I was evaluated for DBS surgery last week. The doctor said I was not the best candidate because I don' respond to leva dopa well.

[Eileen9]

He also said the surgery was the best he could offer me. He said "perhaps" it would help with the dyskensia and dystonia I have. If it did I might need less medication and my speech would improve. ( leva dopa causes me to have a severe stammering and stuttering problem.). Either way, whether I have the surgery or not, the PD will continue to progress. I feel that it would be unfair to my husband if I don't try, as he is my care giver. Does anyone have any thoughts on this?

[soup]

When and how were you diagnosed with Parkinson's?

[Eileen9 in reply to soup]

I was diagnosed in 2006 at the age of 62 after going to numerous doctors who could not figure out what was wrong with me. I do not have tremors, but a weakness on my right side. I finally went to Rush Hospital in Chicago, where the doctor diagnosed me immediately. In the beginning I responded to leva dopa very well and it eased my symptoms enormously. However, it causes quite a not of dyskenisia now.

[soup in reply to Eileen9]

Does L Dopa relieve any of your Parkinson's symptoms as well as causing dyskinesia?

I have an acquaintance who was not able to take sufficient L Dopa to control her pd symptoms because it caused her so much dyskinesia. She had DBS but was not happy with the outcome until she was playing with her grandchildren and accidentally switched off the controller. Her extreme dyskinesia came back instantly and remained until she could get the thing started again.

She hasn't looked back since.

[metacognito]

I'd give all credible alternatives - esp. medical marijuana - a try before resorting to surgery or DBS. There are plenty of people on this site experiencing encouraging results from cannabinoids as well as the following studies:

Parkinson’s Disease

Marijuana Compounds May Aid Parkinson's Disease

cannabisnews.com/news/19/th...

Marijuana-Like Chemicals Helps Treat Parkinson's

cannabisnews.com/news/22/th...

Cannabis use in Parkinson's disease: subjective improvement of motor symptoms.

cannabis-med.org/studies......

Cannabinoids reduce levodopa-induced dyskinesia in Parkinson's disease

cannabis-med.org/studies......

Nabilone on L-DOPA induced dyskinesia in patients with idiopathic Parkinson's disease

cannabis-med.org/studies......

Evaluation of cannabidiol in dystonic movement disorders.

cannabis-med.org/studies......

Beneficial and adverse effects of cannabidiol in a Parkinson patient

cannabis-med.org/studies......

Neuroprotective effect of cannabinoids in a rat model of Parkinson's disease

medscape.com/medline/abstra...

[Kadie57]

I think you should have a 2nd opinion. What would it hurt? I know the levadopa is a major tool that you need to respond well to. I had DBS surgery and with out my great response to that medication I would be as good as I am. REMEMBER DBS STOPS THE SHAKING, not the progress nature of Parkinson. NO point to surgery if you don't respond to the meds. Better days ahead and bless whatever decision you make.

[Eileen9 in reply to Kadie57]

I agree that a 2nd opinion would be the thing to do. (I don't have tremors which Is what I think DBS corrects best.). I happened to see my family doctor today, and he recommended going to Mayo Clinic in Minnesota for the 2nd opinion. He gave me the number for the neurology department there. Thanks for your input.

[Hikoi]

I feel sad you feel you owe it to your husband as caregiver to try it as it is not without problems and potential side effects. I think i would do alot of reading about it and a second opinion would be helpful. Medtronic who make the hardware have a site with selection criteria info. Best wishes in deciding. I hope you don't feel pressurised by the apparent popularity of DBS.

[lmbanni]

Hi Eileen9,

<y husband has a DBS and has for 1yr and 8 months. I got concerned when you said the doctor said it may help with your speech problems. Sometimes the DBS will actually cause people to have speech problems. Did he talk about that to you? So that will be kind of a toss-up if it will help or make you worse. My husband was able to take less medication but only the first year. He was actually off all the carbadopa/levodopa but now he has to take it again 4 times a day. 2 pills each time. 25/100. We were disappointed that it was not as long as we expected it to be off the medication. Everyone is different though and if you do this it may be alot longer for you!! I hope so!! Just wanted you to know how long it was for my husband to give you an idea on what happens to some people. I also am sad to tell you that it does not help you with dystonia. Sometimes these doctors just don't know everything about PD. I guess that is why he said perhaps. I wish you well in your decision and hope our experience has helped you with your decision. Mary

[Eileen9 in reply to lmbanni]

Yes, the DBS surgeon did tell me that DBS can cause speech problems. He was surprised as to how quickly my speech deteriorated as soon as I was put back on Sinemet. He thought with surgery I might need less medication and then my speech would come back.

[silvestrov]

Mucuna pruriens is a better alternative to Sinemet/L-dopa. Unlike Sinemet, MP is not tachylhylactic, meaning it does not stop working. The main drug for PD does not work and this is why patients have dyskinesias and disease progression. Dyskinesias are not a symptom of the disease but of the drug therapy.

jnnp.bmj.com/content/75/12/...

Mucuna pruriens has been shown to ameliorate dyskinesias in non-human primate trials in which animals were induced parkinsonism with chemicals and then treated with Sinemet and then MP.

ncbi.nlm.nih.gov/pmc/articl...

Mucuna pruriens is both neuroprotective and has neurorescue properties:

ncbi.nlm.nih.gov/pubmed/180...

"Velvet bean is now being considered as an alternative to the pharmaceutical medication levodopa. In one case study it was given to a Parkinson's patient for 12 years instead of the pharmaceutical L-dopa medication. It was found to slow the progression of Parkinson's symptoms (such as tremors, rigidity, slurring, drooling, and balance), and to have none of the side-effects of the current pharmaceutical L-dopa." :

rain-tree.com/velvetbean.ht...

PD patients who take Zandopa:

blog.parkinsonsrecovery.com...

[Hikoi in reply to silvestrov]

Silvestrov

I'm interested in following your experience of mucuna. I have known others to use it but give up after a while.

I do however wonder about some of the claims you make, i suspect with long term use mucuna will cause dyskenesia and the neuro protective qualities have so far only been proven in rats. The 2005 raintree link makes claims but I cant see any proof. I'm not meaning to be entirely negative as I think mucuna has potential.

[silvestrov in reply to Hikoi]

There is only 1 way for you to know if it works and is to try it. Here are some other links (the first one is HP 200/Zandopa):

jnnp.bmj.com/content/75/12/...

This is the drug referred to in the above study:

google.com/patents/US7470441

It has other health benefits - anti-cancer properties, it is used as a sexual stimulant in India because it inhibits the production of the hormone prolactin, it has antimicrobial properties.

About my experience? My father has PD and when I manifested symptoms I treated it completely by reading scientific studies and taking the appropriate minerals/vitamins/amino acids/herbs. After watching my father's experience I am convinced Parkinson's progresses because the therapy is not any good. L-dopa/Sinemet is tachyphylactic - it stops working (as does Amantadine, anti-cholinergics, dopamine agonists are dangerous, Comtom/entacapone has side effects on my father...as did dopamine agonists. My father just sat there and was sick and lost 10 pounds. As an anti-model for doctor proscribed Parkinson's therapy is it any wonder I 'went off the reservation' and found alternative therapies?

Also, previously to having an Parkinson's, I had an adrenal condition, in which regular doctors only wanted to either put me on anti-depressants or hormones for the rest of my life. (Hormonal imbalance is common for adrenal conditions.) So I found a doctor who practices orthomolecular medicine - using vitamins, minerals, amino acids and he cured the disease. I used his methodology and successfully treated Parkinson's - I have no physical impairments and wait tables for a living at the age of 53 (I am an artist).

The problem with only using 1 dietary supplement, mucuna pruriens, is when you combine antioxidants together the work more powerfully and with great synergy. The complete list of antioxidants/vitamins/minerals/herbs and amino acids is a follows:

Mucuna pruriens

tyrosine

alpha lipoic acid

acety l carnitine

resveratrol

2 forms of magnesium: Mg chloride, Mg l threonate

thiamine - B1

riboflavin - B2

NADH - a form of B3

methyltetrahyrdofolate - Folate, B9

methylcobalamin - B12

piperine

DHA & EPA omega 3

flax seed oil

selenium

iodine

For rest: theanine & melatonin

Vitamin D

Vitamin C

Coconut oil

Raspberry keytones

The reason why mucuna pruriens works for me is that I do not take it in isolation. Its properties are reinforced by the above supplements.

Old school medicine - I take my vitamins.

[metacognito in reply to silvestrov]

No offense meant Silvestrov, but sometimes people having family members with certain afflictions may understandably become hypersensitive to hints of similar symptoms among themselves. Also, certain adrenal and/or thyroid disorders display symptoms strikingly similar to those experienced by people with Parkinson's. Please confirm whether or not you were FORMERLY diagnosed with PD prior to treating it "completely" with no more "physical impairments" whatsoever. Thanks for your input here.

[silvestrov in reply to metacognito]

No offense taken. I had my cortisol levels tested using a saliva test and they were shown to be low and hence was I hormonally imbalanced as a result of an under active adrenal gland. Which means I had an imbalance of potassium and sodium in my body thus causing low to mid grade depression, difficulty going to sleep in the evening and difficulty waking in the morning (with accompanying brain fog); I also had orthostatichypotension - my blood pressure dropped upon standing. My body crashed in the afternoon and I had to take a nap. Allergy like symptoms, body temperature changes, heart palpitations.......and all were relieved when I found help from the following doctor:

drlam.com/index.php

amazon.com/Adrenal-Fatigue-...

A regular doctor gave me a blood test to look for any problems and did not find any and sent me to a shrink. Measuring cortisol with a normal blood test just states I have cortisol in the blood and does not show the levels of cortisol. If cortisol were absent I would have Addison's disease - the organic death of my adrenal gland, which I did not have.

Dr. Lam's therapy ended after 13 months and I was retested and shown to have the proper cortisol levels

(ranging from 6 am to 12 pm).

About 1 year later I had the following (different) symptoms:

my back became incredibly stiff

I had ED, which I never had before

my sleep was restless

I lost my sense of smell

my neck was very weak and I had difficulty holding up my head

the right side of my body seemed to be affected with twitching - particularly my right hand and right eye

(and the left side was unaffected)

my chest had horrible tremors and I could watch the fasciculations - muscle twitching visible to the eye

constipation

mental confusion

depression

Does not sound like an adrenal disorder to me. Being too close to the trees to see the forest I did not know what was happening. Since I was depressed I swallowed a 500mg capsule of tyrosine and whalah!,

the next morning I felt much better, though I could see the tyrosine was not going to give me enough support and thus, about 2 weeks later, I started trolling the internet for alternative therapies for PD.

I previously became occasionally depressed with adrenal disorder and had a bottle of tyrosine in my cabinet and thus made the accidental discovery. Tyrosine is good for the adrenal gland. And seeing how bad my father's therapy was I decided an alternative route was the best one to go.

My father responded poorly to entacapone, dopamine agonists and had a mediocre response to Sinemet (as if there is any other type of response to a drug that stops working). Why would I want to do this? Einstein defined insanity as doing the same thing over and over and expecting a different result.

Chronologically and symptomatically, I had 2 different physical conditions.

[Hikoi in reply to silvestrov]

So just to clarify, metacognito asked if you had been formally diagnosed, from your answer i take it you diagnosed yourself and have not had a medical person diagnose you. Correct?

[silvestrov in reply to Hikoi]

Yes this is correct. And after researching scientifically tested supplements against Parkinson's, which will not be used by your doctor because they will not come from a drug company, I am functional. I also used abstracts like the

following from NeuroResearch who brought a man back from the option of deep brain stimulation using dietary supplements:

ncbi.nlm.nih.gov/pmc/articl...

An additional nutrient they use to maximize levodopa and tyrosine is tryptophan:

ncbi.nlm.nih.gov/pubmed/274...

The information to treat PD is all out there online.

The following video is by a man who was treated with the NeuroResearch therapy:

marsvenus.com/blog/john-gra...

[soup]

I agree that you should go for a second opinion. Perhaps a DaT Scan if one is available. If you do decide to go down the DBS route it would be essential to know which sites for placement of the electrodes are on offer and to look at the literature about each. different sites have different outcomes but in all your research you must be led by your own judgement when balancing the probabilities of improvements in some symptoms and quality of life against that of surgical difficulties and no change or worsening of other symptoms.

Only you can decide. How many times have we heard that Parkinson's is different for each individual? So too are the treatments.

[Hidden]

Ultrasound surgery for PwP

insightec.com/Parkinson_Dis...

healthsystem.virginia.edu/f...

on.ted.com/a01aj

ted.com/talks/yoav_medan_ul...

[Landstuhl]

I am fortunte to say dps works for dystonia cervical tegion and mandibular i had the surgery in apr already seeing results.