I wanted to take a few minutes to share my story. So many people here have been so generous sharing what has helped them and answering questions for me. For that, I am truly grateful.
My story – my husband was first diagnosis in August, 2018. Age 55. Started with a tremor in his hand/arm. This past year has been a challenge, I began this journey convinced that I could stop and reverse this disease. Now, however my hope is slow this progression. I can only do this with the help of all of you. I am constantly reading new and old posts to help me in my research.I have no idea if what we are doing is helping since I suppose he is in the “honeymoon” stage.
We (and when I say “we” - I mean him, it’s his disease – but we are in it together). We have not started any pharm drugs (yet.. We have moved to an all organic, non-processed eating lifestyle – heavy on healthy fats. He is currently seeing a neuropath for IV Glutathione and heavy metal detox (since January, 2019) stopping soon. Heavy metal test showed very high mercury, copper, and a few others. Supplements are endless so he’s not consistent every day but this is what he takes: (hard to judge what dosages he takes as it seems to change daily)
HDT B1 Thiamine, Mannitol (in coffee), Coconut oil (in coffee, sometimes just a teaspoon here or there), B complex Tumeric/cucurmin (I purchase brands w/black pepper in ingredients) , Omega (I try to get a krill or small fish oil), Vitamin D w/K (I buy a D that has K in it), Vitamin C , Probiotic (I try to change these up and eat yogurt, drink kombucha) ,Restore Gold (this is 12 pills/daily, He usually does aobut 6-8), Zinc, Mucuna, Ashwagandha, Magnesium (just purchased the Mag L- Threonate, Reverstrol, GABA (my husband is the one who wants to take this as he read about it/ me not so much), CoQ10, Creatine (our newest supplement)
It’s only been a year but I don’t think there has been any progression. Except perhaps the toe dystonia, it got really bad - we just tried Dysport (Botox), and as a result, it’s a little better - I think - walking is a little better, but sadly he still cannot run. A part of me thinks if he could just run, he would get better. Interesting to me that this disease hit him after he stopped running due toe surgery. Was he warding off the disease ? Was it a trigger to the disease?
Still has a tremor (that he tries to hide) but rigidity is better. Tremor very bad sometimes.
He has also done a couple of weeks of food grade Diatomaceous earth. Small dosage like ½ teaspoon. It’s supposed to help rid the body of viruses.
Drinking alcohol helps his tremor as does cigar smoking… I can see why people self-medicate. Does drinking alcohol help any of you with tremors? Or anything else?
We are trying to decide which pharma drug he will start to take as the dystonia and tremor are pretty bad. We will continue to research.
I think the hardest part is outside a very small group of people, we have not shared his diagnosis. So…. He works hard to hide that tremor. I feel like that must be so exhausting but I am sure you all know that better than me.
Thanks for reading and letting me share my journey. And most of all, thank you for sharing your journey and your wisdom.
Happy Thanksgiving. Amy
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Ref - running , my husband was a marathon runner but foot cramping meant her had to stop , after Parkinsons was diagnosed he wasn’t medicated for a couple of years , when he started on medication he got back into running again , now is very fit ( golf , gym , running) only able to do this because of the medication 😀
I am also 55 diagnosed may 2016. I take madapor and azilect as well as mannitol, NAC, PEA and Mg. Have kept my condition hidden from work, kids and tennis club. Wish I’d just told my kids in the beginning- there is never a good time - but happy to hide it from everyone else.
My progression is so far slow but definite and my nights are full of crazy active dreams. Melatonin helps.
I completely agree. There is never gonna be a good time to share. We did tell our kids from the beginning (I insisted) I told them not to worry that I was gonna “fix him”. I also reassured my youngest that this will NOT kill him and that I’m sure there will be a cure soon. He has not however told his siblings or mom because it was not a good time ... unfortunately, there will never be a good time.
You gave a lot of information there and that is a lot of supplements he is taking! Some members report that the right dose of C/L can help with symptoms and which symptoms seems to vary significantly from person to person. Dr. Costantini always said that he got his best results of tremor and other motor symptom control by using C/L with B-1 after optimizing both doses to the patient. It apparently is similar with mucuna and B-1.
I didn't see mag oil (MO) on your list, but it can be helpful for pain and cramps as well as stiff or tight muscles. Just spray it on and rub it in. There is a homeopathic form that is said to feel much nicer on the skin than regular MO, but it comes at a price premium over regular MO. It can be mildly helpful for mild dystonia or mild dyskinesia, but again this varies from person to person, but I have not seen anyone report that it can temporarily do more than that. For the purpose of testing to see if MO is helpful or not, it will be inexpensive to try regular MO first and then if you find it helpful you can get the homeopathic form to make it nicer on the skin. Here is a link to a basic MO for around $10:
Howard Shifke has a couple of simple and easy exercises that are supposed to help with tremor as well as other symptoms and I have a feeling that applying MO to the shoulders before doing those exercises may be helpful. Enter his name on a youtube search and several of his exercise videos will come up. I am only recommending his simple exercise videos as I do not know enough about his other videos to comment on them. Here is a link to those videos:
Vitamin D is more important in PD than most people realize, but getting your 25 OH d serum level into the upper half of the reference range is more important than just taking a random dose because everyone responds differently to a given dose. Here is a link to a post that I wrote specifically about the importance of vitamin D in PD:
I know it sounds too simple, but good posture is very important and can improve certain PD symptoms! Here is a link to a post I wrote about posture and its importance in ameliorating certain PD symptoms :
I understand your husband's compulsion to drinking, but this is one of the WORST things he can possibly do to slow the progression. Drinking alcohol or diuretics of any kinds (including lot of coffee and tea) means you're depleting thiamine along with valuable vitamins and minerals. If he hasn't stopped sugar, then that's another item to be reduced or lowered (especially while on high fat = AGEs), because high carb/sugar= thiamine depletion. Having a glass of organic wine may be ok with meal once in a while, but any more than that means sabotaging your effort.
If he can walk, please have him try the hardest to fast walk. Running is not necessary, bad for joints, and inferior overall to fast/power walking. Walking or exercising once a day and calling it done isn't enough. You must avoid being sedentary and remind yourself to move around every 20-30 minutes or so. Mini rebounder trampoline with handle bar could be helpful - it'll help the lymphatic system and more than make up for the missing benefits from higher intensity running.
If he is seeing a naturopath this may have been performed already, but I advise Trace Elements Hair Mineral Analysis to find any nutritional gap. As far as metal detox is concerned, please be careful and avoid any aggressive chelation therapy. You're much better off trying Modified Citrus Pectin, ALA, Coriander Oil, Sauna, etc.
I applaud the effort to stay off pharma, but if you ever need to, please be watchful and beware of B6 depletion proactively. I see B complex is on your list, but please also look into methyl b complex to rule out possible absorption issue.
We should remember to thank John Pepper for the fast walk protocol. I know that he gets vilified by many in this forum and I realize that it is a bit harder than popping in a few 💊 such as B1, but it is so much safer.
Thank you very much, John. You are my everyday hero!!
I'm not aware of JP FW protocol, but I can't imagine anyone vilifying someone for promoting such important beneficial exercise as speed walking. No amount of exercising and walking will make up for the benefit you could attain from B1 therapy for the degraded enzyme/transport function.
Well, guess I'm too busy reading PubMed among other things. Parkinson's is a snowflake disease, so what works for one doesn't always apply to others. If fast walking alone has helped him for so long, he would be one of the rare lucky ones.
That's interesting. I have to admit that I have literally taken John's word for it and not bothered to question the wisdom because I think that his logic appears sensible. I will be grateful if you could please share your resources that reference fast walking and the benefits of the protocol for Parkinson's patients. I am certain that there are many other people on the forum who are going to appreciate the added information as well.
I don’t expect anyone to take anyone’s advise literally and not ask questions. As we’re responsible for our own health, it is ultimately up you to investigate any claims and judge the information”s validity on your own and you should not expect others to have all the answer- no one does. I am a proponent of applying protocols that are safest and sustainable (as in walking vs. running) with the least amount of side effects to increase the potential for a body to heal. Others choose to follow the prescribed allopathic route. You simply cannot say one path is superior over another for everyone because of many dimensions involved including beliefs.
John Pepper is interested in helping everyone . Sometimes people put him down for it, but i for one applaud him. just wish I could. walk fast but I am lucky when I can stand (89 yrs old.)
@rescuema thanks for all your comments. I am looking up some of your detox options. And B6 - And rereading your post. It has awesome information. Thank you 😊. Amy
Just be careful with ALA - it chelates mercury but its half-life is only around 3 hours - meaning you must take it every 3 hours, day and night if using alone. What I prefer to do is to take ALA and cilantro/coriander during the day every 3 hours, and then take MCP to absorb the mobilized metals. I hope that helps.
I can recommend Hardy’s daily essential nutrients. It has many different compounds combined in one product which is made and quality controlled in Canada. I was able to replace lots of individual bottles from lots of different suppliers with this one product. He also takes the restore gold and other things listed on my profile. My husband is 59, diagnosed 18 months ago and at present is feeling better than he has for 5 years or more. He is only taking 1/2 a C/L and some mucuna.
Hi. Is your husband's tremor only when he is not using the hand or is it when he uses the hand?
That is very important! If he has the resting tremor, it is unsightly but it is not painful.
If he clenches his fist, the tremor goes away, because he is using his hand. If he splays his fingers out, the tremor also disappears for the same reason. So he can hide it if he chooses.
There are many ways of dealing with symptoms which I am prepared to share with everybody. Look at my website - reverseparkinsons.net and contact me, I'm sure I can help you, at no cost!
Hi John. If your midbrain dopamine neurons weren't damaged along with likely absence of Lewy bodies, this explains why your Sinemet/L-dopa therapy wasn't beneficial and I assume you don't have resting tremor but dystonia, just as in other Manganese-induced parkinsonism. No matter, it is tremendous that you were able to overcome your disorder through the beneficial exercise regimen and conscious movements.
Hi rescuema. Here is my list of symptoms. I still have most of them, but the movement symptoms are now at a very low level. The Insomnia, constipation, tremors when stressed, are still problematic.
Seeing that frankly depresses me, but it's no surprise. In your case, the issue probably isn't with dopamine production but with the problem in the ability to release dopamine to synapses. Nevertheless, the fact that you were able to stay off pharma meds for so long is an impressive feat. We're living in a very toxic world so efforts to counter the toxins with organic clean diet is a must in addition to physical exercise. Zach Bush on youtube is worth watching (his full lecture) related to glyphosate, ground water, and GMO to increase the awareness.
I certainly hope that you've tried the high dose thiamine popular under this forum - I personally take TTFD and Benfotiamine, but that's my personal choice. I've no doubt you're taking Magnesium, but adding a balanced methyl B complex would be a good idea to rule out impaired methylation/absorption issue, especially the P5P in your case.
You will also want to rule out vitamin A deficiency- could cause chest and throat infection. Zinc deficiency could also cause A deficiency, so please try 20-30mg Zn for about 10 days stretch (no more) to see if that helps.
Lastly, if you must drink any wine, please let it be organic in limited occasion/quantity, though even organic isn't safe nowadays... It's best to quit or one glass once in a while. We have no choice but to try healing faster than at the rate we get injured.
Hi rescuema. Whichever way we look at health problems, the influence of BIG PHARMA is everywhere. They are in business to make money, regardless of what effect their products have on the health of people everywhere.
Life has become a minefield and we have not guidance at all, other than common sense. Unprocessed foods, preferably ORGANIC are the only foods we should be eating and drinking.
I drink a glass of wine , and sometimes two, every day, and at 85, what the hell!
I understand and perhaps In South Africa you might have access to better wine sources but elsewhere the level of toxins will quickly compromise the efforts to detox and heal and it’s only getting worse, especially within the last few decades. I’d rather not see younger folks getting a confusing message that will stall their progress. Just imagine the amount of the worsening symptoms you could've staved off... I wish you the best.
I hear you rescuema. It would be far better if I did not drink any wine, and I do go through stages where I don't touch a drop. But I do enjoy a glass of good wine and at my age, I really don't want to live for ever>
... and one lass of wine everyday will not do any measurable harm. As long as it's also the oldest antidepressant known to humanity, it also could do some good. Remember "the french paradox" ?
Europeans have had access to purer wines, and many countries have already banned glyphosate for years but they're all tainted with growing amount of pesticides, fungicides, and heavy metals partially due to climate change. One single glass of purer wine may arguably have minute benefits as long as the body can manage to stay ahead to detox the toxic chemicals (again, still depleting glutathione), but it's hardly appropriate for those who are already compromised in health and fighting oxidative damage and cellular dysfunction, especially when the skewed outdated logic becomes the pretext for daily abuse.
John, you're a legend so don't ever give up your effort to heal to stay ahead! I yield, but please keep that second glass far away and cork the bottle. You have motivated so many people and we'd love to have you around for a few more decades.
The HDT stopped my toes from cramping and curling under. I take 1.5 grams twice a day for a total of three grams daily. Also HDT at the correct dose has been known to stop the progression of PD.
Iam the same as you my ex husband was diagnosed just 2 years ago we are good friends live in same street , so far he,s not got shakes , he takes sinemit his problem is he,s very stiff and in a lot of pain down the whole left side from his neck to his feet , he now shuffles a lot his left arm is so weak , like yourself try helping by finding out all I can before I got I'll myself I worked helping Parkinson,s people with general things shoping , visits etc , my problem is hes such a negative person , he has got someone from parkinsons uk who helps with hospitals etc , I've been several times to the hospital with him , I've tried to get him to buy supplements sometimes he does but not for long ,
I think the worse thing is he looked after is mum with it , until he couldn't manage anymore ,as he also had to work , but his mum would not take medication , and shook very badly , trying to tell him that not everyone is the same , and that he,s takeing the medication , but sometimes , I want to run for the hills , as hes very angry all the time and picks on people ,
Sorry to go on , it's hard because I have no one to let off steam with he,s his own worst enemy .
It sounds as if your hubby is trying everything , it's very hard for them, esp when they have to give up work, they are lost without it , does he have problems with not sleeping , as my ex gerry does , and it makes it more frustrating, I think ,
I have heard of people in their 30,s with young families getting diagnosed with it and think , my goodness , and think that must be the worst thing ever , gerry was 61 when diagnosed, I think he probably had symptoms for about 2 years before going to doctors , if you find anything that helps let me know , take care now mind yourself as well , as people sometimes forget about themselves
You are right that is the positive side of things. Since the beginning I've been researching and doing it all on my own. No Doubt it will help me in the long run! Thanks!
You mention that your husband's PD symptoms started after toe surgery. I've noticed that many folks launch into PD following some physical trauma. Mine started the week after I fell and broke my ribs. I've heard of others starting following surgery or bad falls. I find this interesting.
Amy: I can share my experience regarding two of the issues you brought up: that of 1) some shock or stress triggering latent PD symptoms, and 2) the toe curling.
I had no Parkinson’s symptoms at all until I was rear-ended by another car on the highway. No one was going fast as it was a construction zone and I felt only the slightest tap. No pain; nothing that even concerned me enough to check with a doctor. But within a week or two of that incident several co-workers commented that my hand was shaking. I wound up checking it out with a neurologist who diagnosed PD. At that time, however, I didn’t buy it—I had no other symptoms. She suggested I probably always had it, but it remained latent until the auto accident. Perhaps that’s true also in your husband’s case with the foot/toe surgery and the toe curling?
Twelve years later and I’m no longer in denial. I’ve had a vast array of symptoms, including the toe curling. It can be very painful, even crippling. But it went away when I started taking the Carbidopa/Levadopa (Sinemet - It’s not just for tremors!), and has never returned. Personally, I have never had any adverse reaction to the C/L, but then everybody reacts differently when it comes to medication.
Your husband is very lucky to have you running interference for him in managing his disease.
It works similarly on alcoholics - while they experience tremors and shakes during the withdrawal, drinking alcohol helps to mask the symptom but only temporarily. Unfortunately the bottom line is that it doesn't actually help the healing of cerebellum and the liver's ability to detox wasting glutathione (leading to toxic buildup in the brain, esp the basal ganglia) which causes a viscous cycle to worsen the dysautonomia in the long run.
In the long run we are all dead anyway. If drinking helps, even only temporarily, then to my mind its worth doing. With PD there is a lot to be said about living for today.
My husband is on C/L 3 times a day & can definitely tell when it wears off. He also takes CBD oil which helps. He goes to Rock Steady Boxing which works wonders for him. Then walks on treadmill the others days. From what I understand exercise is the only thing that slows progression.
@Stevenmast. I will look the brand up for you and see how much he’s taking. But he is NOT consistent with this particular supplement. He does not think it helps him. I think he had high hopes and well... not so much success with it. Have you tried Mucuna ?
@stevenmast. This is what I purchased on amazon. Micro Ingredients/ organic Mucuna extract. I always look for “organic” options. It’s a powder. 1 small scoop is 500mg. Which is a very small amount. I need to relook at this. I think he’s only taken the scoop which is such a tiny amount no wonder why it didn’t work..... I’m glad you asked because I totally need to relook at this. amazon.com/Maximum-Strength...
Since there is no percentage of l-dopa specified on the package, it is probably pretty low. Also, reading the first page of reviews, it is being used by non-Parkinson's people. Without knowing how much l-dopa per serving, trial and error is the only way to determine an effective dose.
I thought I read somewhere that 7grams of Mucuna is about equal to 250 L-Dopa .... so if the scoop is 1/4 teaspoon for 500mg then 1 teaspoon is 2g. But I guess I need to know what percentage of l dopa there is right ? Oh my ....
All I use is mucuna and vitamin B1 and few other vitamins but it's the mucuna that relieves me of my symptoms and gets me through my day as others using it will tell you. Makes no sense to play around with all the various Types on the market place with varying l-dopa quantities. It's much easier to use the pure roughly 100% l-dopa this way you know what you dealing with. I use nutrivitashop.com to buy mine. A lot of people use zandopa but I understand it has saccharin in it as a sweetener and you certainly don't need to consume that on a daily basis. Without the Carbidopa component the timing of when you eat specifically protein and the possibility of getting a little nauseous are significant and how effective it will be for your husband. It's the natural version of levodopa and should if your husband can tolerate it and taken right should relieve him of any tremors he may be experiencing. There are some that don't get relief but for me it's magic it's the reason I'm able to work and get through my day. I am now on a ketogenic diet / lifestyle it seems to be helping a whole lot! Look at my post mucuna protocol you might pick up a few things to help your husband. I'm using mucuna for the last 4 years with no other medication. Good luck to your husband! I'm here if you have any other questions. Steven
Steven- This is awesome information. I think a keto diet is excellent ! I also think Intermittent fasting and even fasting for an extended period of time is great. My husband is not really interested in it. He works out hard and gets and craves carbs. But we are definitely leaning more towards keto type living. I will totally try to find your posts on Mucuna. I have been having a hard time getting good info on Mucuna so thank you!!!! Amy
Again, eating Keto requires discipline. You will not reap the benefits of the body burning fats for energy unless you're in ketosis. I have an app that I use that I think is fantastic and easy to use. It tracks the amount of fat, carbs, protein, Etc. It's also tracks the percentage ratio of each category for example Keto should be roughly 70% fat 20% protein and 5% carbohydrates. I will look it up and share it with you in a moment
Intermittent fasting equates to less dopamine used for digestion by the GI track, which translates to more available for the brain. He craves carb because he's a sugar burner, but as he adapts and lowers the carb portion (try MCT slowly with coffee in the morning), he gradually won't even feel hunger. Reducing carb is essential to reduce inflammation.
Amy you’re doing a great job taking care of your husband. He’s super lucky to have you in his corner. As for his regimen, I don’t like to criticize what other people are doing, but although the alcohol and cigars may be temporarily relieving his tremor they are also putting a lot of toxins in his body which is not a good thing. The only other thing I have to add is I have found C/L to be a good medication for relieving almost all PD symptoms, including reducing tremor. I use it minimally, mostly at night, and in combination with Mucuna. I don’t see any advantage in avoiding C/L. As John Pepper points out, we need to feel good enough to exercise, which is a key factor. One final thought, taking care of anyone is super hard work. Make sure you take care of yourself as well. Best of luck- JG
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Neurologist Examination
Glove update - GP appointment finally!
WTF do Doctors think about PWP . Please read what some one posted. It should make you mad as hell just like me. Sorry if I offend any one.
Manganese?
