Medication and DBS: Hi all. My husband... - Parkinson's Movement

Parkinson's Movement

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Medication and DBS

Parsa
Parsa

Hi all. My husband diagnosed with PD two years ago (almost). He refused to take any medication. It seems PD had some progress. I have a feeling he is now thinking about treatment or medication. He asked me how long usually takes to be on medication before going for DBS. (He is 44years old)

Do you guys know how many years normally people live on medication before needing a surgery?

Thanks guys , I hope they find the cure soon.

85 Replies
oldestnewest

The Hospitals have a set of requirements that need to be met. It is not like getting a haircut.

He must be at a point where basically there is nothing else that can be done. DBS has risk, side effects and dangers . He must be reasonably young and appear to be strong enough to survive it while desperately needing it. Many hospitals that have done the procedure ,no longer will do it. Maybe he does not understand that they drill a hole in the top of his head and insert a device in the area where the brain stem meets the spine. "Deep Brain Surgery"

I know of several people in good condition that were rejected and a couple that wish they had been.

The fact that he will not take the medication is for someone else to deal with. I just dont have the patience to address that any more. If that is his final decision then I suggest that dementia or cognitive problems be investigated.

Parsa
Parsa in reply to GymBag

May be I didn’t describe it well. We wanted to know usually how long medications works. 2 years,8 years? How long does it take to need to do such a surgery. He actually doesn’t like to even take medication but it is getting harder for him to work these days.

Hidden
Hidden in reply to Parsa

From 3 (i have heard of 3, maybe someone has had it sooner) to ~15 years, with the average being somewhere between the two. Plenty of young onset patients getting DBS 5 to 8 years post dx these days.

Parsa
Parsa in reply to Hidden

Thanks 🙏

Routine100
Routine100 in reply to Hidden

PD appears to be different for each person. My wife refused to take meds after we were made aware how it can be counter productive. A simple google search will show what the side effects are for any drug. Supplements are not like drugs and can help to improve the situation. I have a routine that is very positive if you want I can send to you.

Vik38
Vik38 in reply to Routine100

I'd be very interested in your routine.

HKKin
HKKin in reply to Routine100

grateful if you send your supplement to me serpuikin@hotmail.com

Dear Routine- Please share your routine with me too. Thank you.

Please send me your routine at myrnacat50@yahoo.com

Parsa
Parsa in reply to Routine100

Please send it to me as well. Thanks

Routine100
Routine100 in reply to Parsa

Yes I have supplements that I have researched and my wife has a routine she takes daily to Increase Body’s dopamine biosynthesis

. The idea is to build up the body and to encourage the cells to heal the brain. I have read article written about the theory that the brain has the ability to learn how to overcome a great deal of PD symptoms.

I hope this helps and exercise is very important.

Be Well

I purchase my supplements from the link listed

pipingrock.com/?rwcode=ENW543

Routine 100

1. NADH-10 mg in the morning-1pill

2. Tyrosine 1000mg Daily---2 pills

3. Lysine 500mg Daily----------- 1 pill

4. Glutathione 100mg daily -------- 1-pill

5. Country Life full spectrum Amino Max or Wakunaga

Neuro Logic 2 pills daily as needed.

6. Crystal Star Relax Capsules 1-3 pills as needed

7. Omega 3 ---2 pills

8- lithium

Recommended to help for additional recovery

Depression DLPA -500 -750

Natures Secret Ultimate Oil

Creatine 3000mg

Gingko Biloba

EXCERISE INCREASE AS YOU FEEL STRONGER

Mayo clinic has a therapy program

Hyperbaric oxygen therapy has helped and is safe based on a study.

Mir-FUS insightech website

JayPwP
JayPwP in reply to Routine100

Please send it to me as well

Routine100
Routine100 in reply to JayPwP

Yes I have supplements that I have researched and my wife has a routine she takes daily to Increase Body’s dopamine biosynthesis

I purchase my supplements from the link listed

pipingrock.com

Routine 100

1. NADH-10 mg in the morning-1pill

2. Tyrosine 1000mg Daily---2 pills

3. Lysine 500mg Daily----------- 1 pill

4. Glutathione 100mg daily -------- 1-pill

5. Country Life full spectrum Amino Max or Wakunaga

Neuro Logic 2 pills daily as needed.

6. Crystal Star Relax Capsules 1-3 pills as needed

7. Omega 3 ---2 pills

8- lithium

Recommended to help for additional recovery

Depression DLPA -500 -750

Natures Secret Ultimate Oil

Creatine 3000mg

Gingko Biloba

EXCERISE INCREASE AS YOU FEEL STRONGER

Mayo clinic has a therapy program

Hyperbaric oxygen therapy has helped and is safe based on a study.

Mir-FUS insightech website

JayPwP
JayPwP in reply to Routine100

Thanks. Would be helpful if you could insert pill timings, and whether to be taken on empty stomach? Omega 3 & lithium at what strengths? Ginkgo studies have been helpful at 120 mg, how many at what strengths do you take?

Routine100
Routine100 in reply to JayPwP

The routine means all the pills in the morning and again around 4 in afternoon. The pills all have a recommended amount this where to start my wife takes pills before breakfast one time empty stomach one time not.

I suggest you start slow and see how it works for you . The goal is to build your cells and they will become your source for healing. I also recommend exercise because this will teach your brain what it has forgotten walking,indoor bike, treadmill slowly and keep trying to do more exercise.

I hope this helps be well

park_bear
park_bear in reply to Parsa

Think of levodopa as a supplement that replaces the missing dopamine. He should also check into high-dose thiamine.

Parsa
Parsa in reply to park_bear

He is taking 200mg of B1every day.

sue2000web
sue2000web in reply to Parsa

That doesn’t seem much. I have been taking 2000mg B1 for two years. 8 years since diagnosis. No symptoms once taking the B1

Parsa
Parsa in reply to sue2000web

Do you take meds?

sue2000web
sue2000web in reply to Parsa

Yes. 6 x 12.5 seminet, 1 x rasagiline, and 1 x rotigotine 4 mg patch. Since being on B1 have cut patch slowly down from 8mg to 4. Also take 1 x magnesium. I could maybe cut my simenet but am so well I don’t want to rock the boat. Have just started dr Mischley’s diet, but it’s too early to say what that is doing. I have been diagnosed 8 years, but people say since I started B1 that you would not know I had pd.

As he is still working without medication, it is most likely several years premature to be contemplating DBS. Cross that bridge when you get to it.

DBS is 1 of those procedures you will want to research thoroughly.

Parsa
Parsa in reply to MBAnderson

We are not thinking of DBS that early. You are right it is not an easy decision and have to do a proper research about it.

If you and he read recent posts you will see that he cant save levadoopa for use later, it dosnt work like that.

Parsa
Parsa in reply to Hikoi

Could you please explain more or refer me to a post? Thanks

Hikoi
Hikoi in reply to Parsa

pubmed.ncbi.nlm.nih.gov/250...

This link explains that it is not length of time on levadopa but progression of PD that interferes with drugs working. And it's not that the drugs don't work, they are just not as effective.

Parsa
Parsa in reply to Hikoi

Thanks for the link. I will read it through.

MBAnderson
MBAnderson in reply to Hikoi

Like everything else with Parkinson's, there are contradictory studies.

"Conclusion: Late levodopa administration was associated with a low risk of dyskinesia after adjusting for confounding effects and may be a reasonable strategy for prolonging the levodopa-induced dyskinesia-free period in Parkinson's disease."

(Not necessarily my position, just saying.)

pubmed.ncbi.nlm.nih.gov/300....

Hikoi
Hikoi in reply to MBAnderson

You are right MBA. Thanks for reference. There are varying view points. I’m afraid I am guided by the movement disorder specialists like Dr Okun and Dr Fahn. I am also aware that I have been on levadopa 13 years and only now can have a little dyskinesia. I think it a small price to pay for years of activity. And i know levadopa is a young onset curse (which i am not )

“The Kaplan-Meier analysis revealed that the risk of levodopa-induced dyskinesia after treatment initiation was similar between the groups. Once the levodopa-sparing group started levodopa supplementation, they had a higher risk of developing levodopa-induced dyskinesia.“

pubmed.ncbi.nlm.nih.gov/294...

MBAnderson
MBAnderson in reply to Hikoi

I totally agree. I just finished Okun's latest book.

How do you answer this question?

If, say, a person is destined to get dyskinesia after 10 years of 600 mg/day, would that person get dyskinesia later if they took 200 mg per day?

In other words, the sub-Saharan African study concludes it is not the duration but the dose. Accepting that, does that mean a person who takes a lower dose initially extends time before which they get dyskinesia?

You've made it all the way to 13 years without dyskinesia. I'm guessing that's, in part, because you been judicious in your use of levodopa??

laglag
laglag in reply to MBAnderson

An experience I had about 19 months ago leads me to believe it's dose that matters more. My reg Neuro was on maternity leave so I called another and he told the nurse he was too busy to see me so he told her to tell me to double up on my C/L. My symptoms had gotten a lot worse because I was going thru a lot of stress & anxiety with my dad's health. Well I went from 3-5 a day to 11- 16 because I started needing them at night & again doubled those. I started taking C/L about 10 yrs ago at 5 then my exercising got me down to 3. I didn't have dyskensia before the terrible "episode" but when I doubled up I got it really bad. So I now am down to 7/day.

Hikoi
Hikoi in reply to laglag

And laglag I think you say elsewhere that your dyskenesia is mild except when stressed and then it becom3s more noticable. Is that correct?

When you say dose matters more do you mean a high dose will lead to permanent dyskenesia or you can have dysk with a high dose but not necessarily with a low dose.

laglag
laglag in reply to Hikoi

Hikoi, that is correct, when I'm stressed or anxious the dyskensia gets worse. Occasionally it gets so bad that if I'm sitting my whole leg will fly up. That's usually when I'm not paying attention & I'm playing a game on my phone. I'm not clear on what your question is but I was commenting on MBA's comment about Saharan African study. Because I didn't have dyskensia before I double/tripiled dosing & I had it really bad after, then dosing may causing dyskensia more than duration? This is more of a discussion rather than a fact.

I still have dyskensia but it's been better after I reduced my dosage, which took more than 6 months, more than 1/2 of it in bedridden. I'm taking Gocovri now to help, but I don't believe I'll ever get rid of it. Does that answer your comments/question?

MBAnderson
MBAnderson in reply to laglag

Hi Debbie,

In response to your comment, "... then dosing may causing dyskensia more than duration?" Yes, the study says it is dose, not duration.

"... he told the nurse he was too busy to see me so he told her to tell me to double up on my C/L." Wow!! He must think he has superpowers prescribing a doubling of a dosage to a patient he has never met and knows nothing about.

Hikoi
Hikoi in reply to laglag

Thnkyou yes laglag. It sounds like the high dose induced dyskenesia which you were then stuck with tho able to control to some degree by lowering doses.

Hikoi
Hikoi in reply to MBAnderson

My answer would be an opinion not fact.

Honestly, I dont understand your worry. You are in your 70s aren't you? You chances of dyskinesia are slim. Guess we all have something we particularly focus on. P B’s is BP and agonists, mine is misinformation, Pepper is fast walking ....

laglag
laglag in reply to Hikoi

Also, I'm 63, don't speed my age up any faster than it's going! 😅

Hikoi
Hikoi in reply to laglag

Oh dear no Laglag! You are a mere sapling in this jungle.

I was responding to MBAnderson in that post. It shows on mine but perhaps it doesnt to anyone else

laglag
laglag in reply to Hikoi

Got it! Thanks!

MBAnderson
MBAnderson in reply to Hikoi

Your opinion is fine. That's what I was asking for.

Yes, I need something to worry about. Life would be too easy, otherwise. And mine is the consequences of unnecessary dosage of pharmaceuticals.

Apparently, we are all focusing on the right things for ourselves because we are not unhappy with our progression/health.

Hikoi
Hikoi in reply to MBAnderson

Personally i think this disease is a bummer..

It does interest me how many wives post and do all the work researching for their husbands, then make decisions for them. I wonder if it correlates with age, culture or ??

MBAnderson
MBAnderson in reply to Hikoi

Excellent point.

Women have a much higher capacity for relationship and empathy. The human race would not have gotten this far were not for maternal and care-giving instincts of women.

I think that they'd be doing their husband of huge favor by telling them to get off their butt and "read it yourself," because otherwise, it puts them in a position of having to nag him to do the right thing for himself.

MBAnderson
MBAnderson in reply to Hikoi

I find it ironical that I spent a lot of energy throughout my adult life (long distance running, amateur nutritionist) so that I 'd be energetic in my old age -- and now this.

Have him look into Mucuna while he prefers to avoid pharma meds.

No matter what, the best bet is to do whatever that allows moving around as much as possible (avoid sitting around that exacerbates oxidative stress), as exercising is known to slow the progression of PD. As park_bear mentioned, I"m a fan of B1 (thiamine) therapy - nothing to lose there and chances are it'll help especially if he had ever been a heavy drinker, diabetic, or blessed with a high IQ.

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

intechopen.com/books/parkin...

jamanetwork.com/journals/ja...

Parsa
Parsa in reply to rescuema

Thanks heaps. I will go through and will read it tonight.

MBAnderson
MBAnderson in reply to rescuema

"...high IQ?"

rescuema
rescuema in reply to MBAnderson

see here for the relevant discussion.

healthunlocked.com/parkinso....?

Hi Parsa. I was diagnosed at 46 and am now 63. This is what I know about your question(s) and things to think about and remember:

o This website is great. There are some really knowledge people on here. Most of them have had PD for several yrs. and know what helps them, these things could help you, or your husband or maybe they won't? So do some research yourself, but most times you should run it by the doctor. In these times it might take too long so use your best judgement.

o Every PD or PwP are different - not 2 are alike, sometimes called the "snowflake disease)

o He sounds like he could be in denial. It doesn't go away so it has to be accepted now or it will get worse. He needs to face it and do something about it. Being around others and/or talking to others with PD, like this site, will help a lot.

o I understand when your husband says he doesn't want to take meds. Most people here don't want to either, but with PD it's hard to get around it. I believe, especially for a young onset it's good to try some things like exercise, including walking, running, boxing biking, weights, eating the right foods, meditation and a few supplements. But there's not much, for most, that will help totally besides meds. Some things that I just mentioned might help to some degree and may slow the progression, but nothing will stop it. I believe if you want to do some of the things you need to be on meds and/or B1? for your body to move like it should.

o High intensity exercise is a MUST! The more you can push yourself the better and the sooner you/he start the better.

o Another thing to remember if you can get him to take meds, try to keep them at a minimum. He'll get more years out of them. I have been taking C/L for at least 10 yrs and I'm on 7/day along with 1 Azilect & 2 Gocovri. I do Rock Steady Boxing 3 times a week, take vitamin D3, Krill oil & Emergen C (has a lot of different vitamins & electrolytes).

o As far as DBS, 15 yrs ago I knew several people that had it done & probably 1/2 had complications, but now they've perfected it & some say it's the best thing they ever did.

Hope this helps some. I'm probably approaching stage 3 of PD after 17 years. There are still a few people that don't realize I have Parkinson's but it's because of a little dyskensia when I'm nervous.

Keep fighting!

jeeves19
jeeves19 in reply to laglag

Lovely post Debbie

Parsa
Parsa in reply to laglag

I do not know how thank you all for your posts. Specially you. I read it and I felt that you already know my husband. 🙏

Hi Parsa! My husband has been on medication for 13 yrs. He’s just been assessed for DBS and was told that he is a good candidate. We just received the booklet detailing everything you need to know about the procedure. The process seemed scary. Anyway, here are the symptoms that they are looking for to get accepted for the procedure according to the handbook: tremor-uncontrolled, rhythmic shaking of the arms, legs, face or head; rigidity-stiff or inflexible joints in the arms and legs; slow movements; dyskenesia-uncontrolled, irregular, writhing movement; motor fluctuations-frequent or sudden “off” periods when medication does not control your movements symptoms.

Also, according to the book, the patients that benefit the most from DBS are those which: have symptoms for at least 5 yrs; have “on/off” fluctuations; have a good response to PD medications, especially carbidopa/levodopa; have tried other PD medications without beneficial or sufficient results; have PD symptoms that interfere significantly with their daily activities.

I hope this helps, good luck!

Parsa
Parsa in reply to pdwife41yrs

Good luck with everything and thanks for sharing this with me

There is a third alternative to Medication and Surgery!

I have had Pd symptoms since 1963 and was diagnosed with Pd in 1992, when I had to give up my high-powered job.

Since then I have reversed my Pd symptoms and have been living a 'Normal' life since 2002.

It did not cost me much to achieve this, only having to do fast walking every second day for one hour.

Why not find out more about this before making your decision.

I get nothing out of passing this information on to you!

Parsa
Parsa in reply to JohnPepper

Thanks John. I saw your videos on YouTube actually. We are in Australia. Do you have any plan to have a seminar here. If I am right you had a seminar few years back here.

JohnPepper
JohnPepper in reply to Parsa

Hi Parsa. Im would love to come back to Oz again but I am getting too old to travel such long distances.

You are welcome to Zoom me and maybe I can help you, face to face?

Parsa
Parsa in reply to JohnPepper

Thanks for the offer. I will talk to him. 🙏

JohnPepper
JohnPepper in reply to Parsa

Good Luck!

hello the cure you have to be optimistic but it is better that I wait for her sitting down and I'm sitting down

I was the same and wouldn't take meds until my doctor said it was time at about 2 years after diagnosis. I'm almost 8 years in now and I have difficulty in the morning, I take 4 doses daily that keep me moving at home and work. I exercise 5-7 days/week 30-45 minutes. From all the reading and listening to others no-one knows. Hopefully the medication will continue to help and keep getting better.

I was on heavy meds (3-25/250 4 times a day) for about 4 years before I had the DBS. I'm still taking 3-25/100 3 times a day after the surgery. It all depends on the individual. I'm still glad I had the surgery. It helps things that the meds didn't. I still have trouble walking when I'm off my meds though. The surgery doesn't solve all the problems but it does make things better.

Somic67
Somic67 in reply to BellaBeau201

do you mean you were taking 3 tablets of L/C at 250/25 ratio 4 times per day?

That is 3000 mg of Levodopa and 300 mg of Carbidopa per day.

It is the highest amount I've seen.

How was it working that therapy for you?

Each person's experience is different. I am 73. Diagnosed at age 61. Here's what's worked for me. Exercise 1 - 2 hours a day. Intense workouts 3 - 4 days per week (biking, hiking hilly terrain, cross country skiing) preceded by a small amount of medical marijuana. Healthy diet and PMA - positive mental attitude and part-time work. I have been using Sinemet and now Rytary (3 195 MG 3 X day) along with 1 - 3 regular Sinemet to deal with off times and extend Rytary. My original issue is the same issue today - right hand/arm tremor. Plus, slight dyskinesia. I am considering DBS because of long term use of carbidopa levodopa use. But, will most likely will continue what I am doing. The key element of any approach to controlling the effects of parky is exercise. PMA, a healthy diet and mental acuity will follow. Good luck!

Hi Parsa. I was just thinking that it felt really uncomfortable that he was having YOU doing all this research that HE needs to do for himself, personally, (as do you too of course, but not as his substitute) and then I saw what laglag said, in line with my antenna.

This looking into DBS is way too premature, unless he knows that he-ll decay in a very short time. DBS in any case is likely to be obsolete by the time he might need it, due to the high risk of permanent serious side effects and inability to predict who will get them, and being that the procedure itself is irreversible or imposes more side effects and precludes pallidotomy ablation by focused ultrasound.

Smells like misplaced emotional investment that seems to render the most drastic late stage treatments emotionally equivalent to minimal or nearly symptom-free medication-free early-stage disease phase. Normally such concern with DBS at this very early time is only reasonable or appropriate if he already has good reason ksuch as a neurologist as just told him so or he has three or four direct linear ancestors who have demonstrated the same thing in their lives) to think he is on a fast moving precipice of either a very rapid progressive disease or later stage matters a decade or two out, but most definitely should not be thinking about now.

So what laglag is suspicious about, I share. It's really very very new into his psyche at this point. Very early yet. First things first really is a better guide to looking into things.

He should schedule a plain old counseling visit with a neurologist for a half hour or more, which you attend, to be followed by a private hour or two with a psychologist or psychiatrist to get acquainted with the whole idea of PD. Then he should embark upon his homework with you together or on his own, whatever, and then you discuss it together. Then see where it takes you.

Hidden
Hidden in reply to MarionP

Pretty big call to say that DBS will be obsolete by the time a currently 2year PWP might need it. The landscape would have to change pretty quickly.

MarionP
MarionP in reply to Hidden

Perhaps so. I'm thinking 5-20 years, plus the high (my view, even if you don't share it) the uncomfortably high risk/reward "ratio" compared to similar, what I think is a fairly drastic, stage of alternatives. PDD/FUS seems a big leap forward from DBS already, and if you get DBS, you are disqualified from ever having PDD. Big risk in my view, the success reports, and side effect profile of PDD-FUS looks much more benign to me.

Put it this way... If you and I were discussing us both getting DBS, I think I would suggest "You first."

My opinion is avoid meds as long as he can (it is possible). They are highly addictive drugs and give withdrawal syndrome and neuroleptic malignant (letal) syndrome

There are suspects (dr Hinz) that they can ever esacerbate symptoms and be the real cause of dyscinesia and dystonia.

There are other solutions to try before going to std PD meds

High intensive training is a must. Do fast walking (with him ;) ) as JohnPepper wrote

It seems that some very determined and lucky persons were able to heal the PD

Look at this site fightingparkinsonsdrugfree.... (reversed PD in 9 months form Diagnosys)

or this book

amazon.com/Fighting-Parkins...

look at this site for the extraordinary story of the PD Recovery Team and Janice Hadlock

pdrecovery.org

Read this page for a short insite of the PD medicatios (by J. Hadlock)

pdrecovery.org/once-upon-a-...

Give a look to this book to know all the untold side effects of PD Meds

(This book is an in-depth look at Parkinson’s disease medications and the brain chemistry of Parkinson’s.)

pdrecovery.org/wp-content/u...

In this book (by J. Hadlock) the story and the way to heal PD supported by the author

pdrecovery.org/wp-content/u...

Hera you can find all my suggestions. Not necessary to do all of them but those you prefer and take time to experiment

SUPPLEMENTS:

my best candidate are:

- Gluthatione IM (the most important anti-oxidant of the brain also detox and increases neurons' response to dopamine)

- high doses of vit C (necessary to the body to create dopamine from tyrosine)

- vit B6 (as much as effective, taking into account that currently for high dosage P5P form is recommended)

- vit B1 as per Costantini protocol. It is claimed by many as stopping the disease and recover in part.

- vit B12 (may be in a good multi B complex)

- heal the gut and recover nutrients and energy: gut is linked with brain and a dysbiosis creates shortage of nutrients (tyrosina and tryptophan) that can cause shortage of dopamina (poor mobility) and serotonina (poor relax/sleep)

- a promising supplement is Serplus complex, a good source of alfa-lattoalbumina, that is able to increse the blood levels of tryptophan and heal the gut with the proper diet

if you will go for PD meds L/C remember to add from day one its antagonist 5-HTP, Tryptophan

and vit B6 to avoid shortage induced by Levodopa

- vit D and K2 magnesium and potassium (as minimum)

- Mannitol is worth a try

- CoQ10 anti-oxidant

- Mucuna is a natural souce of levodopa but it is also full of anti-oxidants and other benficial elements. It must be taken at very low dosage and increased slowly every 2 or 3 months until effective. Then reduce by half of last increase to stabilise therapy. In this way dose of levodopa is very minimal and close at what really required and this initial dosage can last for rest if his life without change nor side effects. Given at the same dosage of common PD meds (100/200mg of LD per dose) gives nausea an vomit (the body tries to defend itself from the poisoning LD) and the same issues in the long term.

Note that common PD meds are overdosed of levodopa to give immediate results but this is not the correcct way to go. Brain chemistry is very delicate and must be changed slowly. Levodopa reaches the various regions of the brain at differet speeds and quantities. Specifically it reaches first those areas where it is not needed. It take more time (weeks or months) to reach the deep brain where it is really missing and when it arrives there is a inertia in the supply that can not be stopped overnight. This is the reason of the small increases and 2 to 3 months between them.

Ashwagandha: mucuna is more effective with ashwagandha (or withania sumnifera - a MAO Inibitor) to help the autonomous system and CBD oil for sleep and stress control

HERBS:

this are all natural MAO Inibitor (as the med selegiline - Deprenyl) to increase naurally dopamine in the brain

- curcumina (with butter), green tea, cacao powder, Rhodiola (COMT inibitor)

DIETARY:

- avoid carboidrates and increase liver, cucumbers, fish, coconout oil, extra virgin olive oil (for oleuropeina and hydroxytyrosol) butter (for butirric acid), bone brooth and Resistant Starch

- Periodic fasting (from 16 hours once a week to 7 days every 6 months, as he can) for general clean up, liver and body detox (also heavy metals) and cell autophagy and relevant regeneration

GYM:

- fast walking for neuro support, lymphatic system, and GH and BDGF increase.

- jumper and sauna to detox (great benefit for lymphatic system that is the way the brain detox during sleep - so if clogged up it will be

- EWOT = Exercise With Oxigen Therapy. A new frontier solution: bicycling or walking on treadmill with an Oxigen concentrator (see ewot.com/)

This i what i would have liked to be told when I tryed the natural way at the beginning of my PD before switching to common PD meds and entering the tunnel.

MEDS (yes, I know, i should not ;) ):

- selegilina (a MAO-inibitor)

- LDN = Low Dose Naldrexone: it is a drug claimed to be safe and have potet anti-inflammatory effects (inflammation is the base of every disease) drug; it blocks cell receptors for a few hours simulating an endorphine shortage an stimulating the body to compensate. The result (at low dose only) is an increase of endophines in the body that stimulate repair and healing, sleep and wellness for 18/20 hours).

see this book amazon.it/LDN-Parkinsons-Di...

or this site ldnscience.org/

If he goes natural he can't harm his body in an unrecoverable way, while with meds ...

if you read the last book of the first list (parkinson recovery) you will see that, going natural feeling worst doesn't mean to get worst. recovery is an hard job for the body. body and brain structures have to be removed (destroyed - autophagy) to be rebuilt and a temporary worstening of symptoms and energy can happend (see also first link - fightparkinsondrugfree ).

hope this helps.

GioCas
GioCas in reply to Somic67

Somic

Congratulations on the very comprehensive and complete report of references, I would have liked to read one at the time of my diagnosis for the hope that it transmits.

Instead I only read a study by Dr. Costantini, then my doctor prescribed me thiamine by injection I.m. and from the very first I felt looser and more energetic without ldopa, the latter being added later by Costantini. That was enough for five years to keep the physical condition stable. This is my personal experience, simple and effective how I like.

anyway congratulations, very interesting thanks Somic

Gio

Parsa
Parsa in reply to Somic67

Thanks heaps Somic67 for the effort you put in to write this for me.

Parsa
Parsa in reply to Somic67

Re dietary, did you mean to avoid butter?

Somic67
Somic67 in reply to Parsa

i've corrected the sentence to make it more clear.

now it is:

"... increase liver, cucumbers, fish, coconout oil, extra virgin olive oil (for oleuropeina and hydroxytyrosol) butter (for butirric acid), bone brooth and Resistant Starch"

Somic67
Somic67 in reply to Parsa

Parsa Hi, it's me again ... :)

Since your husband is still unmedicated, he may have more chances with this indian doctor and medicine. Give a look to this site

drpaneri.com/

I 2015 Therapy offered was supplemental pills to take daily shipped by himself. cost in 2015 was 250 or 300 euro/month (sorry for bad precision due to bad memory ;) )

contacts:

drpaneri.com/contact.html

Never tryed but recursively i think about it. I've spent thousands of euro in visits, supplements and meds that I could have given it more than a try... :)

My opinion is avoid meds as long as he can (it is possible). They are highly addictive drugs and bring risk of withdrawal syndrome and neuroleptic malignant (letal) syndrome (References available on demand and in a comment of mine to another post on “Is levodopa neuroprotective”)

There are suspects (dr Hinz) that they can ever esacerbate symptoms and be the real cause of dyscinesia and dystonia and other PD not uncommon complications.

There are other solutions to try before going to std PD meds

High intensive training is a must. Do fast walking (with him ;) ) as JohnPepper wrote

It seems that some very determined and lucky persons were able to heal the PD

Look at this site fightingparkinsonsdrugfree.... (reversed PD in 9 months form Diagnosys)

or this book

amazon.com/Fighting-Parkins...

look at this site for the extraordinary story of the PD Recovery Team and Janice Hadlock who also had and healed from PD.

pdrecovery.org

Read this page for a short insite of the PD medicatios (by J. Hadlock)

pdrecovery.org/once-upon-a-...

Give a look to this book to know all the untold side effects of PD Meds

(This book is an in-depth look at Parkinson’s disease medications and the brain chemistry of Parkinson’s.)

pdrecovery.org/wp-content/u...

In this book (by J. Hadlock) the story and the way to heal PD supported by the author

pdrecovery.org/wp-content/u...

Hera you can find all my suggestions. Not necessary to do all of them but those you prefer and take time to experiment

SUPPLEMENTS:

my best candidate are:

- Gluthatione IM (the most important anti-oxidant of the brain also detox and increases neurons' response to dopamine)

- high doses of vit C (necessary to the body to create dopamine from tyrosine)

- vit B6 (as much as effective, taking into account that currently for high dosage P5P form is reccommended)

- vit B1 as per Costantini protocol. It is claimed by many as stopping the disease and recovey in part.

- vit B12 (may be in a good multi B complex)

- heal the gut and recover nutrients and energy: gut is linked with brain and a dysbiosis creates shortage of nutrients (tyrosina and tryptophan) that can cause shortage of dopamina (poor mobility) and serotonina (poor relax/sleep)

- a promising supplement is Serplus complex, a good source of alfa-lattoalbumina, that is able to increse the blood levels of tryptophan and heal the gut with the proper diet

if you will go for PD meds L/C remember to add from day one its antagonist 5-HTP, Tryptophan

and vit B6 to avoid shortage induced by Levodopa

- vit D and K2 magnesium and potassium (as minimum)

- Mannitol is worth a try

- CoQ10 anti-oxidant

- Mucuna is a natural souce of levodopa. must be taken at very low dosage and increased slowly every 2 or 3 months until effective. Then reduce by half of last increase to stabilise therapy. In this way dose of levodopa is very minimal and close at what really required and this initial dosage can last for rest if his life without change nor side effects. Given at the same dosage of common PD meds (100/200mg of LD per dose) gives nausea an vomit (the body tries to defend itself from the poisoning LD) and the same issues in the long term.

Note that common PD meds are overdosed of levodopa to give immediate results but this is not the correcct way to go. Brain chemistry is very delicate and must be changed slowly. Levodopa reaches the various regions of the brain at differet speeds and quantities. Specifically it reaches first those areas where it is not needed. It take more time (weeks or months) to reach the deep brain where it is really missing and when it arrives there is a inertia in the supply that can not be stopped overnight. This is the reason of the small increases and 2 to 3 months between them.

Ashwagandha: mucuna is more effective with ashwagandha (or withania sumnifera - a MAO Inibitor) to help the autonomous system and CBD oil for sleep and stress control

HERBS:

this are all natural MAO Inibitor (as the med selegiline - Deprenyl) to increase naurally dopamine in the brain

- curcumina (with butter), green tea, cacao powder, Rhodiola (COMT inibitor)

DIETARY:

- avoid carboidrates and increase liver, cucumbers, fish, extra virgin olive oil (see oleuropeina and hydrossi-tyrosol) coconout oil, butter, bone brooth and Resistant Starch

- Periodic fasting (from 16 hours once a week to 7 days every 6 months, as he can) for general clean up, liver and body detox (also heavy metals) and cell autophagy and relevant regeneration

GYM:

- fast walking for neuro support, lymphatic system, and GH and BDGF increase.

- jumper and sauna to detox (great benefit for lymphatic system that is the way the brain detox during sleep - so if clogged up it will be

- EWOT = Exercise With Oxigen Therapy. A new frontier solution: bicycling or walking on treadmill with an Oxigen concentrator (see ewot.com/)

This i what i would have liked to be told when I tryed the natural way at the beginning of my PD before switching to common PD meds and entering the tunnel.

If he goes natural he can't harm his body in an unrecoverable way, while with meds ...

if you read the last book of the above list you will see that, going natural feeling worst doesn't mean to get worst. recovery is an hard job for the body. body and brain structures have to be removed (destroyed - autophagy) to be rebuilt and a temporary worstening of symptoms and energy can happend (see also first link).

hope this helps.

Parsa
Parsa in reply to Somic67

He is not taking meds for two reasons one is same as what you mentioned and the other is the acceptance of the problem. I don’t know the second one is good thing or bad

Parsa
Parsa in reply to Somic67

Thanks for the effort , I will go thru them. Lots of homework

You should use medication and surgery as a last resort. Mucuna Puriens is a natural source of l-dopa that has other health benefits without the side effects of the synthetic l-dopas which usually work for about 5 years when side effects start happening. Seek a functional doctor who can check for heavy metals and guide you to eating healthy and recommend the supplements your body needs to heal. It is all the toxins in our world that are compromising our immune systems and making us susceptible these diseases. Even toxins we don't see like EMFs. You should both avoid all wireless, like WiFi and use your cellphones on speaker mode and away from your body. (be sure you don't have a "Smart" digital electric meter on your house. I mention this because my husband was over exposed to by the "Smart" meter and WiFi and now has PD) Seek alternative medicine to build up your immune systems. Scientists now know that we can change our brains so don't give up. What I have constantly heard from those who have succeeded in stopping or even reversing PD is that walking regularly really had made the biggest difference. If you can do your walking our in nature. Also my husband recently started using Vielight photomodulation therapy. We found the info on this blog. the Vielight company offers their Vielight X-Plus for around $700 with a 6 month trial at which time you can return it if not satisfied and get 80% back. Check their website. You can use this code, healing 4 me, to get a discount. Google "Light Therapy-Intranasal & Transcranial for different conditions" on youtube by Truly Heal.

Parsa
Parsa in reply to Trailing

How can I search for such a doctor? I know someone in Germany and we had an appointment to go there in April however with this vocid19 everything is cancelled.

I really appreciate and thank you all for taking your time and writing these posts for me. I talked him. Lots of material now to read through. 🙏🙏🙏

You will note the great divergence in advise , and I believe this may be caused by:

1/ there is a very large difference in what is experienced by people with PD in the type of symptoms and severity, and time of onset of each symptom.

2/ I found that the PD at the beginning for the first 10 years gradually got worse at a fairly constant rate. However, one day I had a very bad day that did not improve , and became a new normal and that these very bad days increased in frequency and severity and things went downhill very fast as the rate of frequency increased. People who have not experienced that tend to give different advise.

There is much work and research being done on many levels and by the time your husband needs DBS, if ever, there may be many other options far less dangerous. No one mentions the death rate or the incidence of brain damage as result of DBS.

GioCas
GioCas in reply to GymBag

I agree,

Especially those who sell DBS, and do marketing operations with it, because it is an expensive surgery, let's face it, and those who know about it see good business with it.

Parsa
Parsa in reply to GymBag

I agree.

i've realized now that my long comment comencing with "my personal opinion" is duplicated and the two versions are slightly different. I'm sorry for this caused by trying to write looking in an orifice (small phone) with unstable network connection. Since they both have comments, i'll leave them both not to cancel them.

Parsa
Parsa in reply to Somic67

No worries at all.

I saw that a year ago you wrote that your husband had a strong tremor in all body could you explain it better ?I can ask you if he solved this and how?

Parsa
Parsa in reply to GioCas

You are right. Good memory you have. The tremor come and goes but i think he is getting used to it. The worst thing is he cannot type that much these days. He started taking B1 but not a high dose.

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