[Joel]

Hi, Andrea. I have an update. Plan A (Remeron) did not help my uncle at all, so we jumped through many hoops to try Kynmobi. Unfortunately, he had a severe negative reaction to it, so it won’t be a possibility for him. Details are available if needed, but if you’re already taking Apokyn, I doubt they’d apply to you.

(For anyone else reading this thread, this is not a negative review of the drug. My uncle’s situation is unusual, and he is far weaker than most who would consider Apokyn or Kynmobi.)

The company was a little evasive (I might go so far as to say ‘slimy’) about giving us a straight answer on the monthly cost—in fact, we never found out—but I assume that’s due to the U.S. pharma industry being uniquely predatory. It shouldn’t be an issue over there.

I hope you get the chance to try it soon.

[Joel]

Nephew to a late-stage patient with severe dementia, who was developmentally disabled prior to his early Parkinson’s diagnosis and needs someone there 24/7…  My qualifications consist of being the only sibling who’s single, childless, and semi-retired.

I split time with my mother (his sister) as long as we could handle it ourselves, and since 2018 we’ve hired several caregivers too.

[Joel]

Hi, Andrea. I have no experience to report, but until a more useful reply comes along, I did learn something possibly useful about these two recently.

I take care of a relative with advanced Parkinson’s and severe dementia, and he has a terrible time sleeping due to having almost no middle ground left between overmedicated and undermedicated—not enough of his basic medication (Rytary) and he is too uncomfortable to sleep; too much and he is too wound up to sleep.

Just a few days ago at his semi-annual visit to the neurologist, she mentioned the two versions of apomorphine as an either/or choice for dealing with undermedication symptoms without (over)using Rytary’s Levodopa pathway.  It seems likely that preference of delivery system is the only real distinction, else she would have had more to say about the differences between the two. 

For now, Plan A is Remeron as a symptomatic treatment for his nighttime discomfort. If it doesn’t work, the needle is not an option for us, so the sublingual version of apomorphine is our Plan B.

Joel

[Joel]

My late-stage PD patient has an ongoing problem with cramping, and I believe it is related to his strong and persistent tremors.

[Joel]

Mary Beth, what metal detox approach (ex. cilantro, chelation, fasting) is your Dad using?

[Joel]

Anyone taking Carbidopa-Levodopa medication has probably already been informed that too much protein intake will reduce the efficacy of the medication, so that will certainly exacerbate symptoms, at least indirectly.

More interestingly, maybe, I too have seen too many articles, many on this site, connecting gut health to Parkinson’s (as well as other chronic conditions) to doubt that it matters.

(Edit: Damn… That’s some opaque writing. I’m too tired to fix it, but if someone needs me to clarify, let me know and I will.)

[Joel]

I take it for joint inflammation. To get a therapeutic dose at a reasonable cost I got the extract (standardized to 95% curcuminoids) in powder form from BulkSupplements.com. I add a little piperin (black pepper extract) to increase absorption—but absorption might not matter for gut inflammation.

My inflammation is very much under control now, but I was doing a bunch of other things for it, too, so I can’t speak to the effectiveness of turmeric alone.

[Joel]

The best piece of advice for me wasn’t caregiver-specific. It’s from Ken Keyes’s Handbook To Higher Consciousness, a quick protocol he called The Instant Consciousness Doubler: “Experience whatever the other person says or does as if you had said or done it yourself.” The ego’s natural function of self-justification takes over and creates an avenue for empathy—instead of its usual divisive ‘Me right, you wrong’ function.

So, I experience an instance of dementia, demanding behavior, or whininess as if I had done it myself. Why do I feel (not think!) I am behaving that way? Maybe because everything is confusing, I’m in pain, I can’t explain what the problem is, it’s day after day after day of this, etc., etc… In no time at all this approach can take me from frustration to “Well, yeah, of course, I get it.”

[Joel]

The biggest difference for me has been getting more hands on deck.

My charge, an elderly relative, was developmentally disabled even before PD-related dementia, and three years ago we had a violence problem at night. By the time he’d fall asleep, only a few hours before the circus started back up, I’d be on the verge of breaking down and weighing how much more of this would still be preferable to being dead.

We hired an extra caregiver so I no longer had to worry about recovering and being ready for the mornings. As a bonus, we adjusted the meds and successfully got rid of the manic behavior. I would have been happy with either, and with both, life is a relative breeze now.

I sometimes wonder how many families in similar situations cannot hire or find another caregiver. It is difficult to think about.

[Joel]

Hi, Christina. Thanks for turning me on to the idea; it may be of some help to the relative I care for.

I checked the organic coffee I buy (and really like) but am unable to determine its EHT content. Or any other coffee’s. But I did come across a supplement called Nerium EHT that claims to contain EHT.

An idea: if it is not possible to get reliable info on any given coffee’s EHT content, and if (unlike so many supplements) Nerium EHT contains what it is supposed to contain, and if the synergistic effect of caffeine + EHT does not depend on a specific ratio of caffeine to EHT (I guess the Rutgers study would have specified; I haven’t read it)… maybe popping one of those while drinking coffee would be worth the expense?

[Joel]

William R., you may already have talked to your MD about this, but in case not… There is an extended-release version of Sinamet’s Carbidopa-Levodopa combination, called Rytary. It is available is several different strengths and would be a logical progression from trying smaller, more frequent doses of Sinamet.

[Joel]

“Forced exercise” is when the body is guided through the relevant movements, like being on the back seat of a tandem bicycle. Here is a study suggesting that it provides a particular benefit for PD patients: https://www.medscape.com/viewarticle/751998 (must register for free with Medscape to read it). If you’d rather watch a 29-min video, this one is good: https://davisphinneyfoundation.org/the-effects-of-forced-exercise-on-parkinsons-motor-and-non-motor-symptoms/

We bought an inexpensive mechanically-assisted pedal machine (i.e., turn it on, the pedals turn by themselves, the patient pushes along with the motor) for uncle (late stage PD) a couple of years ago, and it has pulled him out of approaching off periods many times, though like other interventions it does not bat 1.000.

My guess—and that’s all it is—is that the mechanical guidance has a sort of reteaching effect on the neural pathways governing the movement. I’d further guess that it is more beneficial for those at later stages of PD, when the ability to initiate movement fades, and that more challenging exercise might be preferable at earlier stages.

[Joel]

I’ve had similar thoughts, that THC (the anecdotal stories of what it might do are very interesting), along with maybe a dose-dependent anti-inflammatory effect (and the general health benefits associated with reduction of inflammation) might be what is really going on with cannabidiol.

On the latter possibility, it is certainly an old trick of the supplement industry to pump a legit study and, once there is enough excitement about the subject of the study, to push supplements containing far less of the magical ingredient than was used in the study.

[Joel]

Given the apparent connection between glyphosate (i.e., Roundup) and auto-immune disorders in general, and the apparent connection between brain inflammation (i.e., auto-immune malfunction) and Parkinson’s, the explosion of Parkinson’s in the past two generations and the dominance in our diets of pre-packaged food sourced from giant agri corporations do look suspicious next to one another.

There is a very real sense in which we *all* use Roundup, even if we don’t farm with the stuff, since traces of it are ubiquitous in our food supply. If your Dad was handling the stuff directly, I share his suspicion—in fact, I believe environmental toxins are a factor in many modern illnesses besides PD—but I am not aware of any studies directly linking the two.

I *am* aware that there are studies, as recently as 2017, linking Paraquat (banned in 32 countries, so toxic it kills what even Roundup won’t kill) and Parkinson’s. The MJ Fox Foundation has sent letters and petitions to the EPA linking these studies, but I guess so far the EPA (stands for “Every Poison Allowed”) has  found the campaign contributions to their bosses from the corporations owning the corporations that make herbicides somewhat more convincing.

[Joel]

Since I just mentioned TouchPoints tangentially in another thread, I thought I ought to update my uncle’s experience (see above) for anyone looking into them.

They are now a necessary part of minimizing his suffering, if anything even more effective than 85% during the day. (What has probably happened is that we have learned to recognize the early signs of low-dopamine anxiety faster and are getting them on him earlier.)

We have also bought a second pair, TouchPoints for Sleep—same mechanism, but in softer wristband containers instead of watch bands, and they shut off automatically after 30 min). These are less effective than the daytime TouchPoints for Calm, but that is probably again due to the timing of getting them on him, and dementia-related sundowning is probably also a factor.

On the downside, they aren’t particularly well-manufactured. We’ve had to make two returns in the past three months. On the upside, the returns and replacements have been low-hassle, and their customer service is courteous and responsive. Having bought two pairs instead of one has been a great relief during the returns, and since the differences between them are minor, they are largely interchangeable no matter the time of day. I think they gave us a price break on the second pair, too.

If you are just trying them and don’t yet feel you need two pairs, get the TouchPoints for Sleep. They are fine during the day too: both versions normally work within 30 min, you can always restart the Sleep ones if needed longer, and the softer wristbands are fine when sleeping or awake (while the harder watch bands are really only for when awake).

[Joel]

I tried the highest strength of Charlotte’s Web for my relative with late-stage Parkinson’s and dementia. I found that it definitely did *something*— when we gave it to him in reaction to bad off periods (spasms, pain, etc.) there was about a 50%-60% chance that it would make the spasms go away and completely relax him… but only for about 30 to 45 minutes.

We also tried a daily dose but could not identify a change in his on-off pattern or in the severity of the off periods. Presumably a higher dose would help (if the bottle contains what it says it contains; gotta be careful about that now in the Amazon era), but it was already many  times the cost of his normal meds for a very limited benefit, so we discontinued it.

(With apologies for going somewhat off-topic, we later tried TouchPoints, and they have proved more effective at the same goal—inducing muscular relaxation—and way more cost-effective. There’s a thread on them somewhere in these forums.)

[Joel]

Hi, Michel. I’m sorry to hear of your diagnosis, but congratulations on making such powerful lifestyle changes. As noted, PD is an area where modern pharmaceuticals have earned their keep, but it also seems clear there is much that can be done to lessen/delay the need for them.

You have a good list, and reading between the lines you probably already know about the importance of probiotics, lessened protein intake, and anything that reduces (brain) inflammation. And, if they aren’t already on your supplement list, B12 and Lion’s Mane are worth looking into.

On the gadgety side, a 40-Hz strobe light (https://news.mit.edu/2019/why-visual-stimulation-alzheimers-0507 … It’s about Alzheier’s, but it seems to help with amyloid plaque, which may have PD implications) and infrared/red light exposure (https://www.liebertpub.com/doi/full/10.1089/photob.2019.4663 … presumably it helps a little with brain inflammation) might be worth a web search.

There is a traditional Indian food or food ingredient that I read about, maybe through this site, that was used there back in the day for PD symptoms, but I did not save the reference as it would not be of benefit to my uncle’s very advanced PD. If you can dig that up, it wouldn’t hurt, and it might taste good too.

Good luck,

Joel

[Joel]

Hi, Steve,

My uncle’s situation is quite different from your Mom’s — he has been developmentally disabled since age 5 due to an anesthesia error, during a childhood surgery, he has lived with PD for 18 years, and his PD is now accompanied by full-blown PD-related dementia — so it is entirely possible what I post here will be utterly irrelevant for you. I’m going to post it anyway, though, because of the surprising help he’s gotten with anxiety the past few months.

Until about a year ago, his symptoms tracked with the ebb and flow of his Rytary (and before that, Stalevo) dosages. In the past year, however, it has become much more complicated to track his symptoms; they are a mix of purely physical and largely psychological. He tenses up, gets obsessive about being taken for a car ride, starts shaking, and often spends the rest of the day severely ‘off’ and unresponsive to subsequent Rytary doses. Passive relaxation aids (guiding his breathing, heavy blanket, heating pad, soft music, etc.) help (very) occasionally, but in general he does not have the awareness or concentration to use active relaxation methods.

We  readanecdotal accounts that many PD patients were responding well to TouchPoints, wristwatch-like gadgets that create alternating vibrations on each wrist in a relaxing rhythm. It was a one-time purchase, would not affect any pharmacological balances, and seemed to address the psychological arousal we thought we were seeing, so we bought and tried them.

They’ve been shockingly effective. If the caregiver recognizes the early stages of anxiety and puts them on his wrists, he avoids the ‘off’ periods ~85% of the time. Occasionally, maybe a third of the time, they’ll even pull him out of a crash (our term for his severe off periods) that is already underway.

I wouldn’t bother posting, given how different the context of his symptoms is from your Mom’s, but anxiety being front and center of your post makes me think it is worth sharing. If you want to look into it, searching “Touchpoints for Parkinson’s” ought to work.

 

Joel

[Joel]

Thanks, Andrew L. and Jean. The app and the link are just what I was looking for.

[Joel]

Andrew L., do you have any guidance for the technical part of the experiment; i.e., an easy way to make a light strobe 40 times a second?

Has anyone found any indication that one part of the light spectrum might be preferable to the rest? (There is mention here of infrared, and I know there are general claims of benefits from infrared light, but I haven’t read of any connection to Parkinson’s and would be interested in any links.)

[Joel]

I’m sorry you are going through this, Mrs. Shapiro. I know it must be frightening. It frightens me even though I am not going through it.

I am a caregiver for an elderly relative whose PD and PD-related dementia are both quite advanced. I try to stay abreast of news that might help him, and one such item is that Lion’s Mane mushroom seems to encourage regrowth and repair of (some types of, I guess) neural tissue. Reduced inflammation, too. Here is a 2017 study on Lion’s Mane, mice, and various neurodegenerative conditions,  and this article includes a link to another study.

A web search will turn up a ton of links about it, to be filtered with the usual grain of salt. I particularly liked a discussion on YouTube between interviewer Joe Rogan and Paul Stamets, a mycologist whose work with and enthusiasm for fungi are so captivating that the newest Star Trek series named a character after him! And for basic info here is the Drugs.com entry for Lion’s Mane.

There is no data available on how it interacts with the usual Parkinson’s meds, which is par for the course. I’ve ordered and received some — capsules for whatever relief might be possible for my uncle, much-cheaper bulk for my own preventative health — and am adding it to the pill box this week.

[Joel]

There was a report earlier this year of an MIT study in which amyloid plaques were reduced in mice by light strobing at 40 Hz, and they were reduced even further by a combination of light and sound: https://news.mit.edu/2019/why-visual-stimulation-alzheimers-0507

The study was specific to Alzheimer’s, but since the mechanism seems to be the effect of the frequency on amyloid plaque formation, it is of interest to Parkinson’s patients, too.

[Joel]

Hi, Sharon. I’m a caregiver for a late-stage PD patient and have him on a little Mannitol. In his case, his normal meds (Rytary) do such a number on his colon (the usual constipation) , and he’ s taking so many drugs, that I can’t isolate an effect from Mannitol.

But what your question really reminded me of is this: I’ve never encountered a sugar alcohol, of which Mannitol is one, that didn’t wreak havoc on my colon. If I chew too much Ice breakers gum (Xylitol, Maltitol, a little Mannitol), the muddy river instantly rages like it’s monsoon season.

I think the effect is quite common. Even when I was a kid, my friend and I used to deliberately eat a bunch of nasty, artificially-sweetened Velamints in order to have spectacular “gas” battles with one another.