I played bass guitar with a band last night. I do this gig once a month since a year ago. I hope you can tell from the video that I enjoyed an entire night of no symptoms! This never happens. Sometimes I have moments that are better than others, not entire nights. Here’s some details. I hope this can be duplicated!
I slept 7 1/2 hours.
Had 1 cup of coffee with heavy cream, Irish butter and coconut oil in it.
Took my first dose of sinemet 2 hours later than usual.
Also took the following meds and supplements - 1 mg Artane, 100mg Provigil, 600mg NAC, fish oil, vitamin d + k2, potassium 99mg, 10mg lithium orotate.
took a walk for about a mile.
drank about 75 oz water with salt added throughout the day.
had 1 cup plain greek yogurt with a scoop of whey protein isolate, 5mg creatine , and a handful of blueberries.
Took my second dose of sinemet 2 hours late, not on purpose but because I was running around doing errands, also took 1000mg thiamine and 500mg magnesium, 99mg potassium.
Ate about a cup and a half of fruit salad consisting of strawberries, pineapple and tangerine.
took half of my evening dose of sinemet 2 hours early along with 200mg motrin for back pain.
got to the gig, loaded in and sound check.
1 glass of red wine with lots of ice which I drank over the course of 3 hours.
took the rest of my evening dose of sinemet and artane.
played 3 sets, about 20 to 30 minutes each with a half hour break in between.
no idea what the magic bullets were but there it is. FYI, I was diagnosed with Young Onset Parkinsons in 2013.
EDIT - I forgot to mention, I used a 7mg NIcotine patch. Ive been doing that for about 2 months, daily.
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bassofspades
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nicotine patch information-how much?where can you buy it?what does it help? Thanks! Sounds like you had a great time! Wishing you continued success. Are you working functional doctor on supplements?
I’m going to try to answer all of your questions. I use 7mg nicotine patches, which I think is the lowest dose. I got them for free from tobaccofreeflorida.org , they also sent 14 mg patches that I cut in half with scissors. The patches were free of charge, but I think there’s a limit to how many they’ll give you. You can purchase them as well, from any drug store or health and beauty store like walgreens. I think they are also available at the health department.
It’s hard to describe exactly how it’s helping, physically, but a couple of things that are happening are decreased agitation, better concentration, cognition and mild appetite control.
I am not currently working with a functional doctor. I just immerse myself in medical studies and research. I read everything I can get, watch every video, TED Talk, podcast, you name it. Anything that sounds reasonably safe and logical, I will try. Eventually I will hit on something that actually helps. And what’s the worst that can happen? I already have Parkinsons disease!
Concerned about you saying : "14 mg patches that I cut in half with scissors" - I've read some place that cutting nicotine patches can cause rapid release of nicotine and therefore not recommended. But it may depend on the brand, so I would check the label just in case.
Thanks friend! I jammed on that song before, yeah it’s fun to play! But the guys in this band aren’t really that skilled, so we have to keep the selections limited to the most simplistic songs possible. Unfortunately! So AC DC it will be!
Funny you should say that. I sold all of my 6 strings and bought a bass about 4 months ago. But I couldn’t resist buying a new acoustic last week and a benefactor couldn’t bear to see me without an electric so gave me a Telecaster last week. A good friend.
It happens to me when I dance that I have no symptoms of pd. They are moments of pleasure that make us produce a lot of dopamine and distract us from the symptoms. To be true they must always occur under the same conditions, otherwise they are normal cases of random improvements, like the one Michael J Fox had when he went to Bhutan.
I do this gig once a month and it’s been a year, exactly, since the first time. But the very first time, it was the opposite. I was 100% shaky and symptoms were out of control. At that time I was eating 100% Carnivore as well. The next day I had an epiphany: that I must’ve been depleted of electrolytes. So I ate a banana, an apple and some berries and immediately felt better.. Ever since then, I’ve been adding fruit to my Carnivore diet and it’s been helping with my gigs. This last gig, I didn’t want to eat a lot because I didn’t want to look like I had a belly, so I just ate my yogurt, protein powder and a little bit of fruit. So I suppose that makes consistency, but I’ll try it again exactly that way at the next one April 12 and then I’ll report back here!
I think you've answered my question. I was about to ask if that was all you eat as it did not seem much. What made you decide to eat carnivore? Most of the research I've seen says the Mediterranean diet or Keto for some are best for Parkinson's. I was listenening to Dr Mischley a couple of evenings ago and she has had a statistician working on the diet and has come up with some very interesting data which she is going to report on next month. Dr Paul Saladino, a proponent of the carnivore diet, had to modify it after 3 years as it altered his biochemistry and tanked his testosterone so do be careful.
Im always tweaking my diet and everything else. I decided to try carnivore for a month, but felt so amazing after eliminating all those toxic plants that I kept with it. I only recently added a small amount of fruit per day and occasionally a bit of potatoes and it makes me feel better.
THe Carnivore diet is an ELIMINATION doet. You are eliminating all kinds of plant based toxins, like Nightshades and Oxalates, among many others. Gluten, Roundup and the like are bad news, wreaking havoc on your gut and nervous system. Look up Mikailia Petersen's Lion Diet Ted Talk. Here it is youtu.be/0ka9WBEijhk?si=Rrq...
Dr Mischley also did studies on Lithium Orotate and is quoted multiple times in one of my favorite books, a.co/d/fDkjahi
I did the carnivore diet myself for 7 months for a gut problem in desperation as I had tried everything else. I did it on the advice of a nutritional guy for whom it worked for the same issue. I enjoyed it to begin with but did not feel well on it in the end. I was not able to eat organ meats due to a histamine problem but I did take supplements. I had a lot of trouble introducing veg back into my diet that I felt I needed and I still don't tolerate any grains, pseudo-grains, dairy or gluten. I don't think dairy or gluten are good for most people anyway. I do not have PD myself but am here researching for my husband.
Yes, I know about glyphosate and eat organic as far as possible. The reason that many people react to the so called toxins in plant foods is because of a poor gut microbiome. All the latest research shows that plant foods improve the gut microbiome.
Thank you so much! I divulge all secrets here, I’m 253 Lbs and 6’2” tall. I used to be 279 lbs but I’ve been doing mostly Carnivore diet for the last year and a half but added some fruit for electrolytes. I don’t typically eat such small amounts but I just wanted to have a smaller belly for the gig, so that’s all I ate that day. Usually I eat 3 eggs and a pound of beef or a rack of ribs!
I had success gaining weight when I added 2 T organic olive oil to my protein smoothies that I make 1xday. My low was 113 and I am at 127 which is still light for a 5ft9" female. It is around my old weight so I am happy. All the exercise I get seemed to require about 2000 cal/day. That's easy to obtain unless you eat a healthful diet. I eat 4x a day and try to fast 12 hrs at night. Everyone is different. They say tremors can use up lots of calories. Best wishes for your gain! Enjoy coconut oil, butter, tahini, yogurt, etc. My problem is food sensitivities. Meats are hard to digest and I'm sensitive to many foods, including histamine. I'm striving for rotating foods to 1x every 4 days.
Great news "Lemmy" - I will try some of your protocol! I'm a guitar player and my band plays (or rehearses) every Friday night - although my tremor is increasing lately. : (
I used to have great chops on guitar as well, and drums too. But my hands get shaky on the skinny strings and my kick drum foot suffers from freezing. 🥲
Thank you for the post. That’s uplifting! Getting my bass playing back up to gigging standard is on my list of jobs for this year - nice to know it can be done so long after diagnosis.
The tinnitus I have is nothing to do with PD. I trace it back to Motörhead on the No Remorse tour in 1985/6. I’m guessing from your user name that you’d also see that as honourable
I have been to multiple Mötörhead concerts and Manöwar too! Last time I saw them it was so loud, plaster was falling off the ceiling at the old Agora in Cleveland. We actually had to leave before the encore, sad to say! They are great bands though!
Great work bassofspades. I hope for results the same as you have achieved with your strategy. Great to see. Please keep us updated with any more insights on what you think might have made the difference (maybe it was the ice in the red wine 😂. I’ve already been using this strategy all summer.) I does seem you have made an important breakthrough. I hope it continues 👍😃
Hello! First of all, a sincere greetings for your improvement! It's a moment of genuine joy!
Enjoy your good time!!
Also, your gig looks quite cool
May I ask you a few questions, please, taking advantage of fresh memory:
- How can I recognize you in the video?
- someone here said that you were on the ketogenic diet for a year. When did you start the bullet coffee ?
Did you do it all together, or did you start the coffee more recently?
Did you get any improvement from the keto diet? I'm asking all those questions because i red there was such a good rate of response in the keto diet study , and I think this bullet coffee is also keto inducing. Do you think it's a synergy between both?
- Do you exercise?
- do you think that the vibrations of the gig has maybe had some effect on your symptoms? I refer to the vibrotactile stimulation coordinated reset of Peter Tass. Which are supposed to be mechanical vibrations applied to a body area on the skin. You play the guitar, right? Not bass? And I understand you play regularly now for a year what about your playing history? Can you please say when you started and when you stopped before re- starting a year ago? But I understand that what you see is an association with your bullet coffee consumption.
Hello and thanks for the kind words. I will try to answer all questions because I want everyone to succeed.
I am the bass player in the video. I have been playing bass for over 40 years. I think the vibrations of the bass, especially the low E string at 40 hz, might be a factor, possibly. The first time I did this gig, a year ago, I was the opposite, 100% symptomatic and beyond control, but I was playing through a very small and distorted 40 watt amp. This time it was a 600 watt amp with a big speaker cabinet.
I have been doing keto since long before my diagnosis, but not consistently. A year and a half ago I went Carnivore but started adding fruit more recently due to electrolyte issues. Adding coconut oil and butter to my coffee is to increase the fat content. However, coconut oil is a bit controversial. On the one hand, it’s medium chain triglycerides are reportedly good for the nervous system, but in my studies I have seen cases against it as it contains phytic acid, a plant anti nutrient that impairs mineral absorption.
I exercise an hour a day about 5 days a week, hitting weight machines, dumbbells, barbells, elliptical machines and walking.
I do think it all compounds synergistically. Just try everything you consider reasonably safe!
- vibrotactile stimulation: I don't think that watts amps matter although I am not a vibrotactile stimulation CR expert. In Tass' design, its handgloves are stimulating the patient's fingertips.
So wonderful to read your post as I enjoy my morning coffee. (As I was writing "morning" spellchecker changed it to "morphine coffee". A little sick humor for a Parkian, that! ).
Anyway, I digress.
I can't say how much I appreciate your diary for a day. Thank you so much for sharing it. It provides many nuggets of insight.
I do wonder how you survive on such little food? 1 cup yogurt and a cup and a half of fruit?? That would be one of 3 meals for me. Have you always eaten so little or is this driven by a new regimen?
I once called a pharmacy to ask if they could get me dissolving Apomorphine tabs, which is a legit Parkinsons medication, and they kept saying, “No! We’re not going to get you MORPHINE!”
😩 ugh.
I digress too…
I typically don’t eat such minuscule amounts. I do little fasts from time to time. Usually I eat 3 eggs, greek yogurt with protein powder, and a pound or so of beef, and a little fruit for electrolytes. I exercise a lot and I have to support these 💪 guns! Lol 😆
What a great story of the patient becoming the physician. I created ParkiBot.com for people like you (and me) who like quick, detailed answers backed up by scientific sources, for the questions we ask about PD. Totally free, non-commercial. If you like it, tell others. If you don't, please tell me how you'd like it improved. -- Dan
I copied and pasted your original post into ParkiBot, and it created the following output:
Start with 5. If you don’t notice a difference after 2 or 3 weeks, increase by 5. Reevaluate every 2 or 3 weeks and adjust by 5 up to a maximum of 20mg. That’s how I roll. I used to do 15mg a day but now I find 10 will do.
In order to truly understand what brought on this rockin’ symptom free evening of normality, we’ll need to get some PD mice that play the guitar and mimic everything you did leading up to the gig. I think we can skip the nicotine patches on them, as most guitar playing mice are smokers anyway. 😂🤪🤣
I have actually experienced the same sensation myself under various conditions. I am a model railroader and when I start working on a small project at my hobby desk, (not to mention running back-and-forth to a 3-D printer that I have), I often forget that I even have Parkinson’s and my symptoms dissipate tremendously.
I’ve also experienced the same sensation while doing yard work, mowing, raking, etc. I’ve done yard work for years so my brain resorts back to the tasks and the process at hand and I completely forget about Parkinson’s. My symptoms dissipate and even disappear even for a short period after the work is done.
I would add for tremor symptoms, I have been taking higher doses than normal of magnesium and for some reason it seems to be working. I have experimented on and off with nicotine patches, but have not given them a true test yet.
Maybe the secret to some enjoyment and fulfillment in life with PD is to find something you really enjoy or had done a lot of in the past. Such as hobbies, dancing, gardening, even exercise. I’ve never been much of an exercise nut, so for me it’s hard to find the motivation to do that. But I am motivated to get behind my hobby desk and work on my trains. And the symptoms go away for that brief period of time.
Immersing ourselves in hobbies and lawn care might trigger the body and brain to shift into parasympathetic mode. I get that too, the absence of symptoms, when cutting grass or soldering up guitar electronics (remarkably).
Magnesium supposedly relaxes muscle stiffness, so I read. Exercise, I have found, increases my symptoms, typically, except walking, which makes things better usually.
Thank you for your post. May I ask a few questions? I am five years into PD, not on any meds yet, but likely needing to start soon. I was keto for four years then switched to carnivore, but it has been slow due to oxalate dumping. The last four months has the dumping under control, but my tremors have gotten worse. I’m considering adding back in berries and maybe honey per Paul Saladino. I do add electrolytes to all my water. Questions: have you added honey? Is the 1000 B1 thiamine your sweet spot? How do you time your protein intake with regard to your c/l intake? Thank you again.
I also followed Dr Saladinos recommendation of adding fruit to Carnivore. Honey is good but I would not go too crazy with it. Its a lot of sugar and so is fruit. I tried electroyte supplements, the kind you add to water, but its all full of Stevia, which I read is not the greatest. I dont understand why they have to make everything so darn sweet. What I do now is just dump a bunch of nice sea salt into my water bottle. And some Cream Of Tartar, which is essentially Potassium.
As for the thiamine, back when I consutled the late great Dr Cosantini, he put me on 4000mg and eventually upped it to 6000mg per day. I felt great but it put me into hypertension requiring 2 medications. Once I figured that out, I stopped Thiamine for a year, started taking Potassium supplements and increased my salt intake, and with that I was back to a normal blood pressure. I started easing back into Thiamine wjile continuing to monitor my pressure. I started with 500 per day, now Im up to 1000mg and BP is still great. No BP meds!
Im always dumping oxalates as well, mostly getting crusty eyes, but I think thats all. I worry about oxalate kidney stones but guzzling water all day takes care of that worry.
Timing my protein intake is never a problem for me. My doctor says dont worry about that either, so I dont. I think the problem is the meds sit in your stomach while the enzymes are breaking down the protein meal, and this delays delivery of the medication to the small intestine where it gets absorbed. So take it before a meal with a little warm water or with something small and easy to digest and the meds will hit faster.
So glad you had such an awesome day! My husband,73, takes all the same supplements you take but pharmaceuticals are for high bp only. Will look up your information on the lithium orotate you both take. When you have a day like that and you felt great playing with your band is so.ething to be grateful for and hold on to.
thanks , anything else stand out as an obvious Game changer for you regarding symptom management . I am 57, YOPD as well diagnosed in 2018 but symptoms since 2003. I take the load of supplements, some of which you have noted. Always looking for add-ons that may make sense.
Yes. Focus on getting good sleep. A rough night is usually followed by a rough day. Also, look into iodine solution. I use Lugol's transdermally a few times a week. It's important in the dopamine transport system. It's so important that the gold standard test for Parkinson's, the DAT SCAN, used an isotope of iodine to visualize the DopAmine Transport system. That's what DAT stands for. It's hard to find studies on this and I have my conspiracy theories why that is.
we didnt want to be too sexy, it would distract from the intense shredding on our instruments! 😂😂😂😂😂 Anyhow, fat, grey bearded old men are allowed to have fun too! Aint ya never heard of ZZ TOP? The ages of the band members ranges from mid 30s to mid 70s! Im in the middle, 55. Where's your band?
The point is that I am over ten years since diagnosis and I can still turn a bass guitar into sawdust with my blazing chops. 🔥
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Have someone a natural alternative to mitigate the off periods on PD?
Sinemet? Too much or not enough?
