Just a fleeting thought, my wife and I have devised a food and restaurant rating that we use from time to time.
Perhaps it is time to institute a PD guide for our good days and bad days. We could save a lot of time and energy by using a day rating code. Just to communicate to whomever and the world how we feel on any particular day. We could keep a log and chart our feelings, sort of a doctor visit sheet. "Hi, GG" or " Hi, GB "
P. D GOOD DAYS/BAD. DAYS RATING SYSTEM
GG GOOD GOOD DAY
AG ACCEPTABLE GOOD DAY
IG IMPROVING GOOD DAY
BG BAD GOOD DAY
BB BAD BAD DAY
AB ACCEPTABLE BAD DAY
IB IMPROVING BAD DAY
GB GOOD BAD DAY
I hope it is GG for you today.
5 comments:
CHECK WITH YOUR NEUROLOGIST BEFORE MAKING ANY CHANGES IN YOUR MEDICATION...LET THE DOCTOR READ THIS AND HELP YOU DECIDE IF THIS THEORY MAY HELP YOU...BY SLIGHTLY CHANGING THE WAY YOU DOSE YOUR SINAMET YOU MAY BE ABLE TO REDUCE SIDE EFFECTS AND TO EXTEND THE NUMBER OF YEARS IT WORKS....
STILL INTERESTED? READ ON!...(and no I am not selling anything!)
I am a secondary caregiver as my Father is going on his 12th year with Parkinsons.
The first 5 were bearable and my Mom managed ok. Dad got by without taking Sinamt, though he had a lot of side effects from Mirapex and Artane.
I was busy teaching Science and although I lived close, found it tough to find the time to help out....though I'd often come over on the weekends.
Years 5-10 became tougher as you know...Sinamet was introduced in year 7 and really helped for a while...but in year 11 Dad got Aspiration Pneumonia...spent a week in the hospital and was severly weakened. With slow rehab and excellent Physical Therapy, Dad improved to about 70%-80% of his pre-pneumonia condition. At 80 years old most Doctors wrote him off. He needed more care but did ok for 2 more years than the hospital doctors gave him. Here we are 2 years later though, and he has swallowing problems during his off periods. He has also developed dykinesias which no Neurolgist seemed able to help with. Then I came upon this theory in my countless internet searches:
The Pulsatile Theory of Levadopa Administration:
What does this mean? It means the Levadopa (L-Dopa or "Sinamet") you take is in Big Chunks compared to the natural flow of a non Parkinsons person.
IT IS BELIEVED THAT IT IS THE TAKING OF SINAMET (L-Dopa)IN THIS FASHION THAT PRODUCES MANY OF THE WORST SIDE EFFECTS OF SINAMET...INCLUDING DYSKINESIAS, EXTENDED OFF PERIODS AND DRUG FAILURE.
I did this with my Dad and it really helped! Read on...
What does it mean? It means that when you take a tablet or 2 of Sinamet...the sudden rise of LDopa or falling off is stressful, and over time produces Dyskinesias...
So if for example you take a 2 tablet dose, ask your neurologist if you can take the two tablets 10-15 minutes apart. The first tablet you'd take just a a little BEFORE you normally would...and the second just a little AFTER you normally would...about 15 minutes apart may work (AGAIN...ASK YOUR NEUROLOGIST FIRST!)
WHY? By dividing up the dose you try to take the first tablet a little early JUST BEFORE your previous dose wears off. It keeps the L-Dopa level from falling too fast or too low....then the second tablet can later "Buoy" up the dose level, BUT avoiding a sharp spike.
My father takes a dose of 1 1/2 tablets 6 times a day. He had horrible peak dose dyskinesia, transitional (in between dose) dyskinesias and bad extended "off" periods and drug failure. I began dividing his doses in 3 half tablets, each 10 minutes apart...
HUGE DRAMATIC IMPROVEMENT....70%-80% BETTER IN ALL AREAS
I am just writing this because NO Neurolgist advised me about this. IN FACT, they looked at my Dad...and shrugged their shoulders and said , "Well, 12 years with Parkinsons....and....what can you do?"
I brought this idea to a great Neurolgist at the Veteran Administration in West Los Angeles and he helped me out line the dosing schedule.
Though my father's has it tough, at least this has eased his discomfort some...
REMEMBER, THIS THEORY ADDS NO OTHER NEW DRUGS & SIMPLY FINE TUNES THE SINAMET YOU ARE ALREADY TAKING...IT MAY ALLOW YOU IN THE FUTURE TO TAKE LESS SINAMET...PERHAPS...
Again Ask your Neurolgist...BETTER YET, ASK 3 DIFFERENT ONES AND COMPARE THEIR ANSWERS..ASK QUESTIONS...BE RELENTLESS....OPTIMIZE YOU EXERCISE DIET AND SUPPLEMENTS (VITAMINS, ETC.)AND YOU'LL MAKE PROGRESS
Good luck...I hope this helps someone....in the name of my Dad...Ed
Love ya Dad...
Steve
CHECK WITH YOUR NEUROLOGIST BEFORE MAKING ANY CHANGES IN YOUR MEDICATION...LET THE DOCTOR READ THIS AND HELP YOU DECIDE IF THIS THEORY MAY HELP YOU...BY SLIGHTLY CHANGING THE WAY YOU DOSE YOUR SINAMET YOU MAY BE ABLE TO REDUCE SIDE EFFECTS AND TO EXTEND THE NUMBER OF YEARS IT WORKS....
STILL INTERESTED? READ ON!...(and no I am not selling anything!)
I am a secondary caregiver as my Father is going on his 12th year with Parkinsons.
The first 5 were bearable and my Mom managed ok. Dad got by without taking Sinamt, though he had a lot of side effects from Mirapex and Artane.
I was busy teaching Science and although I lived close, found it tough to find the time to help out....though I'd often come over on the weekends.
Years 5-10 became tougher as you know...Sinamet was introduced in year 7 and really helped for a while...but in year 11 Dad got Aspiration Pneumonia...spent a week in the hospital and was severly weakened. With slow rehab and excellent Physical Therapy, Dad improved to about 70%-80% of his pre-pneumonia condition. At 80 years old most Doctors wrote him off. He needed more care but did ok for 2 more years than the hospital doctors gave him. Here we are 2 years later though, and he has swallowing problems during his off periods. He has also developed dykinesias which no Neurolgist seemed able to help with. Then I came upon this theory in my countless internet searches:
The Pulsatile Theory of Levadopa Administration:
What does this mean? It means the Levadopa (L-Dopa or "Sinamet") you take is in Big Chunks compared to the natural flow of a non Parkinsons person.
IT IS BELIEVED THAT IT IS THE TAKING OF SINAMET (L-Dopa)IN THIS FASHION THAT PRODUCES MANY OF THE WORST SIDE EFFECTS OF SINAMET...INCLUDING DYSKINESIAS, EXTENDED OFF PERIODS AND DRUG FAILURE.
I did this with my Dad and it really helped! Read on...
What does it mean? It means that when you take a tablet or 2 of Sinamet...the sudden rise of LDopa or falling off is stressful, and over time produces Dyskinesias...
So if for example you take a 2 tablet dose, ask your neurologist if you can take the two tablets 10-15 minutes apart. The first tablet you'd take just a a little BEFORE you normally would...and the second just a little AFTER you normally would...about 15 minutes apart may work (AGAIN...ASK YOUR NEUROLOGIST FIRST!)
WHY? By dividing up the dose you try to take the first tablet a little early JUST BEFORE your previous dose wears off. It keeps the L-Dopa level from falling too fast or too low....then the second tablet can later "Buoy" up the dose level, BUT avoiding a sharp spike.
My father takes a dose of 1 1/2 tablets 6 times a day. He had horrible peak dose dyskinesia, transitional (in between dose) dyskinesias and bad extended "off" periods and drug failure. I began dividing his doses in 3 half tablets, each 10 minutes apart...
HUGE DRAMATIC IMPROVEMENT....70%-80% BETTER IN ALL AREAS
I am just writing this because NO Neurolgist advised me about this. IN FACT, they looked at my Dad...and shrugged their shoulders and said , "Well, 12 years with Parkinsons....and....what can you do?"
I brought this idea to a great Neurolgist at the Veteran Administration in West Los Angeles and he helped me out line the dosing schedule.
Though my father's has it tough, at least this has eased his discomfort some...
REMEMBER, THIS THEORY ADDS NO OTHER NEW DRUGS & SIMPLY FINE TUNES THE SINAMET YOU ARE ALREADY TAKING...IT MAY ALLOW YOU IN THE FUTURE TO TAKE LESS SINAMET...PERHAPS...
Again Ask your Neurolgist...BETTER YET, ASK 3 DIFFERENT ONES AND COMPARE THEIR ANSWERS..ASK QUESTIONS...BE RELENTLESS....OPTIMIZE YOU EXERCISE DIET AND SUPPLEMENTS (VITAMINS, ETC.)AND YOU'LL MAKE PROGRESS
Good luck...I hope this helps someone....in the name of my Dad...Ed
Love ya Dad...
Steve
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