It has been 2 years since I have been diagnosed with Parkinson's Disease but I have had symptoms for close to 4 years. I am only at the start of my journey with this condition.
Attached is a short presentation that recaps what I do to manage my symptoms and hopefully slow down progression.
For me, this has become a full-time job and has helped me control anxiety, increase my energy levels, reduce "brain fog", improve my balance, regain my sense of smell, improve my voice and dexterity.
I am aware that many PWPs will have time constraints and physical capability limitations, and I am sharing my program in the hope that, if not all, some parts can help inspire my fellow PwPs.
Please feel free to forward this document to anyone who you think might benefit from it.
This is great thanks. I was diagnosed 2 years ago as well, the same week the UK went into lockdown. A strange time! I'm working hard to navigate the best ways to manage and hopefully slow progression, but hope to get to a point where PD doesn't consume me. I'm a little obsessed by it at the moment.
Thank you very much Stillstandingstill. I have seen the damaging impact of Parkinson’s on my father who had it too, so it was a hard for me at first to overcome the thoughts of a very bad future. I found that meditation/prayer are a great remedy for anxiety and I can only recommend it.
Michel, my father also has PD. The experience of having a parent with it can be especially anxiety inducing. I have found the concept of “longevity escape velocity” to be emotionally uplifting and it therefore reduces my anxiety. The personal protocol I am working on for myself has many similarities with your protocol. I refer to it as “Optimum Self Care.”
A few questions if I may;
What form of glycine do you take that assists with sleep? I take TMG but do so mid morning.
Although I take magnesium threonate, I’m considering adding magnesium glycinate. I’m not certain if that would cover by need for glycine.
Melatonin; have you considered the precursor tryptophan instead? I take melatonin as well.
Nutrition: my functional medicine doctor, Dr. Todd LePine, also advised no alcohol and no gluten. He did advise no grains at all and no dairy is optimum. Are you abstaining from dairy?
I too am thinking of my self care as my job. I feel very blessed to have the freedom to make this decision. Although I’m only 46, I abandoned my career aspirations and now work very minimally to focus solely on my family and my personal wellness.
Hi ccraspberry. Thank you very much for your message.
Please see below some answers to your questions.
- I am using glycine produced by Now. It does help to some extent but the main help comes from melatonin that helps me fall asleep, and fall asleep again when I wake up in the middle of the night.- I am using PrizMAG Magnesium Bisglycinate as this is the one that was prescribed to me by my nutritionist.
- I will look into tryptophan, thank you for suggesting it.
- I am entirely abstaining from dairy products (I should have mentioned it).
Like you, I have abandoned my career aspirations. As I mentioned in a previous article, PD has given me a new life. I would of course rather not have it, but it is also a blessing in some ways.
Appreciate your additions to this thread! I am 48, was diagnosed at 42 and have stopped working to focus on wellness. It’s nice to connect with others in similar situations.
Question: do you take a regular probiotic? What about inositol?
Yes, I have been using Symprove for quite a while and am now using Neurobiotique PS128 (unfortunately out of stock). I am not familiar with inositol but I use mannitol. What is your experience with inositol please?
Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2024. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.
According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.
South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.
Good thoughts. We have much in common. I may be a year or two further down the road than you. My father (and father in law) also had PD - both starting a bit later than us.
There is much happening. All too slowly when you have PD - but it is happening. In the true world of science - not the amateur enthusiasts. Exercise and stress management are key things you can do (my therapy GSD is a big help here). Vitamin D, B vitamins , Turmeric, and in my case Doxazosin don't hurt, but avoid the rabbit hole of grabbing at everything. Also I believe the microbiome contributes, and I include natural probiotics in my diet, which I try to ensure has lots of fresh fruit and vegetables, and a good balance. I might take a look at PS128.
Intelligent involved experimentation with available meds can (at least in our early stage) help the Corporal Jones bit. I can play guitar again! Don't waste the opportunity waiting
And, fully aware of the possibilities for placebo effect, I keep making efforts to use my red light hat regularly.
Our point of divergence - I went gluten free, very low sugar, and low carb - and have no way of assessing what the long term benefits might have been, but found under the heading of stress management that "normal" and a few beers at the rugby with my mates were a better option.
Maybe that should have read stress management and exercise...
Giving up alcohol was a drastic move and I do miss a glass of red wine or a cold Belgian beer, and there is no doubt that alcohol in small doses would not be hurtful and could contribute to a good moment of relaxation. The only reason I stopped entirely is to avoid temptation, as I don't trust myself to stop at just one glass!Can you please let me know where I can find out more about the GSD therapy that you mentioned?
Sorry MichelI was referring to my Bergere Allemande - German shepherd dog, Keisha. Seen here with her boyfriend Rommel. She takes me for a vigorous walk in beautiful mountains every day, and then sits and cuddles on the veranda while I listen to soothing music
Any time you're passing she'll be happy to give you a cuddle. I'll try to find the picture of her with my Dad before he passed.
I remember the first time you posted here on HU as it was the same post as on another site and I thought it was a copy / paste , but this made me see how difficult it was for you to leave your job, yours friends and colleagues, I think. Bravo you have been very courageous. The day of the diagnosis that I call "the day of the fall of the stars" in the sense of the terrible contraction that our point of view on the future undergoes, is also the day of the beginning of recovery from the disease, …if one survives. 😃.
The point of view depends on the willingness and ability to look which together form responsibility, you have the courage and responsibility to look towards the future and this is all we need. May your life never be the same again and thank you for being here with us pioneers and explorers of the terra incognita of Parkinson's disease. Gio
Ciao Gio! Thank you very much for your nice message and for the beautiful picture.I agree with you that the day of diagnosis is also the day of a new start. It changes your life forever but it also offers new opportunities. For me it marked the end of my very stressful professional life (I was doing well but I was killing myself) and, despite the symptoms, it was also an open door towards an improved quality of life.
We are indeed pioneers and explorers of the terra incognita of Parkinson's disease!
Thank you! You are blessed to make your health your priority. I know some folks on this board still work. Do you have any idea which of your many healthly choices provides the biggest benefit. My guess would be reducing stress.
Thank you for your message and for a very good question.
Maybe the best way for me to answer is to look at what I would least want to stop if I had to (aside from meds)...
Exercise is top of my list. I try to exercise two hours a day during the week and I wouldn't want to do less than one hour. At the risk of being a bit extreme, I would have the feeling of hurting myself if I didn't exercise.
Second would be meditation. It has helped me tremendously in terms of coming to terms with the anxiety that I was experiencing before. I could do a few days without meditating but I wouldn't want to drop it as I think I would mentally deteriorate.
I would then mention vitamins B1 and melatonin. The former helps me with my energy levels while the latter helps me sleep better.
Hi Michel I have a couple of questions about the cycling you do.
Is it indoor static bike spin cycling? If so, do you do it at home or at a gym?
I bought a bike for home use straight after diagnosis - having read about Jay Alberts - and am convinced of its usefulness in slowing my own progression. I do classes on YouTube (GCN or RI:ID) and use the Intelligent Cycling app connected to Spotify. Do you do it for low impact cardio or do you think it does more than that?
Secondly, I wonder if you know about the effort to get PD Cycle off the ground in the UK? Unfortunately there are currently only 2 qualified instructors in the UK - one in London and one in Scotland
However, I sincerely hope that it will get off the ground and become ubiquitous like Pedalling for Parkinson's in the US. After all, when I started PD Warrior 5 years ago I had to travel from London to Salisbury to be trained - now it is much easier to find. The instructor in England is Izabela Ruprik - she kept me going with online classes throughout lockdown. See here for an interview with her.
Yes, it is an indoor bike and I do it at home in particular when the weather does not allow me to go outside for a walk.I just do it for low impact cardio. I am not so crazy about it because my bike, although decent, is not very comfortable. I might invest in a better bike at some point.
I also have a cross trainer. Training on the cross trainer can be pretty demanding and is more similar to the experience of walking outside.
On a rainy day, I tend to do half an hour on each.
Thank you for attaching the video interview. I will definitely have a look.
Thank you very much. Let me also take this opportunity to thank you for your help as you have been an inspiration to me, not to mention the fact that you have answered many of my questions (no later than yesterday!).
You almost got me to seriously consider buying the Oculus VR boxing but I backed out after seeing a Varjo XR3 demo on youtube - that looks amazing. I'll wait a few more years for things to become more advanced and more affordable, not requiring a Facebook account. Besides, I can't imagine working out with a device on my head and sweating regularly, so I'll settle with more Tae Bo routines. 😁🏃💪
You've become a real asset to this site with your amazing contributions. I also remember your first HU post and I'm very glad to hear that you're doing rather well with your positive outlook. Great presentation!
Hi rescuema. Thank you for your nice message. Varjo XR3 looks great but I agree with you that it is unaffordable at the moment. The advantage of Oculus (not cheap but affordable) is that it gives me the opportunity to box from home as I don't have a PD boxing class close to me. I am aware that it is not everyone's cup of tea, but training can become boring and this provides me with some variety. To be perfectly frank, VR training only accounts for a small percentage of my overall exercise routine and I don't think that anyone should rush to go buy a headset (unless you have kids or grandchildren who might like it!).
I've heard great things about Rock Steady Boxing so I wasn't kidding when I said I almost bought Oculus for boxing, but the game didn't look interactive enough other than punching and dodging flying objects at the moment and I was hoping for more of a combat style to get adrenaline kicking. Varjo Aero is also available as a consumer version for "only" around 2K, so I'm thinking it's a matter of time before the market is saturated with better quality competitions soon while the technology is available for catchups, even better with Mixed Reality integrations - that would something for virtual meetings! Just imagine the possibilities - being able to meditate anywhere in the world or learning marshall arts through virtual reality, hopefully with more featherweight gears. It is amazing what mass consumer demands can do to speed up technological advancement and wish the same could be possible for healthcare. I see myself buying one in a few years!
Hi rescuema, Oculus has a very interactive boxing game called "Thrill of the fight". I must admit that it was a bit too much for me but it is quite interesting. youtube.com/watch?v=eB6gYf3...
Yeah other than the graphics rendering that’s more of the style I was hoping for. I heard PlayStation will soon release VR2 with eye-tracking and other more advanced features and Apple is also rumored to release one soon so that should get very exciting. I want to experience the Varjo resolution sensory experience so going to wait a few more years before dipping in. It should be like repeat of HDTV on steroids - it’s crazy how inexpensive they’re now and I still have Sony Bravia that cost me serious money over a decade ago to compare to cheap 4k ones I bought for my gym and guest rooms. Anyhow you got me interested in VR, especially for the therapeutic and interactive aspect of it. 😎
Are you aware that high intensity aerobic exercise reverses Pd symptoms? No medication does that. I have been doing fast wallking fsince 1994, 2 years after diagnosis. I stopped takinf Pd medication in 2002 and have not been back on since. I am now 87 and still walking.
I believe you live down there would love to pick your brain about your thoughts on pd My pd not too bad mostly tremor I’m into fitness cycling gym work golf walking
Hi hanifab. Thank you for the suggestion. I had looked at them in the past (and they would've been my first choice) but I am based in the UK and they were not the easiest supplier to my location (they also seem to be out of stock at the moment by the way).
I have been using the product below instead. I realise it does not have great reviews on Amazon but it has helped me from a digestion standpoint (neuro biotic benefits are more difficult to assess). Just noticed that it is also out of stock!
SYNERGIA PS128 30 Sticks | Neurobiotic Lactobacillus plantarum | 30 Billion CFU Production. More information: amazon.co.uk/dp/B07X3NKYZK/...
Hi Serena. I take one pill of Sinemet 12.5/50 3 times a day. I also take a pill of Mucuna Now three times a day, together with the Sinemet. This is purely for information (I am not medically trained) so please do not use this as a recommendation and seek independent medical advice.
How has your quality of life changed in these 2 years? Do you take care of nutrition? Do you still have a social life? Are you working? What are you doing?
My quality of life has first deteriorated quite a bit but has improved more recently. Managing anxiety has been a priority and has improved for quite awhile now. As I mentioned in my presentation, my program has also helped me increase my energy levels, reduce brain fog, improve my balance, regain my sense of smell, improve my voice and dexterity.
Yes, I believe that nutrition is critical - please see my presentation that covers that point. Increasing cell energy and reducing inflammation and oxidation is probably a critical point.
I no longer work and am fortunate to have the time and energy to do my program during the week.
I have less of a social life of course than when I used to work but I'm far from being isolated. I am also fortunate to have a wonderful partner and three beautiful teenage kids, one of which I am currently working very hard to help getting into a UK university.
Congratulations on your mission. Your dedication and perservience are amazing. Thanks for sharing. Having a tough day and your story gave me some hope. Wishing you continued success.
It would be a very nice and useful service if neurologists and MDS's could send their new PD patients to someone like you so they could be exposed to more possibilities than just the gold standard treatment from the very start after being diagnosed with PD.
I imagine it would be quite useful and informative if you would create a DVD that clearly illustrates your regimen and how to implement it. Perhaps something along the line of the book that forum member " Dap " wrote to explain how to utilize B1 as part of management of PD symptoms, only yours would be a DVD or two clearly illustrating your process for PwP who want to be as proactive as possible in their treatment plan. You could also sell it on Amazon to reach a larger target audience.
From this post, you seem to be inclined to want to share your regimen with other PwP and a DVD or two seems like an effective way to do that in a way that could reach a very large audience. I'm mainly thinking out loud here as a response to your post which I consider to be quite useful and well thought out!
Good morning Art. Thank you very much for such a nice message.
No later than last week I attended a local Parkinson's UK branch meeting where we had the opportunity to listen to the new CEO. Someone asked her what her priorities are and she mentioned that she needed more neurologists. Although I don't disagree with that, I told her that I felt a priority would be for neurologists to be trained to recommend exercise, nutrition and meditation to their PD patients. To be frank, I did not feel that this was getting a lot of support as people felt that Parkinson's nurses are doing that part of the job. Yet, I think that neurologists are in a privileged position of authority that gives them a very loud voice. In the absence of this, my presentation aims at presenting an example of a holistic program that is the only way to manage this condition in my view.
Thank you for the suggestion of a DVD. Based on the positive reaction to my presentation I might do a video or animation of some kind. That's probably the next step!
I can't speak for the UK, but here on the other side of the pond, doctors in general have no extra time to teach patients about diet, nutrition, supplements, exercise, etc. It would sure be nice though if every neurologist could give each of their new patients a DVD or two at their initial visit that would clearly explain exactly what you are laying out. It would be highly cost effective, uniform, uniformly complete and effective. If that is not practical to develop such a DVD, perhaps the doctor can just give the patient a YouTube link where they can watch an always updated video about exactly what you are suggesting!
If financial gain is not an issue, YouTube could be another avenue with a huge audience where you could share your regimen and its application in everyday living and it allows you to update your regimen as needed. To me, an effective regimen for PD would not be static as it would adapt to new scientific findings or your personal findings over time.
I think you have a very good idea, but figuring out the best ways to share it and disseminate it is important for best effect.
Are you not getting a little bit carried away here? Michel is two years post dx. He has shared his regimen which is generous of him but are we not an awfully long way from reaching some sort of consensus agreement that his regimen should be promoted (by doctors, no less) to every new PWP?
Why not, most of his regimen appears to be good for health in general and it is not like there is ever going to be a study in our life time that is going to test all of his regimen. There is no readily apparent cure on the horizon, so that leaves improving quality of life as an option for PwP and that is exactly what his regimen is attempting to do.
Every part of his regimen has a very good safety profile and has been shown to promote health. I think the majority of doctors around the world would agree that exercise is a very healthful thing to do. Red light therapy has studies to support its use to promote health and many physical therapists already use it. Meditation also has studies to support its health promoting effects. Stretching is good for the muscles and in helping to prevent muscle injuries and tight muscles are a common problem in PwP and stretching is a very important tool that physical therapists use everyday. Voice exercises can be very helpful in PD to help maintain a clear and audible voice. What doctor would not promote these healthful practices to their patients ? What is detrimental to health in this regimen? This is a pro health regimen.
Michel needs no one else's input, approval or consensus to promote or share what he feels is useful for him and possibly for other people with PD. If doctor's are not interested or do not have the time to consider it, he can promote it on YouTube or sell it on Amazon for anyone who is interested . This is essentially what Dap did with her book about B1 and if she had waited for a consensus of medical professionals to reach an agreement on whether B1 has any value for patients, that book would never have seen the light of day.
"What doctor would not promote these healthful practices to their patients ?"
According to you, every neurologist?
"so they could be exposed to more possibilities than just the gold standard treatment from the very start after being diagnosed with PD."
What happens when it emerges after the appropriate trials that, for example, high dose thiamine or red light therapy actually make some PWP's PD worse? Then what?
The gold standard treatment has already shown itself to increase oxidative stress and oxidative stress is considered to be a contributing factor to disease progression, so do we now tell PwP to stop taking it? It also increases homocysteine which is bad for everyone in general and PwP in particular.
Red light therapy has been in use for over a hundred years. How much longer do you think we should wait for someone to figure out that it isn't hurting us in some way?
Here is a relevant quote from this Harvard article :
>>> ' Toxicity
It is unlikely to reach a toxic level of thiamin from food sources alone. In the setting of very high intakes, the body will absorb less of the nutrient and flush out any excess amount through the urine. There is no established toxic level of thiamin. "<<<
People have been using it on this forum for at least 5 years with no serious reports of side effects and Dr. Costantini used it in over 2000 patients with no serious side effects. How much longer do you think we should wait to figure out if it is safe for PwP to take HDT? The only time it has been reported that HDT made PwP worse was when the dose was too high for the individual and lowering the dose or stopping has corrected the problem.
Art, the matter at hand is not whether thiamine supplementation is generally regarded as 'safe'. I am sure that it is. I am not talking about serious short term observable side effects. I accept that these are few and far between (or that they don't occur at all) and that they are resolved by cessation of use.
I am talking about the impact of, for example, thiamine, on the progression of parkinsons disease. This is far harder to observe, and I'm afraid it is not a question that Dr C's published studies nor his apparent clinical observations are able to address.
If a study of sufficient duration and quality was to demonstrate that thiamine does what you think it does then I am confident that parkinsons specialists would promote it in meaningful numbers. Until that time, they largely feel constrained in their ability to do so and that is fair enough. The same goes for other interventions that people on forums are very enthusiastic about.
A person with lewy body disease is not normal or healthy. And that is why well designed clinical trials are required using PWPs.
The studies you are waiting for are not likely to be funded as witnessed by the MJFF solution of, B1 is just a supplement so you can just take it if it helps. Studies on non patentable molecules don't always get the needed funding or studies to prove efficacy and that seems to be the way things work. So based on the known safety profile of B1, people make their own decision to use vitamin B1 at high dose. It is my impression that waiting for the studies you are describing means that B1 will never be recommended by the great majority of doctors/neurologists. If a single disease group (PD) such as MJFF won't contribute funding to a study using B1 in PwP, that would seem that chances for such a study are nil.
PD waits for no study, it just seems to progress. I think that many people will just look at the safety profile of B1, reported results by people who are using it, compare it to the safety profile of Levodopa and just go ahead and use it, which is exactly what has happened. In other studies that have used B1, toxicity has not been an issue until you get into a dosing range that nobody is using except in animal studies.
I think PD could be considered as a disease where time is not on your side. There is now over 5 years of people using HDT and I simply have not seen people who have been on it for a long period of time reporting anything that is making them want to stop taking it. You can wait for those studies, but that could be the rest of your life.
Carbidopa/Levodopa clearly has significant side effects as I linked to earlier in this thread and some people have reported having to stop taking it due to those side effects and some people have reported those side effects shortly after starting on it or as soon as starting on it. Here is that list :
Twitching, twisting, uncontrolled repetitive movements of the tongue, lips, face, arms, or legs
Less common
Bladder pain
bloody or cloudy urine
chest pain
confusion
difficult, burning, or painful urination
discouragement
feeling sad or empty
frequent urge to urinate
inability to move the eyes
increased blinking or spasms of the eyelid
irritability
lack of appetite
loss of interest or pleasure
lower back or side pain
seeing, hearing, or feeling things that are not there
sticking out of tongue
tiredness
trouble concentrating
trouble in breathing, speaking, or swallowing
trouble sleeping
uncontrolled twisting movements of the neck, trunk, arms, or legs
unusual facial expressions
Incidence not known
Anxiety
black, tarry stools
bluish color
blurred vision
changes in skin color
chest discomfort
chills
convulsions
cough or hoarseness
dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
dry mouth
false beliefs that cannot be changed by facts
fast, irregular, pounding, or racing heartbeat or pulse
feelings about hurting oneself or others
fever with or without chills
general feeling of tiredness or weakness
high fever
hyperventilation
increased in sexual ability, desire, drive, or performance
increased interest in sexual intercourse
increased sweating
large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
loss of bladder control
lower back or side pain
nausea
pain
pain or discomfort in the arms, jaw, back, or neck
restlessness
seeing, hearing, or feeling things that are not there
severe muscle stiffness
shaking
sore throat
sores, ulcers, or white spots on the lips or in the mouth
swelling of the foot or leg
swollen glands
tenderness
tiredness
unusual bleeding or bruising
unusual tiredness or weakness
unusually pale skin
vomiting
Side effects not requiring immediate medical attention
Some side effects of carbidopa / levodopa may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects.
Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:
Less common
Acid or sour stomach
back or shoulder pain
belching
body aches or pain
burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
diarrhea
difficulty having a bowel movement (stool)
ear congestion
headache
heartburn
indigestion
loss of voice
muscle cramps
nasal congestion
runny nose
sneezing
stomach discomfort, upset, or pain
unusual dreams
weight loss
Incidence not known
Abdominal or stomach distress
bad, unusual, or unpleasant (after) taste
belching
change in taste
dark sweat
double vision
enlarged pupils
feeling of warmth
hair loss or thinning of the hair
lack or loss of strength
redness of the face, neck, arms, and occasionally, upper chest
seeing double
skin rash, hives or welts, itching
Since Levodopa increases oxidative stress and homocysteine levels it likely contributes to progression of the disease process, but that seems to be okay with neurologists who prescribe it, assuming they are even aware of those two facts.
The list for side effects from HDT does not even come close to these known side effects for Levodopa, yet levodopa in conjunction with Carbidopa has been the gold standard treatment for PD for 50 years and doctors readily prescribe it for their patients despite these side effects. Levodopa went through the required studies to be approved, even with these side effects. I have heard many of these side effects reported on the forum, but I understand that this is the best treatment current science has to offer as a first line treatment. From reports on this forum, no one is mentioning these types of side effects from HDT after years of use and those same people, if asked to stop taking HDT, don't seem to want to.
You can wait for those studies on HDT, but it seems pretty apparent that those studies are not going to occur.
Red light therapy is hurting us? “Red light therapy has been in use for over a hundred years. How much longer do you think we should wait for someone to figure out that it is hurting us in some way?”
Search Pubmed for red light therapy where you will see studies dating back to 1924, but this is just PubMed. Studies were conducted before this. Obviously the technology has advanced over the past 100+ years, but the point I was making is how long do you wait before you can say a treatment is safe enough to use regularly.
My father has pd too, diagnosed just two years ahead of me. His dad had it, and my mothers mother had it as well. We both know what lies ahead if we don’t do our best to derail it. I wish he would adopt 1/10 of your attitude, health and mind and body plan. I on the other hand, am so appreciative of your willingness to share your fighting spirit and plan. I am a big fan. Thank you! We are all learning together
Great post and summary. I feel your condition and scenario are practically the same except more disciplined, organized and have a clarity to it.
I find when I'm playing games socially tennis,cards for money, my symptoms fade to the background. It occupies my mind for hours i get no symptoms. When I lay around trying to sleep that when it's worst. It's absolutely exhausting, a great diet helps with that.
5 yrs into this I've learned to let go of a successful career I've spent 20 yrs dedicated to. For my family I need to get better. I'm not a strong soul by any means. My life has been filled with hard work but luck and privilege. My luck ran out I guess,or maybe a higher spirit is saving me from myself with this condition. But my 2 beautiful children keeps me fighting and my wife won't let me quit
I'm looking into Fus clinical trials, assessment on 4/27 ,in NYU. Then I'm planning to go to Switzerland to weigh my options, compare notes and do some due diligence. Hopefully my reporting of those experiences can help some in the same situation.
I'm a fan of your approach, your optimism and your selfless drive. Thank you for this
Thank you Fightolive.I agree with you. The best definition for me of feeling good is to be able to operate without constantly thinking about PD and the limitations that it imposes on us. That can indeed happen when your mind is intensely occupied with something else.
In terms of sleep, I found that the French company Pharma Nord sells a type of melatonin that is particularly effective. It both helps me fall asleep and fall asleep again if/when I wake up in the middle of the night.
I think you make a very important point when you say that "maybe a higher spirit is saving me from myself with this condition".
Good luck with FUS. I would love to hear how it goes.
So sorry that you are experiencing that. I find that tennis helps in many ways, cardio ( I hate treadmills), hand eye coordination, strategy, all keeping my mind occupied away from focusing on tremors which are at worst when resting. I'm not a movement expert and i do not know how you are falling, may be due to related or unrelated symtoms, time of meds not kicking in yet, or speed of the competition. But falling is serious and can lead to injuries that can exacerbate your progression if you're unable to move or exercise as a result.
I would take it slowly, try to understand why you're falling, it may be wise to find exercises that are safer.
Thank you so much. That was very helpful and inspiring. Do you mind sharing the dose and brand of melatonin you take? My husband with PD has a horrible time sleeping. Thank you, again.
It has an immediate effect in helping me fall asleep, and fall asleep again if/when I wake up in the middle of the night (I always keep one on my bedside table during the night!).
This is purely for information and I recommend that you ask for medical advice before using it.
That’s a bit odd. I can understand niacin with tryptophan but with melatonin is surprising. Niacin does have anti anxiety effects bc it increases seratonin. Niacin is part of the metabolizing process of forming serotonin from tryptophan. And tryptophan is a precursor to melatonin. I think that niacin and tryptophan could be good together as that should help increase melatonin and serotonin production.
Actually Despe, since your Hubby reacts poorly to melatonin you might want to try tryptophan to help facilitate his body in making more melatonin.
Notice the product contains only 0.29mg of melatonin, a tiny amount. Such a small dose of melatonin should not cause higher dose melatonin side effects that many PWP report. You can easily replicate it with a chewable melatonin 1mg or less (can cut Trader Joe’s melatonin) and combine it with some of your husband’s chewable Niacin while making sure he is not deficient in tryptophan. Using c/l worsens defective tryptophan metabolism in PWP but If you opt to test supplementing it, you need to separate it from c/l intake.
I've tried inositol around 2018 but didn't notice any particular benefit myself so I stopped and have a big 8oz Jarrow powder tub still. I'm aware it's very effective for others including for PCOS and mood disorders but I think I might've been rate limited by brain uptake of choline, which is helping with citicoline and alpha-gpc. I'll revisit it again later after the current acetylcholine and bacopa personal trial. healthline.com/nutrition/in...
Thanks, Rescuema. Reading about L-Tryptophan, "L-tryptophan is needed for the synthesis of niacin (vitamin B3) through its role as a provitamin, and niacin. . ."
He already takes 300mg chewable Niacin. I could just add L-tryptophan instead of Melatonin (he takes 1mg of chewable Melatonin). I don't know if his Tryptophan metabolism is defective although our diet is rich in Tryptophan. When is the best time to take Tryptophan? He takes his Niacin in two divided doses, but not before bed.
You're already aware that l-dopa shouldn't be ingested with foods high in proteins or it'll interfere with the med efficacy. It goes both ways, and you should space out the supplementation just as you need to avoid taking c/l at the same time with B6, at least 2 hours or more. Tryptophan should be taken at night. I personally prefer niacin before bedtime because it affects my glucose metabolism otherwise, but you can also choose to take a smaller dosage throughout the day.
"Tyrosine as well as tryptophan decrease significantly after treatment with L-dopa, thus showing a competitive action of L-dopa to other aromatic amino acids on human brain uptake. "
"Some symptoms of PD such as fatigue, sleep dysfunction, and mood changes appear to be consistent with the deficiency of vitamin B3 (Wakade et al., 2014). This deficiency may be related to carbidopa interaction, defective tryptophan metabolism, and stresses of night sleep disorder (Wakade and Chong, 2014). The levodopa (L-DOPA) medication that is commonly used to treat PD symptoms depletes niacin levels by interfering with tryptophan breakdown. Intraperitoneal administration of L-DOPA (100 and 200 mg/kg) in rat brain decreases tryptophan, tyrosine, and serotonin to their lowest levels after an hour (Karobath et al., 1971). Tryptophan metabolism is also impaired in patients, as reported in individuals who were diagnosed with PD but had not yet been treated with anti-PD drugs"
1. His complaint is that he has to wait at least an hour after he takes each dose of 1/2 t C/L + MP or 2 hours after he eats to take his dose of C/L + MP. It took him a while, but he knows it now!
Tryptophan: Taken an hour before bed to replace Melatonin. Am I a good student?
Yes, you can choose to do that or try 5-HTP (or both in small amounts), but either way, you need to be very careful and start with a small dosage. Tryptophan --> 5HTP --> Serotonin --> Melatonin
"5-HTP is generally recommended over l-tryptophan because it crosses the blood-brain barrier at a higher rate, is converted into serotonin more efficiently than l-tryptophan, and has a more pronounced antidepressant effect."
"Q: Can I take Natrol 5-HTP if I’m taking a prescription drug to balance my mood?
A: Please consult your healthcare professional prior to using Natrol 5-HTP if you are taking any prescription drugs including drugs for depression, migraines, Parkinson’s disease or psychiatric disorders. Do not use if you are pregnant, lactating or under the age of 18 years."
Taking 5HTP without any other sups or meds is the correct way to take it. Right?
As I've mentioned in older posts, you must be careful with 5HTP, and the same applies to tryptophan when used in conjunction with c/l. As to the typical 100mg+ OTC dose as in the case of Natrol, consider starting with a much smaller dose of around 25mg separated from the meds and only titrate up as needed to get around potential competitive inhibition of dopamine. If he doesn't respond well, switch to tryptophan.
Since c/l induces serotonin deficit over time, it's a good proactive measure for someone as dedicated as you but finding a good balance may be challenging so err on the conservative side.
Sounds good Tina. Carefully monitor and if you decide to titrate up, do it on weekly basis or more. If you notice ill side effects, switch to tryptophan that'll also contribute to de novo pathway for NAD+ in addition to serotonin.
Hi Michel- we just got the melatonin and my husband tried it last night for the first time and he was very pleased! I guess the sublingual route absorbs more efficiently, but he went right back to sleep after taking the middle of the night dose. Thank you so much for sharing this information. 💤💤💤
I have mastered the sleep problem with slow release melatonin and CBD oil.If I wake in the night I get straight back to sleep, and I don’t act out my dreams all night.
Thank you very much Astra. Melatonin comes to my rescue most nights. CBD oil is on my to do list if things deteriorate. Can you please share with us which oil you are using?
It doesn’t really have a brand as it is a prescription from the pharmacy. Australia is a bit behind on legalisation!All I know is that it has almost no THC - it’s all CBD so no feeling of getting stoned (which I dislike). They call it Full Spectrum.
Recommended to me as one of the best by a local retailer. Being 70kg I use 14 drops of the 3000mg. It’s full spectrum. That plus melatonin, I get 7 hours continuous in most nights. Remarkable difference.
However i am actively considering fortifying things with the addition of CBN. It’s early days and the focus has been on AZ, but PD is mentioned here.
Extract: “Decades of research on medical cannabis has focused on the compounds THC and CBD in clinical applications. But less is known about the therapeutic properties of cannabinol (CBN). Now, a new study by Salk scientists shows how CBN can protect nerve cells from oxidative damage, a major pathway to cell death. The findings, published online January 6, 2022, in the journal Free Radical Biology and Medicine, suggest CBN has the potential for treating age-related neurodegenerative diseases, like Alzheimer’s.
“We’ve found that cannabinol protects neurons from oxidative stress and cell death, two of the major contributors to Alzheimer’s,” says senior author Pamela Maher, a research professor and head of Salk’s Cellular Neurobiology Laboratory. “This discovery could one day lead to the development of new therapeutics for treating this disease and other neurodegenerative disorders, like Parkinson’s disease.”
Now be careful. CBD is legal in many places (not the Gulf obv.) so check before you buy or fly. Despite what the article states CBN’s legal status is far from clear as it’s derived from THC but has no psychoactive component. Google suggests it’s legal in some EU countries but I can’t find definitive list anywhere. Unsurprisingly I found a supplier in Switzerland. Who knew!?
Slow release melatonin; that’s a good idea. Maybe that could help me sleep through instead of waking at 3 am every night. Do you have a particular brand that you like? I’ve experienced a lot of variability with melatonin.
The slow release seems to help me drop back to sleep after the 3am wake up, and some nights I don’t even wake until morning. It makes such a difference.There are 2 brands in the pharmacies in Perth and they seem much the same. The dose is 2mg.
Salut Michel,Well done, it's a really well made project, loaded with good energy and discipline! I love your dedication.
I checked immediately the website of Pharma Nord and wondered which melatonin product did you chose, the Bio-Melatonin complex or their pharmaceutical melatonin? Sleep... the holy temple...
Bydureon (a.k.a., Exenatide), a repurposed Type 2 Diabetes drug is now in third-stage trials in UK for stopping Parkinson’s in its tracks — results expected 2024. Testing — mice, open label, double blind — has been going on since 2010 and it has been positive every time.
According to a very sensitive test, Homeostasis Model Assessment for Insulin Resistance (HOMA-IR), 2/3 of Parkinson’s patients are supposed to be insulin resistant. IR may be treated with Bydureon (Exanatide). Just an angle that might get us one step closer to getting Bydureon.
South Korean researchers have learned how to dial our cells back to stem cell stage -- and are now administering monkey stem cells to parts of their brains that are short on dopamine producing cells -- with the hope they will fill in and take over the job.
Your attitude, perseverance, and determination are an inspiration to all, not just PWP. Your schedule indicates that your skills as an executive are still there! Just different scope.
May I make a suggestion? You may add your schedule on your avatar.
You are an "asset" to HU! "Hold your head up" as I constantly remind my husband.
Hi Michael. Thanks for taking the trouble to share all this information. I think you are absolutely on the right track, but my only quibble would be with your timetable. Where would I fit in shopping, cooking meals, baking, cleaning the house etc etc??
Your point is entirely valid. I am fortunate not to be working and to have a partner who helps me in an amazing way, which gives me the time to do what I do. My program is only an example and I think that everyone should design their own protocol taking into account their time availability and physical capabilities. If I only had an hour and a half per day, I would probably spend 45 minutes exercising and a good half hour meditating. I would use the rest for training my voice and my hands.
Thanks very much Michel. Changes lives I’m not sure if I understand it correctly but am I right that you have facilitated No Silver Bullet? By chance is there a subscription link?
Hi binnyrox. That is correct. Please send an email with your name and email address to nosilverbullet4pd@gmail.com and you will get invitations to all our events.
I like your post and summary. I have read your document carefully and the comments on this thread.
I wish you success in the holistic programme you have adopted, especially for this change in the way you face life towards an "anti-Parkinsonian" lifestyle.
I would like to draw your and everyone's attention to several points:
1. The change in the view on the disease, opening the door to "possible" cases of significant improvement, healing/healing, etc. The pioneering example of Annetta Freeman in the 1990s (ceri.com) and the work of Robert Rodgers from 2004 onwards are essential, in my opinion.
2. We see in certain parkinsonisms due to toxic, psychogenic, vitamin deficiencies, epigenetic problems, an important path towards a more effective treatment with less damage (iatrogenic).
3. The role of elevated homocysteine and the recommendation of vitamins B6, B9 and B12 by neurologist Ahlskog in his books and to his patients.
4. The use of vitamin B2 in higher doses than those used by Coimbra in 2002 (90 mg), as 200 mg are used for migraine in children (and 400 for adults). I find it astonishing that these doses have not been tested on Parkinson's patients in these 20 years.
5. The use of vitamin D3 (including calcitriol) is so far the only thing that has been shown to stop the progression of Parkinson's disease, along with physical exercise. Suzuki's 2013 study was with only 1200 IU. It is not unreasonable to think that with the 10,000 IU daily (used, recommended or reported by neurologists Coimbra, Perlmutter, Hiller, Fullard and Duda), the protective effect would be even greater.
6. And a return to Nature, for I am convinced that only in Nature can we find the remedies to heal the complexity of Nature damaged in some way that we call Parkinson. Aided of course by the best of the Laboratory and today's technology.
Mediterranean diet or similar, sunshine, exercise, the lion's mane mushroom to regenerate the brain and nerves, milk thistle to protect the liver...
7. Along with avoiding neuronal loss (or its possible dormant state as suggested by Heo and his team in their 2020 study), avoid denervation (perhaps with sublingual or intravenous vitamin B12, alpha-lipoic acid -Ziegler in DEKAN study-, etc.).
In the last decades so many "dogmas" about neurons, the brain or the Parkinson's labyrinth have fallen, that it seems to me legitimate to wonder if almost all the others will not fall very soon... neurogenesis impossible in adults for 70 years (until Erikson 1998), genes inexorable in the face of epigenetics (Schaffner 2019, with B12 and LRRK2 gene)...
Thank you for your testimony and lots of encouragement.
Michel thnkyou for a very concise treatise on what you are doing - I have been on a similar track - exercise, mindfulness, stress elimination, tai chi, better eating, hi-dose thiamine, red light therapy etc - I am sure it is working. The only issue is I am not sure which part is working! Having said that all the changes I have made to my lifestyle are much better for general health so I am happy to go along the path I have started.
A question to you - I have been reading about PS128 and am keen to try it - can you tell me exactly what you take in this regard and where you source it? I am in Australia and have been having trouble tracking down a suitable supply. Many thanks.
Hi Puddi. Re PS128, I have been using the product below. I realise it does not have great reviews on Amazon but it has helped me from a digestion standpoint (neuro biotic benefits are more difficult to assess). I also noticed that it is out of stock at the moment!
In a previous post hanifab recommended a brand called Solace. They might be a better supplier for your location but I noticed that they are also out of stock at the moment!
If anyone has other suggestions I would be very happy to hear them.
Have you fermented any to confirm they are still live on arrival? Brexit delays may mean they deteriorate in transit. It's out of stock here in France too, which is no surprise as it all ships from the same warehouse in Beaune sur Arzon, in the middle of France
Hi WTP. Im not sure how to ferment them but they come wrapped in insulated packaging and seem to be working for me. I would welcome a more local alternative (like Symprove) but have been unable to find one so far.
Thank you very much for a clear, beautifully presented summary, please keep us posted on how you go and what you learn along the way. I have persuaded my HwP to try the Coronet, PEA, curcumin and a Vitamin B Complex. He can't exercise because he has terrible (unrelated) foot and ankle issues requiring surgery that he just can't face because it would entail 6 months of being virtually house-bound post-operatively because of our steps and his problem with balance.
Thank you for this! This type of practical information is just what I was looking for. I was diagnosed 5 years ago and do a lot of research but find it hard to dig the wheat out of the chaff 🙂
Hi Nadjmath. You are most welcome. There are of course things that I don’t do (like singing and dancing) that would likely be very beneficial, and some things that I do (like red light therapy or high doses vitamins B1) that won’t necessarily work for everyone. The main message is that we should be actively in the driving seat, not on the passenger seat 😀
Thank you for sharing your excellent protocol and for all you do for the PD community with NoSilverBullet. It’s very inspiring.
Can I ask the names of your nutritionists in London, and whether they specialise in PD/neurological disorders? I am looking for someone to help my father who was diagnosed in 2012.
Hello Mlvh,Thank you very much for your nice message.
The nutritionist I've been using is Lucille Leader. She is an expert on the personalised nutritional management of Parkinson's disease (lucilleleader.com/). I would particularly recommend her seminars (I attended one at the start of my diagnosis in 2020).
She is very experienced and professional but you will probably also need to consider what supplements you may want to take in addition to the ones that she prescribes. Eg high dose B1 in my case.
Hi Michel, Thanks for sharing this presentation and hosting the webinars! I have read the presentation several times and find it very inspirational. How did you start with the various treatments and determine whether they're effective on their own (i.e HDT, red light, PS128)? I'm located in the USA and those treatments aren't approved by the FDA for treating PD. My neurologist is very conservative and advising me to wait until approved.
Maybe your neurologist is indeed a bit conservative. My neurologist is of the opinion that it is not because something hasn't been fully trialed that it doesn't work. Having said that, it is important to check with your medical team that what you want to try will not harm you. HDT, red light and PS128 are great examples of this. Of those three examples, the first two are helpful to me while the third one had no impact. So, my advice would be for you to carry on reading forums like this one to get firsthand experience from other PWPs as well as access to interesting research articles. This should allow you to determine which therapies might have some potential and which ones probably not. The next step is for you to then check with your medical that what you want to experiment with is safe for you. On this point, I think it is critical that you consider finding someone who is slightly more open-minded than your current neurologist. As a final point, I would say that it is important to remember that all of us are different and will react differently to various therapies. Furthermore, it is very likely that it takes more than one single therapy to help manage our symptoms. There is probably no silver bullet 😀
I agree that I could have better phrased what I meant to say, which is: as a newly diagnosed pwp, it is tempting to try to delay taking meds at the start. Instead, I think one should not delay taking meds but should be well informed on them, something for which the book above was instrumental in my case.
Sometimes an old post emerges on HU that is surprising to relatively recent participants. In fact I only knew your NoSilverBullet Zoom contributions, which I follow with great enthusiasm. Many thanks for this!
Because we are about the same phase and see what a lot happened in a year, I'm curious if you can give a short update on your situation. Especially because you are so consciously and intensively involved in your PD control, we may be able to benefit from your latest experiences and insights. What changes have you made and are there any interesting additions to your PD toolbox? 🙏
Hi Esperanto. Thank you very much for the kind words!
There is an updated version of my routine in my bio (updated 10/22). It can also be accessed via the following link: drive.google.com/file/d/17y...
I am planning to update it once a year, around the end of the year, but here is a quick update including some of the new things I have been doing:
- meditation and relaxation techniques: nothing new there, I have continued as per my routine and have managed to keep anxiety at bay,
- exercise: I am doing weights/stretching on a daily basis for 50 minutes and 45 minutes of Nordic skiing (cross training equipment). I have increased the intensity of Nordic skiing quite a bit following Bas Bloem's presentation.
- nutrition: I have increased the intake of fruits for breakfast and have started practising fasting (16:8) following Matt Phillips' presentation. I started taking ginkgo biloba based on a very interesting piece of research by L. Mischley: mdpi.com/2072-6643/15/4/802
- other: I have acupuncture every three or four weeks mainly to take care of my recurrent back problems. This has helped my back problems but I am a bit uncertain as to the impact on my symptoms.
For anyone wanting to see the videos mentioned above, please visit and subscribe to our YouTube channel: youtube.com/channel/UCN2A0v...
You can also join our next live webinar with L Mischley on the 15th of May (the invitation is on our YouTube channel).
Merci! I admire your drive to do the most to stabilise your situation. Perhaps even improve compared to your ‘old’ life, by making such conscious choices for a healthy lifestyle. Your approach motivates me a lot, it seems that we are largely on the same page, but I am probably a bit more casual on a number of points. In part, that has to do with the fact that I just don't have enough energy to do everything. There are still so many dreams I want to realise, for which there is simply too little time. I estimate that I sail at less than half force, so I am surprised at where the hell do you get the energy and time required from..? 🍀
I think it is due to a combination of having had/being able to stop working and having a wonderful partner (who I will marry in September!) who has been helping me massively. Also, I believe that the meditation/spiritual aspect plays an important part in giving me the strength and energy to do what I do. Everything is connected. I wish you all the best and I hope that you will be able to fulfil as many of your dreams as possible!
Thank you for your nice words. But it remains difficult...
Challenges and exercises, on the one hand, are good to keep moving and not get isolated socially. A boring life with regularity rest and stress avoidance, on the other hand, helps me to stay balanced. Especially when I'm feeling relatively well and my medication working as it should, I have a tendency to overdo it. Today I really need to get a start on that renovation job otherwise nothing will ever happen to finish that list. Still helping a client with a difficult problem, even though I have been declared incapacitated for almost 2 years. My wife so enjoys those dinners with friends, three times this week should be possible. Supporting a small idealistic project, who else should do it. The grass does grow very fast, so let's get on the mower before it starts raining again. The 4-hour long car ride to our pied à terre in the city takes more and more effort especially with the neuropathy in my feet, but forces me to train multitasking, etc. Emotions, attention and tension exacerbate the twitching other symptoms quite a lot. Stress hits when you only get that screw in after it has fallen to the ground seven times. Meanwhile, all the activities makes you forget to take the medication and you put off the meditation and the Qi gong and the long walk with the dog in the woods today and you are in OFF mode without noticing.
Yet I fear having to live a suitably dull life, devoid of action and challenges, which in the long run might make me handle even less and less stress. And of course, the fact that I am in a hurry also plays a part. Now I can still do all this, although sometimes it takes a lot of effort and pain, is agonisingly slow and the recovery time can take days. Of course I know the disease is experienced differently by everyone, but perhaps the differences are not as great as we think. Is it perhaps the different circumstances and treatment that magnify the differences.
So the dilemma is whether the long-term impact of these 'excesses' is healthy . Is it indeed a kind of workout that helps you deteriorate mentally and physically slower, or does it actually backfire?
I agree that finding the right balance may not always be easy. I personally believe that activities that generate chronic stress should be avoided (eg toxic work or social relationships). It doesn't mean that we should aim for lives that are entirely exempt from stress, which is probably impossible anyway. Episodic stress is unavoidable (eg for me, when speaking in public, travelling) and is often the price to pay for pleasurable activities such as helping others or enjoying holidays.
It is also important to be compassionate with oneself and to try to focus on activities that we enjoy. A single activity like gardening can be seen in two ways: as a stressful chore or as a moment of joy and relaxation. It all depends on your perspective. 😀
Michel0220 - This is so awesome. Thank you. I have a few questions...
1) Are things still going well? How is progression?
2) Are you taking any meds/levodopa/etc at all?
3) How much B1 do you take?
4) Do you know how many minutes a day on average you get with a high Heart Rate? Meaning like 135 and above? I know that a high HR is important in some studies.
1. Things are going pretty well, thank you. The main symptom that has progressed is the rigidity in my hands and forearms. For the rest, things are pretty stable and sometimes better (no constipation, slightly better balance, walking slightly better). I do 50 minutes strength exercises and 45 minutes cross trainer each day, also close to 1 hour meditation/relaxation and I remain very focused on nutrition as per my presentation.
2. I am taking 12.5/50 mg Sinemet three times a day. My neurologist is however advising me to increase the dose (he thinks that I am undermedicated) and to look at the extended release version for the night. I am considering doing this at the moment. I am a firm believer in taking a holistic approach to managing our symptoms, but medical drugs have an important role to play.
3. I am taking 2.5 g of B1 each day. Please be aware that some famous clinicians like Pr B Bloem are not in favour of this. Everyone really has to make up their mind on this.
4. Heart rate may not always be the best measure of reaching the right level of exercise. This is because people with Parkinson's may not always be able to reach high levels of heart rate. A better way of making sure that you are exercising at the right level is that you should be slightly out of breath (be able to answer some short questions but unable to hold long discussions).
For anyone interested in finding out what I do to slow down progression and manage my symptoms, please have a look at my bio where you can find my routine.
@michel0220 - thank you for the detailed response. I really really appreciate it. The more information I gather from people that are slightly ahead of me the better.
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