Why some of very active members are absent for quite some time

[Farooqji]

I have noticed that some of the previously active members have not been seen since long. I hope that they are doing well. It gives me a bit frustration that the disease progression is inevitable to a point where the PWP gradually get isolated from the community, friends and even family.

[jimcaster]

I think there are multiple reasons for people gradually being less active on this site. Certainly, some people are no longer able to participate because of disability or death. However, I think this site becomes less valuable after a person has been on it for several years. I am no longer desperately searching for supplements, I am content with my medication for now, and I no longer post or care about trial results in fruit flies and mice, etc.

[MBAnderson in reply to jimcaster]

Death is a cheap excuse for dropping off this site.

[Fed1000 in reply to jimcaster]

I hope you think again, I always read you with interest.

[jimcaster in reply to Fed1000]

Thanks! I'm still around and posting, albeit with less frequency because what once seemed like a major breakthrough is more apt to be met with a yawn as I approach six years after diagnosis. 😊

[MBAnderson in reply to jimcaster]

Me too. I've decided when I run out of my current stash of supplements, I won't replace all but perhaps 6. Especially probiotics. Taking them is like pouring a glass of clean water in a lake and expecting the lake to clear up.

[Ob6842 in reply to MBAnderson]

If I may ask, what are the 6 you’re keeping? I’m new at this…

[38yroldmale in reply to Ob6842]

For me, Parkinsons Became an obsession at first.I forgot to live. I’ve got a good support system, I try to share my stories and methods to slow it down if not stop it. I’d be happy to discuss it with anyone. I think I’ve slowed it down enough, that maybe soon I’ll be off meds. Not cured by any means, but the side effects of the meds are worse than the disease.

[38yroldmale in reply to Ob6842]

According to Dr Laura Michley, PD can be treated like Diabetes, except dopamine instead of insulin. I wish I would have know that when I was dx, especially at 38. You need to seriously consider memorizing the paper attached. It is the most important paper I’ve read with Parkinson’s

mdpi-res.com/d_attachment/n...

m.youtube.com/watch?time_co...

[gomelgo in reply to 38yroldmale]

I just watched her again, and realized I'm the Melanie asking about the dogs at the end. It's too bad they are not ready yet. I have inquired several times now ...

[38yroldmale in reply to gomelgo]

Not sure what you are saying? I’m an idiot, lol

[gomelgo in reply to 38yroldmale]

She has trained her dogs to smell PD. I was asking her when they would be available to the public. I agree this is a good video to watch more than once.

[Allypally49 in reply to gomelgo]

On the subject of DHA and dyskinesia I should have added

[Allypally49 in reply to gomelgo]

I've just posted a request to be informed if anyone has more info on the the subject

[Godiv in reply to 38yroldmale]

Hey! I really really like this information and appreciate the reminder. I have started to refer to the paper (finally) and have found it very useful. I think it’s easy to become obsessed and be subsumed by it. I like learning about it but I have to be careful that it doesn’t become my only identity.

[Allypally49 in reply to 38yroldmale]

I've just posted a request to be informed if anyone has more info on the the subject

[MBAnderson in reply to Ob6842]

OK, I can't get it down to 6, more like a dozen. There are a couple more I'll add when I remember them.

Omega 3, Turmeric/Curcumin/Black Pepper, Phytosome Berberine, Creatine, EGCG, Melatonin, Ceylon Cinnamon, Multi-Vitamin, GlyNAC, Magnesium Citrate & L-Threonate , Vitamin D3.

[gomelgo in reply to MBAnderson]

Dr Evans at Dr Mischley's office helped me get from 18 down to 9. I am sticking with liposomal C, glutathione, curcumin, zinc, mag citrate, omega 3s, coq10, b complex, and d3. PLus I was deficient in DHEA, so I'm taking that, though my understanding is it's not really a supplement, more like a hormone replacement.

[MBAnderson in reply to gomelgo]

good list

[John_morris71 in reply to MBAnderson]

I give my mother the following : Ginger Juice, Vitamins( B1, B2, B12, B5, B6,D) NAC, Citicholine, Kefir and another prebiotic from Thorne.

[curiousPD1966]

My friend's PD Tremble Clefs singing group has several who no longer come in person but join in by Zoom.

[gomelgo in reply to curiousPD1966]

fun name

[curiousPD1966 in reply to gomelgo]

My girlfriend has Parkinson's (PD) and this is a weekly singing class/choir here in San Diego. First part is vocal exercises and the last hour is singing songs. The loss of voice volume and swallowing issues are both greatly helped by the act of singing. AND for me it is helping build my lung volume to help with my Bronchiectasis. Win-win. and a ton of fun for someone who has never tried to sing before. Fun name ad a very fun group!

[gomelgo in reply to curiousPD1966]

There is a fun program called Sing Loud for PD. Similar format on zoom. So fun to sing along. I also plan on joining a circle sing which also has a movement component and is an in person socially interactive program here in nyc.

[curiousPD1966 in reply to gomelgo]

I had not heard of this one. Will check it out on line. Thanks.

[Ponieboy]

I've been busy spending more time with my wife. 1 year ago she was diagnosed with stage 4 metastatic colon cancer. Her markers recently jumped back up which means the cancer has found somewhere to take a foot hold. She has already stated that if it gets to her brain or addeenals she will stop chemo. So I have been a "bit stressed out.. I pop in and read. But that's about it. Busy keeping the wolves at bay.

[MarionP]

I wonder if Albert Wright is still kicking, scientist doing his own personal reviews along line of dietary antioxidants. I think here he is wriga. We would argue a bit but it was always about real things. I always thought he was on to something slowing progression.

[MBAnderson in reply to MarionP]

Yes, he is very much still kicking

[bassofspades]

I try to post only things that I think people would find useful. "try" being the key word. Sometimes I get a wild hair up my butt and post drivel too. I do, however, check in and see whats up with everybody else almost daily. The people in this group are like an extended family to me.

[Buckholt]

when I came on here I remember a lot of posts by BaileyTexas , but he hasn’t been around for a while. Hope he’s OK