For Your entertainment here is another site it is called pdrecovery.org
This is an explanation and cure for PD , for a few lucky ones, from Oriental medicine take on it. Most informative site also she gives explanations of drugs and why they stopped working and what you can do about it. A very worthwhile site. Her books and Publications are free for a download so if you have never accesseded it is worthwhile to take a look at it.
Through her work with Parkinson's patients she has noticed that all PDS had same bad days and same good days. The cycle is 23 days, I have started marking it on my calendar, it is like clockwork. I just had 2 meltdown days accompanied by crying jigs. Now I am going to start feeling better till it starts to happen again in 23 days.
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parkie13
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The author (Janice Walton-Hadlock) says her book also provides information -- for those (almost all of us) who have been medicated for three weeks or more and are therefore excluded from her program--on how best to use the anti-parkinsonian meds to squeeze the longest beneficial use out of them. Knowledge is power!
Here's a downloadable pdf file of her free book, "Recovery from Parkinson's," :
I'm just reading the replies now, thank you for providing the link. The site' is not that easy to find it doesn't come up on all the searches. Her books are also available for purchase. That is if you prefer hard copy. Please do not forget her book once upon a pill that does talk about medications when I was reading the description it fit me to a tee
I just glanced through, it is very exhaustive , my gut feeling is that treatment is based on Qi Gong and Mind over Body , I am not sure !! I have to read it thoroughly.
I just provided the link to Walton-Hadlock's book for those who, like myself, might be curious. I was not implying that I had read the book, let alone endorsed it. Since dipping into it, I do not see that her primary trauma that allegedly triggers Parkinson's --"dissociation," as she calls it--applies to me. Am I an isolated exception to her theory or is it just voodoo-nonsense on a par with astrology, chiropractic, and homeopathy?
Did you see the section on WARNING to medicated parkies -- i.e. practically all of us?? I have had so many weird reversals in my disease that READING this is very frightening for me because I believe she's onto something -- including vile consequences for the vast majority of us who are medicated. I mean, what are we supposed to DO with this information?? Let's suppose it IS true for the sake of argument; where does that leave US?? HAVE ANY OF YOU HAD IDIOPATHIC REVERSALS OF SYMPTOMS? I have -- only once -- but so far (thank God) they never returned. Still, I am "addicted" to the drugs if I want to be able to move and think. Scary stuff, like I said... would love to see a discussion on this!!
parkie13 - indeed I do - when I'm OFF. It's so weird. When I'm ON I'm totally normal -- I mean totally. When I'm OFF, every symptom EXCEPT my right hand tremor returns and my function is abysmal. So I live a roller coaster ride: i.e. noon = meds; 230=can feel wearoff begin; 330=OFF Iin full swing even including cognitive impairment; I tough it out until next dose @ 4pm -- then the same cycle repeats. A WEIRD THING is this: once I take my 4th dose @ 8pm, my body "knows" I'm down for the night and even though I wake up often, I can get up at, say, 3am and have near-full function as long as I'm typing. Gait not so hot overnight but everything else OK....until around 8 am and then I start the ON/OFF cycle again! HAS ANYBODY EVER HEARD OF SUCH A CRAZY ANOMALY??
oh yes. Evenings are better hours than daylight hours. I hardly need C/L after it gets dark. I do most of my C/L during the 1st half of my day. However, truth be told my need for C/L won't usually begin right away every morning.Some mornings I go 3 or 4 hours before I need to medicate for the 1st time. Is that what you are talking about?
Yes that's exactly what I meant to say! Last week another weird thing happened. My wearoffs virtually disappeared. After about 9 days they returned. What the...???
Maybe hopefully we can spread this and help somebody that is not on medications yet. I read the books and I followed her program where I tried to get rid of Parkinsons. I think I am stuck in what she calls partial recovery. It probably has been at least a year since I have done it. When I started her program I was only taking Zendopa 3 times a day. After my so-called partial recovery I have not been taking anything for a long time just very recently I started taking one dose of zandopa per day.
I also have been to Howard shifke site. Fighting Parkinson's drug free. If you Google it you should come up with the right site. He is very inspirational, with many things that you can do to help yourself. You can be on all your meds while doing his quote recipe un quote.
I am so sorry for all of us. My balance is really bad my hands are dysfunctional I have no fine motor skills left I can still write though. It is getting harder and harder for me to turn around in bed. I am tired my left side is the one that is affected its shakes. All I can say is thank God for my husband of 44 years he has been wonderful. I don't know what I would have done without him. parkie13 mary
"It now is becoming apparent that people who have ever taken dopamine-enhancing drugs evidently have semi-permanent brain damage that corresponds to the adverse-effects warnings provided for these drugs by the drug manufacturers: tardive tremors, tardive dyskinesias, tardive body-wide slowed movement, tardive body-wide difficulty in initiating motor function – all symptoms of drug-induced parkinsonism. "
***is a complete load of bullcrap.*** Tardive dyskinesias, tremors, etc. are an adverse effect of psych meds, not Parkinson's meds. Supplementing naturally occuring dopamine does not cause these kinds of problems. Don't waste your time and energy with this foolishness.
park_bear = I don't quite follow your drift -- what are psych meds and what do you mean by "supplementing naturally occuring dopamine" exactly? It's been long established that long-term use of sinemet (levodopa specifically) will eventually prompt dyskinesias -- usually around 5 -6 years in. On the other hand, I'm 15 years in, no dyskins yet and only recently have had (remarkable) problems with wearoffs. Your thoughts?
Long-term use of sinemet /levodopa does NOT eventually prompt dyskinesia. That theory, which always seemed questionable, has been debunked by this recent research: brain.oxfordjournals.org/co...
Your 15 years is yet another data point.
As you will see from the list below, the meds involved with *tardive* dyskinesias have nothing to do with Parkinson's:
Tardive dyskinesia is a serious side effect that occurs when you take medications called neuroleptics. Most often, it occurs when you take the medication for many months or years. In some cases, it occurs after you take them for as little as 6 weeks.
The drugs that most commonly cause this disorder are older antipsychotic drugs, including:
Chlorpromazine
Fluphenazine
Haloperidol
Trifluoperazine
Other drugs, similar to these antipsychotic drugs, that can cause tardive dyskinesia include:
This is amazing news. I will read these links immediately! THANK YOU SO MUCH. I've never taken or heard of the "bad" drugs you mention here; where do they fit into the picture? Thank you again!
So - the 15 years and 800 mg of Sinemet daily might get me -- but the Sinemet per se is not the issue, right? Good to know and better news than before but as you point out, my individual variables above could be and likely are problematic. Hmm.
Yes, from the study I linked to of the people from Ghana who did not have access to levodopa, it's the length of time with the illness that can get us and not the Sinemet usage per se.
You might want to look into NAC - N-acetylcysteine, an OTC supplement that was recently shown to be helpful. There are number of threads about it on this site and here is the study: journals.plos.org/plosone/a...
My husband was prescribed Metoclopramide for sickness when his neuro changed him over to Stalevo which made him feel nauseous. Due to an oversight by his GP, he took Metoclopramide for 16 months after which he was told to stop taking it; then we read up on all the terrible side effects and the fact that this drug should never be given to PWP but by then the irreversible damage had already been done! Lesson learned - always read the package insert and raise any concerns with your healthcare professional immediately!
Im not clear abou what you are saying - but in my moms case - horrible dyskinesia is totally a side effect of her parkinsons meds - sinemet;/.
Don't give her the meds . she is absolutely fine .. but just cant move ..
Some of the doctors she has seen over the years also believed that she didn't have parkinons to start with , almost like drug induced parkinsons .. whatever it s , its been very painful for the whole family .
I am saying that for Parkinson's patients, the dyskinesias due to levodopa (Sinemet, etc.) arise from the length of the illness, not prior usage of levodopa.
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Be that as it may, was there an earlier time when the Sinemet did help your mom without the terrible dyskinesias?
Absolutely did . Initllay the doctor had given her such high doses and she was completely fine . She didn't even need such a high dose .. but after 10 years of levodopa -- we have to break it into 25/100 dose .
Even Mucana cause dyskinesia .
The latest problem is sleepiness .. can barely keep her eyes open .
As the disease progresses the dyskinesias start up and then get worse over time.
If she is not taking amantadine or hasn't tried it, it is worth a try because it has been shown to reduce dyskinesias. It can cause dry mouth so be on the alert for that adverse effect.
Yes, sleepiness/fatigue is a very common PD problem - I have had it aggravated over the past week myself. I have never been a caffeine user but have resorted to tea which seemed to help. As far as I know nothing wrong with using that for PD patients.
Her Neuro said more sinemet - that had her dyskinesic while sleepy .
She can barely keep her eyes open and this hit her when she had a fall . She took a few pain meds and after this the sleepiness doesn't even allow her to keep her eyes open .
I don't think NAC was the cuprit . I am planning on adding ALC and ALA . Also reintroducing coq10 and finally melatonin.
Here is a presentation from a company developing a new, improved 340 mg/day version of amantadine: ir.adamaspharma.com/common/...
They are saying patients do better with increased levels of it during the daytime. On page 14 you can see the levels they are aiming for vs time of day. Similar levels could be achieved with 100mg of amantadine once each upon arising, mid- morning and lunch or early afternoon. If you decide to try this best to run it by your MD first to keep them informed.
Hi I am very sorry about your mother if you can get to the PDrecovery.org site and read her book once upon a pill it will be explained to you in great detail what is going on with her and her brain and the medication. All the questions will be answered. Mary
I have only been on my meds (Sinemet and Azilect) for one month and I can not imagine living without their relief. So I guess I'm addicted huh....well I'm also addicted to air...and fluids... and food...and sleep...and a few other things like voiding waste from my body. All these things make living possible and for me being free of the body tension and muscle aches makes my life possible to live. Forget the tremors...those are the least of the discomfort as far as I'm concerned...it's the pain...the pain that makes life without the meds miserable.
She is not charging for her material. She is not taking advantage of the desperate. This is her life work and even if one person could be helped it would be monumental.
Dr. Janice Walton Hadlock from the book said that a lot of people would call her and thank her for being able to get rid of Parkinson's end be symptom-free. That is when they realized that yes for some of the people it was working.
She did talk about it in her book and yes the people have been diagnosed by neurologists. Her book and her Theory did not happen overnight it took many years of seeing Parkinson's patients and formulating Theory and checking it out.
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