I have seen posts and comments suggesting that the quality of other people's posts and comments are no longer as insightful or helpful as they once were. I'm not sure that is true.
When I first came to this site, I knew very little about Parkinson's except that it progressively gets worse, there is no cure, and medication only provides temporary symptom relief. I was scared to death and eager to learn anything from anyone who might offer some glimmer of hope. Through this site, I have been delighted to learn about exercise, high dose thiamine treatment, and TruNiagen, and many other things like stem cell therapy, gene therapy, and Focused Ultrasound, just to name a few.
In my early days, I breathlessly reported about the latest "successful" study of fruit flies and mice and other creatures and I scoured the internet, hoping to find some new "miracle cure" or anything which might somehow be beneficial. I now see many "Newbies" reporting on many of those same things. What once seemed insightful and interesting is now repetitive, boring, and sometimes silly.
However, I don't think the quality of our posts and comments are any worse than they ever were. I just think the most experienced PwP on this site are more knowledgeable (and maybe more jaded or realistic, take your pick) than they were initially. Fruit fly success and Himalayan goat cheese extract are not as exciting as they once were.
I think this is an EXCELLENT site with well intentioned people and I'm grateful every day that I can learn from the posts, comments, and experiences of others. In a very real and meaningful way, you are all my friends. Whether newly diagnosed or a wise old veteran, you are on my team and I am on yours. I sincerely believe I will live to see the day when Parkinson's disease can be slowed, stopped, or reversed. Until then, let's try to stay positive and supportive. We are all in this together.
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jimcaster
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Surely, we all go through that phase where we hope that what was just discovered in a roundworm might hold promise for us -- when, I hate to break it to the newbies, it almost certainly holds no value to any PWP who's alive today. Saying that does not deprive people of hope, it deprives people false hope.
You're right, most questions get asked and discussed, usually several times, and after you've participated in a few those discussions, they're not quite so interesting.
Overall, I believe the substance and quality of the posts improves with each passing month, in part, because the pool of serious researchers continues to grow increasing our collective base of knowledge and it is clear to me there are more serious researchers on this forum now than there were when I joined. Dozens and dozens.
I, for one, am not unhappy with where I am 10 years in and I owe 100% of it to the graciousness and generosity of the people in this forum. I continue to find valuable nuggets, but one aspect of this forum that we should not overlook is the value that grows from the community of like-minded people facing a daunting challenge together -- realizing that facing it with others makes it so much more tolerable.
Right on! This forum has been of more help to me, than any other resource I have, to help me deal with the multiple challenges, one faces with chronic disease - specifically PD, on a daily basis. I see the neurologist, perhaps, twice a year, for a short time, so I get medicine, ( example: Sinemet ) , to help, with very little explanation or advice from the Dr., and thatβs it! There is no going into detail, about how to cope, and deal with many symptoms, in a practical way! So, this forum supplies the details, I need, to help me deal with many aspects, of PD, from people that are like-minded, many of them dealing with being diagnosed with PD. My attitude is that I can learn a lot from the experiences of others. I donβt see any of the routine, less interesting posts, that some may feel, is making this forum, perhaps, not as good as it once was. I appreciate the efforts of all, who have shared, and contributed their thoughts and useful advice, to this excellent group/forum!
On a lighter note... when I first read your post I thought you've been on HU (or been diagnosed) since something like 2009 or so (don't even know if HU existed that long ago)... But when I checked your profile, you were diagnosed and joined HU in early 2018, about the same time as me π
We're both still newbies my friend πππ
At least I still consider myself as a newbie,...
On a serious note... My expectations of post standards is very open because PD doesn't discriminate, it hits people of any background and of any age and all are free to join, commenting and posting according to their background, natural ability and ageπ
Remember the book "All I Really Need To Know I Learned in Kindergarten" ? Well after being on this forum for the past 3 years I think I can write a book "All I really need to know about PD I learned on HU"
I'm super thankful for all that I've learned here, grateful to all of you who share research, wisdom and support. It's a great place to be and I also recommend it often.
although my neurologist is great as he is patient and knowledgeable, two years ago I I asked him about taking mannitol for Parkinsons and he had not heard of this. So it made me realize that there are so many different voices on the site and many of them are truly ahead of the game! Not only that, but they are also generous with their expertise, knowledge or experience. They are my teachers and I am grateful every day.
My husband has been on Mannitol for a few weeks and the results are fantastic. Since then, he was admitted to hospital. While there, we were told by doctors that they use Mannitol for brain injuries.
Added to that, when we visited our GP and told him about using Mannitol, he said that when he was doing his training in a major hospital, it was used in brain surgery. This was In 1973! We are in Australia, but Iβm sure it would be the same elsewhere. How can this be, I ask myself.
We are visiting the neurologist in early March. I shall be very disappointed if he doesnβt know the above, and/or the Israeli research.
My husbandβs improvement has been mental. Heβs lost his apathy, taking a lot more interest in whatβs happening around him, and no more fogginess. I feel Iβve got my husband back, thanks to this site.
Can you please say more in detail about what the mannitol is specifically used for in your case, what complaints what symptoms and what dose and schedule and then finally what the specific facts have been, and if it's supplement or prescription, where you get it,... thanks very much if you can do that!
Hi Marion, my husband doesn't have your "garden variety" PD, according to his neurologist. His main symptom from the beginning has been apathy, initially diagnosed as depression, then Lewy Body dementia. After being put on the Neupro patch and having amazing recovery, he was rediagnosed with PD. After many years, the patch has stopped working and the severe apathy reappeared. Xadago has helped some, but after reports on this site, we have tried mannitol. We are using it in the hope that it would restore my husband, Alan's, sense of taste, which according to some reports, could take months. But the thing it has done is get rid of his apathy. Is that because the mannitol, which gets thru the BBB (blood brain barrier) is taking the meds thru. We don't know. You can read about it on syncolein.com. See the video on this site. Also Google https/parkinsonsdisease.net>mannitol. That site suggests that mannitol may take the meds thru the BBB.
You can read members comments on mannitol on this site as well, which I did again recently.
I sourced it here in Australia from the manufacturer. It's certainly not a pharmaceutical here. It's not expensive. I did see that someone also sourced it similarly in the UK. Syncolein sell it as well. Their product is specifically for PD and has an added ingredient to prevent nausea, which can be a side effect. The dose is small. It's 1tbs. daily in coffee. My husband doesn't have any problem.
Any other questions may be answered if you read all the past comments on this site, or get in touch again.
Reading about your husband made me curious...how exactly was it determined that his is actually PD, as opposed to something more treatable from the psychiatric/depression side at the moment?
The usual current considered more or less definitive diagnostic confirmation is with a DaT scan. This scan determines the output of dopamine from the manufacturing cells in the brain center that is fairly definitive. If it shows your four little regions i the subtanta nigra are underproducing or stopped, that is the sign for a diagnosis the field considers definitive.
If they are producing within expected or "normal" limits however, then something else may be at work, at least for the moment. They may indeed combine that fact with the limited number of associated symptoms to suggest perhaps an early, less certain diagnosis of "parkinson-ISM." Other than standard or typical treatments might be implied, since the typicals them might turn out to be ineffective or even produce new or adverse effects because they do not match the disorder label for which they are approved.
After that (as perhaps in your case) there may be questions as to what type, and whether at all, a different form of PD is present. My experience is that it is rather unusual, though not impossible, to see only the apathy symptom in the absence of any other symptoms, except early on...though it certainly can be, because what may show earlier than more commonly seen PD versions can be among those odd things that precede emergence of traditional PD symptoms and diagnosis, similar to various forms of depression...and also common as "negative" symptom of schizophrenia or other similar dopamine-involved psychiatric disturbance. For deppression, which is often addressed medically using medications that direct toward the 5-htp/tryptophan/serotonin neuro signalling tree (in relation to the dopamine mechanmism tree, perhaps the htp tree is analogised as the ladder up against the opposite side of the house that you are climbing up). Different meds, different mechanism approach, for the different symptom picture reminiscent only partially of PD, but perhaps as much or more on the depression side of the yard. Eventually as age comes these two trees tend to come closer together or even meet up, but early on they almost seem to be unrelated complexes. Chemically they are more interconnected than many folks realise.
Not my business of course and you haven't asked for help, but are you quite definitive that he has PD or only PD, or are you yet in the stage where you are not definitive that what he has is PD?
Regardless of dx, the other thing I wanted to mention was that if he had such a good response before to Neupro, my observation is and the psychiatric field in general have acknowledged (though not to patients so much) that some, actually many, medications work fine for a while and then seem, sometimes gradually, sometimes abruptly, to lose their effectiveness. They even have a technical term for it that they actually resent if you use it at them: "Poop-out." As in "prozac poop-out." Typically one then goes on a search for a different medication.
This refers to the tendency of neural systems to have the capacity of plasticity, wherein some of the the receptors involved will move, shut down, reduce production, change their cluster density, in the presence of an external supply of the same sort of chemical (the anti-depressant in this case), sometimes referred to as feedback loops (negative and positive, which can be present at the same time and even at differing rates). (I've actually seen the electron microscope pictures of this happening in children exposed to THC as their cannabinol receptors move themselves to abnormal locations along the outside of the affected nerves housing the cannabinoid receptors, which disrupts normal function and results in some of the learning and attention and concentration and thinking problems of youngsters if they don't get those receptors migrated back to where they need to be permanently before they lock down their location permanently; these are infants and sometimes foetuses in utero).
The thing is, these receptor systems are also sometimes capable of returning toward their original configurations and functions after a sufficient time of "vacation" from the external signal invasions of the medicine, wherein the medication is stopped for a significant time for the system to return...whereupon sometimes you might be able to get a second course of benefit, perhaps less benefit this time, or requiring more medication, but in any case, sometimes of benefit, a "second round," so to speak. May not work, but if it did, you did say you'd had a nice period of benefit before with Neupro...whether that might have rather been your honeymoon period of PD rather than the Neupro itself, I would not know, but in psychiatry, more typically in depression, sometimes the prospect is worth exploring. For what its worth.
Thank you for going to the trouble of writing to me. Here's his history.
Because Alan's apathy was so severe, I haven't mentioned his other symptoms. They somehow didnt seem to matter. But now they do. I'm not the most patient person in the world, so I'm very frustrated that he had a fall, hurt his back and so can't do much physically.Grrr.........
After spending 2 months in a private hospital in Melbourne (Australia) in 2012, being treated for depression (hopeless, as they didn't look outside the square), I sourced a new GP.
OUR new GP (who I'd sourced because of his interest in mental illness) sent him to the APATT (Aged Psychiatry Assessment & Treatment Team). This is thru our pubic health system and consisted of a psychiatrist, a clinical psychologist and a team manager. (I loved the team manager, as he kept everything/one grounded).
Fairly quickly, they sent him into Royal Melbourne Hospital, where, in a special ward, he was observed for a week by neurologists, and others ( including Andrew Evans, one of our top PD neurologists). I know he had an MRI, and they did the usual pull/push tests, etc. He had lots of PD symptoms, but no tremor. The LBD diagnosis was reached because he was not interested in anything, lying on the bed doing nothing.
He then started attending the Movement Disorder Clinic at the Royal Melbourne Hospital. It was here that the Neupro patch was tried and the diagnosis changed.
We are now seeing a neurologist privately. He was part of the team at the Movement Disorder Clinic. He was the one who suggested the Neupro patch. At his suggestion, we still attend the clinic. He doesn't think he is invincible, as some do, so wants other input. I did ask him about Parkinsonism and he said no, it's not. I will ask him about the DaT scan.
His blood pressure has caused him lots of problems. For years he had high blood pressure (possibly genetic). While he was being treated for depression, I noticed he felt dizzy when he stood up. Finally they took notice of me and found, yes, it dropped dramatically when he stood up. He was put on Florinef, which was good, but then, after a few years, his BP went up again, so off the florinef. By then he's going to a urologist with a bladder problem, trouble urinating. This meant that if he stood for too long in front of the urinal,so his blood pressure dropped and he fell! When he went off the florinef, his bladder problem went away!
Now, his blood pressure can be low in the morning and much higher in the afternoon. After a few trials and the fact that his low blood pressure is not so low since the introduction of the mannitol, no blood pressure meds at all.
We tried the B1 protocol, but (maybe because of my impatience/increasing the dose too quickly) it sent his blood pressure thru the ceiling. He's on 275mg now. I may increase it, but need everything to settle first...patience.
Alan still doesn't have a tremor, but has : rigidity, shuffling, bradykinesia, swallowing, soft voice, Parkinsons mask and very little sense of taste.
Doctors are just people too, and sometimes or some of them must be treated as such. I would say you need a group of professionals who are willing to work as a team because this is a multi-specialty concern (frequently seen in medicine, no surprise to anyone) and they need to work with each other not at odds to each other, resolving multi-system interactions and conflicts rather than creating them.
The postural hypotension is a serious problem BUT maneageable without creating other problems if the practitioner and insurance\formulary authority prescribing and authorising from the many many BP and cardiovascular alternatives can be motivated to give a rat's ass. Some neurological and psychiatric treatments work well without causing conflict and others cause significant conflict, but it doesn't take a professional that much time or effort to resolve some or most of the conflicts among the numerous alternatives often available.
There needs to be a simultaneous team willing to collaborate, also not unheard of in modern competent medicine. Yours should at least include psychiatry, neurology (these are different spheres of competence and specialty), a cardiovascular specialist, and an internal medicine specialist generally called an internist, to keep treatments from working at cross purposes.
Regardless, whovever you have, the bunch of them need to quit playing their very dangerous little "bait and switch" game with each other, the "pinball action" could kill your husband.
Next, I don't know about your physician practices and ethics culture there, or whether they sre buttressed by civil and insurance malpractice laws and the "do no harm" requirement to motivate big ego doctors down under like there are in the US (where if you become an assertive, informed patient and consumer, and show it, they respect you better for it), so I don't know if assertive hints about "continuity of care," "doing no harm through failure to recognise practices that contradict and contra-indicate health needs subject to other medical specialties and overall health needs" carry any weight with your lot...but sometimes these guys need to be managed some, else they can end up "pinballing" you around, consume you and harm your health rather than the reverse, for lack of having enough patients with some spine.
These games of "Bait and Switch" and "Pinball" are very dangerous and can cause great material, emotional, financial, civil, and even criminal damage and are highly unprofessional (and they know it is but sometimes need the hint, or direct message, that you know it as well, and that, being nice and a concerned advocate first of course, that you also will do what it takes, WHATEVER IT TAKES, to insure that if they don't protect you, you will make sure they will later wish they had done.
Now, only you know where the pressure points in your culture are and how to skillfully use them, ranging all the way from super subtle Southern Belle "smilingly bat them with your eyelashes Steel Magnolia" style treatment on the gentle end of the spectrum, from little hints of unspoken language, to "buster, if you f*** my husband you will be accountable for every harm you do, we give you our trust G** D*** it and you will toe the professionalism line or it is going to cost you big time, you'll be practicing out of a debtor's prison or a jail cell," to the very far end of whispering with no witnesses "my cousin with the mob wants to meet you and discuss learning a little empathy" end of the spectrum of how you do it right with your specific crew, society, country...abd when to jump around to different places on the spectrum, kind of like doing a cake or other recipe from scratch sometimes (usually it is easier with ethical people who also know you are serious and will be a real part of the team yourself), all that depends on them and your country, but know that it may not be a one time thing, but more in the nature of an ongoing job description for you, but somewhere in there is the idea of willing (or grudging, whatever gets it done right) "team" and "patient-centered collaborating providers," and sometimes it is up to the patient (wife) to provide some of the values, drive, and ethical reminders.
After all, this is an era of pretty amazing modern medicine, and you are no longer a nation of colonial prison inmates...hooefully. Perhaps it wouldn't hurt anyone to take just a moment to remember it.
I think we have a good team around us, starting with our neurologist. He is young (40+), enthusiastic, loves his patients, doesn't think he knows it all. Is very prepared to listen and he has to with me there. He doesn't play the "play safe" game and agrees that the system is broken in this regard. He had a great mentor in Andrew Evans. He reports back to the rest of the team after a visit. We also visit the Movement Disorder Clinic at his request to second guess him. He also teaches at one of our major hospitals and says he is trying to instil in the students not to "play safe".
We have a cardiologist and a blood pressure specialist. The blood pressure is a problem. We monitor it at home and he has a monitor fitted regularly. His blood pressure can be low or high. Although I think it's stabilised a bit since the introduction of Mannitol. Still high and low, but the extremes are a little less . B1 sent it thru the ceiling. This specialist will ring us when she gets a report from the neurologist and have a chat. She also cares a lot. We can ring her any time if we have any concerns and her time doesn't seem to matter.
We have a psychiatrist as well, he is knew to the team and so far I'm very impressed. I can also ring him.
I can tell you that I've had some very interesting experiences with doctors over the years, incompetence mostly. So I'm not easily impressed.
We have a great pharmacist, who dispenses all our meds and also checks out any research I may see, a lot of it from this site.
I haven't mentioned our GP . I've been going to him for over 40 years. His diagnostic skills and knowledge are exceptional . I sourced him back when I had been very ill and had some very incompetent doctors nearly kill me. I wouldn't go to him because he looked too young. Now, he's bald, with arthritic fingers and working 3 days a week. He took one look at my file and my symptoms and knew what my problem had been. We moved, but I kept with him. Alan got a new doctor, who I didn't think much of. As I mentioned, after his hospitalisation for depression, I sourced a new doctor, who set him on the right track. He's since gone back to Perth. So Alan then went back to my doctor. The GP gets reports from all these specialists.
If they are confident that your hypertensive crisis is caused by B1 (or can't be compensated adequately by different antihypertensive medication) then at least for now your b1 is contraindicated and you should follow their advice on it. Even if you are not sure but are having the hypertension, I would stop immediately if it was me. Stroke is too big a risk. Risking a stroke through further hypertension is definitely not worth playing around with b1 at this point, wouldn't you think? I would stop it right away. It isn't for everyone, some people get rashes etc. after a certain amount. I'd quit right away and go back to the drawing board.
I understand exactly what you are saying my wife has PD and we have tried many things for a recovery. The learning process is very important and as I found their are very few people who can relate to this approach. The medical professionals all said the same thing I will not repeat the negative diagnosis All the treatments you mentioned at the beginning of your article I am aware of and some have helped. If a treatment sounds good and you want to see if it works do the research and ask other people. The way to beat back PD is to be positive and remember the story of the shoemaker he said I make shoes for everyone but I am too poor to have shoes than I saw someone without legs and realized how fortunate I am.
The issue with the forum is that it doesn't present more prominently the topics that users are engaging with the most. Topics that have 100 replies and a wealth of info quickly fall away, being replaced by yet another mucuna dosing thread or a query about a UV light condom that some quack Dr online says definitely cures PD.
just a thought here about what the human experience of learning is.
Any information to be true subjectively has to be evaluated by ourselves.
That is to say, it must be related to our experience and what we're trying to achieve. If you don't evaluate things you'll never know for sure. So this tells us that we have to be tolerant towards all points of view and let people evaluate information freely, otherwise it won't be useful. True knowledge cannot be imposed by verbal force, by simple denial or "authoritative" imposition, or denigration.
Knowledge that is CERTAINTY must be accompanied by personal practical experience that some have already done others must be free to do so that they can subjectively assess whether or not information is valid. Incidentally, this is the reason why practical traineeships are done in some courses.
We already had enough "Torquemada" that imposed the truth with torture and it didn't work.
Hu is nice because it is free and someone doesn't tolerate that for his personal nature, but he can have his say.
The day we let it not be so free, HU will be intellectually dead.
It's easy to forget that new people are being diagnosed every day, and they come on this site asking the same, normal questions. So it may appear sometimes that topics keep getting repeated. Fortunately, very kind, knowledgeable and prolific posters are always available to reply. (You know who you are!!). Keep it coming!
I haven't seen the posts you refer to suggesting a decline in quality. I agree with your points, and appreciate the positive spin. I find it possible to just filter the newbie groundhog day stuff regarding miracle cures, or a "new" insight. But I find I have no time for some who seem bent on conspiracy theories, and whinge about PD being "their" fault (as in someone elses fault). It's a tad complicated this condition which brings us together in this community. And that explains why it isn't fixed yet, and may not be for a good while.
That said, this is an excellent site, a great source of comfort and practical advice, a sounding board for possible disease management strategies, and a place where I am grateful to many friends for their contributions.
This site has meant everything to me. The kind people on this forum patiently answer question after question with compassion and real science.
I found out about mannitol, HDT, exercise, meditation and qigong, and which supplements would help, how magnesium could help with pain.
And lately also about diet and vitamins k1 and. 2 for healing osteoporosis and heart disease at once. I fell and broke my hip twice and the cardiologist told me that day that I was laying down calcium in my arteries. It all felt as if I had reached the end of the road. That was until I read a post to someone else about Osteoporosis. Thank you Park Bear.
This forum gives you fellow feeling and hope and also all the things you can do, so you don't feel so helpless.
I would like to thank especially Chartist, MBAnderson, Park Bear, Royprop, Sunvox and iqbaliqbal.
Jim, I can't imagine my health if I hadn't encountered this site. Two years ago, the neurologist diagnosed me and prescribed only Levodopa, then greeted me with a pat on the shoulder. See you in a year, he said. In this forum I found the answers to my questions. Answers that made me feel better. From the posts that follow one after the other I always draw clues that are useful for my condition. From the experiences of the other members I gained courage and determination. A big thank you to everyone.
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