[Bergamotte]

Hi,

I’ve been away from this forum for some time. I lost my husband to complications of PD in 2018, but I remain vitally interested in the disease, and I will always want to share what I consider might be new information to some of you.

As background, in the final months of his life my husband could hardly move or speak. On one occasion his geriatrician put him on a steroid (prednisolone) to relieve some inflammatory condition not related to his PD. After two doses, suddenly my husband perked up, wished to sit up, spoke in an animated fashion, and was better able to move. The beneficial effects lasted until the steroid left his body. The doctor was not surprised at my husband’s response to the steroid; he stated this was expected when a PD patient received a strong steroid. This suggests to me (am I wrong?) that PD probably has a neuro-inflammatory component.

https://pdfs.semanticscholar.org/00a...100e5bb048.pdf

Here is a link to a research paper about palmitoylethanolamide (PEA). It is a lipid amide made in the body and reportedly it protects against neuroinflammation. PEA is found, among many places in the body, in the brain and spinal cord. It is available as a supplement which is said to have no unpleasant side effects. PD is mentioned in the research paper as a condition which could possibly be treated with PEA.

Your comments will be very welcome.

Best regards from Bergamotte

[lurkingforacure]

Hello,

My condolences, I too lost my husband to early onset Parkinson's and follow the research.

I can share our very limited experience, not with a steroid, but with Benadryl, very early in our PD journey, which seems similar to yours.

I can't remember exactly when it was, but maybe a few years into our early onset dx, my husband (who rarely got sick and even more rarely took any medicine before PD) took some Benadryl for a few days-I think he had a mild cold. At any rate, he seemed to sleep better (sleep was an issue for him) and he said it helped with his other symptoms, which at the time were of course minor. The benefits stopped when he quit taking it and it filtered out of his system.

Of course Benadryl is not a steroid, it is an antihistamine. But recent research shows it may also have anti-inflammatory properties:

Are antihistamines useful in managing asthma? - PubMed.


From the abstract:

Abstract
There continues to be a great deal of interest in the anti-asthmatic role of antihistamines. Antihistamines have recently been shown to have anti-inflammatory properties that are more extensive than simply the blocking of histamine receptors. .....

I can't help but wonder if he had kept taking it, whether it would have stopped his progression, or at least slowed it down.

[ashleyk]

Hi,
I haven't posted in awhile. I too recently lost my wife to Parkinson's this past Nov. She was dx about 21 years ago at age 52. Her last ten years were increasingly hard with dementia a main issue. When she was first dx, I thought I could fix her and got on the internet. I came across LDN, low dose naltrexone, and she took it for seven years until she said it wasn't working and stopped. I don't know if it helped. If PD is a neuro inflammatory disease as they now claim, it makes sense to take a anti-inflammatory supplement. My past research on this came up with Curcumin. It's not the cure that we have hoped for but, maybe, it will slow progression.
I first joined the old BrainTalk until moving to this site. I guess I made a lot of posts. I can't see much progress in real world PD treatments since Levo-dopa first came into use. As far as I'm concerned, it's the only treatment that helps. I am amazed that an almost cure has not been found yet. To all of you in the PD fight, I know how hard it can be. I wish you the best,
John Maccini

[lurkingforacure]

I am so sorry for your loss. I also am surprised we have nothing better than levodopa after all of this time and money. It is very discouraging, but there are some things that I think provide those of us in the PD community with hope:

1. I am following the autologous stem cell researchers and hope that this can be a treatment for PWP soon.

2. I was optimistic to read about Inflazome's acquisition by Roche for almost half a billion dollars in late 2020, but it just disappeared off the radar once the acquisition was made. Inflazome's research sounded quite promising, dealing with inflammation, and two of their drug candidates had already completed Phase 1 safety. You can read more about this here:

https://cen.acs.org/business/mergers...million/98/i37

Wishing you all a safe and healthy 2023