Sham treatments for Parkinson's

[Ianfrizell]

Hi all

This is a link to my vlog about sham treatments for Parkinson's.

youtube.com/watch?v=BZmycfy...(Not working as expected?)

Cheers,

Ian

[Enidah]

Thank you, Ian. Well said.

[aspergerian13]

Important considerations.

[munchybunch]

Thanks Ian. As interesting as always. Could you do one on the possibilities of stem cel treatments pls? Thanks Deb

[Ianfrizell in reply to munchybunch]

Hi Deb

I did this one a few months ago.

youtube.com/watch?v=eHJemcY...(Not working as expected?)

Cheers,

Ian

[vivalavida]

My hubby subscribes to said website

I agree with you

Total money grab and sad that they dont share information without profiting.

[Connie18 in reply to vivalavida]

I hardly call the small amounts Coiln charges to be money grabbing. And I know for a fact he is stiill out of pocket. Please don't accuse people with facts

[Connie18 in reply to Connie18]

Sorry I meant to say not to accuse people without facts.

[Harleybob08]

I think you're being a bit hard on poor Colin, he works hard.

If you have the time, this little movie should interest you visa vi diet.

m.youtube.com/watch?v=HyeC9...(Not working as expected?)

[parkigirl]

Ian...thanks very much...med mari is readily available in Canada...would you respond here as to the THC/CBD make up of your cannabis and whether you have tested yourself with oil as well as vapour please.

[luciercb in reply to parkigirl]

Yes, I would also like to know which strain of CBD you took in your video?

[Ianfrizell in reply to parkigirl]

The strain that I use is Northern Lights, so high THC low CBD. I am currently trialling a high THC (60%) full extract oil that is extremely effective (vaped) and have tried a high potency CBD (0.2% THC) oil orally, which was not as effective.

[Connie18]

Ian I am a regular reader of your vlog and find it very informative but you are very wrong about colin potter. I know him. Our first encounter was through the PD nurse I remember him. to be very slow and shuffelly and shaking arms and legs. When I met him a year latter he was like a new man. He had come of his meds and was walking properly and had only a mild tremour in his right hand. He was so happy he wanted to share it and help others and started Facebook and website it got so popular he could no longer fund it out if his out of his own pocket and had to charge a small monthly fee iof about £3 he makes nothing from it and infact still, funds part of it. A friend of mine followed his reguime and has been able to come of most of her meds. Unfortunately I am not so lucky and have increased my meds and am in a worse state as the side effects of the Sinemet than the condition. If I had my time again I would not have gone on this medication but unfortunately I am hooked now. It changes your personality as well. They try and deny it but th e medical professionals know this is awful medication onevnursevcslledvit poision

Anyhow Ian I wanted to put you right, You have a duty if you are in contact with the public on the views you put across and you should find out the facts before committing . Colin has helped s lot of people

I thought iybos

[Connie18 in reply to Connie18]

Just read through my comments sorry for the typos I was very tired when I typed it but i had just been told about the blog and was upset as I know it isn't true. What I was trying to say about Sinemet was that it's side effects are worse than the condition but you get hooked on it. I know of one PD nurse that described it as poison but it's all we have got. And another one say she would never go on it. I think we are not given the full picture when we are diagnosed and told about other avenues we could persue first instead of just been handed a prescription for Sinemet and told it was natural substance as I was. I did not make an informed choice. Colin is only trying to show there are things out there you can try before pharma medication. I don't disagree that some people get on well with the drugs but in my experience most don't. And the honeymoon period lasts 1-2 years and can be less not 5-10 like I was lead to believe.

[FluteReed in reply to Connie18]

Everything Ian said is true and important. Alternative treatments are not reliably tested with clinical double-blind studies and control of ingredients or a reporting system of side effects. While supplements may have some value for a few they should not be taken without consulting your doctor. If you trusted your doctor of your diagnosis of PD why do you not trust the doctor's prescriptions?

[luciercb in reply to FluteReed]

We have all trusted the doctors when they diagnosed us, but for some of us it ends there, or somewhere down the line. For whatever reason, these doctors don't want us to get benefits from anything other than drugs that make big pharma richer & richer, & us sicker & sicker! I know, I worked there for over 20 years . Some doctors will tell you " just get off those drugs". You have find a dr who is open to other possibilities. This is your right, and your life ! You do what you have to do .

[Beckey]

Good one, Ian. When I was first diagnosed, and logging long hours on the Internet looking for information, I was galled by the number of snake-oil claims, especially on YouTube.

But I hadn't heard of Colin Potter's Facebook page before so I googled him and found this article: parkinsonslife.eu/fight-par...

The comments at the end of the story are particularly interesting. Some of the arguments are pretty persuasive.

[Connie18 in reply to Beckey]

Thank you for being open minded to say this

[Astra7]

You can access the site for free for 48 hours if you want to check it out.

[vivalavida]

12k followers at 5 us a month how could ge not be making money?

[pottercolin in reply to vivalavida]

If I had 12k followers at $5 per month I'd be ploughing the money back into studies which would demonstrate the effectiveness of diet, exercise, detox etc in helping reduce PD symptoms and holding back its progression.

As it is, I can tell you that, whilst there may be 17k followers on my Facebook site, they pay nothing. Only the minutest fraction are members of my website and choose to make a donation to help with costs. I have been doing this for 4 years and am substantially out of pocket.

I work 10 hour days researching, personally answering every email etc simply because I care.

I make it quite clear, on my website, that I will never take any remuneration.

[AmyLindy in reply to pottercolin]

Truth! Thank you Colin, potter Colin !

[Connie18 in reply to vivalavida]

I was going to reply but I suddenly went off and my head goes all spinney and I can't think. I had already told colin about what you said and it seems he has replied so I don't need to.

[FluteReed]

Ian

Thank you. Those accusing you of saying things without facts are missing the point that they are saying things without facts. All of those sites claiming miracle cures have little to no validity without clinical double-blind testing and control of the amount, type, quality, and contamination or of reporting system of negative side effects. The Michael J Fox organization is a better place for them to report their information so that it can be validated and shared widely to those of us with PD at no cost.

[Connie18 in reply to FluteReed]

Colin potters site does not state that he has a miracle cure in fact the opposite. Everyone is different and it's not a one things fits all. It's Ian that is accusing not me. He is making sweeping statements with nothing to back them up. And as for these so called tests well. They are always backed by the big pharma companies so you are hardly getting an unbiased opinion

[FluteReed in reply to Connie18]

Medical University studies and Michael J. Fox Foundation are not big pharma. They insist on double-blind clinical trials and controlled ingredients because that is the ONLY way to legit medicine.

[luciercb in reply to FluteReed]

But as in many hospital based treatment clinics, they are only interested in treating with pharmaceuticals. They are not open to alternative therapies/treatments of any kind. I have been going to one in Toronto for 7 yrs, and every time I mention one I've discovered they dismiss it as being unproven. But my family Dr. says why not let me try, you never know what might work for one person. So, she will send a referral to any where I ask her to.

[FluteReed in reply to luciercb]

I agree completely with trying supplements when you do it as you said, with your doctor's knowledge. But I am wary of unproven treatments. I wish you good luck on your journey with this.

[stepan13]

Thank you, Ian!

[luciercb]

I have been trying all different strains to get the same benefit and haven't found it yet. What is the exact name of the cannabis that you used for the video. I live in Ontario, so it's legal here for me ( I have my card ) so I can get the right one. I have been reducing my meds for the same reason, and will completely stop them when I get the right product. I also tell everyone I meet about the benefits of this treatment and have every intention of helping as many people as I can, for no monetary benefit whatsoever !

[Opt8]

Thank you! I have wondered about the holistic route; however, I get relief from c/l. And sinement. My mom who lived until she was 81 had non-hodgskins leukemia for more than 30 years. She was on chemo and did very well yet her friends wanted her to get off of chemo and do all holistic. Instead she did a few holistic as a support to her chemo not in place of it. Doctor original gave her 3months to Live! Sadly she got altzhiemers, but she lived a long life because of Chemo! Sometimes holistic ones say doc only want our money howevr holistic ones do not usually work for free! It's a personal choice however I like what has been tried and true on millions over decades.

[aspergerian]

Semmelweis had data and that led to his dismissal and confinement.

[Ianfrizell]

My comments on this particular website did not revolve around the content, but were about the fact that a PWP, having discovered a means of reversing/delaying PD symptoms, would then seek to charge other PWP for that information. Regardless of how much or little that charge may be, it damages the legitimacy of the information because many people instantly regard it as being a scam.

Cheers,

Ian

[Farooqji in reply to Ianfrizell]

You are right

[luciercb in reply to Ianfrizell]

Totally ! If I discover anything that works for me I let everyone know. You pay it forward.