I am still confused why my husband got Parkinson. I diagnosed him, till now (1 year) we didn't go to see any doctor, we read so much about medicine that it only worries us. He is not that bad at all. Perhaps we are stupid. I don't know.I am wondering, what is the cause for this disease? It can not be the food or the environment, because I ate the same and lived with him.
I know nobody knows, but I wonder if the people here has thoughts about that.
Anyway, I am glad I found you.....
Stress and genetics
More likely, there are multiple causes. As a man you have a greater chance of getting PD anyway, so it can certainly also be the diet, vitamin deficiency, pesticides, lack of sleep, too little exercise, but especially the chronic stress that jeeves19 already mentioned. A nice cocktail... sterkte 🍀
That you don't have PD doesn't mean the environment didn't cause his.
What matters now is what you and he are going to do about it.
I read your story!Can you tell me where you bought the B1 sublingual vit? I live in Europe and cannot find it.
I'm in the US and don't know what is available where you are
pureformulas.com/no-shot-b-...
google.com/search?q=B1+subl...
It gives me an error.
I'm not getting that.
try this link to Amazon -----Superior Source
amazon.com/Superior-Source-...
Not available.....Perhaps it has to do with not selling this in Europe.
Thanks for your help!!
Now that your husband is still functioning quite well and you have already collected some information, this may be the right time to look for a good neurologist in peace and possibly have the diagnosis confirmed. After all, there are many diseases with Parkinson's-like symptoms that need a different approach. You can or should even stay in control yourself, but try to find a sparring partner who checks whether you are taking the right course and there are no unknown dangers. To be well prepared, I recommend that you read the following book: “Ecological therapy for Parkinson's disease: Medication, late and little” (dr. Rafaël Gonzalez Maldonado)
Ecological treatment of PD includes exercise (hiking, brisk walking, swimming and strength training), pleasure, regulating sleep, taking care of the microbiota and diet (MIND diet, “Voed je brein” Iris Sommer /Hersenstichting), adding some supplements and, when levodopa is needed, starting with C/L medication or mucuna at the lowest possible dose.
“We must move away from the pharmacy and get closer to nature, recover the strength of the instinct that boost the brain. We get sick the way we live and, conversely, we can regain our health by changing our lifestyle. Parkinson's sufferers who succeed to do so will live longer and much happier.”
Yes, you might be right, we are going to think about looking for a good neurologist. But I hear about them only trying to get you on medicine. And my experience with the medical word is not very good. I got my husband from high bloodpressure medicine, but they wanted to give him more. His blood pressure now is better than ever before when he was using the meds, per example.But thank you for taking the time to advice us. I will look to find the book you named.
Thanks!
Perhaps you are aware of the Parkinson's weekend spectacle in Nijmegen from 22 to 24 September? It seems to me an ideal opportunity to inform you more. I myself am unlucky with my neurologists, but just like in France, there are also top doctors in the Netherlands. You probably won't be able to go to Bas Bloem, but I'm sure his team in the Radboud umc in Nijmegen consists of excellent neurologists. The best PD care centre in the country and perhaps even in Europe. As you may know, their priority at the moment is especially exercise and a healthy living environment and certainly not over-medication. On the Parkinson's weekend they will probably all be present and can show you. Numerous lectures, sports demonstrations, films, art, music, dinner and introductions. However probably all in Dutch. Perhaps we meet there in the Parkinson Café!
intonijmegen.com/parkinson-...
To add to this, my wife and i are at this moment at the Regen Parkinson Therapy Centre in Boario Terme. We will be here for 2 weeks
Beautiful region by the Iseo lake! I am very curious about your experiences!
Nothing is impossible if you think like the Creator of Things (not of all things)😀.
Lake Iseo, June 2016, Italy.
youtu.be/CZWQt5fg1eU?si=Jwu...
The Creator of Things didn’t need Christo here. He has surpassed himself. After the ascent with 32C I could only confirm the text on the entrance gate of the Santuario at the top of Monta Isola «Questo luogo altro non e chela la casa di dio e la porta del cielo»
Hi there
I visited Italy last year thought it was
Terrific excellent physio my physio
Was Catherine fantastic really
Professional I’ll be back good coffee
At the illy coffee shop at the bus station
Thank you for all that information!!!And it would be great to hear it in Dutch
Welke post? Of alles. Ik kan het vertalen als je wilt
I might not be clear but my answer was a reply to someone who told me to go in Nijmegen, the Netherlands, to a Parkinson weekend. It will be in Dutch, he said. Well, I am Dutch, so I love to hear it in my language.
Better seeing g a neurologist don’t let it
Play with your head take it in the chin you
Can live well with pd I play golf cycle walk
Take neuro physio classes I do zoom classes with Neuro heroes . Co .uk they are the best the girl that takes my Friday morning Pd fit on Fridays is a neuro physio at st Thomas hospital in central London gives 100% her name is milly the girls who run the business are also really good
I don’t think you are stupid! You’ve been doing great work and this is the right place to be! So much medical information is a lie. I trust mostly the information that does not separate me from my money! But if he had this disease he may eventually have enough problems that he wants to try Carbidopa levodopa ( it’s very cheap). For that you need a doctor.
Why not try macuna pruriens? Perhaps we give it a try.
Rafael González Maldonado is a fan of mucuna and has previously published about it here in "Treatment with Natural Levodopa". This booklet is also freely available on the internet: intechopen.com/chapters/60608
In his recently published book, however, he makes a few comments. In particular, the unreliability of the dosage. In tests of 16 products, this varies from 2 to 241 mg and is often fraudulent. In another study, half of the cases showed only 6 to 40% active levodopa of the stated amount.
In addition, you actually need an excipient to get the levodopa into the mucuna in your brain. Otherwise, you need 4x as much levodopa as with the artificial levodopa medication to which carbidopa is added. Not healthy and very expensive. If your husband needs a higher dose of levodopa, possibly a combination of the traditional C/L medication and mucuna could be considered. However, first I would consult a neurologist!
If someone wants to control the other person, but the other person is not able to defend himself (hands are affected), escape (legs are affected), then due to muscle involvement, Parkinson's disease will develop, and if I think that my survival will only be solved by excessive attachment, then it is even more certain that I will develop Parkinson's disease, So this disease develops due to the impediment of movement. If someone wants to control the other person, but the other person is not able to defend himself (hands are affected), escape (legs are affected), then due to muscle involvement, Parkinson's disease will develop, and if I think that my survival will only be solved by excessive attachment, then it is even more certain that I will develop Parkinson's disease, So this disease develops due to the impediment of movement.
I am astonished. How can it be, if I understand this well.My husband developed Parkinsons disease, but he has a, perhaps, bigger problem: macular degeneration. His sight is 8%.
What can you say about the cause of MD?
Hey! I am in the same boat. Due to my husband's sleep interruptions and patterns I knew it wasn't normal, but had no idea what was wrong. I heard the PD symptoms on an Alan Alda pod cast where he was talking about his Parkinson's diagnosis to MJFox. REM sleep disorder being the first symptom for both men. From there we saw a neurologist, who said "probably", come back in a year after it gets worse. Then, like you, I started reading, and found HealthUnlocked, and so appreciate this community!!! After the not so helpful Neuro, we went to a fundamental medical clinic. They knew little about Parkinson's, but were very into toxins. After a blood test that show several toxins, they were not much help other then some supplements to help shed toxins. A year later - entering 2023 - 3 years into our journey - we saw his MD so we could get a referral to another Neurologist to get a UPDRS test for a base line. He gave me a lot of attitude.......refused to order the blood tests I wanted to start as base line bio markers, told me my husband's only problem was colitis which he had decades ago and we got under control (and which could have influenced PD), needed me to describe what REM sleep disorder was, and pretty much treated me like I was crazy. After that we had the dermatologist do a A-Syn test, which insurance paid for and came back with folded alpha synuclein. Following the referral from MD we went to a geriatric team which had a MD, NP, Pharmacists, and social worker. UNBELIEVABLY, the MD didn't know how to do the UPDRS Test. (I was dumbfounded, his speciality was the elderly. ?? WTH? ) They didn't have a sniff test either. BUT FOR THE FIRST TIME, I felt heard, and supported. The MD agreed with the PD diagnosis, was supportive of our protocol - Diet, Exercise, supplements and said he would help me find someone who did the UPDRS test. The Pharmacists (He was the best ) went over our list of supplements, approved and didn't see anything alarming, asked to take the list, and wanted to know about Dr. Consitini (SP?) and B1 protocol. So that is 4 doctors. And if you caught it early, and you want to slow the progression there is no help from the western medical field. Come back when it gets worse is all they have. We hope to get the UPDRS test, but I also plan to go to Seattle to see DR. Laura Mischley clinic. She isn't taking new patients, but she has doctors there that she has trained. Look her up! She has lots of videos. Join her parkinsons school. My main sources of information is HEALTHUNLOCKED and Dr. Mischley. HU brings so much to the table. Videos medical studies, and anecdotal testimonies. For the most part everyone is so very nice and helpful, and not too much hair pulling happens. IOW I have been studying PD now for three years. My husband has lost his extended tremor, but his posture is still C shaped, he cant smell sh*t - -literally, and he has REM disorder, but I want to say not as bad. (I have a watch on order to help us track his sleep problems.) I can't speak to what causes PD, I believe it is a combination of factors first environmental, chemicals in our food, fungus, mold, toxins, even genetics. It is predicted that PD will double in the next 4 years. On one video I watched, the DR. said with those type of statistics it has to be environmental. My husband was a mechanic on Navy vessel, and on trucks and busses, so lots of solvents, chemcials, exhaust etc.. He has also been a builder, landscaper, race car driver, back woods horse rider, pond swimmer, drinker, and weed sprayer. Who knows where came from.......my goal is to SLOW IT DOWN. BUT WHAT IS INCREDIBLY SAD IS 4 DOCTORS LITERALLY SAID come back when it gets worse. I can only help you with drugs when it gets worse. I can't really order just any blood tests, I can't do a UPDRS test. The medical field is not ready for the increase in PD as far as I am concerned. So until it gets worse you are pretty much on your own. But you are in good hands - this community is THE BEST! Ask your questions - they will help. I wouldn't worry too much about seeing a neurologist, unless you want to start your hunt. Good ones, as many on this site have mentioned are few and far between. For us I just want a base UPDRS test to start, something to compare with annually. I'd also like to leave a little hope.....some people have PD for 20+ years and seem to be able to keep it under control, others no so much. Start with diet and exercise. We eat organic as much as possible, have cut out milk products, and most gluten. There are many medical studies on the horizon that offer hope. I am the most interested in STEM replacement. Right now, unless you were sleeping with my husband, or passing a livestock facility you wouldn't know he has early PD symptoms, hopefully we can keep it that way.......at least I am trying everything that sounds reasonable. Good luck, here you are surrounded by good, good people.
My husband was diagnosed with macular degeneration 15 years ago. We followed the advice from doctors, bought supplements, did our best with healthy food, looked for alternatives but it didn't change anything. His eyes are very bad now, he sees 8%.Then I noticed a strange body position, but I tought: he gave up.
My husband was a grafic designer, wrote history books, always busy with the computer and built an old farm to a beautiful house for us.
But he could do nothing anymore without eyes.
His voice became soft, he could not follow us anymore when we where talking, he choked every time, and sat in his chair, chin on chest, did hardly say anything.
20 years ago his smell had disapeared.
I found out it could be Parkinson's disease and I noticed, reading more, there were more symptoms. Also strange dreams at night. No tremor!
I did not talk about it with him. His friend had PD and it was devastating. He drove with him in the car, that man was so bad. It was terrible. I could not tell him what was going on. He wondered what was happening, but I did not tell him.
I asked him: shall we go and see a doctor, but no, he did not want it. I agreed.
I do not know if it was right what I did. I told our children, they saw it too, I limited visitors for he could not respons quick enough and he did not like that. His face was without any expression.
This summier I told him, but I also told him about the good results when people are using vit B1. I tought, this is hopefull, now I can tell him.
He was not angry for not telling him my thoughts he still did not want to see a doctor.
We read there is nothing to do, it will not stop.
Do we again follow all kind of rules, eat this, not that, are we going to walk a lot, do we see doctors, neurologist, and others?? Why??
I am very sad. Yes, of course we have to do it, you will all say. But we have both the feeling, just like with MD that it will do nothing. Only stress. All hope is gone.
Given the serious situation, I think you make a mistake by not talking to a neurologist as soon as possible and confirming the diagnosis. Every day he doesn't use the traditional C/L medication for PD is a lost day. Healing is not possible but a significant improvement of your man's life indeed. This usually applies at least for the first years. At a later stage, the side effects can be a problem, but many manage to benefit from the levodopa much longer through optimal medication linked to an accompanying «PD lifestyle». At a later stage you can always start experimenting. Better not for now!
Don’t give up and don’t just listen to everything the neuro says. Your husband can improve and get better if you research on HU what others have done other than following prescribed meds.
These are the things various people have done and experienced improvements
1. Vitamin B1- join Daphne Bryan’s Facebook group and start on vitamin B1
2. Redlight therapy- coronet duo
3. PS 128 probiotics- search on HU n read
4. PEA- palmitoylethanolamide
5. Truniagen or niacin
6. Active exercise amongst many other things
there is wealth of information on HU and many willing to share experiences and help.
Wishing you best outcomes
Thank your for your detailed answer. I can tell you that I appreciate HU very much, but that it is also overwhelming. Because one says this and the other says that. This also applies to medication and supplements. too much conflicting information. the only thing my husband has tried is B1, when we got to 2000 mg a day I didn't know if his problems were due to Parkinson's or B1. so he has slowed down, stopped and remained at a low level. but I don't see anything positive. I do see that his problems fluctuate: sometimes it is different from the other. and when I hear about neurologists who do not always conclude the same thing, are quick with medication, do not want to help with cutting back... I read all those things here. and so we do nothing until now.
When I first figured it out I was devastated. Finally, a friend suggested I look into trying to slow the progression. By reading and doing research I feel hopeful. My husband is not very advanced and has no other issues, besides sometimes cranky..... I'd also suggest you find some help/support. Often on HU a motion specialist gets the most stars. And finding the right medical support can be a chore. For me, I have been happy with 3 out of 4. And nobody offered help or guidance. I have been on my own except for the great people at HU. Attitude is every thing!
the sweet spot for vitamin B1 takes patience to slowly adjust. Most hv found that when symptoms are reduced they require less medication. Some have also reduced B1 after taking it for a period of time.
Everyone is different and no one size fits all unfortunately. But with shared experiences at least you can start somewhere and decide your course of action. I am very grateful for HU and the information , time and suggestions that many have shared.
Wishing you good outcomes
Started thiamine hcl today 
Newly diagnosed
Collagen powder and increased stiffness?
Young Italian-Spanish speaker needs support 
