IF YOU HAVE BEEN READING, BUT NOT POSTING... - Cure Parkinson's

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IF YOU HAVE BEEN READING, BUT NOT POSTING, THIS IS FOR YOU.

MBAnderson profile image
152 Replies

Hi Everyone!

This is joint post from MBAnderson (Marc) and Art/chartist.

A few days ago someone posted that a particular drug may be helpful for PWP. This happens several times a day, but this time, in response, 2 people said they were taking the drug and that it had halted their progression. One said they had not progressed for 4 years because of this drug. That’s a long time with no progression.

This is potentially huge news! It could change someone’s life!

Like all other therapies, this particular drug probably will not work for many, but if it stops the progression for even a few, or even one, that would be an enormous contribution to your fellow travelers.

What caught our attention is that these 2 members posted their comment in response to someone else having first mentioned the drug. Had someone else not identified this drug, these two posters may have never mentioned their exceptional experiences with it!

Since there are several hundred people who are reading this forum at any one given time, this may well mean that there are others who have found therapies that have stopped or slowed their progression.

So, the purpose of this thread is to ask those of you who feel you have found something that is providing you with relief (and it does not have to be something as dramatic as slowing or stopping your progression) that you have not shared with the rest of us, please do so.

Very Gratefully,

MBAnderson (Marc) and chartist / Art 😊😊

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MBAnderson
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152 Replies
laglag profile image
laglag

What was the drug?

MBAnderson profile image
MBAnderson in reply to laglag

doxazosin

laglag profile image
laglag in reply to MBAnderson

Thanks!

MBAnderson profile image
MBAnderson in reply to laglag

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

jombi profile image
jombi in reply to MBAnderson

Thanks for this info . Marc, did I read that you are considering or signed up for FUS?

MBAnderson profile image
MBAnderson in reply to jombi

Yes, I signed up for the pallidotomy trial in the US, but got the sham procedure and since then I've been accepted by SoniModul in Switzerland for their FUS PTT procedure March 11.

jombi profile image
jombi in reply to MBAnderson

Wonderful. Exciting news! Thank you

glenandgerry profile image
glenandgerry in reply to MBAnderson

Great news Marc!

Glen's just recently received a letter from Imperial College London to say he is not a suitable candidate for their FUS trial 🙁

Trixiedee profile image
Trixiedee in reply to glenandgerry

Glenandgerry why wasn’t your husband suitable? That’s disappointing.

glenandgerry profile image
glenandgerry in reply to Trixiedee

Imperial College said he is not a good candidate for their ultrasound trial because of his poor balance and weakness in his legs when standing as one of the main complications of ultrasound is unsteadiness postoperatively.

However in a separate email from the Clinical Research Practitioner, she said that to help alleviate Glen's symptoms they would need to target a part of the brain which is not allowed in the protocol for this particular trial. This does not mean he is unsuitable for FUS in general & that there are different types of FUS treatment available privately in other countries

Trixiedee profile image
Trixiedee in reply to glenandgerry

My balance is bad but only when I have dyskinesia. Which part of the brain did she say needs targeting? Are you considering Switzerland? I’m going for tests there in 3 weeks.

glenandgerry profile image
glenandgerry in reply to Trixiedee

Switzerland does sound very appealing but I fear too expensive. Please keep us posted after your tests. Thanks

MBAnderson profile image
MBAnderson in reply to glenandgerry

You might want to look on the FUS Foundation website for a list of trials which are free and commercial sites which may be less. Some locations doing the pallidotomy may still be accepting people to the end of the year.

WinnieThePoo profile image
WinnieThePoo in reply to MBAnderson

Have you received confirmation that the procedure you received was the sham? Excellent news that you have been accepted by SoniModul

MBAnderson profile image
MBAnderson in reply to WinnieThePoo

They will not unmask me until the earliest on my next return post-op evaluation visit November 18-20, but I know with certainty I got the sham. They may not unmask me until February 10.

MBAnderson profile image
MBAnderson in reply to WinnieThePoo

I was officially unmasked last Wednesday and low and behold, I got randomized to the sham procedure. No surprise, there.

WinnieThePoo profile image
WinnieThePoo in reply to MBAnderson

It's what you expected. Your contribution to the research is much appreciated. Hope all goes well with Soni Modul. If you fancy swinging by the Pyrenees while you are in Europe then pop in and say "Hi" :-)

MBAnderson profile image
MBAnderson in reply to WinnieThePoo

Thank you for the invite. I'll try to figure out what's involved and will consider it. Seems like the Pyrenees should be on our sightseeing list anyway.

Despe profile image
Despe in reply to MBAnderson

Good luck, Marc! My prayers for a successful procedure, I MEAN IT!

marnegro profile image
marnegro in reply to MBAnderson

Hi. Thanks for the interesting and educational info you posted. I’m assuming you are very knowledgeable and have performed a lot of research on FUS. If so, can you share a brief of what’s FUS good to help with PD motor symptoms and what’s not? Thanks!

MBAnderson profile image
MBAnderson in reply to marnegro

marnegro,

There is a difference between the expectations the doctor set and the experience of patients and since I have not yet had it done, I only know what I read. The woman named Lena who has commented on this thread and previous threads has had the procedure and has provided several articulate descriptions of how it has affected her symptoms. Look for her comments in the FUS threads. Also, the SoniModul website has good info.

marnegro profile image
marnegro in reply to MBAnderson

Hi Marc, in the info have you read and researched, have you found anything related to the FUS therapy and the effects if any, to the gait, walking, freezing or shuffling? Thanks

MBAnderson profile image
MBAnderson in reply to marnegro

The procedure affects different people differently, but I believe it will affect those symptoms for many people.

marnegro profile image
marnegro in reply to MBAnderson

Thanks. I wish you the best results in your incoming treatment.

sudoku123 profile image
sudoku123 in reply to MBAnderson

Marc, Good luck. Wish you the best

gaga1958 profile image
gaga1958 in reply to MBAnderson

Since this study link didn’t pertain to PWP why did those original 2 readers/non-posters learn to use this drug? I didn’t see the original post.

Thx

MBAnderson profile image
MBAnderson in reply to gaga1958

This is the original thread. I think it was posted Thursday.

healthunlocked.com/parkinso...

ConnieD profile image
ConnieD in reply to MBAnderson

Is that the prostrate drug that’s been talked about? Thanks

MBAnderson profile image
MBAnderson in reply to ConnieD

yes, but in the other thread, someone explained that women can take it too.

ConnieD profile image
ConnieD in reply to MBAnderson

Interesting, thanks Marc.

justjohn46 profile image
justjohn46 in reply to MBAnderson

hi marc what other way does it help people with p.d other than helping people with bladder problems or prostate problems as i dont have either thanks regards john.

WinnieThePoo profile image
WinnieThePoo in reply to justjohn46

It is hoped that it may slow the progress of PD, and reduce damage to neurons through enhanced PGK1 activity, and a consequent increase in ATP. The data is positive but limited. It's the old story of rodent studies and evaluation of previous clinical data. This is the essence of drug repurposing research, and it is worth noting that similar promising data existed for (among others) Simvastatin, Isradipine, Deferiprone, and of course Bydureon (Exanatide). Isradipine proved a busted flush after a hugely expensive 3 year phase 3 trial ended last year.

justjohn46 profile image
justjohn46 in reply to WinnieThePoo

thank you winnie hope something comes out of all this news,regards john.

Lana666 profile image
Lana666 in reply to MBAnderson

Choosing between terazosin and doxazosin which one is the better choice? I want to ask my physician to prescribe it for hbp and an overactive bladder.

in reply to MBAnderson

Hi MB Anderson, do you know if the doxazosin trial is still ongoing? I did not see it online.

Xenos profile image
Xenos in reply to laglag

There are 3 of them. More details here :

ajmc.com/newsroom/common-pr...

Gioc profile image
Gioc in reply to Xenos

Thank Xenos,

“Liu's team discovered that the cell-protective activity was due to terazosin's ability to activate phosphoglycerate kinase 1 (PGK1), an enzyme critical for cellular energy production.”

This drug has an important energy role for cell metabolism.

Xenos profile image
Xenos in reply to Gioc

Thanks. I think I will ask a prescription to my urologist. Hope he will be open minded...

This is a great idea!

RooJr profile image
RooJr

Hi Marc,

Thanks for posting this. I totally agree. I was the one that posted the question regarding the use of Terazosin or Doxaxosin. Having read news reports and then the one-off comments from posters to these news reports indicating it has helped them, I was compelled to ask the question.

Further to this post inciting readers to identify therapies that have worked, I do have one worth noting. First note, that it is my brother who has Parkinson's, not me. Like many out there with a loved one inflicted with this horrible condition, the search was on to find therapies that could provide the potential to slow the progression until a breakthrough occurs. One such therapy we tried was photobiomodulation. Many laughed at this and immediately dismissed it. We didn't. We purchased the device and after 4 weeks of using this therapy his sense of smell returned. After 6 weeks we noticed that his apathy was significantly diminished. We believe it is assisting in improving the cognitive effects of Parkinson's. More than happy to share more details for those interested.

Thanks again Marc.

Kevin

MBAnderson profile image
MBAnderson in reply to RooJr

Once again, thank you Kevin. You're a hero.

Yes, by all means, share what links you can.

John_morris71 profile image
John_morris71 in reply to MBAnderson

goodmenproject.com/featured...

RooJr profile image
RooJr in reply to John_morris71

That’s the one!

John_morris71 profile image
John_morris71 in reply to RooJr

youtube.com/watch?v=PLQ4FLo...

RooJr profile image
RooJr in reply to John_morris71

Thanks! This YouTube video was uploaded 24Feb2019.

Some results were then posted on 17Sep2019:

ncbi.nlm.nih.gov/pubmed/315...

and here:

redlightsonthebrain.blog/20...

and more posted on 25Sep2019

redlightsonthebrain.blog/20...

which has now spurred another trial.

All that being said. It has provided positive results for my brother. We live in Canada, so we ordered the lights from the Dorset folks in Tasmania.

chartist profile image
chartist in reply to RooJr

This is exactly what we are looking for, Kevin! Your information on this subject would be gladly welcomed and appreciated! The practical experience that you now have with photobiomodulation via your brother could be very useful for other forum members! Thank you, and yes, please share!

Art

mblongdon profile image
mblongdon in reply to RooJr

thanks so much for your info. which device did you purchase and from where?

Grumpy77 profile image
Grumpy77 in reply to RooJr

I stopped being drawn to joining taking terazosin and doxazosin because I read they have strong side effect of causing impotence

maryalice profile image
maryalice in reply to RooJr

Hi. I would be :dry interested in knowing more about this machine. Could you please lead me in that direction. Thanks.

RooJr profile image
RooJr in reply to maryalice

I sent you a private message. :-)

laglag profile image
laglag in reply to RooJr

Is your brother still using the redlight therapy?

RooJr profile image
RooJr in reply to laglag

Yes, every day. 👍

park_bear profile image
park_bear

Thanks Marc and Art! Love seeing the teamwork that we do on this site!

Oceanflow profile image
Oceanflow in reply to park_bear

Yes! So grateful! You are all heroes to me.

Gioc profile image
Gioc

Thank Marc and Art .

It's very important what you do for all PwPs. You have my greatest respect and friendship.

Gio

Kia17 profile image
Kia17

Hi Marc

Are those drugs Doxazosin and Terazosin?

MBAnderson profile image
MBAnderson in reply to Kia17

yes

Grumpy77 profile image
Grumpy77 in reply to MBAnderson

I stopped being drawn to joining taking terazosin and doxazosin because I read they have strong side effect of causing impotence

Since you have been taking terazosin for a while now can you refute or confirm it causes impotence

MBAnderson profile image
MBAnderson in reply to Grumpy77

Whatever side effects one person may experience is not a valid basis for another person to make a decision.

That said, I've experienced no side effects.

How did you come by the name Grumpy? :)

Grumpy77 profile image
Grumpy77 in reply to MBAnderson

Good to know you had no side effects from Terasozin.

As for the name Grumpy... I came about the name because i'm so critical of many issues i find these days particularly with the way younger generation do things and their obsessions

It got so bad that some of my younger relatives started to call me 'grumpy-old-man'.

Funny enough, i actually kinda liked the nickname and it stucked, so where ever i can, I use a nickname along that line, but its not always been possible because i have a younger brother who kinda 'hijacked' the name from me

chartist profile image
chartist

Just as general information, Doxazosin (Cardura) can be used for high blood pressure in the dosage range of 1 mg to 16 mg once per day.

Terazosin (Hytrin) is typically used in men for Benign Prostatic Hyperplasia in the dose range of 2 mg to 10 mg once per day at bedtime.

Art

Lana666 profile image
Lana666 in reply to chartist

Thank you Art for this info.

Sugarbear67 profile image
Sugarbear67

I've, been taking Alfuzosin and my symptoms seem to have leveled off. However, my mental issues have progressed.

Farooqji profile image
Farooqji in reply to Sugarbear67

For how long are you taking it ? Do you mean that your motor symptoms progression has stopped?

Sugarbear67 profile image
Sugarbear67 in reply to Farooqji

I still have stay on top of my meds, but I'm still on the same dosage since I started taking my prostate meds. My last PD added an extra tab of C/L at night because my dreams changed to DARK EVIL ones and I was fighting in bed. Now my dreams are back to happy ones. Sadly my new Neurologist stated I should be worse after having PD for 16 years so I'm making it all up. My wife is fit to be tied.

Markbit profile image
Markbit in reply to Sugarbear67

Sugarbear, how long have you been taking your prostate meds?

Sugarbear67 profile image
Sugarbear67 in reply to Markbit

I think around 4 to 5 years.

Markbit profile image
Markbit in reply to Sugarbear67

Thanks and hope you keep doing good!

Rosenmu profile image
Rosenmu

When I was first diagnosed 3 years ago, I had hand tremor, shuffling walk, slowmotor skills, etc. After year or so of being treated with supplements and diet, my symptoms improved dramatically , slight regression in the last year, upping my game and getting more aggressive about this. I was taking low dose B1, l-dopa, transdermal glutathione, AIP diet, B vits for 2 years. I'm now Keto, upped all supplements, exercise still same. I'm very happy to have found this site, more emhasis on research and more open minded on alternatives to drugs. Most posters also seem more upbeat and hopeful, such a relief.

AmyLindy profile image
AmyLindy in reply to Rosenmu

Is your transdermal glutathione an injection or a patch?

Rosenmu profile image
Rosenmu in reply to AmyLindy

I was using it as a spray on my skin, until I started getting a rash, now I take a glutathione accelerator by mouth since my levels had increased to enough.

1rocketman profile image
1rocketman

Thank you for the reminder that we should all post our experiences no matter how insignificant we feel they may be. You never know who it may help!

Despe profile image
Despe

Marc, Art,

Thank you for all your contributions, you are valued forum members!

Everything my husband has taken and continuing to take is because of your and other members' personal experience with different meds/supplements.

I will make an appointment with our urologist whose wife is also a PwP and ask him about these meds.

MBAnderson profile image
MBAnderson in reply to Despe

Not likely he will know about their relationship to PD. When I want to request a drug I am repurposing for PD, I email him links to the studies quoting a few of the salient points above each link. I feel it adds more gravitas to my case for him to read the data in front of my visit.

beccainnyc profile image
beccainnyc

I am too afraid to post, discuss, talk, say anything....its been two years, i still cry

lenamm profile image
lenamm

I have mentioned it and it is mentioned above but having pallidothalamic tractotomy by focused ultrasound not only halted and significantly reversed my progression on the left side of my body but the last six months post surgery it has continued to improve beyond the post surgery results. My right side was in rapid progression and it has halted and slightly reversed most of the progression there beyond tremor which has gotten worse. I find out soon about having the second side of my brain lesioned which should reverse and halt my tremor on that side. And I've been able to half my meds.

MBAnderson profile image
MBAnderson

Dear Ultrasound God, Please let me do as well as Lena.

lenamm profile image
lenamm in reply to MBAnderson

From what I've read, my results were not unusual so I imagine you will. I finally was able to access my videos of right before and after and was amazed to see the improvement on my treated side from post surgery to now. I think it was slow enough for me to barely notice. So post surgery is not all you get!

MBAnderson profile image
MBAnderson in reply to lenamm

As an aside, a few minutes of distraction for PWP, I've been watching videos of Switzerland and it surely is the most spectacular place I've ever seen.

youtube.com/watch?v=3ldqFSV...

lenamm profile image
lenamm in reply to MBAnderson

Solothurn is beautiful! A great place to rest and recover!

Parkie- profile image
Parkie- in reply to MBAnderson

MBA, Thank you for posting this video! I was hicking in Switzerland just before pd started a few yrs ago. One spectacular place is missing in the video. Google "Trift bridge switzerland" and look at the pictures... It was my number one spot in the Alps.

MBAnderson profile image
MBAnderson in reply to lenamm

I have to be careful not to let my hopes and expectations get carried away. I could be disqualified.

lenamm profile image
lenamm in reply to MBAnderson

Yes I think everyone's experiences are different so definitely go with hope but with curiosity of what improves. I expected my tremor to go in the machine because Michelle's did. My tremor went away about 90% when I got back to my hospital room but not in the machine. However my rigidity, which I didn't even really know was there until it was gone, went in the machine. And my arm swing came back gradually in the past six months without me really noticing. My anxiety went which I didn't think would be treated my FUS - a pleasant surprise! Whatever happens - relief is in sight!

MBAnderson profile image
MBAnderson in reply to lenamm

Thank you for all this. It's actually unbelievable what it can do.

bassofspades profile image
bassofspades

Art asked me to tell you this here, but i have posted it several times elsewhere.

Here is my testimony on lithium. I suffered from terrible brain fog and poor memory for all of my adult life . A doctor recommended lithium 20mg per day. I chose the lithium orotate variety. Within 2 weeks my brain fog was gone and my memory for even the most trivial minutia has skyrocketed. My coworkers now claim that I am the smartest person they know , which I never thought I'd hear in my lifetime.

I recently switched to 100mg twice per week because the price was nice and, at this dose, my ptsd is really improving. That's something I did not expect.

MBAnderson profile image
MBAnderson in reply to bassofspades

Thank you, thank you Bass. I used to take it, but let it drop off. Laurie Mischley takes it and recommends it. Looks like I'd better get back on it.

bassofspades profile image
bassofspades in reply to MBAnderson

Lol! Only if you feel that you need it.

chartist profile image
chartist in reply to MBAnderson

Marc,

Don't forget that it is also alleviating bass' depression and anxiety too!!! Add in the alleviation of brain fog, memory improvement of very large proportion and PTSD and this is a very amazing report or testimonial!!!

I am very happy for you bass!

Art

camper1 profile image
camper1 in reply to bassofspades

what brand of lithium do you buy?

bassofspades profile image
bassofspades in reply to camper1

Whatevers cheapest!!

mblongdon profile image
mblongdon

thanks for your fast response.

RooJr profile image
RooJr in reply to mblongdon

Sorry, my reply on how to order them was deleted. Probably broke a posting rule. I’m not affiliated with the hats. Anyway, direct message me if you want to know how I ordered them.

mblongdon profile image
mblongdon in reply to RooJr

I must've seen it before they deleted it because I got the directions on what to do or it came in a separate message to me by email. thanks. Seems like I've seen other links to things before and I was specifically asking about it.

mblongdon profile image
mblongdon in reply to mblongdon

I decided to get an infrared lamp off of Amazon and try that out and see how it goes. Even if I just get less sore muscles I'll be happy.

I wanted to bring up something else however. I also take Asea. I'm not crazy about the fact that it's MLM and I know there's a lot of claims made that I personally am not sure about but it has done one thing for me and that is lesson markedly the pain I get in my arms and hands. I don't really know how to describe it but it's more electrical than anything else and it makes me not want to use my hands. The Asea definitely affects this. I tried stopping up for a while and had forgot how bad it had been before. I can't be really sure of anything else that might be affected.. I am getting somewhat worse but it is pretty slowly whether that's because of the Asea or not I don't know. I'm on some supplements but no medications. I have tremors in my hands and jaw. Still drive but I don't like it anymore. I do some exercise but not nearly what I should be I'm not a distributor so I'm not trying to push anything I'm just saying how it is for me.

maryalice profile image
maryalice

I have had PD for 20 years and the only thing that worked for me was, mucanas and some amino acids, I would be happy to share them with you, if you are interested email me at juliavckr@gmail.com.

Does anyone know when this ultrasound treatment wil bee available in the USA?

MBAnderson profile image
MBAnderson in reply to maryalice

There is FDA approved FUS in the US now. They're listed on the FUS Foundation website.

maryalice profile image
maryalice in reply to MBAnderson

Great news. Do you know if insurance will pay for it?

MBAnderson profile image
MBAnderson in reply to maryalice

That would depend upon which insurance company and what kind of policy you have. Tell them it's a lot cheaper than DBS which most insurance does cover.

maryalice profile image
maryalice in reply to MBAnderson

Thank you.

in reply to maryalice

MaryAlice, please would you share with us how your Parkinson’s journey has been after all this time.

maryalice profile image
maryalice in reply to

I will soon.

Coling profile image
Coling

You asked for comments , I have only been diagnosed for 3 years and 6 months - honeymoon? My symptoms are very slow to progress just a bit of a shake. I used to get nightmares dribbling slightly depressed but now I dance sslsa and tango 3 times a week and walk up a hill 5 times s week and swim in a river...I still work and I’m 67 I take 1 madopar a day one 500 mg b1 and a caffeine tablet I do 16:8 fasting, my major symptom is afternoon sleepiness but my 60 year old normal Flatmate suffers from the same so may not be entirely due to parky) upshot is a combination of these may have a slowing affect any comments gratefully accepted

Gioc profile image
Gioc in reply to Coling

Thank you for share this!

in reply to Coling

You are doing very well sir! Kudos to you. It has been proven that if you nap in the afternoon, you have a great day.

Markbit profile image
Markbit

Thanks Marc and Art! You are great and had make a lot of diference in my life and in others for sure!

My urologist has put me on silodosin last week. I will talk to him to change to doxazosin, hope he colaborates.

Have not much to add to this posto, but to put focus on exercise. Altough it did not stop my progression, it keeps the body working more properly. I do a lot more exercise now then ever did. I'm 46 years old, diagnosed 11 years ago, and still running about 10 km 3x a week. I consider it the most important med that i do for Parkinson’s. I'll try to run my first marathon next year. Sorry for my english, not a native speaker 😊

OK, this is something really strange...

Every day, for at least a couple of month, I have had a strange symptom when I awaken - a have a moderate to high level hangover feeling in my head (as if I had a lot to drink the night before)... And it got so bad that I had to altogether give up drinking an occasional beer, since a single beer would greatly amplify the hangover feeling the next morning.

I have tried many experiments to see if it was something in my levodopa dosing or diet.

3 days ago I started taking 2000 IU of vitamin D, and drinking a lot of water, and the hang-over feeling is almost completely gone.

The vitamin D was on a bit of a whim because someone had mentioned something about similar symptoms and vitamin D helping on another forum... Also, spend most of my day in doors with the blinds closed, and I was diagnosed once as having lower vitamin D...

Also, since I had a hangover feeling. I read some stuff about alcohol hangovers - that a major cause for the hangover feeling is dehydration.

Then came the very recent fascinating research about the waves of water washing the brain during stage 3 non-REM sleep... I wondered if I were severely dehydrated that would hinder this process (i.e., less fluid volume) and if that could be the root cause...

I am happy now, as the hangover feeling greatly reduced my mood... but I need to see if it lasts...

One more thing - I have a history of not drinking enough water, with a kidney stone in each of the last 2 years!

And the last thing... I had previous experience with a hangover feeling... when I was first diagnose, I was put on Mirapex, which yielded the same hangover feeling...

marnegro profile image
marnegro in reply to

It would be good to have your blood pressure checked at that specific time when you get that feeling. It may be low blood pressure very common on PWP and closely related to dopamine agonist meds like mirapex. Have a wonderful day!

Despe profile image
Despe

"I just feel bad for you and your husband. I just want want you to get hurt. I wrote the long post about safety first because Dr. C had a stroke that was determined to be a result of his recommended therapy that he was himself taking for over a..."

This is "easilly's" reply to my comment! That's all I could extract from my email.

jombi profile image
jombi in reply to Despe

Uh, I wonder how much B1 he was taking. A bit unnerving?

Despe profile image
Despe in reply to jombi

If you mean Dr. C., I am not aware of him taking B1.

chartist profile image
chartist in reply to Despe

Despe,

I don't think that is correct. Dr C's stroke was related to a surgical procedure he had, not any medication he was taking. I believe this is what Marco said on this forum.

Here is a copy of one of Marco's updates:

::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

Surfdivinity

Surfdivinity

9 months ago

Dear all,

With this message I would like to update you on Dr. Costantini’s condition. First though let me thank you all so very much for the unbelievable display of affection, your thoughts and kind words for him, and for us all really, are so very appreciated. This is heartwarming and it fills me with joy to know we have a community of patients and friends on this forum.

The planned surgical procedure was a carotid endarterectomy. Sadly a few hours after the procedure was concluded, Dr. Costantini’s heart had an episode of fibrillation. Before the fibrillation was controlled by the medical staff it had caused a coagulation and consequently a stroke.

Very regrettably, Dr. Costantini reported motor impairments consequent to the stroke. He left the intensive care section of the hospital last weekend and since this week he has been transferred to a rehabilitation structure near his hometown. He has been having his closest friends and family around him.

Antonio is making progress. Although the consequences of the stroke were severe, the critical few days that went by have shown a positive trend.

However, the rehabilitation will take time and it is too early to tell when he will be back in shape as we truly hope he will, at some point.

As Dr. Costantini really needs to focus on his own health this time, it is of the utmost importance that our research is embraced by other scientists in collaboration with us through a multi-location formal trial. Now even more than ever before.

I will dedicate all my time and energy to trying to secure a prosecution of the work done to date for the benefit of the current and future patients.

Thank you all for your understanding and apologies to those who have been seeking our attention and have not received it yet.

-Marco

6 likesReply

:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::

Art

Despe profile image
Despe in reply to chartist

I know, Art. I also know that he had a procedure similar to that of my husband's, although my husband had the stent not the surgery. I was also aware that one of the risks was plaque to travel up to the brain causing a stroke. Dr. C. had the surgery and wish he had the stent instead.

I merely answered to jombi about Dr. C. taking B1.

jombi profile image
jombi in reply to Despe

I didn't realize there was a fake making things up. Thanks

Juliegrace profile image
Juliegrace in reply to Despe

This fake easilly troll is very desperate for attention and is writing things that are clearly untrue.

Despe profile image
Despe in reply to Juliegrace

Wondering who he/she is and why he/she is after Art. Moderators should have never let this impostor post comments.

chartist profile image
chartist in reply to Despe

Despe,

This person was derogatory toward me as well as the whole forum describing us as pathetic and then passing along that erroneous information about Dr. Costantini, which was simply despicable!

Unfortunately, I think the moderators/administrator can not monitor every post on the forum 24/7, so they need to rely on the forum members to report such anomalies as soon as they occur which was apparently what happened as Helen noted multiple complaints from forum members .

To the moderators/administrators credit, they react quickly in dealing with these problems once they are aware of them! Thank you Helen for your timely response!

This person opened a new account yesterday morning and started making malicious posts right away using my old name, "easilly" and claiming to be me. By this morning, the posters account was closed and all of their posts and related posts were gone! I don't think many forum members were even aware that there was a problem.

This is a very good forum and the members clearly make an effort to keep it that way!

Art

Despe profile image
Despe in reply to chartist

Absolutely, Art, this is the best forum ever! :) Glad all the malicious posts were deleted. I will be watching these horrible people very closely. They have no place on HU. Kudos to Helen!

chartist profile image
chartist in reply to Despe

Here is a copy and paste of what Helen said this morning :

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CPT_Helen

CPT_HelenAdministrator

19 hours ago

Please note that a number of posts have been deleted this week following complaints by users. Once again I refer you to the code of conduct. Many thanks

2 likesReply

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Helen takes care of business in a no nonsense fashion!

Art

Gioc profile image
Gioc in reply to Despe

He is one of the forum that could still write with its real name as if nothing had happened, but when we will discover who he is we will write its name with capital letters.😜

Despe profile image
Despe in reply to Gioc

BRAVO, Gio!

I have been injecting Bydureon for the past 6 months and I think that it works :). The only way to find out is to completely stop taking the Carbidopa/Levodopa which my MDS is loathe to allow.

Bydureon is Exenatide.

marnegro profile image
marnegro in reply to

Hi Malayappan, can you share your improvement experience with us? Thanks

in reply to marnegro

To marnegro:

Sure, marnegro. I find that my on times are longer and I no longer have tremors at night while sleeping. I no longer need the last dose of Carbidopa/Levodopa at night. I started Bydureon six months ago and Rytary which is the extended release version of Carbidopa/Levodopa. I feel significant symptom improvements after Bydureon.

But the flip side is that it is really a catch-22. I am also experiencing dyskinesia increasingly at lower doses. One of the biggest conundrums that’s going to be a huge problem with new symptom reversal treatments is that it will be difficult for the patient and the doctor to titrate down the dopamine increasing medication while using the new treatment. Right now, I am on my own until the phase 3 trials get underway, get ratified and approved by the FDA for use with the Parkinson’s population.

Unfortunately, my MDS doesn’t seem to agree that my symptoms have gotten better due to Bydureon. He is pointing the finger at Rytary

I got the injection because I am a diabetic and that is the only approved use for now.

in reply to marnegro

To marnegro:

Great news! I am excited to share with you. I just returned from the MDS office with a substantial dose reduction of a Rytary and Sinemet combination. I am now taking about 1/3 the dosage.

Doctor observed and followed the extensive dyskinesia that I was experiencing and reduced my dosages as a result.

He still won’t acknowledge or talk about Exenatide/Bydureon.

However, I call this an improvement, wouldn’t you? Wouldn’t anyone? I am just a little worried and disappointed that he said nothing about the fact that I needed less medication for managing my Parkinson’s.

I am certainly confused but I am going to call this good news.

marnegro profile image
marnegro in reply to

I'm very happy of your improvement and what's important is what you think and believe that is helping you. Nobody other than you can affirm that. So enjoy this super positive new about your health and keep doing your bydureon regimen. It's working!

in reply to marnegro

Thanks.

park_bear profile image
park_bear in reply to

You started taking Bydureon and your PD seems to have improved as a result. That is the primary fact here. The physician's opinion is probably constrained by his interpretation of the standard of care. Do not let it discourage you.

NanCyclist profile image
NanCyclist

I used to have a significant tremor but then someone taught me how to use my mind to control my body. I just lay quietly for about a half an hour breathing in and out deeply, saying "peace" as I breathed in and "quiet hand" as I breathed out. I thought this sounded really hokey and silly but I tried it anyway. The first time it took about a half an hour for the tremor to stop. After that it took 15 minutes and after that five minutes. Since then I've been able to just will it to stop and it stops. It seldom starts up any more. Don't ask me how it works or why but it works or at least it works for me.

MBAnderson profile image
MBAnderson in reply to NanCyclist

Thank you for this. I've often suspected that some people were able to do this. It's another angle that reinforces the role stress plays. Seems like doing it as you're trying to go to sleep would be helpful?

NanCyclist profile image
NanCyclist in reply to MBAnderson

I think the mechanism is more like self hypnosis than anything else. So I don't expect it matters a whole lot what time of day you do it, it just matters that you have a quiet place where you can concentrate on what you're doing.

chartist profile image
chartist in reply to NanCyclist

NanCyclist,

Thank you very much for posting this here! Now more members will be able to see what is working for you to relieve tremor when needed!

Art

marnegro profile image
marnegro in reply to NanCyclist

I discovered this trick recently once I get use to wake up at 2:00 or 3:00am and tremors in my arm/hand don’t allow to rest again. For any reason, one night after wake up at middle of the night, I started to make deep breath purposely and my tremors stoped minutes later. It’s is a perfect drug free tool help calm tremors at bedtime.

in reply to marnegro

Thank you for the suggestion. I will try it. Doesn’t cost a penny!

in reply to NanCyclist

Amazing. You have described your experience as it happened and given us some hope.

chartist profile image
chartist

I would like to add two posts by forum member"danfitz" because he had very positive results by following another forum member's advice on using "celery seed extract" (CSE) for the purpose of relieving his dystonia in his toes. This is a common PD symptom that is often mentioned on this forum so any viable solution is worth mentioning and this thread will help his posts to achieve maximum exposure since there are quite a few members following this post now! Here are the two recent reply posts (copy & paste) by danfitz regarding his successful use of celery seed extract to alleviate dystonia in his toes :

Art

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danfitz

3 days ago

Celery seed extract works for me. So does ibogaine, but there are issues in acquiring it in the states.

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danfitzin reply to LearningAllICan

3 days ago

The active ingredient in celery seed extract is 3-n-Butylphthalide. I take capsules that contain 75 mg of the extract (85%). That yields 63.75 mg of 3-n-Butylphthalide. I take 3 capsules 3 times per day. I got the dose recommendation from a post here but can’t find it now.

It took several days for the effect of the extract to take hold.

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According to other forum members who are or did test celery seed extract (CSE), it may work differently for each person and some people may be more sensitive to it than others as I have seen at least one member mention that they had to reduce their dose very significantly shortly after starting on CSE. Another member mentioned starting at a low dose and try working upward as far as the dose. Who ever is currently using or has used CSE, please add your comments/experience with CSE as a reply here.

Thank you!

Art

chartist profile image
chartist

This is a copy and paste of a post by forum member "bassofspades", whose very recent major improvements in multiple symptoms is just too good not to add to this thread as it offers hope for others who may be looking for relief of some of the same major symptoms as bassofspades.

....................................................................................................................................................................

Thank you for this, bass!

Art

Here is his story :

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Feeling good and I think I know why

bassofspades

bassofspades•

3 hours ago•10 Replies

Ive made a 180 degree turnaround over the last few months. I was depressed, very bradykinetic (slow moving), and just felt awful overall. I tried a few things and i think its the combination, and this week I have felt so much better. I would say better than i have to felt in at least a year and change.

First of all , i stopped taking selegeline. That stuff put me down for the count. I had such bad headaches, no matter how strict of a diet I ate. Thought I was going to have a stroke.

I got my neurologist to try me on requip. He started with a miniscule dose and over the last 5 months, he slowly increased it to 2mg three times a day. Still a miniscule dose .

Next, i zapped the depression by taking a 100mg dose of lithium orotate twice per week. This has been a Godsend. One day i came to the realization that I no longer felt like i have ptsd any more. Its hard to believe after all these years but it's a miracle. As I mentioned in previous posts I used to suffer from debilitating brain fog , but the lithium completely reversed that as well, enormously.

I stumbled across this stuff called horny goat weed. Funny name! Well it contains a compound called icariin which appears to either protect or rescue dopaminergic neurons. I started on a low dosage and wasn't getting a result. But a friend mentioned they were having excellent results with a more potent brand. So I went with their advice and took 2 per day, 1200mg 20% icariin. Ive been feeling more energetic and less "parky", meaning less slow and even less shaky, after barely a week.

Lastly and perhaps most important , i have gone back to intermittent fasting and reducing the amount of wheat in my diet to the best of my ability . Fasting at least 16 hrs per day activities the garbage disposal system of your cells, called the vacuoles. These organelles recycle proteins and turn them into usable nutrients. My theory is that perhaps they are recycling the tangled, misfolded proteins that harm our fragile dopaminergic neurons and cells. This, coupled with a spoonful of mannitol, a known protein "unsticker", may be doing me a lot of good and in a relatively short period of time . Ive been taking mannitol for a few years but intermittent fasting for only about a week or so. Basically skipping breakfast. Eat lunch at 1 or 2 pm and dinner at 6, then nothing but water and coffee till lunch the next day. I usually fast for 16 to 18 hours. Its really not as hard as it sounds.

Sorry I can't explain the exact science and I haven't posted links to any studies, but I know I've been feeling great and i wanted to share what I got with you all. Hope it helps!

Last weekend, after working 100 hours over a 2 week period, i splurged and bought a new bass guitar and im really excited about it. This is remarkable because I haven't been excited about anything for as long as I can remember! And, after all that work i actually have energy to spare.

My love to you all !

Bass

chartist profile image
chartist in reply to chartist

I can "feel that bass" already, bass! Glad to hear it and glad you've been able to get yourself to a place where you can feel the excitement again! 😊👍👍👍👍👍😊

LAJ12345 profile image
LAJ12345

Can I add my piece? The top 2 things that I have noticed that have made a difference to my husband and I’ve seen quick results for are Hardy’s daily essential nutrients, and horny goat weed as mentioned by bass above. These may be additive to the other things he is taking and diet changes and exercise but these 2 I saw improvement in energy and mood in 3 days. See my profile if you want to see full list he is taking. I’m not sure which of these are helping but he is only taking 1/2 C/L per day and is better than he was 5 years ago.

chartist profile image
chartist

I was going to do a copy and paste of replies to a post that was originated by forum member Bestlifeever where he/she was recommending tonic water as an effective treatment for muscle cramps, but the replies were so chopped up I will just give an outline of those replies because I believe the total information can be of use to members as an effective way to help alleviate musccle cramps.

I responded to the original post to say that the active component in tonic water that would help with muscle cramps was quinine and that a homeopathic leg cramp formula by Hyland might be a potential option to the tonic water when you are out and about and don't happen to have any tonic water on hand. Kia17 responded with an article that said that quinine might be a problem if too much quinine is consumed. I replied to that by mentioning that the Hyland product is a homeopathic formulation and not likely to cause a problem due to too much quinine consumption. Here is a link to the Hyland cramp product that I mentioned:

amazon.com/HylandS-Leg-Cram...

Forum member, Rosenmu added a couple of replies where she stated that oral magnesium was very helpful in controlling muscle cramps and she further said that if the oral magnesium was not enough on some occasions then the addition of the Hyland homeopathic leg cramp formulation linked to above was effective at controlling any break through muscle cramps.

I just wanted to share this information with the forum since muscle cramps are so often mentioned here and am hoping that folks are able to use this information to help alleviate muscle cramps effectively!

Art

in reply to chartist

Art. I am going to ask you to please help me if you can. My wife accidentally gave me a peanut butter and jelly sandwich by mistake for lunch today. I said "mistake" because every time I have a PB&J sandwich, my Sinemet or Rytary stops working immediately and causes me to tremor violently. It is so violent that it scares the bejeesus out of people who witness the episode.

I took the sandwich by mistake as I had forgotten about the reaction that I have with the peanut butter which is caused presumably by the protein in the butter. I think that it is about 6%? This is puzzling to me because I sometimes have those special 16% protein cookies that doesn't cause the same reaction. You have done extensive research on all things Parkinson's and I hope you can read the answer and help me figure it out if possible.

Thanks in advance for your help.

Ramesh

chartist profile image
chartist in reply to

I don't know the answer to your question, I can only venture a guess as to why the discrepancy in results between the peanut butter and the protein cookie. I would guess that although the peanut butter is less protein than the cookie, the higher fat content may increase and speed up the actual absorbency as might the creamy nature of the peanut butter so that even though the cookie has more protein, the consistency of the cookie may take longer to digest and consequently cause a slower release of the protein during the digestive process whereas the peanut butter because of its creamy and fatty characteristics may allow the available protein to be taken up quickly, essentially giving you a quicker protein rush at a much faster rate than the protein cookie, creating the disturbance you have described. That's my best guess, but I'm sure some of the scientifically minded members can give a better answer than just a guess.

Art

in reply to chartist

Thanks Art for the quick response. I will just try to follow up with your line of reasoning and see if I can get further on my own research.

sharron2 profile image
sharron2 in reply to chartist

I would look at the nutrition label for the number of grams of protein per serving and compare them directly. Be sure you have an accurate idea of the actual serving sizes of each item you consumed. If a serving size of cookies is 2 and you ate 3 you need to take that into consideration when computing the number of grams of protein consumed. The same of course with the peanut butter. Ask your wife to measure the number of table spoons of peanut butter she puts on your sandwich.

You may be surprised by the difference in actual protein grams of the peanut butter vs the cookies. % is a ratio, where grams are an actual measure of a nutrient in a measured serving size. I would bet the protein in the peanut butter is greater per oz than the cookies.

sharron2 profile image
sharron2 in reply to sharron2

Most peanut allergies manifest in hives and itching or worse yet-swelling of the throat up to the point of death in severe reactions. There may be other reactions that I am not familiar with. If you think you have a sensitivity to peanuts be sure to discuss this with your physician.

chartist profile image
chartist in reply to sharron2

sharron2,

I agree, but I am not in a position to check what he has as far as peanut butter and cookies, but the reaction he reports on multiple occasions seems much more severe than would be expected by the combination of C/L and protein alone. Forum members generally report that taking protein at the same time as C/L might result in the C/L having little to no affect, but not the type of painful reaction he described in his post above. For safety sake it seems prudent that he get tested to determine if he is allergic to peanuts before he does any testing of peanut butter!

Art

in reply to chartist

Will do.

in reply to sharron2

Thanks for the advice, Sharon.

chartist profile image
chartist

If you know or think you have a peanut allergy, it does not seem like you would eat a peanut butter and jelly sandwich beyond the first bight which you should spit out as soon as you realize there is peanut butter in the sandwich. Why would your wife pack anything peanut in your lunch if you are allergic to peanuts?

Art

in reply to chartist

You misunderstood, Art. I am not saying that I am allergic to peanuts and in fact I used to love it prior to Parkinson's. I was just wondering if I had developed a new allergy.

You are right about the mistake that my wife made or more likely that my daughter made. You make an astute observation. My wife has seen my reaction to a PB sandwich and I am shocked as you are that she would knowingly make the mistake. I travel to a different city for work and I made a last minute request for something quick to eat for lunch. My teenage daughter was making herself a sandwich for her lunch and my wife just grabbed it from her. I am fairly certain that my daughter is also aware of the reaction that I have to peanut butter.

Maybe, I am overthinking the way I have approached the matter. I am really pissed off for the last few hours because this actually destroyed the afternoon team meeting at work and I intend to read the riot act to my wife and daughter when I get on the phone after I finish responding to you.

To be honest, I have no clue how a peanut allergy reaction looks like and I was just wondering. I am going to look into the mechanics of a peanut allergy reaction because I think I need to be more knowledgeable about such things before I run off my mouth.

Thanks again for the response and the dialogue. I know that I rarely interact with you on this forum and you hardly know me well enough to entertain an exchange of thoughts. I just noticed that you are active now and I was hoping that you would reply. I am getting the sense of I am bothering you😀 If so, please ignore and I thank you for your time.

Ramesh

chartist profile image
chartist in reply to

No bother, but it is critical for you to establish whether you have a peanut allergy or not because I have often heard that with some people each ensuing episode can be worse than the last one until you end up in anaphylactic shock which is definitely life threatening!

Art

Hikoi profile image
Hikoi

Malayappan, Fat is slowly absorbed, slower than carbs of the biscuit I would imagine. so I cant see that as an explanation for your reaction.

I do sincerely hope you didnt read the riot act at your wife and daughter. As far as I read you are more responsible than they are for eating the sandwich when you knew you reacted as you do. They were only trying to be helpful.

I doubt you are allergic. More likely you have a sensitivity or intolerance. They are different.

in reply to Hikoi

Hi hikoi. Thanks for chiming in. No, I did not 😇Happy holidays.

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