Apathy (in PD) is because of reduced dopamine. I am struggling with apathy.
Having a thought doesn't mean its true.
How to Maximize Dopamine & Motivation - Andrew Huberman
11 min
Living in SURVIVAL vs. Living in CREATION - Dr. Joe Dispenza
Motivational video By Dr. Joe Dispenza
14 min
Thanks for sharing this. Food for thought.! If only this was a little easier to do. Worth a try!
Mark, No doubt you’ve seen my posts before, but for what it’s worth, my husband’s main symptom at the beginning and along the way has been apathy…as in being in bed all day.
The two things that fixed it for a time were the Neupro patch and mannitol. The patch lasted for quite a few years. After that we tried mannitol (see my post). Mannitol lasted for about 2 years. Other improvements were pretty dramatic as well in both cases. My husband’s symptoms are more non motor than motor.
Gwendoline
I can relate to your post. I can't think of anything more destructive to my husbands health and well being than apathy. It trumps everything else in my humble opinion. Neuro told me that only old people get it. Also, PD patients with severe apathy don't care that they don't care so why would they request treatment? Haven't tried Mannitol. Had some issues with Neupro patch. Thank you for posting.
For apathy, Mannitol Balance has worked for my hubby. Helped with the facial masking and wanting to be more active. Having said that, this humid weather seems to put him in a fog of sorts and he's happy to just do stuff on his computer with needing reminding to get up get moving.
Thanks for the links - going to check them out.
all I can say is yes, me too. My husband gets me moving, but the pull to sit around is strong!
Marc,
For some people, Ginkgo Biloba Extract (GBE) can help with apathy with minimal if any side effects as discussed here :
ncbi.nlm.nih.gov/pmc/articl...
Here is a relevant study quote :
' EGb 761 was well tolerated and countered apathy. '
EGB 761 is an extract form of GBE sold otc and is used in many studies. I think the reason why is that it is a known quantity for results that should be able to be replicated. EGB 761 also comes in a dose that is significantly lower dosage and more expensive than other GBE products. It makes me think of the difference between pine bark extract (PBE) and Pycnogenol, a patented form of PBE. In actual use, I have not seen that Pycnogenol was more effective than PBE.
This may be one potential reason why Dr Mischley's questionnaires show it as the supplement in the number one position based on patient feedback.
Given the safety profile of GBE, it seems like it might be worth a try.
Art
Thanks Art. Ginkgo Biloba is about the only thing I haven't tried. That and CoQ10
Only caveat about ginkgo it must be stopped before surgery as it has blood thinning properties. I use a ginkgo tincture and put it in tea. I do think it helps w cognition
Regarding Ubiquinol, though this is not about PD, but rather MSA, it is interesting :
thelancet.com/journals/ecli...
Here is a relevant study quote :
' This study met the primary efficacy outcome (least square mean difference in UMSARS part 2 score (-1.7 [95% CI, -3.2 to -0.2]; P = 0.023)). The ubiquinol group also showed better secondary efficacy outcomes (Barthel index, Scale for the Assessment and Rating of Ataxia, and time required to walk 10 m). Rates of adverse events potentially related to the investigational drug were comparable between ubiquinol (n = 15 [23.8%]) and placebo (n = 21 [30.9%]). '
Art
pretty strong results
Marc,
Just two of these per day meet the dose of Ubiquinol used in the study :
amazon.com/Liposomal-Absorp...
I consider that MSA is a very significantly more severe disease than PD even though it sometimes starts out similarly. The progression rate is very fast with no real treatment options, so this study is significant.
Art
I can't believe I saying I appreciate having PD (as apposed to MSA.)
I got delivery today. I'll report back any benefit.
Pay attention to whether it affects your levodopa dosing and please keep me updated on any changes.
Art
I don't take levadopa or an pharmaceuticals
I didn't know that. Have you ever used levodopa?
Art
I've tried it 3 or 4 times for a couple months at a time but am unresponsive.
Have you responded to anything you have taken for PD?
Art
Nothing. I'm on my own.
And, I've tried everything
Well, then I'm glad you were able to get the treatment from Dr. J!
Do you think it is a gut microbiome issue that doesn't let you get any benefit from any oral treatment?
Art
I believe that's it
I wonder if FMT could reverse that issue?
Art
Probably, but I get my healthcare from the VA and they only do FDA approved therapies.
Pretty good results
"Conclusions
Subjects with Parkinson's disease tolerated multi-dose-FMT, and experienced increased diversity of the intestinal microbiome that was associated with reduction in constipation and improved gut transit and intestinal motility. Fecal microbiota transplantation administration improved subjective motor and non-motor symptoms."
"Two studies in which a single FMT was administered to patients with Parkinson's disease, provide evidence that FMT should improve constipation at a rate of ~90%..."
ncbi.nlm.nih.gov/pmc/articl...
I'm going to have a post ready about FMT this coming week. I think the majority of people are not aware of just how many health issues that FMT may help.
I'm curious if you have berberine in your stack, Marc?
Art
I stopped taking berberine due to posts put up by bolt
did you read those?
I saw that post regarding an animal study and it is not supported by newer human studies, but berberine at 1500 to 2000 mg/day has shown an ability to alter the gut microbiome in a positive way.
I take 1500 mg/day berberine based on the human studies for its multitude of positive health effects in humans.
Art
Thanks much. (That bolt ...something's gotta be done.)
Marc,
This study explains why I asked you about berberine :
ncbi.nlm.nih.gov/pmc/articl...
A relevant study quote :
' Berberine hydrochloride can improve the disorder of intestinal flora in PD patients and suppress the expression of inflammatory factors. '
And this :
ncbi.nlm.nih.gov/pmc/articl...
A relevant quote from the review :
' These indicate that berberine can be used as an effective therapeutic agent for dopaminergic neuron degeneration. '
Art
pretty interesting. thanks
Marc,
I don't know if you take B12 as part of your regimen, but as people age the ability to absorb B12 declines. People with PD are generally low in B12. One of the symptoms of B12 deficiency is apathy as discussed here :
pubmed.ncbi.nlm.nih.gov/353...
Here are a couple of relevant quotes :
' Vitamin B12 deficiency can have distressing neuropsychiatric symptoms. It can have an etiological role in clinical presentations like depression, anxiety, psychosis, dementia, and delirium, requiring screening of at-risk populations. '
' The other mental changes associated with B12 deficiency include apathy, agitation, impaired concentration, insomnia, persecutory delusions, auditory and visual hallucinations, and disorganized thought-process. '
The following article discusses how low B12 in PD can also have a negative impact on mobility in PwP :
ucsf.edu/news/2018/03/40999....
Here is a relevant article quote :
' “Our findings demonstrate that low B12 levels are associated with greater walking and balance problems, possibly due to the known effect of B12 deficiency on the central and peripheral nervous systems,” said Christine. “Alternatively, low B12 may have a direct effect on the progression of Parkinson’s disease, or it may be a marker of an unknown associated factor, perhaps correlating with another aspect of the disease or nutritional status.” '
Low B12 can also be a significant contributing factor for peripheral neuropathy (PN) and PwP are at increased risk for PN as I wrote about here :
healthunlocked.com/cure-par...
Low B12 can also cause elevated levels of the inflammatory homocysteine and homocysteine is a significant contributing factor to PD progression as discussed here and it further states that PwP have higher homocysteine levels than their healthy counterparts :
onlinelibrary.wiley.com/doi....
Here are a couple of relevant quotes :
' Studies have shown that high concentrations of Hcy are closely linked to PD development and progression, and Hcy may become a feasible therapeutic target for cognitive decline in PD.14 '
' Epidemiological and clinical studies have shown that the elevation of plasma Hcy levels is a high-risk factor for neurodegenerative diseases.34 Kuhn et al.35 reported that the plasma Hcy levels in PD patients were substantially higher than in the control group. High Hcy-induced loss of intracellular ATP was suggested to be a crucial factor leading to PD.36 '
Since B12 is poorly absorbed with age, it is possible to reach a point where no amount of oral B12 is going to be adequate to bring you into the normal range, in which case your doctor can give you a shot of B12. If B12 is or is not part of your current regimen, it may be worth considering having your level tested. If you are taking B12 and your level is still low, you may need to get it via injection in order to assimilate it properly.
Art
Thanks again Art.
Last time I had it checked was July, 2019 and it was high at 879 pg/mL (Reference range is 213-816.) I've never taken B12 supplements. I have my annual physical in August. I'll have it checked again - along with my homocysteine level.
Also, Marc, it might be worth asking your doctor to check your iron level, because low B12 can cause low iron and low iron can be a contributing factor to apathy as discussed here :
ncbi.nlm.nih.gov/pmc/articl....
Here is a relevant quote :
' Iron plays a key role in the metabolism of monoamines in the brain thus iron deficiency leads to symptoms such as apathy, drowsiness, irritability and lack of attention occur due to impaired monoamine oxidase activity7. Patients affected from iron deficiency display many behavioral and emotional signs and have symptoms similar to the ones in depressive individuals8.
This article suggests that B12 deficiency can cause low iron :
bellalindemann.com/blog/cau....
Here is a relevant quote from the article :
' Well, it’s because blood loss is one of the primary causes of Iron deficiency. And given B12 is required for the production of red blood cells, a deficiency in Vitamin B12 can lead to a deficiency in Iron. This is why the onset of anemia is often the result of a B12 deficiency rather than an Iron deficiency on its own. '
Art
Art
IMO Berberine should be on the detergent shelf as it is a very good quaternary salt for treating green moulds, viruses and bacteria.
I've already spoken to Bolt_Upright about Berberine here
healthunlocked.com/cure-par...
of course it changes the intestinal biome: I think it slowly kills half of it .
I don't know about the laundry shelf, Gio, berberine is a yellow powder that stains things yellow. Not quite as bad as curcumin, but pretty bad. I use it everyday, but not in the laundry!🙃
Art
Art, you can try it yourself. Dissolve the right dose of Berberine in water and then rub it on the mold and you will see how well it works as an ecological mold killer, but don't use it on plants because it is slightly phytotoxic. Berberine is a quaternary ammonium salt, today it is fashionable to lose weight, but I know it, in practice, as a mild topical disinfectant against molds, viruses and bacteria,
Greetings from Italy to you Art and MBA and to all friends and colleague PwPs.
“Strive to laugh and soon you will feel cheerful, a Human Being causes his own emotions “.
Gio
Gio,
All theses are positive
sciencedirect.com/search?qs...
sciencedirect.com/science/a...
Marc
MBA ,I only report my experience with my considerations and opinions just to contribute, give it the right weight.
MBA, in your link:
“However, berberine is now manufactured by chemical synthesis. Chloride or sulfate salt of berberine is generally used for clinical purposes. It is an intense yellow powder, odorless with a characteristic alkaloidal bitter taste. It is very slightly soluble in water, slightly soluble in ethanol, sparingly soluble in methanol; however, the salt forms are relatively more soluble (Battu et al., 2010).”
This puzzles me given the high volume of Berberine promotions on the web as a slimming product.
sciencedirect.com/science/a...
I have never found a weight loss effect with my long term use of berberine hydrochloride.
Art
Here, for lovers of the genre, all that Berberine does good.
I used it as a natural anti mold product and topical disinfectant for viruses and bacteria and it work very well.
magazine.x115.it/x115/berbe...
“Researchers believe that weight loss is caused by improved function of fat-regulating hormones, such as insulin, adiponectin and leptin.
Berberine also appears to inhibit the growth of fat cells at a molecular level 33, 34.”
pubmed.ncbi.nlm.nih.gov/172...
Much better known and safe is the B3 niacin for this purpose.
I find it strange that Beberine is used so extensively for so many things. I recall reading that Berberine should not be taken for an extensive period of time. But it seems very popular now.
I certainly wouldn't recommend it to a pregnant woman, but not even to a Pwp since it favors apostosis IMO.
conflicting data - once again. What's a person to do?
MBA, in my posts you always find my opinions distinct from the facts because I always write it clearly. It depends on who a person is, ie a pregnant woman or PWPS in my opinion shouldn't be taking it all the time, I'm not an expert in Berberine, but who is? The Chinese?
Facts:
I also do wonder though whether testing supplements in pd in a clinical study is difficult given the long time frame required to generate statistically significant results. MSA and its fast progression could be seen as a proxy for PD which should at least be seen as a efficacy signal to be considered for PD.
Thanks so much! Truly awesome videos. I know how much I need them.
Andrew Huberman, Joe Dispenza, Dr Berg, Mark Hyman...these guys all mean well, but I don't think any of their advice works on a broken dopaminergic system. The advice I've seen amounts to "sleep, drink water, lower your carbs, eat organic, take vitamins, exercise, get a moderate amount of sun, limit your screen time and get some fresh air and you'll make normal amounts of dopamine", and that may work for a non-Parkinsons brain. It never quite did the trick for me, although all of it is good advice for healthy living. The only thing I will say that works like a charm, at least temporarily, is Joe Dispenza's insight on the PLACEBO EFFECT.
Hope you feel better, my good friend. Try a small dose of lithium orotate, 5mg to 20mg a day, for that apathy. Give it a couple of weeks to be sure, its not an instant rescue drug. It works for me. I know I mention it all the time. Make sure to google that there are no drug interactions first, for example, if you take Zoloft n stuff.
Yet there are plenty of studies showing that these recomandations familiar to us also helps for PD, including placebo-bonus. Help, but certainly not boost dopamine production to "normal". That you don't experience it that way is very sad, but you don't know how much worse your situation would have been if you hadn't done all this. That's why the PRO-PD app is so interesting as a comparison tool. And I have a feeling you don't score that badly there after 10 years of PD?
thanks friend, yes, Im ten years since diagnosis and doing a lot better than I had expected to be doing by this time. I do all that stuff, have been doing it a long time. I guess it helps slow the progression, long term, even make the ratio of good days to bad days more in our favor, but I doubt it will boost it so much that it would ever get a parkinsons patient back to normal. If it does, Im happy for you!
Then we agree. Unfortunately, I am not a chosen one. 🍀
Just shut up and take your meds!
Why should not we increase L-Dopa bioavailability in the Brain
There Is No Spoon
How many with PD (have taken or does take) Tyrosine
Very interesting video on controversial issues regarding managing Parkinson’s at different stages (from 2 guys that seem smart).
