My PD first became recognizable to me on June 20, 2021. I have 'not' been to a doctor because at this point in my PD -- there's nothing a doctor can do.
99.999% of my tremors are 'internal.' Thousands daily. Foot cramping also.
Most particularly disturbing were my "eyelid tremors" for which I went to an ophthalmologist. He was not helpful.
I live in a very sunny climate so it's easy for me to get sun daily. I try to get at least 15 minutes each side, daily. Sometimes (like today) I do 30 minutes each side.
Today is day #28 that I have been on the O.M.A.D. (one meal a daily) diet.
I encourage you to visit YouTube and search for "Dr Berg Parkinson's Disease" and his videos on autophagy. I also recommend Dr. Sten Ekberg's channel, as well.
"Dysfunctional autophagy has been shown to contribute to the development of neurodegenerative diseases, including Alzheimer, Parkinson and Huntington disease (reviewed in Menzies et al., 2015). In the absence of autophagy, persistence and defective clearance of misfolded proteins and protein aggregates result in progressive neurodegeneration. "
NOTE: I am taking over 40 different supplements daily. But I did not see any results from those... But I DEFINITELY see results from sunlight + O.M.A.D. + autophagy.
Please don't talk about 'your PD' when it hasn't been dx by a professional. Early PD is hard enough for professionals to dx despite them having seen 100s or 1000s of cases over their careers.
Also, my overt neurological symptoms came and went (unpredictably) for about 3 years after they first appeared and that was without any interventions whatsoever.
No wrong and very uninformative. Neurologists today have many tools for diagnosing PD in the early stages. With the help of the Dat scan, MRI and finally the response to L-DOPA symptoms, a neurologist has almost certainty about the diagnosis of PD, even early.
False. Your obsession with me (following my account at 530am Italian time only to unfollow, yet again? Get a hobby. I don't mind if you follow me, but following then unfollowing then following then unfollowing is a bit creepy) is clouding your reasoning. Again.
You just show how clueless you are. A patient with only internal tremors will have great difficulty getting a dx, and for good reason. They won't even get sent for a DAT scan. Or prescribed CL. Hell, they will be lucky to get an appointment with a neurologist. It will be initially attributed to anxiety or a dozen other things before PD is even considered. Even your friend ccr agrees that diagnosis is difficult in early PD. Or maybe she is lying? Take it up with her, I guess.
Even after multiple visits to the neurologist, PD is frequently mis dx.
Systematic review evidence of the accuracy of DaTSCAN in diagnosing early Parkinson’s versus healthy normality reported low sensitivity from a single study of only 38%.In other words, most of those with early Parkinson’s had a normal DaTSCAN. There was no clear evidence that DaTSCAN is accurate in diagnosing early Parkinson’s.
From your previously posted research, a 2016 study of data from 25 years earlier, the researchers ask this:
"Conclusions:
...
The misclassification rate should be considered when calculating the sample size in both observational and randomized controlled trials. Imaging and biomarkers are urgently needed to improve the accuracy of clinical diagnosis in vivo.
I do not "making in up" anything, it is you who suppose unlikely visits from patients.If you want I can read you the two-page report that a neurologist issued at my first visit, motivating the request for DATSCAN, brain and spine mri, complete blood tests, after a thorough examination in which he verified the posture, the reflexes , gait and pull test. Also did an interview on family history. All in the absence of tremor. Precisely for this absence of tremor he decided that for a correct diagnosis it was better to perform a DATSCAN, which was then positive.
This is the correct context, but you should know that.
The published literature supports my position. It doesn't say every dx is wrong or that every dx is difficult. You assume every dx is like yours. They aren't.
But you know that, you are just here to creep me out.
Gio, good man, do not assume others are altruistic as you are. Some are not motivated to learn. Some desire to judge and to be right. All of us get our dopamine rush in some way. For some it comes from healthy coping skills like contributing. For others it comes from one-upping, put downs, and arguing. My Dad became this way. He went from being a man who greeted the day with proclaiming to me “life is good Peanut!” To constant critiques and put downs. I became a target. Those who constantly critique and police posters and put them down deserve our empathy because they are unwell. I am not targeting one individual with this comment but all those who launch in to personal attacks. I, as you know ☺️ respond to personal attacks with sarcasm which is not a healthy response either but it is the coping skill I cultivated after years of dealing with my Dad with PD. I know not engaging, silence, is best.
Anyways dear Gio, I as always appreciate your good spirit.
I think the poster had some valuable personal information to share and it is a shame the subject was derailed.
You miss the point entirely. You derailed the posters subject and you did so intentionally. The need to critique all the time is not a show of strength but of insecurity. As our brains continue to decline, we will be judged increasingly by our morality and character. The ego and dopamine boost of arguing does not serve a PWP well in the long run. I wanted to learn more from the posters experience but you made sure we could not.
I asked the poster to refrain from self dx, as a) it is unhelpful because it muddies the waters and makes the acquisition of useful information more difficult than it needs to be and b) because some people find it offensive. I then offered some relevant personal experience about symptom variability.
The OP then became very abusive. Of course, you are ok with me being abused.
Your hatred of me (you can deny it all you like, but it leaks out of every communication you have even in proximity to me) and your unwavering dedication to tribalism over the pursuit of reliable and relevant information will not serve you well.
I wanted to learn more from the posters experience but you made sure we could not.
Are you gaslighting me? The poster literally answered your question below after I posted.
Tribalism: I gravitate towards kind and well intentioned people who selflessly share their knowledge and experience. If they were to be my tribe as you call it, I would be honored.
It is egotistical to think I am invested enough to hate you. I sincerely do not have one drop of hatred towards you personally. You have my empathy. You and a few others on here remind me of my Dad and how PD changed his personality. But as I have previously stated, I do not support your constantly derailing posters subjects by means of critiquing and condemning them. It is unkind and not constructive.
You have been very unkind to me on numerous occasions for about a year now so communicating with you is not good for my mental health.
I am inclined to continue to stand up for posters as I appreciate their good intentions and contributions but I know it is in my best interest to avoid communicating with you directly.
You've never showed me even the tiniest amount of empathy yet have insulted me both directly and indirectly on a regular basis. Your words do not match your deeds.
We all recognize his Ad Hominem attack and silly projection.as usual. You’re exactly right in your astute assessment but some are simply incapable of seeing themselves in the mirror even when called out repeatedly. Save yourself from the efforts and avoid the stress of dealing with those stuck on aberrant tryptophan metabolism perpetuated through negativity. 😉
This poster was rude and abusive to kev and Bolt with name-calling and profanity which the moderators rightly deleted. He was also overtly political and vicious with it.
The poster derailed himself/herself. He or she was extremely rude. It is justified to scrutinized those who claim to be cured from internal tremors that only they can feel, see and know. Otherwise just about anyone can claim have been cured of PD. Its always suspicious to me because a vast majority those who claim to be cured of PD talk about internal tremors and you just have to take their words for it
He or she should have calmed down and answered kevowpd in civilized manner
Really, has your standards gone that low? Did you read the poster's post at all?
In my opinion such abusive members have no place on this forum. If such a new member is that rude to a common scrutiny of his claim, you can imagine how toxic he will be in long term
Grumpy, no, I see it now because it was immediately and rightly canceled by the moderators, on the reporting of others who were there at that time; you can ask them .
IMO You might also wonder why the post you are referring to was reported and deleted by those who, after hours, re-propose it by associating it with people who have nothing to do with that post to discredit them.
As you see the point here is the method of dealing with truth. Truth has two sides. There is truth and the way in which truth is relayed to others, i.e. how the truth can be altered, omitted in part, silenced, modified in one's favor, or simply brought back in its integrity of time, place, events and intentions.
Times change but the propagandistic method is always the same: to alter alter and re-alter the facts.
Sad to see, but that's it. The thread , as you read it now, is significantly altered and in some points incomprehensible.
My judgment is always the same, I value people by their actions.
The standard is always very high: a person is of value when he is of help to others, in practice.
Same here, my HWP misdiagnosed twice a year apart, because not tremor dominant PD, Movement specialist attributed his facial masking to poor sleep, and gait problems to bad back. Lazy doctor did MRIs that were normal etc. Switched from local hospital neuro to a Parkinson's Center of Excellence (they are around USA) and DatScan confirmed PD. He suffered for 18 months because the movement specialist was a lazy doctor. Really have to advocate for yourself.
That being said, we live in Florida and HWP gets good daily dose of sun, no real improvement, I would say infrared sauna better at detoxing than sun.
PD patients are more susceptible to melanoma cancer so be careful, Hidden, (that is well documented). Early morning and late afternoon sun the safest.
I do think Hidden is on to something with the fasting, our bodies clean up and detox at night. Unfortunately my HWP is a nervous eatter, especially at night, trying to get him to go 10 hours without food.
It's a process to figure out what helps. Currently excited about fisetin supplement.
"Unfortunately my HWP is a nervous eatter, especially at night"
This needs to be addressed first and must be stopped. Eating late at night or munching on snacks will directly contribute to poor sleep, increased insulin resistance, increase metabolic risk factors, etc. Ideally, you should be done eating by Sunset.
I actually now lock the refrigerator and cabinets. He has done this for years, sometimes didn't eat all day until dinner, that and stress contributed to PD.
My husband has not been diagnosed. It was only in Feb 2019 when I joined this forum that it dawned on me that he had PD. It was a terrible sinking feeling and confirmed my fears.
Thank you for sharing your experience with OMAD and sunlight. My PD was recognizable to me years before being diagnosed. Having internal tremors makes being diagnosed almost impossible. I relate. I was tossed around to various doctors before figuring it out myself. That is excellent that you are being so proactive! May I ask how long your eating window is? I was doing doing 2-3 hours but am presently doing 4.
I do a monthly longer fast 48-72 hours.
I take goodness, about as many supplements.
thanks for your common sense reply----------------------------------------------
I eat just once a day.... so my 'eating window' is an hour...
Last two days I did a 46 hour fast.... yes.... i got hungry the second day so it wasn't a lot of fun... Surprisingly ... I have found it very easy to do O.M.A.D. ... And I am LOSING WEIGHT! Yippeee!
I love your spirit and dedication! Husband has two meals a day, but not intentionally. He just doesn't have much appetite. Cleveland Clinic FM started him on a keto diet and that helped him lose about 30lbs. He is not on a keto diet any longer, just caloric restriction.
OMAD is an interesting subject imho. I have been doing it for most of a year. Those interested might like this video.
For those at risk of being gaslit by the likes of CCR and Rescuema, this is how I was spoken to by the poster now known as 'hidden'. This was in response to my opening comment. You may not agree with my opening comment (though apparently some do), but is this appropriate?
This is the kind of conduct they advocate for when it is directed at someone that is not a member of their clique. I will allow others to judge it and those that support it.
OMAD is interesting. Autophagy is interesting. Accusing me of things is not interesting, healthy or productive. I repeat, I never saw the above. It was ERASED obviously. I never saw it.
This post should not be about me or you. It should be about a subject relevant to PWP.
Your personal attacks are unhealthy for you and everyone.
One of the easiest way is fasting or calorie restriction- which is why OMAD or eating once a day works for people who do not have to fight weight retention or nutritional deficiency. Intermittent fasting with restricted eating window applies same concept. You may also try fasting a day or two on regular intervals.Read the below for some signs of autophagy .
Thanks. Autophagy means the body eating itself. As in the body clearing alpha synuclein deposits. I assume that's the connection to PD? But as a remedy for PD it doesn't seem to work for me. I eat twice daily and often one meal is a smoothie. I check ketones using urinalysis strips. They show low-level ketones. But I'm not losing weight. I've been stuck at 200# since developing PD three years ago.
I know from long experience that I eat too much. But running 50 miles per week for 30 years kept me lean. Now I'm not running at all. I just don't feel like it. I guess it's lethargy or depression. I'm hoping things will improve as weather improves.
Autophagy is just one of the factors to address and there are always other rate-limiting factors. Remember most illnesses are multifactorial there are many holes on your roof so plugging just one hole isn't likely to resolve your problem. However, something doesn't add up if you're not losing weight with properly restricted calories, and as you state your heavy meals may be prompting your body to spike insulin counterproductive to benefit. I suggest you avoid smoothies and eat/chew whole foods to lower the sudden blood sugar spike, especially if it's not low in carb/glucose.
You might also try a full day or two of fasting instead, at least to start losing some weight to get to a more healthy range. Once you get over the hump, your hunger and cravings should diminish making it easier to sustain. Watch this video for some ideas. youtu.be/GNUSFaQIIjg
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500 MG of thiamine joy
Just Tremors or PD? and psych issues
