Frustrating and disappointing: Just got to... - Cure Parkinson's

Cure Parkinson's

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Frustrating and disappointing

jeeves19
jeeves19

Just got to vent my frustration on someone or something! I accessed Simon's 'Science of Parkinsons' half an hour ago and he does these articles 'The Road Ahead' which consider propects for cures/treatment very scientifically. As an ex-teacher, if I was writing a school report for the Parkinsons scientific community and our political leaders, I'd be tempted to insert the well worn cliche 'could do better'. When one reads through each of the afore mentioned papers for 2018, 2019, 2020, 2021 etc they're littered with positive phrases like 'exciting', 'holds much promise', 'offers hope'. But as we all are too painfully aware, little really changes in our day to day experience. A drug that was discovered 50? years ago is still our mainstay and I guess that we should be thankful for that. But I remember being diagnosed 5/6 years ago and my neuro telling me about Exenadtide and extolling that 'exciting times' were ahead. 5 years on and I have no idea what happened to that drug (it's probably lurking in the Phase 23 trial or whatever equivalent purgatory they place any optimistic compounds in). Tom Issacs - a British PWP - was so frustrated by the lack of progress that he decided to found 'Cure Parkinsons' in the UK in 2005 as he felt that current research was too languid and lacked any sense of rigour and pace. Tom died several years ago and I imagine he'd still be very saddened at the lack of practical progress that we still endure.

70 Replies

I can at least give you some positive news. Exenatide has an ongoing phase 3 and is currently enrolling in the UK. I believe you are in the UK so maybe you can enrol. Covid delayed it but I expect results in about 2024.

But that’s 9 years from when it was first communicated to me! It’s almost like being in a West End farce.

I agree it's ridiculously slow. But it's not pharmacy backed so there's no bottom line to be looked after so it's been trudging along. Their recruitment plan for phase 3 is very slow simply because they only have a certain amount of people available to them based on free funding they have.

But it’s not new. Repurposed drugs were meant to be quick?

Theyre quicker than new drugs which take 15 plus years but it doesn't mean theyre fast. CPT is a super organisation but they need to beg for every penny they get and most of these trials are run by people who have day jobs.

you are right!! The actual reason is the lack of financial attraction for the drug companies due to less ratio of population getting Parkinson's. The scientists came up with Covid-19 vaccines within a year because the companies were lured by the extra-ordinary returns. I believe that Parkinson's cure is not an impossible thing if the re was a significant financial attraction for the companies

Its also a very complicated disease that is quite likely 20 different conditions labelled as one making finding a catch all cure almost impossible

That’s true.

cclemonade
cclemonade in reply to Farooqji

It’s far more complex than a virus so the comparison does not quite work. But money is obviously the incentive of big pharma companies, obviously, so yes, we are small in number. Which is why altruistic organizations like Cure Parkinson’s need our support. And, in light of PWP being small in number, is all the more reason we need to unite, organize, and make be loud. Has anyone reached out to researchers to ask what it would take to speed up the trial process?

Funding and trial participants are obvious answers.

MarionP
MarionP in reply to Farooqji

Yes Farooqji, one must certainly agee with you. It's not wrong, it's what it takes to develop treatments as well as cures...none of it grows on trees.

Long term i feel like prevention is more likely to lower PD rates than a cure. Maybe gene mutation editing prior to birth/conception?

jeeves19
jeeves19 in reply to kevowpd

That’s heavy!

Manypony
Manypony in reply to kevowpd

Maybe stop poisoning our water and food supply?

Hi Jeeves,

Not having Parkinson, I can not say "I know how you feel" with 100% certainty, but with a similar disease I think I can understand the gist of your feeling especially when I consider how many potentially helpful treatments are being ignored. Having said that my point is to say that: I believe . . . if. . .and it's a big if. . . but, if there is going to be a treatment for Parkinsons patients who already have symptoms, it's going to be a combination of treatments and not just one. After years of reading about Parkinsons, I realize the pathology is far more complicated than my illness hence probably requires marginally different treatments, but I like to think that my example is a positive one in that "slowing" progression, at least, seems possible.

Questions: What supplements have you been taking for more than a year and/or what is your exercise routine?

Your Friend in NY,

Joe

jimcaster
jimcaster in reply to sunvox

Joe! Good to see you back on this forum!

Despe
Despe in reply to sunvox

What a nice surprise, Joe! Please visit us more often. You are one of the most knowledgeable forum members, and we need your continued support and advice. I hope you are still doing great. I am still (husband) using the eye drops you recommended some time ago.

Art_lover45
Art_lover45 in reply to Despe

Hi there! What are the eye drops you recommend? My eyes are my worst problem. I feel like someone tied a tight band around my head. The specialists all say the cataract is not ready - as if I had gone to ask that - but they get so tired and then the dry eye syndrome kicks in and I keep putting drops in. The Neuro is really not interested and if not him then who???? Thanks for letting me moan!

Despe
Despe in reply to Art_lover45

Here are the drops:

amazon.com/Spectrum-Thea-Th...

Nuthatcher
Nuthatcher in reply to sunvox

Hello!

The study I’m interested in is on the drug Prasinezumab. It is in phase 2 and it is called Pasadena. NCT #03100149. The Prothena Co and the Roche Co. are sponsors.

Phase 1 showed a 35% reduction in disease progression.

Nuthatcher

Canddy
Canddy in reply to Nuthatcher

The study that is recruiting now for Parsinezumab (or very soon) is called PADOVA - PASADENA is active but not recruiting. Here is a link to the study on clinical trials.gov

clinicaltrials.gov/ct2/show...

Canddy
Canddy in reply to Canddy

Here is my post about it:

healthunlocked.com/cure-par...

Nuthatcher
Nuthatcher in reply to Canddy

I have been in contact with two of the study coordinators I have worked with in the past at Cleveland Clinic Foundation (CCF). One said that even though it appears that the study is “open “ it may actually be full because they have promised spots to those who completed phase one. The other one basically said I wasn’t a candidate because of the requirements of “early PD & untreated with PD meds”. I am not sure what defines”early PD” , but I don’t see from your post a requirement of “no PD meds”.

The press release states that you can’t be on CL at the time of enrollment.

Thank you for confirming that 😀

Sharing the same total frustation

Joe. Great to hear from you! Funny but I was wondering the other day how you were and that I hadn’t noticed you around for some time. Not such a need for aeroplanes eh with Covid-19?!

I take 2g of B1 (500mg of that sublingually), 500g B2, 1g B12, Cod Liver, Asthaxathin?, Turmeric. When I get stiff and aches I take some EmergenC as LagLag recommended this. Seems to help with the former issue. I’m also fasting quite a bit lately and exercising more regularly both of which seem to be bearing fruit in the form of longer duration of ‘on’ time.

Thanks for stopping by from the equally grotty land of Ataxia. Keep well pal.

Kia17
Kia17 in reply to jeeves19

Hi Jeeves

Are you taking 1000mcg B12 every day? Who has prescribed it for you? I think it’s way beyond our requirements.Too much b12 can increase stiffness and worsening of the symptoms immensely. Same thing with B2.

B vitamins are double-edged sword.

jeeves19
jeeves19 in reply to Kia17

Dr Google I guess Kia like most!😂. I was led to believe that B1, 2 and 12 are chronically needed by PWP?

Kia17
Kia17 in reply to jeeves19

B12 gets stored in the liver and creates health problems if we take too much.

sharoncrayn
sharoncrayn in reply to Kia17

K17,

You may want to revise your commentary on B12. It is water soluble without an defined UL(upper limit).

The basic micronutrient vitamin B12 inhibits the activity of a protein implicated in LRRK2-associated Parkinson’s disease (PD) the most common inherited form of the condition. LRRK2 kinase activity leads to a reduction in the activity of dopamine in the brain, which manifests itself in muscle rigidity and tremors.

Vitamin B12 deficiency in humans is known to contribute to a variety of neurological conditions and low vitamin B12 levels have been described in patients with idiopathic PD. A recent study (cited below) showed that low levels of vitamin B12 predict worse motor symptoms for patients early on in PD progression.

COMMENTARY| VOLUME 94, ISSUE 5, P757-762, MAY 01, 2019

Low Vitamin B12 and Parkinson Disease

Potential Link to Reduced Cholinergic Transmission and Severity of Disease

sharon

Kia17
Kia17 in reply to sharoncrayn

Thank you for your input Sharon. I amnot against b12 supplementation but too much of that worsens the PD symptoms.

Kwinholt
Kwinholt in reply to jeeves19

Jeeves, A different question….. I know we all have our bucket load of meds, supplements that we take. How does your stomach handle all of them. Lately , I have been having such issues and nothing sounds good to eat. In turn , I’m down to 85lbs. Karen

jeeves19
jeeves19 in reply to Kwinholt

No problems Karen. Wish that I COULD lose weight. But I think tremor dominated PWP suffer more than the non-tremor crew with weight loss?

Enidah
Enidah in reply to Kwinholt

Karen, this isn't an especially healthy solution but I take a lot of my vitamins now as gummies. I also have a sensitive stomach and it's tough to have to take so many meds and vitamins etc. I also always dissolve my c/l before swallowing it. Sometimes I just chew it and then drink water to get it going because I guess it can sit in your stomach and that's not going to be good for your stomach. There are some things that are more stomach bothering than others. Zinc is one that's hard on the stomach and B1 I need to take with food early in the day. Be sure and drink lots and lots of water when you take meds, vitamins or supplements. That will help to get them out of your stomach.

Enidah
Enidah in reply to Kwinholt

When I kept losing weight and kind of panicking about it I decided I would just eat whatever I wanted and always had a milkshake after dinner and anything else that sounded good up to a point. I didn't get completely crazy. But it's tough if you have no appetite because you kind of have to go with what you are able to eat...what sounds palatable. Since I was able to gain weight I don't worry about it anymore. It just was scary to keep losing weight when I didn't want to. I think it has a lot to do with dyskinesia. I've got to be burning a lot of calories with all this movement.

MarionP
MarionP in reply to Kwinholt

Karen, that is a dangerous low weight, is there nothing you can do to gain some weight?

Kwinholt
Kwinholt in reply to MarionP

Marion, I am trying. I am not a big person anyways 5’2. but 85 is the lowest I’ve been. Karen

sunvox
sunvox in reply to jeeves19

Just for information purposes here's my list. It has been largely unchanged for 2 years with the exception of adding creatine and reducing Niagen. I believe that neurodegeneration of the type we have is akin to having 29 holes in a roof. Repairing one or two holes will not stop the leaking. One needs to block all the holes, or at least as many as possible :) with that in mind here's my list of supplements. All these items have research either in the lab or some in humans related to Parkinsons. A couple are even known to "cure" Parkinsons in the lab.

PQQ - 40 mg 1pill AM/PM

GreenTea Extract - 100 mg 1pill AM/PM

Theracurmin - 180 mg 1pill AM/PM

Avmacol - 475 mg 1pill AM/PM

Basis - 750 mg Niagen/150 mg Pterostilbene 3 pills AM/PM

Ubiquinol - 800 mg 2 pills AM/PM

NeuroMag - 1333 mg 1pill AM/PM

Taurine - 2000 mg 1pill AM/PM

vitamin C - 2000 mg 1pill AM/PM

Thiamine(B1) - 2000 mg 4 pills AM

vitamin D - 1000 IU 1pill AM

Lithium - 5 mg 1pill PM

Creatine - 5 g - one scoop with lunch

Trehalose - 50 g - 2 heaping TBs with coffee in the morning.

Unfortunately, this adds up to about $4000 per year so it's not cheap, but given that I have had zero progression for 5 years straight, I feel it's worth every penny.

jeeves19
jeeves19 in reply to sunvox

Bless you Joe. Thanks for your support and for stopping by. Keep well and safe 🙏

Rhyothemis
Rhyothemis in reply to sunvox

Have you seen news about arginine for SCA? I have notes here - arginine & SCA is towards the end rhyobrain.blogspot.com/2021...

Research buys hope.

Its failure brings despair.

Let the better researchers research.

Let PwP learn to best use existing therapies.

Levod
Levod in reply to johntPM

love this!

@jeeves19, I suggest that you and the rest of us take a a deep breath and accept the fact that levodopa is going to be the mainstay of our treatment and survival until we die. Even if it is 50 more years from now. Everything else that is being researched and approved for treatment is designed to control, extend, manipulate and tame the delivery and absorption of Levodopa. Unfortunate, but true. Of course, why wouldn't it be true? Levodopa has been around for at least 4500 years ago, "discovered" if you will by the Hindus/Ayurveda and documented in their religious texts.

A lot of murky stories abound regarding how exactly the researchers in the USA stumbled across levodopa but one thing that puzzles 🤔😂😅😉 me is why they they chose to do a complete bottom up synthetic formulated version instead of starting with Mucuna Pruriens which was also investigated at that time.

Take heart, mate. At least we know that we have an option in Mucuna Pruriens in case the powers that be, decide to stop making the artificial kind.

Makes sense?

RKM

MarionP
MarionP in reply to pdpatient

It sure makes sense to me.

Well I’m sure they won’t but I’m a fan of MP for sure and take it to keep the number of drugs within limits. But I take the 40% now after getting my fingers a little burnt with the 99% stuff. I think we can accept the need for Levadopa if they could get the dyskinesia thing sorted? Luckily after 5 years I have very little of this and count myself lucky.

If you remember Dr C says B1 will stop dyskenesia. I believe PD not 'cured' because it doesn't kill us, we are slowly incapacitated. AIDs, Covid all kill very quickly.

I know people mean well 'you'll get a cure etc' but really i find it inly said by those that don't understand the disease.

Keep going Jeeves we all here togethher.

Jeeves,

Are you really taking 500 grams of B2 or is it 500 mg? Your urine must be fluorescent green and smell really strong!

Art

Ha! Yes it’s 100mg sublingual and about 2 g via the hcl capsules

As a comparison , AIDS research has been getting astronomical funding across the world, Parkinson's not so much. With Parkinson's numbers rising we might be getting some more emphasis on research. Yes, I think it is a crime not to have anything to slow the progression down or to help with Advanced Parkinson's. AIDS is mostly a Young Person's disease, Parkinson's is an old person's disease. Not exactly getting respect or care that we deserve. No available neurologist, no standardized treatment, confusion among doctors on how to proceed. Same research getting done over and over. Yes, I am angry and mad. With the progress of the disease it is getting harder to be your own advocate.. Maybe next lifetime.

chartist
chartist in reply to parkie13

I think there are a couple of reasons why HIV receives significantly more funding. One, it seems that the virus is better understood than PD so scientists have a better idea of how to find and develop effective treatments and they can do it quicker. Two, being a virus that is mainly transmitted through sexual contact, it can spread rapidly if left unchecked. Africa tends to illustrate this fact with their high rate of HIV infection compared to many other countries. Having a better understanding of the disease means that drugs can likely be developed quicker and readied for market a bit faster. I would say it mostly comes down to pharmaceutical companies being able to make more money and governments being able to control a disease that can spread very rapidly while saving many lives. Look how quickly they developed vaccines for Covid-19 which can kill even faster than HIV.

On the other hand, imo, PD is a more complicated disease that is not as well understood as HIV and requires more research and testing to develop effective drugs and this could also explain why the gold standard treatment for PD is 50 years old. People die rapidly from HIV compared to PD where people often die from another disease or cause such as cardiovascular disease or stroke, which PwP are at increased risk for. PD is not transmissible the way HIV is or to say that a little differently you are not likely to give another person PD.

Art

Rocke
Rocke in reply to chartist

My opinion is that you hit the nail on the head when you wrote, "people die rapidly from HIV". There isn't as much profit for the drug companies. PD patients are on meds for much longer and the longer they go without a cure the more profit there is to make. Commercial insurance covers some of the meds but once you go on Medicare, and pay for part D, you're left paying on your own. Apparently, since I worked for 50 years, have a pension and social security, and have some savings I'm just over the limit. I'm just saying there are many in my situation. I've begun to look at Canadian pharmacies where the medications can be cheaper. But that has additional problems. Another issue is that patients with HIV stood together and became a true voice for change. April was PD awareness month. How much did we hear about it? My MDS is at a center where a lot of PD patients are treated. The health magazine they published for April acknowledged the month on the inside of the back cover. How disgraceful!

Hikoi
Hikoi in reply to parkie13

Aids funding only occurred because the HIV community were very active and committed. It was the community that agitated for treatment not the drug companies.

cclemonade
cclemonade in reply to Hikoi

Exactly! Thank you Hikoi!

cclemonade
cclemonade in reply to parkie13

Please, as someone who is 45 with PD, it is not just an old person disease. Young onset is becoming increasingly more common.

parkie13
parkie13 in reply to cclemonade

Yes, definitely. I'm so very sorry.

pdpatient
pdpatient in reply to cclemonade

@cclemonade, we need to popularize the phrase : YOPD : Young Onset Parkinson's Disorder.

RKM

cclemonade
cclemonade in reply to pdpatient

Yes! And PD being a “movement disorder” needs to be rethought. From the standpoint of treatment, we obviously need movement disorder specialists but the public does not understand it’s a BRAIN issue and they therefore don’t understand the seriousness. “Save our brains.” And “A treatment in time for us.” are hashtags that should be used. I’m slowly working on social media for YOPD advocacy.

kevowpd
kevowpd in reply to cclemonade

Yes its poorly understood. Non motor symptoms are what get many PWP in the end. I wish there was more on the horizon for this. I could handle being physically disabled if my cognition and mood were 100%.

For what it's worth I've had exactly the same feelings regarding all the years of "The Road Ahead" with nothing to show for all the research. Seems more like a Highway to Hell. I cycle through emotions dark to not so dark.

There are at least a few positives... the wisdom of the crowd here on this forum... Dr. Jeanne Loring at Aspen Neuroscience... FUS...

Well, jeeves, without having read any responses or comments yet, you have to understand something, something I gained from a lifetime of experience, and when you do, it may help a bit when reading someone and getting too enthusiastic only to be let down and frustrated all the more for the higher fall from giving your trust due to no particular fault of your own: "Everybody sells."

Maybe sometimes through no fault of their own either...but regardless, it's still true: everybody sells.

Now, having read a few comments, I go with Farooqji, it takes real money and risk capital and prospects for return to drive a treatment or cure, and a lot of time... it's almost a matter of physics.

Could be worse...you could be blind...could be dementing...could have cancer (incredible pain)...could be paralyzed...could have severe MS...could have immense suffering from schizophrenia, bi polar...bone cancer (even worse incredible pain), leukemia, tubercle sclerosis...chronic migraines, total deafness and blindness...paralyzed... Huntington's Chorea, lifelong spirochetes...AIDS...drug addicted...one friend I had died prematurely of a disease acquired by his work, an insurance adjuster, his particular niche had him chronically exposed to molds that eventually killed him, wheelchair confined for his final year and a half, clearly terminal illness... he's dead now from it, at 41... plus, you do know that everybody dies, sooner or later...shall I go on? And my guess is you never served in the military, or if you did then you never saw action ... otherwise you'd have said nothing here, finding it proportionately trivial, and thus too embarrassing to even mention...

Adam, I sure can relate to what you have said about hopeful promises etc. Charlatans, selling ideas etc., are prevalent these days. There seems to be way to many people, wanting to make a buck, who promise cures, potions for diseases, and, seemingly, are never able to follow through, or prove their ‘cure’ solution. Indeed, it is very disheartening, and cruel, for this misrepresentation to be thrust upon ill, and, therefore, vulnerable people. Over the years, this has bothered me a lot, to see people, with serious, chronic disease/illness, being taken advantage of, emotionally and financially! So, I’m an advocate for exposing charlatans, and have participated in groups, that feel likewise! One of the causes, that is truly heartbreaking, here in the USA, is the many promises, that certain drugs/medicines will alleviate symptoms, and promote cures for Amyotrophic Lateral Sclerosis ( Motor Neuron Disease )! So many patients have been let down, and have spent money in futility! In fact, broken promises from the government programs, and drug companies has so disenchanted many, who have ALS, or support the cause, that many have withdrawn in disgust, I read, in a recent article on the subject! ALS has no cure, and life expectancy, of 2 to 5 years, for most who are afflicted with it, has not changed, since this neurodegenerative disease was discovered, years ago! Nothing has been solidly proven to change the prognosis ( course of the disease ), and it’s morbidity, in all these years! There are claims that certain treatments, medicines, ointments work, but none have proven to be effective! Many people, in the ALS community, have become incredibly discouraged! Some cancers have proven to be rapidly lethal, also, and yet, in spite of claims of cures and successful treatments, they continue to kill, rapidly! I sometimes think of many so-called solutions, as being farcical, where charlatans claim cures, and promise hope, to anxiety driven patients! If we could discover a way to prevent certain diseases ( such as demyelination, and /or neuro degeneration ) from occurring in the first place, that would be a great feat for mankind!

You’re quite right Doug. Maybe the brain is so complicated compared to other organs that there in lies the problem. I remember when I first visited the neurology department at my local hospital. It struck me that they needed to erect a sign at the entrance declaring ‘Abandon all hope when entering here’. 😂. ALL neurological diseases are very serious hombres and there isn’t much of a recovery story behind any of them. It’s just a mystery why a fit, strong relativity young man like me can develop one of these whereby some slob who has bad blood pressure, poor sugar reading within the same, cholesterol sky high doesn’t! Guess it’s in the genes which doesn’t help really does it?

ddmagee1
ddmagee1 in reply to jeeves19

I can agree with you, on that, Adam! Many times I get that impression, when seeing my neuro-specialist! His seeming apathy and lack of empathy is the first thing, I notice. He approaches treatment, like a routine, and if that dose of Carbo/levodopa prescribed, isn’t good enough, then he criticizes my complaints, gets angry, and lectures me! One time, having trouble with slow swallowing, digestion, and resulting constipation, he stated that this was not his specialty, and talk to my GP about that! His exams are superficial, brief, and laboriously routine! So, I feel that the adage is “Abandon all hope when entering here”! Indeed, there is much to be learned, about the complicated brain’s workings, and, seemingly, some practitioners get frustrated with not having a methodology of treatment, that relieves aspects of neurodegenerative diseases!

jeeves19
jeeves19 in reply to ddmagee1

Yes I sometimes wonder why medical students elect to go into neurology to be honest. It hardly seems worth all that training only to find one can actually do so little other than to dish out pills. Maybe that’s why they’re often grumpy 😂

Until the scientists put pwp at the center of their research, there will be not much progress.I was diagnosed in 2017, there has been absolutely NO investigative PD causative medical test done on me till date (I'm based in the UK). All i got and get at every neuro visit is .... Stretch your hands, count backwards adding 7,. take some steps down the corridor.. oh your tremor is stabilizing,. Your balance is worse, your gait is.... Let's increase your levadopa. SOMETHING LAZILY ALONG THIS BS. And I suppose if there is no discrimination then its same for thousands of others here in the UK.

(NOTE, this is not the same as clinical trials, which essential for any drugs to be approved.)

And from the posts i read on this forum, apart from those who organize such investigation privately, such neglect in this area of research on pwp is happening everywhere

This is pure arrogance to me.... In essence they're saying we will do this on our own thank you

Hi jeeves, could you please give me your macuna puriens schedule and your c/l schedule. I am in my 10th year of PD and have been using a combo of sinamet and macuna for about 5 yrs. I take macuna by Now 1 cap every 3 hrs, and 3/4 tsp of macuna beige coloured powder once a day around 3:30 , right before my walk. The white macuna powder was too strong and also caused nausea. I also take half a sinamet pill 4x day =to 200mg and 200 mg of sinamet CR to sleep at night. So a total of 400mg of levadopa from sinamet, and a little macuna every 2 to 3 hrs. So what I'm wondering, do you think, am I taking too much macuna? If I don't take it I can't function. Caught between a rock and a hard place. I worry about where this is all going to take me!

jeeves19
jeeves19 in reply to Beverly2017

I’ll message you Beverley when I come on. Might be tomorrow though.

Beverly2017
Beverly2017 in reply to jeeves19

Ok, thankyou very much

Hey Jeeves- I often wonder if the medical industry really want to, or intend on finding a cure for disease...or is there pressure to keep the drug companies in business-and quite frankly the doctors (Neurologists) in business? Cause if there were no brain diseases there would be no drugs, operations, etc.... I hate to look at it this way, but makes me wonder...

No I don’t buy into this Greg. Pharma are leaves but the tree is science and scientists. The latter don’t dance to the formers tune.

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