my Dr. this morning and had quite a talk... He was very interested andwe decided to get an A1c done to see where I sit ballpark, then we will possibly do the 3 hour fasting glucose which could be a nightmare. I have discovered that rather than take any extra PD medication when my blood sugar is too high, I can get a dose of Benzodiazapine to take care of the whole thing...Of course I'm ready for bed by 4:00 in the afternoon cuz thats what benzo's do to you. My name? I have no idea...wait a minute while I see whats pinned to the inside of my jacket

Dyskinesia happens when your blood sugar drops leaving you in an overdosed situation. The other side of the coin is: meds do not kick in on schedule when your blood sugar is too high, -leaving you in an OFF situation. Progression of the disease happens when your blood sugar levels are not stable and Oxidative stress takes place in the target area...in our case "The Brain". Congratulations, you have just completed: PD with Glucose complications 101 Pick up your certificate as you leave the hall.

I will keep you all posted on my progress as I move into the next stage of this adventure.
rosebud is offline   Reply With QuoteReply With Quote
Old 10-10-2006, 09:28 PM #15
reverett123's Avatar
reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
Default this means you!

since studies of glucose problems with PD have said that as many as 80% of us deal with it and since most of us don't know it, it doesn't take a rocket scientist to figure that most of us are in a "fool's paradise" here. The bright side is that for the last two days I have been very ineptly trying to follow a "diabetic" diet and the freezing that had been an increasing problem for the last six months has all but vanished. Put that in your pipe and smoke it!
__________________
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.
reverett123 is offline   Reply With QuoteReply With Quote
Old 10-11-2006, 08:50 AM #16
pegleg's Avatar
pegleg pegleg is offline
Senior Member
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
pegleg pegleg is offline
Senior Member
pegleg's Avatar
 
Join Date: Sep 2006
Location: Tennessee
Posts: 1,213
15 yr Member
Default Hmmmmm?

reverett -

You said: I have been very ineptly trying to follow a "diabetic" diet and the freezing that had been an increasing problem for the last six months has all but vanished.

Something just occurred to me. I have this insatiable craving for sugar (no - I am NOT pregnant!) lol
For breakfast I eat pancakes covered in syrup, frosted poptarts, sweet rolls and pastries - anything that gives me that sugar fix.

If by following a "diabetic" diet you had significant improvement of symptoms, I wonder if sugar intake might have an effect on how one's meds work????

It's worth a try (but I am addicted to sugar - I have already had 10 maryjane peanut butter kisses this morning!)

Oh, and I understand that coffee can affect your blood sugar - so we may be onto something here.

Peggy
pegleg is offline   Reply With QuoteReply With Quote
Old 10-11-2006, 08:14 PM #17
rosebud's Avatar
rosebud rosebud is offline
Member
 
Join Date: Aug 2006
Location: Great Green Pacific Rainforest
Posts: 488
15 yr Member
rosebud rosebud is offline
Member
rosebud's Avatar
 
Join Date: Aug 2006
Location: Great Green Pacific Rainforest
Posts: 488
15 yr Member
Default Peggy et al....

I have completely changed the way I think about my PD since I started testing my blood sugar levels. There is absolutley no doubt in my mind that fluctuating blood sugar/insulin levels are a huge part of the whole problem of living with PD. I fasted last nite from 8pm until I got to the medical lab this morning around 10 for my A1c test. My medication was on in 25 minutes this morning and I've considered 35 a quick start for the last few years. I have had no transition problems today...AND I ate a steak for lunch which didn't interfere with my meds at all. I even had a great big sugar cookie with hard boiled icing on it for dessert! There is good sugar and bad sugar ...just like fats we eat. No dyskinesia for two days, not even a twinge, and today my BS levels have been low enough so that I have not had to take any benzodiazapines!!!!! I am beginning to understand what I can and can't have and how much I can have. Like everett I am stumbling along somewhat ineptly, but am doing so much better in spite of my rudimentary understanding of what is happening when I put this or that in my mouth. It's beginning to look like fat is a very bad thing for those of us with PD and foods that turn too quickly to glucose...you have to get a Glycemic index to see what they are. You have no way of guessing...believe me on that one. You can have your cake and eat it too, but it depends on what the cake it made out of
rosebud is offline   Reply With QuoteReply With Quote
Old 10-11-2006, 11:12 PM #18
steffi 001's Avatar
steffi 001 steffi 001 is offline
Member
 
Join Date: Sep 2006
Location: Nottinghamshire/UK; dx 09/97 @ 38
Posts: 353
15 yr Member
steffi 001 steffi 001 is offline
Member
steffi 001's Avatar
 
Join Date: Sep 2006
Location: Nottinghamshire/UK; dx 09/97 @ 38
Posts: 353
15 yr Member
Default

What a fascinating thread and one which I am certain might turn things around for me.For years now I have been on a dose of 8 ropinarole/4 sinemet plus/2 diclofenac/1 amytriptyline/occasional zoplicone/and the last 18 months has seen the addition of sinemet cr on a daily basis.Recently I have been aware that I have absolutely no warning about "off"periods.One minute mobile,the next rigid as hell and useless.Not good when you are hacking away quite merrily with a cleaver,purposefully at work in the kitchen,jointing meat and then whoa......the next minute you are simply seen by the neighbours as just...well...standing there looking bereft and...holding a cleaver... not a good image i`d say and one to have the FOR SALE signs go up faster than the speed of light.
However,i`ve been doing this all wrong.I reach for huge bars of chocolate in an attempt to replenish energy quickly...and I mean whoppers...I sink latte coffees like no tomorrow and use vast quantities of milk,creram,cheese in sauces.Because I wasn`t putting weight on i figured that consuming this amount of protein was just fine.I hadn`t reckoned on what effect it may be hhaving on my disease.
Thanks.I am giving your suggestion a try reveretti,and have just raided my cupboard for cashews,walnuts and blueberries.At the minute I am typing with rigid fingers...my jaw is doing it`s own thing and my right shoulder is somewhere around my ear...hurting like hell.My left foot is cramping and if I speak I sound as if I`ve had several pints of guiness.It is 5.10 am in the uk and normallly I will remain like this for a couple of hours until my morning meds.
Will let you know what happens after a few doses of REVERETTI MIX.
Great information and much appreciated.
x
steffi 001 is offline   Reply With QuoteReply With Quote
Old 10-12-2006, 04:49 PM #19
rosebud's Avatar
rosebud rosebud is offline
Member
 
Join Date: Aug 2006
Location: Great Green Pacific Rainforest
Posts: 488
15 yr Member
rosebud rosebud is offline
Member
rosebud's Avatar
 
Join Date: Aug 2006
Location: Great Green Pacific Rainforest
Posts: 488
15 yr Member
Default more revelations...

I over did it on the fat this morning which in combo with some crackers, took my blood sugar up to 7.2. Couldn't get meds to kick in but I can get rid of my tremor by taking benzodiazapines. Took some extra PD medsand was afraid of dyskinesia.....but noticed that my blood sugar levels were coming down very slowly, because thats what happens with fat (and protien). Do the sinemet which has a relativley short half life, was all used up before any significant drop. Therefore ...no dyskinesia. My next hypothosis is: you do not have to have high blood glucose readings to have these problems....you just need to have the fluctuations. People who have more of a problem with dyskinesia are more likeley to be Hypoglycemic (blood sugar drops below healthy levels). You have the fluctuations but yours tend to be on the lower end of the scale. ANY TIME YOUR BLOOD SUGAR IS NOT EVEN YOU WILL RUN INTO PROBLEMS!!! The name of the game is keep your blood sugar as close to even as possible, and you will have a hard time doing that without a good diabetic type diet to follow. The glycemic index is fine for carbs, but we also eat and need protien and fat. You cannot do this just by guessing.
My PD is tremor dominant and I can kill it of with benzodiazapine class drugs, I have both Clonazipam and clobazam. (one of them is an unfinished perscription I threw in the freezer a year and a half ago, it pays to save the extra's). I am still reading like a crazy person, but the brain is only one of the places oxidative stress takes place. From what I've read about the high incidence of diabetes and other blood gluscose disorders among people with PD, there is a good to excellent chance that 50-70% of the people on this forum can benefit from this information. All Rick and I can do is swear that it works for us. The more I learn the more the pieces fall in place for me. In the last few days I understand my PD much better than I ever have in 10 years. The tough part is going to be to convince your medical people to humor you and let you be tested for high/ low blood sugar. But even if your in the range considered normal, just the fact that your blood fluctuates can cause your medication to work or not work, to cut out in amazingly short moments, or to throw you into heavy dyskinesia. Try fasting for a day to put yourself on an even BS level and if you are not impressed then ignore us....but if you find a benefit in it, then you may be one of the lucky ones who can have your quality of life improved. I KNOW we are onto something. Knowledge is Power!
rosebud is offline   Reply With QuoteReply With Quote
Old 10-12-2006, 10:15 PM #20
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb type 3 diabetes....

This is a new concept...and you can search Google for more:

http://www.boston.com/yourlife/healt..._in_the_brain/

but I think poor insulin actions in the brain are significant, and we will see
more on this.

One substance that enhances brain insulin actions is inositol. We had some
threads about this on OBT.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
CD & Down's Syndrome aklap Gluten Sensitivity / Celiac Disease 1 09-11-2006 08:57 AM
Diabetic PN and Nutrition jccgf Gluten Sensitivity / Celiac Disease 3 09-07-2006 08:15 AM


All times are GMT -5. The time now is 11:58 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.