Nature of symptom improvement or reve... - Parkinson's Movement

Parkinson's Movement
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Nature of symptom improvement or reversal

jeeves19
jeeves19

Been thinking about days when I feel better than others and indeed about people who can say things like ‘I’m better than I was a year ago’. Now given that the Holy Grail is neuron replacement and/or rejuvenation, are we we right in assuming that somebody who ‘feels better than they did a year ago’ had replenished old neurons OR created new ones. And if they have, had this been achieved vie exercise or what? And if so, why would scientists bother to apply themselves to stem cell research. I probably sound a little facetious by the last remark but I’m just saying: what has changed inside the brain of someone who claims even a slight reduction of symptoms? My last post was regarding ketogenic. Are the improvements via this due to neural rejuvenation or another mechanism?

All the best gang😎

59 Replies
oldestnewest

Dr. John Bergman says/suggests that neurons hibernate, they do not die. Check him out on You Tube.

jeeves19
jeeves19
in reply to Despe

I WILL watch this but could you explain what his evidence is for this briefly?

Despe
Despe
in reply to jeeves19

Sorry, can't remember, but it did make sense.

the evidence is that in autopsies the find healthy pink cells, where dopamineric cells are normally black (substantia nigra means black substance) black due to their iron content when they are functioning normally.

May I ask another question? Looking for a CURE for Pd has cost an unknown fortune; whereas, if some of that money had been spent finding the answer to your question, "How does exercise improve our condition?", we might have got somewhere!

If I were to be practical and speculate that spending money on answering that question would not put any money into anybody's pocket and would probably reduce the amount currently spent on medication and medical care. Therefore, who would pay for answering that question?

If I were to continue along the line of the previous paragraph and suggest that all of us on HU should consider putting our collective hands in our pockets and raise the money to answer that question, or collectively approach Bill Gates or one of his wealthy friends to help us find the money, then we might just turn the table on the way we treat Pd in the future.

How does everybody feel about that?

jeeves19
jeeves19
in reply to JohnPepper

Well I’ve certainly not improved my condition via exercise John. I may have held it at bay for good periods of time but I’m definitely worse than when I was dxed 3 years ago. But maybe I’d have been worse without it? But I want to know the biological dynamics internally of those who say ‘I got better, not worse’. If neurons are dead then they are beyond resurrection right?

JohnPepper
JohnPepper
in reply to jeeves19

We have spoken many ties to each other but I can't remember if you have tried the fast walking or not. Have you tried it? If so, what went wrong?

fast walking works on several levels. It creates BDNF GDNF which promotes new and health of neurons. Walking also clears your mind and helps you work through tension, relaxing the Amygdala out of its over active fight or flight reflex, which hijacks the dopaminergic process in favor of adrenaline.

I am taking the opportunity to attach an email I received this morning from Australia, from a medical man, whose father has PD=d:

Ausie Dave’s Take on Fast Walking!

John Pepper’s approach to Parkinson’s disease (Pd) is Simple Genius, and it works

As a health professional, and someone who is assisting a loved one to live with Pd, I can attest that what John has discovered through his own experience of negotiating a life with Pd has been nothing short of profound. On the face of it, the techniques John has discovered through experimentation and determination appear very simple - and in fact to some, they appear so simple that they simply mustn’t be true or possible!

But they are becoming increasingly understood and embraced, and I have witnessed, and continue to witness, their effectiveness first hand through the lived experiences of a loved one who has embraced them whole heartedly, and who is still able to walk, perform all his own self-cares, and live a full and active life.

The cornerstones to John’s approach include:

Graded, alternate day fast walking - that is, starting with very short walks, slowly, and gradually building up over time to ‘fight or flight’ walking...as fast as is possible and safe to do so. The science behind this is..through fast walking, the brain releases “Glial Derived Neurotrophic Factor” (GDNF), which assists the brain to unearth and develop new pathways for producing dopamine, which is the crucial neurotransmitter which is in short supply in the brain of someone with advanced Pd. This is neuroplasticity in action!

The process John used to gradually increase his walking (initially in an ingenious South African exercise group) is detailed in his book. It’s very helpful - and I would say essential - for people with Pd to get professional people to support and guide them with the process of improving their walking (e.g., personal trainer, physiotherapist, exercise physiologist, family member, etc). Exercise is key!

Conscious walking technique - Pd occurs due to a dysfunction of the basal ganglia. One of the most important roles of the basal ganglia is to assist a human to put together many different movement components into a meaningful sequence of movements, to perform a particular function (e.g., walking, typing, writing, bringing food to the mouth, throwing a ball). In the case of walking, this is very complex indeed - John has developed a technique in which he overrides the dysfunction of his basal ganglia by using his brain’s frontal lobes (that is, he uses his brain’s executive function), so that he can knit together all the complex movements involved in walking. John explains that people with Pd need to focus on each and every step using their frontal lobes. I have witnessed firsthand the effectiveness of this technique through its use with my loved one. It works!

Proper rest - It is vital to rest on alternate days, as tiredness/exhaustion through too much exercise can be as deleterious as too little exercise. Establishing an early to bed routine is incredibly important, as this allows the brain and body to rest and recover, and assists with neuroplasticity. Get plenty of rest!

Reduced/minimised stress - excess stress impacts badly on anyone’s function, but in the case of people with Pd, undue or excess stress has an enormously negative effect. Keeping stress to a minimum (through lifestyle changes, engagement in hobbies, connection with others, mindfulness, etc) helps to maintain brain and emotional health, and increases a person’s capacity to engage fully in life.

Proper diet - there is a lot of information around now about the importance of maintaining a healthy, balanced diet. The health of the gut is essential, particularly given the gut’s role in producing neurotransmitters. Minimise drug and alcohol intake. Be aware of what foods not to eat, when taking medication. Also be aware of when to eat and when to take medication, because levodopa medication should not be taken when there is protein in the gut. Protein and levodopa combine in the gut and the levodopa does not get to the brain to do its work!

Keep your mind active - whether it’s through reading, doing crosswords or puzzles, playing cards, playing a musical instrument, learning a foreign language….whatever, it is vital to keep your mind engaged in life.

Stay socially connected - we are social beings, and social connection is particularly vital with Pd. Many changes seen in Pd are secondary changes to reducing one’s engagement in life and community. So, stay connected with your people, your places, and your treasured activities!

Things I would add to John’s techniques might include:

1.Early intervention – become aware of the many possible symptoms of Pd and if you have several of them, then consult your neurologist. At the first signs of Pd, engage in the techniques which John describes. Do not delay. I think over time we will see more and more evidence about the importance and effectiveness of taking action early to secure one’s health and maximise function.

2.Get help from exercise professionals - there are plenty of expert people out there to help, and there are even online courses to help you, such as the “Parkinson’s Booster Program” by Invigorate Physical Therapy and Wellness in the US.

3.Ensure that you deal with all health ailments, as much as possible, so that your underlying health is as good as possible. See your local health professional for a full health work up, and maintain a good relationship with them over time.

4.Yoga - find the right teacher, one who will tailor a program to suit you. Yoga helps to keep the body and mind limber, flexible and strong. It helps with balance, concentration, relaxation and, importantly, breathing. It’s an all of body and mind strengtheners! If yoga isn’t your thing, find out what is….swimming...riding (my loved one rides a static trainer and LOVES IT...Tai Chi...Qi Gong...dancing...there will be something out there for you!

I for one can testify as to the effectiveness and brilliance of John’s approach to PD. It works! I've seen it work with my loved one - that is, first hand. John is a true pioneer - in the years ahead, we will owe him a great debt for what he has discovered and disseminated about living and prospering with Pd.

There will be additional things which John has covered in his book which I haven’t covered here - feel free to contact John for any clarification. I found John’s book to be superb - it is the guidebook to my approach to working with people who have Pd, easy to read and readily available.

Thanks ever so much John - your life is an inspiration!

Dave - Australia

Lionore
Lionore
in reply to JohnPepper

I totally agree with all of these recommendations. We should not discount them because they are common sense approaches to living well for everyone, and especially older adults, instead of being some new, expensive medication.

I would add to this; live a healthy lifestyle to reduce or hopefully eliminate the need for hospitalization. Exercise specifically designed to improve strength and balance will reduce fall risk. If overweight, adopt a healthy, mostly plant based diet. You want to stay out of the hospital because even a minor stay there can set you back.

Fredzu
Fredzu
in reply to JohnPepper

You are forgetting the many that can’t fast walk. They have pain in the knees, back. The vertical position invites pain.

I am looking into the horizontal plane with the recumbent bike.

Best,

Fredzu

JohnPepper
JohnPepper
in reply to Fredzu

Hi Fedzu. I haven't forgotten that not everybody can do fast walking. It goes without saying! Sorry you ar unable to do it!

MBAnderson
MBAnderson
in reply to jeeves19

Indeed, there are conflicting theories as to whether neurons die or just "hibernate." I'm going to cast my one vote on the side of they die -- never to live again. Fini, kaput, nada, zip. I think 'hibernationalism' is wishful thinking. (As we all know, there are many, many delicately balanced processes, moving dead material out and new energy sources in, all of which must continuously take place in order for a cell to live. When a neuron is filled up with toxic Lewy bodies, which are larger than the nucleus, it makes some of those processes impossible.)

Despe
Despe
in reply to MBAnderson

You're suggesting that "dead" neurons just sit there?

MBAnderson
MBAnderson
in reply to Despe

Well, I wasn't speaking to what happens to them after they die. I doubt they just sit there for long. They may swell up or leak or do something to cause the immune system, scavenger phagocyte cells, to dispose of them.

they do die if there is a reason for them to die - toxins, radiation, genetic cell death programing, virus, infection, stroke, etc.

Suppose someone said "I am better than I was a year ago", what could that mean? Let's do a few back of the envelope calculations: if something else doesn't kill you first, you have about 20 years with PD, that suggests that a typical decline is about 5% per year; judging by my side-to-side tap test results, my drug assisted best during the day is about 50% better than the worst. So, it would only take a 10% improvement in the effectiveness of my medication to explain an improvement after 12 months. Of course, other factors and therapies may lead to the same effect, but I suspect that for most people the optimization of your drug regimen is likely to overshadow other causes.

Now if someone said "I am better than I was 10 years ago" it would be a far more powerful statement, and much less likely to be due to better symptomatic control.

John

jeeves19
jeeves19
in reply to johntPM

An excellent analysis

Despe
Despe
in reply to johntPM

Dr. Costantini's patients are far better 5 1/5 years after starting B1 therapy than when they were diagnosed.

Parkinson's sufferers want cures and Doctors want cures but do drug companies? People might say what they want to find is costly lifetime drug treatment plans to manage the illness. (Perhaps this is a kind of cure?).

I am sure many people have improved their condition and others not declined. All follow a different paths and do different things. Exercise, supplements, positive thinking, boxing, you name it. There must be some similarities or overlaps but what are they? Unfortunately, there seem to be no stats, no data, no one recording these outcomes. So we are left with word of mouth, trial and error and hit and miss!

jimcaster
jimcaster
in reply to Buckholt

I completely agree. I wish there were studies of many "positive outliers" who are still doing reasonably well (however that might be defined) to see if they have common traits, exercise regimens, or supplements. Even better, it would be even more helpful if they were classified by age, gender, age at diagnosis, tremor dominant vs. Bradykinesia dominant, etc. From the anecdotal self-reported success stories I'm aware of, intense exercise seems to be one very significant factor, but I'd love to learn more about other factors.

jeeves19
jeeves19
in reply to jimcaster

See Laurie Mischleys study.

Hikoi
Hikoi
in reply to jimcaster

Just found this newish blog on outliers

pdmovementlab.com/blog/2017...

Come on, folks. We are not machines, but sentient beings with varying degrees of emotional and may I say spiritual health. If we work on improving these in addition to the critical lifestyle changes suggested here, especially exercise, it is possible that some of us feel better now than three years ago. But ten years from now? Obsession with that far into the future takes away from our experiencing the NOW.

So do you think that a healthy spiritual outlook, exercise and diet can rebuild neurons ?

Lionore
Lionore
in reply to jeeves19

I’m no expert, Jeeves19. Does it really matter, as long as we feel better most of the time, while recognizing, for those of us not early onset, that the aging process itself will slow everyone down?

The key is surely boosting endogenous dopamine levels. In that case either our remaining dopamine-producing neurons work harder or maybe we produced a few more. But we can't measure them objectively! I can increase exogenous levels with LD or MP and so reduce symptoms but I know that is not PD regression or stabilisation.

As JohntPM says progression is slow (same timescale as aging) so watching my symptoms and trying to correlate with changes in diet, exercise and medication is looking for a signal in very noisy data. But anything that boosts our health has to be a plus so I work hard on diet and exercise and try to keeps the meds dosage down! My wife likes the new fit me even though I shake a bit more than I used to!

best Kevin

Good question, interesting thread, good answers - all.

There's a lot of data that indicates new neurons can be created, but the question is, at what rate, i.e., faster than the rate at which others are dying?

It's like looking through a kaleidoscope. At certain times, the myriad of factors line up just right.

I agree with johntPM in that because progression is not linear, the threshold is whether or not you feel better than you did many years ago and, especially, if it last more than a couple days at a time.

He also makes the point that the optimization of your drug regimen may overshadow other causes. However, another interesting variation on the question is, for those of us who don't take drugs, but sometimes to feel better for several days at a time than we have for a long time, what's going on with us? Especially since this used to not happen.

MB. How do you exist without drugs?! I’m puzzled as without them I wouldn’t be able to move much but I don’t want to shift up the CL ladder either?

MBAnderson
MBAnderson
in reply to jeeves19

I really don't know. It could be just plain, dumb luck, genes, my particular subset of Parkinson's, (I believe I'm tremor dominant and I believe we progress slower,) my regimen, but probably, some combination of, and synergy among, all of the above. When I say I don't take drugs, don't picture somebody without symptoms.

My uneducated guess is; as we all know, once we have symptoms for several years, about 80% of our neurons have already died. Because some people who have had PD for many years have become symptom-free, that indicates we could function pretty normally if the remaining 20% were healthy. I imagine that nearly all of the remaining 20% are in various stages of dying, with those neurons that are closest to neurons that have already died, being further along in the death cycle (because the toxicity of dead neurons spread to nearby neurons.) In order for symptoms to diminish, more dopamine has to be available in the synapses and, therefore, something occurred to create a combination of increased blood flow, reduced inflammation and oxidative stress, a more useful formulation and delivery of energy sources for the mitochondria, new neurons, and stimulated autophagy, which then slowly reversed the degradation of dying cells.

But, what do I know...

You know A LOT, my friend. 😊

For what its worth, I think the I’m better than I was a year ago is usually a combination of mental attitude and better self care.

When people say I’m better than I was you often find they have been through a very low period maybe physically but especially mentally and they have now come out of it.

They now care for themselves better

by making peace with the diagnosis - acceptance,

by positive talk (Im better than I was)

by getting used to the medication and using it better

by focusing on good nutrients (diet etc)

by exercise stimulating endorphins ....

by taking each day as it comes

I dont think it is connected with replenishing or replacing neurons. Its more about feeling you have taken back some control of your life.

MBAnderson
MBAnderson
in reply to Hikoi

I believe your explanation does account for people who feel improved, but I was referring to people who are measurably and substantially better, i.e., people whose UPDRS score would be improved.

How do you account for people who have become virtually symptom-free? Surely, that's beyond having a positive attitude?

Plus, many of the things you mention such as good nutrition and exercise do stimulate autophagy, create new neurons, reduce inflammation, and cause other physical changes. Probably, a strong positive attitude also causes physical changes.

Hikoi
Hikoi
in reply to MBAnderson

MBA

I dont know these people who have measureably improved, become symptom free or who have improved UPDRS scores, There may be some but I have yet to meet one. Who are you refering to?

Can you tell me more about the connection between nutrition and creating new neurons, Does this mean dopamine neurons as well? Is there scientific evidence?

I read this today. She doesnt claim to have halted or reversed her PD but she lives well with it including conventional drugs She has had PD for 40 years - inspiring

“You need to become your own doctor. You live with the disease every day. You need to understand what treatment works and what treatment does not work more than anybody else. Doctors just see one moment in a continuum. Of course, you need your doctor. Doctors are very important. But you need to know in a very detailed way how your medication, your diet and your overall lifestyle affect your Parkinson’s. And then you need to be able to communicate all of these things to your doctor. Treating your Parkinson’s needs to be a collaboration between you and your doctor.”

pdmovementlab.com/blog/2017...

MBAnderson
MBAnderson
in reply to Hikoi

Hikoi,

Good article. My take away, 'doctors are important and we need to be in consultation with one, but ultimately we need to be our own doctor.'

I don't personally know any PWP who have reduced their symptoms either, but in support of the point I was making, that significant improvement is the result of physiological changes, I believe we get to count all those on this forum who have improved because of their thiamine protocol, not to mention the 2500 people Dr. C is monitoring. In addition, there are other reports on this forum of significantly reduced symptoms because of therapies other than thiamine (Silvestrov/Rich.)

While I would acknowledge that many self assessments have an element of the placebo effect, it is, I feel, unarguable that the amount of improvement that is being reported on this forum because of thiamine is the result of physiological changes. The most immediate person who comes to mind is Royprop. If you go to the thiamine thread, you'll see that he is unequivocal that he had reversed his symptoms substantially. I can feel the joy oozing from his pores all the way here in St. Paul, Minnesota. In the same thread, I believe there's at least a couple dozen others who report symptom reduction to an extent that their life is much improved.

I periodically monitor other forums which contain similar reports.

I am 100% certain it is true, that lots of PWP have reversed their symptoms significantly and others have become virtually symptom-free because of various non-drug regimens and while I don't have references at hand, for you, I will track them down.

I am also certain there are a number of things we can do that create new neurons as well as rescue partially degraded neurons and I will track down those references as well. Mind you, I wouldn't do this for anyone else. Maybe when I'm done, I'll write a book or make a video and sell supplements.

I can see it all now - "For $132, MBAnderson will send you his secret cure for Parkinson's. Act within the next 10 minutes and he will rush you two secrets." But, I get carried away.

Hikoi
Hikoi
in reply to MBAnderson

Haha, Good one MBA

In case you hadnt noticed, Im a non believer until I have proof and so far you havent given me any, just hearsay and hopeful thinking.

To document arresting or reversing symptoms I would have thought the assessments need to be tracked over time and off meds. The latest trial I was in we were assessed 6 wkly after having been med free from the evening before. While thiamine is certainly exciting the proof would be in such an assessment. I can see people are getting symptom relief and it is worth it just for that but I havent seen proof of reversal yet.

How do you judge reversal as opposed to improved symptom control?

You give two examples, Roy went from no treatment to thiamine PLUS levadopa. I would expect him to be crowing from the roof tops, as at last he is getting some proper symptom relief. (Incidentally he takes 3x 200/50 tabs sinemet a day as do I, I also have 1x 50/12.5, people dont know I have PD when my meds are working, my tremor is well controlled, Im in my 11th year). Silverstrom I believe has never been diagnosd with PD, he diagnosed himself with pre parkinson symptoms which he then treated.

MBAnderson
MBAnderson
in reply to Hikoi

You want proof. Why am I not surprised? I have, actually, always known that about you.

You're doing great and doing something right to be 11 years on and looking like a normal person to strangers. Congratulations. Good for you. It's people like you who give meaning to hope.

So, you don't think Silvestrov has PD? As much good research as he has done and as knowledgeable as he is, surely he would know? If a neurologist said he had PD, that's not proof either. I would guess Rich knows as much or more than most neurologist do about PD. There's a dozen people on this forum that know has much as the average neurologist.

How does one distinguish between reversal and improved symptom control? Good question. It's semantics. They're the same thing. Therefore, rather than talk about shades of gray in the middle, let's talk about significant or dramatic change, that being, going from having Parkinson's for 5 to 10 years with significant impairment in gait, balance, coordination, posture, and tremor -- to becoming symptom-free.

I was responding to your saying that you feel better now than you did a year ago was due to mental attitude and better self-care. My point was/is that dramatic changes are more than that, they are physiological. I'm not claiming that becoming symptom-free is curing PD. I believe that the brain chemistry is different, the molecular composition or what the molecules do is different (in a person with dramatic improvement.)

I think there's something different going on inside Roy's head now than there was prior to his thiamine regimen.

Within the past couple days someone (I believe rebtar) identified someone by name who claims to be symptom-free. Yes, you're right, that's hearsay, but if someone says they're symptom-free, I take it as proof they are. (Otherwise, I have to mail you a symptom-free PWP.)

Is there a way to prove there's something physiological going on? Probably, there is. DaT scan, MRI? For you to be 11 years out and appear symptom-free to a stranger indicates to me there's more to it than Sinemet and you're having a good attitude. Why do you exercise and practice good nutrition? Do they make any difference in your physiology, body, and brain chemistry? You have to answer "yes" to that and if you do, that makes my case.

I've been a strong believer in the power of a positive attitude all my life. It can shape one's destiny, but no amount of attitude, acceptance, or feeling good about myself is going to stop my tremor.

Hikoi
Hikoi
in reply to MBAnderson

Well we will have to agree to differ on this matter. I cannot agree that symptom control and reversal is the same thing. As soon as my drugs are taken away my symptoms reappear and I will be like you. Thats not reversing for me.

When people make healing claims I only accept a medical diagnosis as valid. And as you say that can be wrong too though usually it is because the patient has more than PD they have Parkinsons plus. There has to be one standardised approach to diagnosis or its a free for all. Likewise I do not accept at face value peoples claims, I need to have the details they base their claims on. Correlation can wrongly be taken as cause.

I only know what Silverstrom writes and I dont think he has ever said he has PD. He has said he has pre PD and has stopped it developing. Yes he has a wealth of knowledge. Whether it is as comprehensive as a neurologist I wouldnt know.

As to how I am, i am fortunate in being able to optimise medications and to be an optomist in outlook but there is no other secret except the type of PD I have hides itself well (when it is behaving).

Gios comment below about being aware that ones condition is worsening, yes mine is but meds are still very effective (if I dont eat).

Hope your PD continues to treat you kindly.

GioCas
GioCas
in reply to Hikoi

Excuse Hikoy if I allow myself to intervene here. Just to say that non-motor symptoms such as constipation are known to be not improved by ldopa. In terms of benefits / side effects do not you think it's worth trying a dose of b1 for example 300mg and see if it does something? Like you, I am not a believer because I do not need to believe since I have the personal certainty that works based on the fact that since the first injections of b1 the stiffness of the shoulders and the face have gone away without having taken or other ldopa without having talked to the doctor. This is obviously my personal certainty difficult to transfer to others with simple communication. After three years of use of b1 I am still very happy with this choice, out of respect for the certainties of others I express myself this way. If we examine the history of the great discoveries that have led to advances in medicine we find very often that they were discovered by chance, made by individuals, not at all accepted by the scientific world initially. For example, the discovery of antibiotics such as pennicilina by Fleming which has an Italian precursor called Tiberius. In my opinion it is not a matter of being skeptical or trusting, the results make the difference, or there are or none.

the question may be: can bigPharma find an answer to the PD? The story of the discovery would say no. Those who hold power are somewhat conservative and not inclined to change. This is the history of man: changes vs status quo. If we have arrived here it is only thanks to a dozen individuals who have pushed the technique to the point where we are at a high price.

Times must change.

Maybe one morning I will not be able to get out of bed easily and I will have to write a post: "Guys I'm wrong ..." and I'll do it, but for now it's not like that.

Gio

😀🌸🌷🍀

MBAnderson
MBAnderson
in reply to GioCas

Gio, great video. Thanks. I wish I had a flower shop in Italy.

Hikoi
Hikoi
in reply to GioCas

GioCas

Thankyou for your encouragement. Yes I do intend to try it but being in a trial means I shouldnt change my regime at the moment.

I guess my point is not dont try things but keep a balance. Claims of miracles and of cures are just claims. Check them out. Dont let hope or despair rob us of common sense.

MBAnderson
MBAnderson
in reply to Hikoi

Hikoi, I appreciate your insights. Thank you. I learn something every time I read 1 of your posts.

Hikoi
Hikoi
in reply to MBAnderson

You keep me on my toes 🤔 good for the brain cells

Nice one Hikoi. Makes sense. Thanks and hope alls well with you.😊

Parkinson's gives motor but also non-motor symptoms such as fatigue, intestinal disorders, bladder and cognitive disorders. Over the course of one or more years, through the UPDRS test, a person knows if his general neurological picture worsens more or less slowly beyond the fairly negligible daily highs and lows. Just remember what he did a couple of years ago looking at the photos and will have this awareness. This is why we have smartphones as well as to chat with HU's friends.

GioCas
GioCas
in reply to GioCas

Ah I would like to add a question a little off topic:

But your neurologist does you the UPDRS test every time including the Pull test, the short videos with walking and talking, the video of tremor if there is, interview, every time he visits you . My neuro does!.

Do you all have a personal reference UPDRS test?

Gio

In reading through abstracts about neurogenesis, I found (and I should have expected this,) studies which conclude it does happen in adults and a recent article in the Atlantic magazine (link is below) which says it doesn't -- so, once again, we can choose to believe whatever we want and defend it.

TED talk; 11 mins

Dr. Perlmutter; how exercise produces BDNF which regulates neurogenesis

20 mins

Proponents say it can be stimulated by vigorous exercise, intermittent fasting, music, calorie restriction, sex, meditation, pleasure response, and whatnot.

selfhacked.com/blog/can-reg...

societyns.org/runn/2009/pdf...

qbi.uq.edu.au/brain-basics/...

ncbi.nlm.nih.gov/pmc/articl...

theatlantic.com/science/arc...

I’m sure that we can and do grow them MB but wouldn’t know if they’re the type of neurons we need to restore movement. For example, I think fasting tends to promote neural development in the hippocampus primarily whereas where we want it is the sub nigra. We cannot know where new growth is taking place or direct it accordingly

MBAnderson
MBAnderson
in reply to jeeves19

I agree.

the new growth is in all brain cells and mostly in the form of repairing connections of the frayed wiring. Perhaps not so much genesis of actual new cells

ddmagee1
ddmagee1
in reply to jeeves19

Always good to hear your ideas jeeves19. I know for myself, that exercise, range of motion, and some vigorous exercise, is helpful, especially in dealing with muscle stiffness and rigidity. Walking each day has helped my wobbly gait patterns. Also, the role of neuroplasticity must not be counted out, as, perhaps, a help to patients dealing with symptoms of PD. I’ve completely changed my diet to a Mediterranean based diet, mainly, cut out sugars, fats, starches, etc. and lost 58 pounds. I do feel much better now, then I did three years ago, and I have been diagnosed with PD and Cerebellar Ataxia.

Wow. Apologies for not reading every reply first - reminds me of a HiFi forum I belonged to. So much volume of posting. Interesting, but overwhelming.

I am really interested by this point, and it seems there is an obvious answer. Parkinsons has relatively little to do with dopamine. The traditional view is a disease mechanism nukes dopamine neurons and the loss of neurons creates the symptoms. This just doesn't work for loss of smell, constipation, mood issues etc. And lab tests on mice with gut bacteria didn't nuke and then recreate their neurons

I think the "disease mechanism" is responsible for many (most) of the symptoms. And in support of that, I have to look at my own disease progress / symptoms since starting project microbiome. Admittedly over a short time period compared with many on here. I am a Parky newbie. But the likes of alpha synuclein, pukka and mis-folded do more than just damaging neurons

My avatar (little round picture thing, whatever that is called) is my own DATscan. I am on no medication (yet). Since that holiday snap was taken in early May 2018 my condition has improved. I doubt very much a photo today would suddenly have brighter putamen.

Jeeves, baby, I want to add that one of the things that makes people feel better sometimes than others or even gives a lasting improvement in some cases is how much tension are you holding on to. Almost universally, I see that PWP are more symptomatic when in a state of stress or an increased degree of anxiety. When your brain, specifically the Amygdala, senses a state of fear, it responds with fight or flight mode, bypassing the dopamine pathway in favor of adrenaline. This would explain the dormancy of living dopaminergic neurons, not death. I find that in cases such as ours, psychogenic Parkinsons, you have REAL symptoms with not much evidence of an organic cause. Conversion disorder, perhaps, where a person suppresses emotions and it comes out as a physical manifestation, such as pain, eating disorders, etc, and I hypothesize even Parkinsonism. So what do we do about it? Well, Im going to get flamed for this, Im sure, but I have had at lease some degree of success by working out what is causing the subconscious rage (youre not even aware of it) and processing those emotions through introspective journal-writing. It could be childhood trauma, things that shaped your personality or the pressures of everyday life. Take 20 minutes a day to find a quiet, private place to write about any of these three things and I believe you will feel better and better over a short period of time. More about this in the videos linked below.

youtube.com/channel/UC-tz1D...

Niciholes Sachs LCSW talks about the cure for chronic pain in the four videos here. This works for psychogenic parkinsonism as well. Just substitute pain for symptoms. Everything has a mind/body component to some degree. I recommend you watch all 4 parts, but the good stuff is in part 4.

Jeeves, and everybody else who reads this, i urge you to give it a try if you want to recover those dormant neurons. It may or may not get you back to 100 percent, but I guarantee you will experience at least some degree of benefit from this! Think psychological and not physical. Please follow up with your results. Reply directly to me here.

One more thing - some people will subconsciously enjoy the secondary gains from a debilitating disease and not even realize it, for example, it gets you off the hook from going to work or household responsibilities. Dont let your subconscious fool you into that trick! Like I said, you dont even realize this because the subconscious is not readily accessible to the thinking part of your brain (Prefrontal Cortex).

Again, very interesting and cerebral thinking from you, bassofspades. Thanks for the insight!

Dd, are you going to try it?

Yes! Actually, I have thought along those lines before, having a rough childhood, and studying a lot of psychology in college. I have not written it in a journal and put statistics down. The mind/body connection is real and influential for sure. Coupled with physical disease, and thinking about deficits and neuroplasticity, I do believe that I have been able to help myself deal with having PD and Ataxia. So, in other words, just giving in to apathy, and not trying to improve myself with physical exercise, better eating habits, and improving my thinking, by challenging my thinking and problem solving ability, is not the route I wish to go. I want to fight this disease process with everything I’ve got, to help myself, so that I can live better with it’s sometimes annoying and debilitating symptoms. The human brain has the ability to relearn and adapt in ways that still are not completely understood. We, as Parkies, need to embrace that and try to forge a new way of thinking about how to overcome symptoms of PD, and try our best to help ourselves. I think about seeing the movement disorders specialist, just, perhaps, an hour or so a year, so there certainly isn’t going to be much support or help, from that corner, for any amount of time. It’s just the way it is. These forums and support groups are great, because this is where we, as patients, can learn a lot from others, discuss our ideas, and, perhaps, find ways to help and support each other, and help ourselves in the process. So I will continue to pursue this , and start a journal. Thanks again!

Great! And you dont have to keep your writings. You can write it then burn it. Its important to dig out the hard truths, as if you're an angry 5 yr old writing it. You had childhood troubles? You know, the subconscious knows no time. Everything is now in there. When you write about it now, as an adult, you may briefly relive that pain but you will also release it and think, ya know what? That happened, that sucked, but im alright now! And at that moment, the truth just set you free.

Every little thing builds up over time, and little by little we can ladel out most of the poison from the big cauldron of our subconscious. Childhood trauma, personality issues (need to be liked, good, perfect) and the pressures of life (bosses, kids,work, spouse, bills, school etc)

Please follow up and let me know how you do.

Bass. Will be writing to you privately when I get 5. Good to hear from you as ever. All the best buddy.

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