When I was researching alternative treatments for my mom who was diagnosed 20 years ago, there was scant information. I started experiencing symptoms two years ago and have been impacted and inspired by PwP who’ve begun self-researching and self-experimenting. Because of this and because information can get scattered across the internet, I created a website [subvertingparkinsons.com ] to compile and collect holistic and alternative PD resources in one place—emphasizing firsthand accounts of PwP, who through self-experimentation have slowed symptoms or increased well-being and then created websites to share their experiences.
If there’s interest, I’m looking at creating a centralized database where PwP can self-report/and update their own experiences with alternative treatments so tracking doesn’t get buried in discussion boards and blogs. If you’d like to see such a database, please consider taking this survey [surveymonkey.com/r/DHBVSZ5 ] where you can input what symptoms and treatments (i.e. keto diet, thiamine, etc) you’d like to see tracked.
I highlighted (non-commercial) blogs and websites and have asked permission when linking to someone’s post on discussion boards. The site is still under construction. It isn’t showing up in searches, so there’s time to make changes. Please feel free to message me with any suggestions.
Though I’m shy about posting, I’ve still been helped by the supportive words and information shared on Health Unlocked.
Mary
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junipertree
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Thanks for mentioning my videos. Do you have a problem with mentioning my website? reverseparkinsons.net. It has an enormaous amount of helpful information in it.
Great. Thanks for putting them all in one place. Interesting that the common theme seems to be determination and problem solving to free themselves of symptoms. Makes me wonder if that is the key.
Interesting observation about the common traits, especially determination. It reminded to seek out a book I always meant to read: Angela Duckworth’s Grit: The Power of Passion and Perseverance. (They also seem to have an enormous sense of curiosity.)
The website is new. The initial impulse was to make alternative resources findable. When I started my searches a couple of years ago, it took over a year to find Health Unlocked and Gary Sharpe’s website. Inclusion criteria is still formulating. As I receive more input and feedback this will be clearer. Please message me if you have resource suggestions.
The basic criterion: Firsthand experience of PwP, who’ve been able to impact symptoms or quality of life. And mainly noncommercial resources that PwP have reported helping them.
(I need to think a bit about how to answer the question about my mom. Complicated.)
You use first hand accounts of pwp, but how does one know they really have PD and not just think they have? I have seen it a number of times on line. A claim to have halted, reversd or been cured of PD when actally the person self diagnosed or were misdiagnosed and actually never had PD in the first place. We know there is a high percentage of misdiagnosis.
What a wonderful idea! I consider myself very lucky to have found Health Unlocked very early in my search for information for my hubby who has PD. I love reading the questions and replies and am learning so much. Suffering Socks
Am doing the same for my husband. He is reluctant to learn more about PD, he knows just the basics. I believe he would rather not know, and let me do all the research and reading. I am so fortunate to have found HU. Everything I know, I owe it to this site and the wonderful PwP who share their therapies, conventional and alternative, with us.
Thanks to everyone who has taken the survey so far. Very appreciated. It will take some time to gauge interest. I will continue to update this thread monthly.
Thanks Healthtom, Despe, iqbaliqbal, and others for the good words.
I wanted to give an update for people who've answered the survey. There’s still not enough response to garner making a data base yet, but will keep you posted.
I did do a website SEO (search engine optimization) and more traffic is going to the site. One concern about a database is that while treatments like thiamine are making a demonstrable difference, most people are employing an entire regimen of health and healing—not single treatment.
Will keep people posted. In the meanwhile, if anyone every has recommendations for resources to add to the site please let me know.
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