I imagine this has been mentioned before on this forum, but I must have missed it:
I imagine this has been mentioned before on this forum, but I must have missed it:
Generally, if you have to have PD, you want tremor dominant
I learn something new everyday. Well new for me anyway.
That seems like it would be a consideration in future FMT tests to be sure and have participants with and without tremor dominance.
"The increased cerebellar activity may sensitize the cerebello-thalamo-cortical circuit to perturbing influences from the basal ganglia, resulting in tremor. This suggests that a combination of basal ganglia pathology (i.e. pallidal dopamine depletion) and compensation in the cerebello-thalamo-cortical circuit leads to tremor,
explaining why tremor and a benign disease course are seen in the same patients."
Source (much older: 2012): Helmich et al, A Tale of Two Circuits. Brain 2012
I had read about it, however, nothing is absolute. A lot of PWP exhibit a combination of symptoms.
Yes, it is definitely not a one size fits all disease. If the gut bacteria connection is as strong as it seems, that makes sense considering the multitude of various bacteria in the human gut, some of which have not even been identified yet.
Art,This fits with my husband’s symptoms from the beginning. It took some time to diagnose PD, as he didn’t have a tremor and still doesn’t. After a couple of missteps by specialists, our newly sourced wonderful GP sent him to an APATT team (Aged Psychiatry Assessment & Treatment Team),a public health initiative. These teams consist of a psychologist, a clinical psychologist and a team manager. He was found to have cognitive decline in some areas and non in others. He was sent off to theMovement Disorder Clinic at The Royal Melbourne Hospital here in Australia, who initially diagnosed him with Lewy Body Dementia, but later with PD
His main symptom all along has been extreme apathy, helped initially by the Neupro Patch and more recently by mannitol.
Interesting. It seems like there is so much still to be learned about neurodegeneration. I still like the idea of training dogs to sniff out PD and possibly other neurodegenerative diseases to speed the diagnosis process tremendously. I remember they started training dogs to sniff out Covid-19 too, but I haven't heard anymore about that. Probably to dangerous for the dogs since some dogs have gotten Covid-19.
I'm curious if your husband ever tried vinpocetine and if so, did he see any benefit from it?
Had sniffer covid dogs on tv two days ago
Were they just demonstrating them or were they actually working? I've seen a few demonstration videos and they are reported to be more accurate than testing and way faster. With Covid-19 having shown that it can infect dogs, I imagine animal right's groups will not be happy!
😂 No Art he hasn’t tried Vinpocetine, but I have some. I have started taking it, after reading your post about your friend with memory problems. I will start him on it. Thank you, once again.
I don't know if Vinpocetine alone will be enough to achieve the same impressive benefits that my friend got from the 5 supplements, but it certainly seems like a good starting point! If I remember correctly, Cons10s/Constance is or was using it and may be able to give you an idea of what benefit she got or is getting from it. I have used it off and on and in fact am taking 30 mg as I type. I don't know if I have any cognitive issues as I am probably not the best judge of that, but I'm thinking increased blood flow to the brain is useful for helping to maintain the brain in a more positive state. Btw, my friend is doing really well! We just had her over very recently to celebrate her 79th birthday with other friends! She didn't stumble once for words and was on top of the conversations, the whole weekend! Here is a link to that post for anyone who is specifically interested in the issue of memory :
I followed your advice to your friend and take all the supplements you suggested. I’m taking 30 mg of Vinpocetine. Too soon to see any change, but I’m hoping. Thanks Art.
We’ve now got the Red Light coronet, so I’m thinking about trying it as well.
Interesting, please keep us updated ! The posts about the red light therapy have been very interesting, but waiting for those study results is like watching paint dry. 😫
Art, there is a very long in-depth article in the Weekend Australian this weekend on the results of research done by the Australasian Research Institute of Infrared light for PD. The light was applied to the head and the abdomen.
The results are to be published in the Journal of Photochemistry and Photobiology. But from what I can gather, isn’t being published till September.
“It was incredibly exciting to see changes in the microbiome and improvements in symptoms happening at the same time”….just one statement from the article.
I’m not sure if you can read the article. I have hard copy and normally if you go to the site, you have to subscribe.
I was only able to find articles from last year discussing the trial. Nothing from this year.
I did find this interesting study using Photobiomodulation (PBM) with hydrogen water which is considered to be a very effective antioxidant and healing, in a very short pilot study involving PwP with positive results :
A quote from the very short study :
>>> ' This novel, proof-of-concept study demonstrated that PBM+H2 therapy is safe and reduces disease severity. ' <<<
I was not aware of this study. Thank you so much Art.
Oh not good for hubby🥺
This is interesting, I am 72, diagnosed 3 years ago but for years before I recall loss of smell, dry eyes and a smalll tremor, to this day I have an obvious tremor and sore shoulder and that is all, my life basically has not been effected yet, I play golf and seem sharp especially with quiz programms and discussions with friends, there is no doubt I would be classed as tremor dominant.. I stopped Azilect 3 months after it was prescribed 2 years ago and C/L had little effect so stopped that as well. no medication for about 2 years now. I take Macuna, B1, NAC and a few other suppliments but I think the most important thing I did was the Keto diet. I believe this is all to do with inflamation in the brain and my approach seems to be working for me. No more dry eye, drooling andmy sense of smell is improving. I would love to hear more on this subject from people with similarsituation.
B1 has helped some forum members to slowly regain their sense of smell, but mannitol seems to get more positive results for that aspect of PD. B1 also reduces neuroinflammation by replacing deficient B1 in the brain. NAC has antioxidative stress qualities which reduces inflammation and it also increases glutathione in the circulation. MP has antioxidative stress qualities in the brain whereas levodopa has shown in studies to raise oxidative stress levels in the brain. Three years since diagnosis is relatively new in the world of PD, but these steps you have taken should improve your overall situation for the long haul.
The Keto diet can be helpful too, but is hard to maintain for people who travel frequently or are still working and on the go all day.
I am curious as to what benefits you think you have gotten from B1 and have you stopped it lately, long enough for the effects to fully wear off?
There are some proactive posters on here who are at or near 10 years with little to no prescription drugs, but they seem to be the exception, not the rule. Imo, being proactive seems helpful. Continued success to you!
Art, I was not aware of anyone on here not on meds after more than a few years other than Park Bear. I wonder if the others you know of wouldn't mind being known and sharing their experience? I'm doing all I can figure out to do to postpone medication. My father's declined much faster after starting meds and I have always thought that might not be coincidental.
That was no meds to low meds. I drew that from posts I have seen on this forum over the years and to me it makes sense because some people just progress much slower than others and maintain a better quality of life for a longer period of time. I think one person may have posted this week or last saying as much. I have never written any names down though.
This recent post shows someone who is 10 years and doing well on minimal meds and they reference a friend who is years further ahead who is also in a similar situation :
Sorry to hear about your father's rapid decline after starting meds. Was he monitoring homocysteine levels?
See article: nature.com/articles/ncpneur...
Unfortunately no, he was not. His neuro is at UCSF and I had not heard of homocysteine until this forum.
Sadly many doctors either are not aware or just skeptical about importance of monitoring homocysteine. However, it's good to ask or get tested privately. Also, labs may have difference in normal reference ranges - the optimal results would be to keep homocysteine in single digits.
Hi Gregorio, I am only 45 but the symptoms you listed are the exact same as mine. My Dad has PD but if he didn't, I would have realistically most likely gone many more years having no clue that my issues are all due to PD. Although we are all different, may I ask how long you had a tremor for before eventual diagnosis? My tremor is intermittent. Sometimes I go days without it being visible then days like today, it is pestering me most of the day. I'm on the Keto diet as well. I find it very easy and I am mystified why others do not. I would recommend intermittent fasting as well. I eat within a 5-8 hour window. I also take B1 & NAC but have not yet added Macuna although I want to. Thank you.
I suppose it was about 4/5 years of symptoms although I had no idea it was pD, I went for my annual check up and the doctor noticed the tremor in my right hand which had been getting stronger for many years, and said he thought PD and sent me to the neuro. I left the neuro's office with my perscriptions in hand and started a huge researsh regime, about 4 hours a day for months on google and youtube until I understood what I had,that is when I stopped the meds and went the other way. I agree what you say about the keto diet, I live in Spain so was eating a Mediteranian diet anyway so was half way there
I agree with the anti-inflammatory nature of the keto diet but I do not believe it is healthy in the long run. It is in fact mock fasting, and if you're not very careful you risk mineral deficiencies and strain on your organs regardless of supplementing. Be sure to rotate out regularly or you'll hurt your gut microbiome towards more pathogenic or experience physiological insulin resistance eventually (around a year mark). You want your gut microbiome more towards butyrate-producing strains for more natural/consistent blood sugar regulation and SCFAs. If you feel best on a keto, be absolutely sure to ingest high fiber and lots of greens/vegs + berries on a lesser strict ratio with more carbs allowable under ketosis. Doing a keto is not hard. Doing a keto correctly for health is HARD.
"A high fat diet (such as a Keto diet) reduces the formation of butyrate, but increases succinate, inflammation, liver fat and cholesterol levels in rats (7). Switching to a low fat, high fibre diet corrected this."
Io aggiungengerei un poco di Clostridium butyricum 😁 ( un probiotico ).
No supplemental probiotic strain (mostly transient) will achieve what a well-established diverse microbiome can do for health, but it is certainly an option.
Can you please explain “mostly transient.” And I guess I’m not really keto bc I have reintroduced small portions of grains and legumes. You got me started on soaking beans. Today was a 1/3 cup of quinoa. Tomorrow will be 1/4 cup oatmeal. Not very exciting but I’m content.
Transient, meaning they mostly don't establish in the gut and you need to keep supplementing for the limited benefit.
I highly recommend that you monitor your glucose level when doing a keto or any low-carb diet - this is almost a must to track your success. You can do this in place of monitoring ketosis using ketone test strips. Under ketosis, your reading should be in the 80s or below. If the reading starts creeping up, that means trouble. You don't want to mix high fat with moderate carbs unless you can stay under ketosis.
Also, watch out for quinoa - while very beneficial, it's pretty high in oxalates so I only add 1/4 cup or less for 2 cups brown rice ratio. I mix most grains with brown rice. Also, look into sorghum- I really like it and it's gluten-free.
Thank you Rescuema. We have a keto breath thing I need to utilize more regularly. I did not know about the oxalates in quinoa. I will reduce frequency. Do you like steel cut oats for gut health? This weekend I was going to try black wild rice. I hope that’s a good idea? I will seek out sorghum.
I’m working on reducing my omega 6 intake so I’m reducing almonds and other nuts and replacing with raw macadamia nuts. But I wonder if there are other issues with raw macadamia I’m not knowledgable of.
I thought I ate healthy before but I now realize I my diet was not nearly as healthy as I thought it was but far healthier than our cultural norm.
I also need to determine the healthiest organic coffee to grind at home. I’d like to avoid coffee but so many say to drink up.
"Do you like steel cut oats for gut health? " - love it, just be sure it's organic by a reputable brand. All oats, even some organics are tainted with glyphosate - sad affair.
Yes, try anything (w/ research) clearly labeled as organic, and possibly from CA or the upper US region - avoid the southern gulf coast because the grains tend to be high in arsenic. As I mentioned before, I shop from Vitacost and use many of the Shiloh Farms brand if not Lundberg.
I wouldn't overdo nuts, but little bits here and there in rotation should be beneficial. Add flaxseeds, use Carson's The Very Fist Fish Oil (lemon) in salad dressing, etc. for omega 3.
I luckily have a Trader Joe's nearby and get some of their organic coffee - the Shade Grown Ethiopian, Breakfast Blend, etc. With coffee, I notice I tend to enjoy them better when I rotate them (olfactory desensitization) so do try other highly rated organic coffee from Amazon as well.
Glyphosate and arsenic in our grains...sad affair indeed. I’m hooked on Vitacost now. I bought a ton of organic ground flaxseeds to stock our pantry prior to learning I should grind at home or they have diminished antioxidants. For oats, I ordered Azure brand online. Expensive but organic. I’m relieved oats are good.
I will seek out the fish oil by Carson’s. We presently have ultimate omega by Nordic naturals. I’ve wanted to try krill oil but all I’m finding is capsules.
Thank you for the TJs coffee idea. Pete’s coffee has organic whole beans online you might like.
I have a serious nut problem! I’m going to ask my husband do hide them! Nibbling on nuts daily is my worst dietary gluttony.
uh oh - if you're under ketosis, you shouldn't have an urge to nibble on anything!
Of the nuts, macadamias are pretty low in antinutrients and one of the better options while under keto. 😉 When I was doing strict keto, I was able to feel myself going out of ketosis and couldn't possibly eat oats.
Yes, only get whole flaxseeds, and don't try sprouting them - they get super slimy.!
I've tried Pete's and probably almost all decent brands out there, even connoisseurs recommend snob varieties, including roasting my own beans. Now I just drink whatever conveniently available. 😆
Last I did the keto breath thing I was “off the chart keto” according to my husband. I’ve since reintroduced grains and beans, just a 1/4 cup max and so I’m a keto faker now I guess. My intention is one week on one week off. Maybe that’s nonsensical but my rational is keto for brain one week, grains for gut the next week. I fill one egg cup with nuts a day. That’s my version of gluttony. I guess gluttony is relative. I crave the crunch!
I should just make kale chips.
Thank you for putting up with my rambling questions!
I hope one week on / one week off makes sense.
I felt better without the beans and grains but they sure are yummy! My little 1/4 cup of quinoa was savored like dessert!
The keto cycling comes with risks and your body may not be able to handle the influx of higher carbs too well on such a short cycling schedule - I'd be very concerned with high blood sugar. Read the below for the gist. nbcnews.com/better/lifestyl...
It takes a while for your microbiome to establish and help your digestion in addition to your body's metabolic adaptations. Proceed very cautiously. In the long run, you might be better off trying intermittent fasting, eating daily salad, healthy amount of sprouted grains, colorful vegs, and a small portion of protein while cutting down on fat eating mostly whole unprocessed foods. One of the worst things you can possibly do is mixing high fat+carbs, so be careful.
Hi, I do use Manitol, I make my own bread and biscuits for the Keto diet and use a lot of manitol. It has never occured to me to stop B1, why fix it if it is not broken as they say, I was taking NADH but stopped recently to see if I noticed any change but not so far. Exorcise, golf 3 times a week walking, and my supplments with the Keto diet are looking good for me so far. The Keto diet is really easy when out for a meal or anywhere. NO CARBS, easy to work around, just get extra Veg instead of fries, pasta and bread, a glass of wine instead of beer and sodas. and if you do eat carbs , make up for it the next day by being extra careful.
how do you keep from losing weight?
i was 106 kilos before keto diet, went down to 92 and stayed there ,, i eat everything i like, mixed grills ,spag boll, steak, fish, lasanga and so on, super diet.
I am tremor dominant (left foot) and a number of years ago my neurologist, when we were discussing the fact that I was still able to do most things unaided, made a passing comment that tremor dominant PwPs ‘sometimes’ had better outcomes than those with other forms. If I ever get to see him again (appointments with him have all been cancelled by the NHS the past couple of years), I will pursue the subject and report back. It is hard to know what is helping when we take different initiatives ourselves, supplements, exercise, red light therapy (soon I hope). Neurologists in the UK, in my experience, are not even interested in discussing anything other than prescription drugs. Sarah
Yes, I think it is similar here on this side of the pond. It is the exception, not the rule, for a neurologist to suggest supplements.
I hesitate to suggest some other more realistic correlation with cognitive decline/dementia here.
Such as the research evidence consistently suggests that low cerebrospinal fluid levels of amyloid-β42, a marker of comorbid Alzheimer disease (AD), predict future cognitive decline and dementia in PD.
Terrific article. I learned there are three subtypes of PD signs. Tremor type, akinetic (rigidity) type and mixed type. The tremor type has 30% less chance of neurologic signs like dementia compared with the other types. l also learned a bit about prodromal signs. For me, I had low blood pressure for 20 years before being diagnosed with PD.
I've always donated blood 3-4 times a year. And I always had blood pressure lower than average levels. For donating blood the first step is checking blood pressure. Mine was typically 90/50.
Sometimes it would be much lower, like 60/30, low enough the nurses didn't want to take my blood.
The blood drive was at the rec center in our town. I'd get the donation done then go jogging. I could be seen on the track from the picture window in front of the donation room. I would wave my arms every time I passed the window I always assumed the low pressure was because of my excellent cardiac output. Not because of any health conditions.
I just tested it and I'm 120/79, within norms for my age. I take Rytary three times daily for PD.
KPO, that is VERY interesting about low blood pressure. I was like you, mine was similar after a 2 block uphill walk of a mild slope from work to our pharmacy. I was asked by our pharmacist, Harry, to see how hard/easy a new style of BP cuff (Velcro) might be for another customer. Harry saw the read out and asked if I was dizzy/ light headed? Nope.
At that time I was a Volunteer Ambulance Attendant and for exercise and fun swam 3 times a week and played water polo at least twice on top of that : Thirty yrs ago BP was 92/40 now 124/70 @72 Yr.
I really wonder if there other PwP that had a low end BP in their youth and then got a Dx of PD @ ~ 60 Yrs??
I've had very low blood pressure since at least my teens when I was informed of this. I was just diagnosed with PD at 45.
For those who currently have such low blood pressure, do you carry some type of card or id tag in case something happens to you such as an accident so that any EMT or emergency room service will know and not mistakenly think you have some other issue?
Art, I had never thought about a card to carry, but I will put it on my "I HAVE PD" card which is in my wallet. The last time It popped was 3 weeks ago when I went for day surgery and the nurse checked my BP while laying on the gurney, asked if I had low BP and said yes a long time ago
Should have added I am Tremor Dominate on right leg and arm to the original post
I am very excited about this combination of events and the fact that it is not 10 or 15 years away and very likely less than 5 years to be useable in PwP if it all comes together. Just waiting on the Australian study to complete to know for sure, but even if that flops, which it currently doesn't look like it will, FMT looks very promising on its own :
You might have to scroll down a bit as the HU tech team needs to work on this a bit.
I’m non-tremor and am just about to move past my 6th year. Last night, I entered a rehearsal studio at 8 pm with my guitar and voice and was still rocking with a band at 11.30. Not much sign of dementia here! I was always told when I was dxed that the biggest indicator of future cognitive issues was the early appearance of acting out dreams and/or hallucinations. Even then I know some PWP who had this symptom for 15/20 years and are still mentally healthy.
I think we are either Dopamine- dominant or Acetylcholine- dominant( my case) PD.
I have a zoom meeting scheduled with Mass General during which we will be discussing what PWP can do
few people around me who have had it and were only mildly inconvenienced. I have read of others...
targeted. The intention I have is, raise awareness, funds, and urgency for disease slowing or...