My friend has Parkinson’s. I’ve known him since 1986 when he was working with a large multi-national company and traveling all over the world. He played regular tennis, loved to go for long walks and had a full social life.
In ’90 he became the representative of an American company selling banking infrastructure. He worked hard and his success didn’t surprise anybody.
In’96 when I had a major depressive episode, he’d take me out for a walk every evening. During those walks I began to notice that he was dragging his left foot. There was a slight tremor in his left hand. He went to a neurologist who told him he had Essential Tremor.
He told me that the doctor said it was Essential Tremor and not Parkinson’s because the gait was not typical of Parkinson’s.
I remember we’d gone out for coffee when he told me and I tried to make light of it and held his hand.
He was started on Artane.

He’s got progressively worse. Dopamine agonists and Sinemet were addeed. Different timings, titrations and combinations have been tried. He has been to the U.S., and the U.K., but not much has come off the meetings with renowned specialists. He does all the recommended exercises. We don’t know, perhaps things could have got worse if he hadn’t.

It started with unilateral tremor, now it is on both sides of the body.

For the past few months he had his left toes curl up. Walking became difficult. He was looking forward to a holiday he had to miss.

On the 15th of this month he went to see a new movement disorder specialist mainly for help with his toes. She suggested a gradual addition of various drugs. The first to be added was Comtan.
From the 21st the tremor changed to literally a shake. He has been waking up shaking.

For the first time I have heard fear in his voice.
For the first time he appears vulnerable, in need for demonstrative affection.

I read up yesterday.
It seems that for 3% of patients this is a side effect.
This morning he spoke to the doctor and stopped the Comtan.
The doctoctor suggested that he was taking too little Sinemet.
But the tremors got worse only after adding the comtan. The Sinemet had been left as it was.
The toe-curling 'though is much better.

I wanted to check his drug schedule by you incase you have sugestions.

Yesterday it was as follows:

07.15 - Artane
08.15 - Sinemet 25/100 X .5
09.00 - Ropinerole 1
11.30 - Sinemet 25/100 X .5 + Comtan .5
12.50 - Sinemet 25/100 X.5 - extra because he had a meeting and was shaking badly.
13.15 - Artane
16.15 - Ropinerole 1
16.30 - Sinemet 25/100 X .5
17.15 - Sinemet 25/100 X .5
19. 30 - Sinemet " " " " + Comtan .5

Next week Azilect will start.

I am so worried.

I'm sorry for the distress you and your friend are experiencing with the health struggles both of you have. I read and enjoyed your blogs.

I have been diagnosed since April 2001, and I continue to do extremely well for a 71-year old. My neurologist and I decided to stick primarily with sinemet from day one, with amantadine added a little later. He and I are both pretty skeptical about the dopamine agonists, and have settled on a judicious combination of sinemet CR and a little regular sinemet spread out in only two dosings;

25/100 regular sinemet X1 + 50/200 sinemet CR upon rising at 7 AM.

After 30 min., and a low protein breakfast (oatmeal), I take a big handfull of -
100mg amantadine X1, low-dose aspirin X2, Herb-lax tabs X4 (you can guess the function), slow-release Welbutrin and Cymbalta, and a super-duper vitamin-mineral-probiotic combination, Vitalizer.

I also take 1 tsp of VIVIX, a mixture of polyphenols which includes 100mg of resveratrol. Herb-lax, Vitalizer and VIVIX are Shaklee products.

In addition, I take a 400mg capsule of coenzyme Q10 with meals (3X for a daily total of 1200mg).

At around 3 PM, I take 50/200 sinemet CR X1 and 25/100 sinemet CR X1.

This regimen keeps me out of shuffle-mode until about 8 or 9 PM. With another 25/100 sinemet CR at around 8 PM I can be shuffle-free 'til midnight.

My Parkinson's symptoms have always been bradykinesia, rigidity and postural instability, all of which are well controlled so far. Tremor has never been one of my symptoms.

A drug I have been taking for about 5 years, and to which I attribute much of my slow symptom progression is dextromethorphan, an over-the-counter preparation intended for pediatric cough suppression. This drug is one of a class called morphinans, which includes the prescription drug naltrexone. This is an old drug, approved by the FDA in the 1980s for treating individuals who are addicted to opiates, particularly heroin. Naltrexone, taken at very low doses, has been found to be effective in slowing or arresting progression of several chronic diseases, especially multiple sclerosis. Because of its non-patentability, no pharmaceutical companies are interested in persuing clinical testing in MS or other diseases for which it has been found beneficial. Not surprisingly, many physicians are reluctant to prescribe naltrexone for such off-label uses. My own neurologist has been supportive in my use of dextromethorphan at low doses.

If you are interested in learning more about dextromethorphan, do a search for my previous posts on this forum. Extensive information on the uses of low-dose-naltrexone is available on posts on this forum by Ashleyk and on the web site lowdosenaltrexone, or LDN. I think there is some information on the LDN website on efficacy of the drug in treating lupus also.

I hope that some of the above may be helpful to you, and I would be happy to clarify anything that is unclear or confusing.

Robert

Isis-
I, too, am an "old timer" with 18 years under my belt, although I began at the tender age of 39. Robert has given you some extremely good advise. You will find that many neuros will attempt to overwhelm PD with medicaions and one ends up unable to know where PD leaves off and sde effects and interactions begin. Minimize the number of meds. Increase dose as needed but resist adding another variable unless you and your friend understand why and agree. You need to keep in mind that the only tool that the doc has is that prescription pad. Being human, he is going to reach for it.

The low dose dextromethorphan that Robert mentions is a very promising area. If you are not up to reading all the posts, here is a sort of "hit the high spots" listing-

http://neurotalk.psychcentral.com/sh...xtromethorphan

http://neurotalk.psychcentral.com/sh...xtromethorphan

http://neurotalk.psychcentral.com/sh...xtromethorphan

http://neurotalk.psychcentral.com/sh...xtromethorphan

http://neurotalk.psychcentral.com/sh...xtromethorphan

http://neurotalk.psychcentral.com/sh...xtromethorphan

http://neurotalk.psychcentral.com/sh...xtromethorphan

http://neurotalk.psychcentral.com/sh...xtromethorphan

http://neurotalk.psychcentral.com/sh...xtromethorphan

Thank You Robert and Thank You Reverette.
I am very grateful that you got in touch.
It is a lonely journey. The only other person we know with Parkinson's is a lady who has had it for twenty years now and the progression has been fast.
So it really is rather disheartening.
I will study all the details you have sent over today and if necessery tomorrow.
I really value your input.

Robert - I blog in more detail at another website.
The link that I have on my signature has litle personal information, ie, more palatable for general consumption.
Perhaps you would like to check it out.

http://www.blogher.com/blog/myinterpretation

I must apologize for not having referenced reverett123 (Rick) in my earlier post.

Rick, I think you have easily won the title of Chief White Rat in the fearless self-testing search for more effective treatments for Parkinson's, so I just may begin so addressing you. Seriously, you continue to amaze and inspire me with your thorough and systematic exploration of things that may benefit us.

Isis, if you have checked out the links which Rick posted, you may have run across an explanation of why several of us use dextromethorphan instead of naltrexone in our low-dose self-treatment. Both of these drugs, along with other similar compounds, have been extensively studied in animal models of Parkinsons and found to be equally effective in neuroprotection by the laboratory of Dr. J.S. Hong, head of Neuropharmacology at the National Institute of Environmental Health at Research Triangle, North Carolina. He has been a leader in developing the concept of chronic neuroinflammation as the cause of several neurodegenerative diseases.

The more obvious reason we have chosen dextromethorphan rather than naltrexone is that it does not require a physician's prescription and that it is much less expensive.

To obtain a more complete history and description and current status of the "LDN movement" I encourage you to check the link; http://lowdosenaltrexone.org/

Robert

Robert, I have just been checking the links that both you and Rick suggested and the http://lowdosenaltrexone.org/ website.
I am very excited. And yes I will try it for my Lupus and CFS too.
Maybe I'll be greedy and hope it helps the Bipolar as well.

first what is "CFS"

There are many people out there who are doing great with their bipolar disorder. You seems to have the kitchen sink type of disorder!! having all those conditions must be hard on you. My thoughts are:

1. have you had a workup by a top notch diagnostioc clinic? Like Cleavland Clinic??

2. maybe if you get one of your diseases under control, the rest will be easier to treat??

my .02 cent worth anyway.
keep us informed about your LDN trial!!'
sending a hug your way, I'm a big believer in them!!
Charlie

P.S. does your friend go to a good movement disorder specialist? a "world renoun specialist" may NOT be the best for him.
A good diagnostic center is what he needs. Tell us what area of the country he is in and he can get reccomendations on a diagnostic center and a top notch MDS.

First, thank you, Robert, for the kind words. I think I will go by the simple "Rat" for brevity.

Isis, (IMHO always), you and we are canaries in the mine. The Industrial Revolution began about 1750 in London. The first undeniable description of PD was made in London in 1817. One of the basic changes of the IR was the introduction of chronic stress into the average person's daily life. Before that time acute stress was the norm and the social structure of the extended family handled that well.

Chronic stress is very destructive over time. It produces physical alterations in the endocrine system in the areas dedicated to maintaining a state of balance or health (homeostasis). These alterations lead to constantly elevated stress hormones which destroy tissue as well as interfere chemically with normal function.

The wild card in all this is that these changes become hereditary by virtue of the effects of maternal stress hormones upon the fetus. And it is transgenerational - meaning that although yourmother led a stress free life, the stresses your grandmother endured affect your system.

The bottom line is that if one introduces chronic stress into a society, over time the norm for that society is going to change in a negative manner. The negative effects of chronic stress are going to accumulate and bring a host of vulnerabilities with them. In PD, it synergizes with neuroinflammation. All these other maladies of modern times (CFS, bipolar, schizophrenia, autism, diabetes, metabolic syndrome, ...) show tantalizing links to this disruption of balance, which is why my own blog is entitled A Matter of Balance.

The point of this rambling crash course is that I am becoming more and more convinced that the LDN and LDDXM regimens are going to prove to be a new approach in Western medicine - the adaptogen. Long a familiar concept in the East, the idea of a drug that simply makes it possible for one's body to right itself is new. But it provides an explanation for why patients dealing with a dozen different diseases report success and do so emphatically. Keep us posted. -Rick

Robert, I have got the cough syrup. We shall start with it this evening.

Chasmo, CFS is chronic fatigue syndrome, many with lupus have it.
With the narcotic like painkiller I am on now, that is a lot better. (Except yesterday when I had an additional capsule having forgotten that I'd already had one, and boy was I wired. Friends were over for dinner and you should have seen the looks on their faces. I did tell them about the extra medication though, otherwise I'd probably be kept under keen observation over the next few days).

I don't live in the U.S., but comparing the treatment I get here in India for both bipolar and lupus with those that my friends receive abroad, I really feel lucky and am honestly far better off. I have fantastic relations with my doctors, and in the last eleven years have never had the need to look further for help.
In fact I am glad I came back from England. A lovely girl, a very close friend's daughter was also diagnosed with bipolar about five years ago.
She comes from a privileged background and she has the wherewithal to get the best of treatments. After unsatisfactory consultations in private clinics, she is now with the NHS, but has had to be hospitalised three times already, and has had her life so compromised that nobody in her very extended family trust her to make responsible decisions. Even I can see that she is grossly under-medicated.

Many people with lupus also suffer from depression and some with bipolar, there seems to be a connection. But as of now the treatments are done symptomatically and independent of each other.

The hugs are welcome. Very welcome. To make sure that I get more, here are a few from me to you.

Rick -
I agree, although I have never put this into words. The rambling serves the thought well.

Thank you all again. I have begun my journey to some of your personal blogs. I need to be a sponge and soak up every information possible on PD now. By dear friend has finally given me the liberty to have an opinion in his treatment. I have been so frustrated these past years with having to keep my mouth shut that I refused to read up.

Oh! - Getting rid of that Comtan has also got rid of the extreme tremor.

I do hope that my writing about the BP and lupus is not bothering anyone.

I figured "CFS" meaning out right after I posted.......lol!!!
Do you take Seroquel for your bipolar?
provigil (I think thats it) is the drug of choice for CFS here ritilan is the next
Its good that you have a working relationship with your doctors/ My experience (through others) has been that the big clinics here are without peer. I hope you can have a workup done here at some point. I feel fairly confident that they could improve the the quality of your life if nothing else.
hang in there!!!

Charlie