November 23, 2022 at 6:07 pm #25510AllyKeymaster
We’re always looking for ways to make your experience in these forums better.
Is there anything you would like to add or change about how the forums operate? What is something you’re looking for that’s missing? All ideas are welcome!
November 24, 2022 at 4:46 pm #25513JoannaParticipant
I’d like to see a lot more positive topics, instead of always dwelling on symptoms. I’d also like to see more topics on exercise and natural remedies, and a focus on staying positive. Of how to be a winner in this. I’d also like to hear from people who are still working and/or living life to its fullest. I’ve been following this forum for awhile, but once I see topic headings, I delete my email.
November 25, 2022 at 12:45 pm #25521Mary Beth SkylisModerator
Thank you for those suggestions. I love those ideas, and will make sure to add a few topics that highlight positivity. You’re always welcome to start topics of your own, if you’re interested, as well. Please let me know if you’d like help with that!
November 25, 2022 at 10:13 am #25516Ana Maria TamayoParticipant
I live in Lima Perú, so english is not my first language. Would it be possible to send audio messages and not only written messages?
The energy that may come from an micro audio may be astonishing.
Would it be possible to have a zoom forum once a month?
November 28, 2022 at 5:24 pm #25535Toni ShapiroParticipant
Hi Joanna, I was surprised to read that you don’t find much that is positive on this site. Personally I find positives in all of the Forums. The Forums are helpful to me in various ways and contain information that does embrace the positive, including the Symptoms Forum and Living With Parkinson’s Forum. To me a symptom is not a negative in itself, symptoms are simply facts. I can deal with those facts in positive ways, ie connecting with someone on this Forum while exchanging symptom information, as well as ways to work on something specific to improve my situation and to live my life to the fullest. I feel empowered by this. I like to keep in mind that living our best lives doesn’t look the same for everyone. Forum users identifying symptoms provide information for others with similar issues to go forward and do their own research, discover alternative treatments and/or suggest helpful exercise/physio info, etc. which seems quite positive to me. It’s possible you are missing information you could relate to by deleting Forums or posts based on the titles alone or ones that include symptoms in the title. You mentioned exercise and alternative treatments. Both topics have individual Forums…..Parkinson’s and Exercise and Parkinson’s Alternative Treatment. I hope you can find what you are looking for. I wish you the best.
November 29, 2022 at 10:20 am #25537Clive VarejesParticipant
I really do find the forum interesting and the feedback from people in various stages of PD, be they PD sufferers themselves, or care givers is really amazing. The way people open up stating their fears, problems, difficulties, & highlights as well as suggestions for others to follow is wonderful.
My problem is that I have had a few of my comments deleted as well as some edited by, I can only presume one of the moderators for some obscure reason. I have asked why, as I obviously would not do anything that may cause distress however was met with a deafening silence. If I said something wrong I would like to have known what and why.
I just find it incomprehensible that someone would delete/edit my comments without having the common courtesy or gumption of saying why however, I have no doubt I am not the only one this has happened to.
I am on a number of differing forums as well as consulting for Suicides Anonymous and Depression and Anxiety groups and have never had this type of asinine situation before.
Thank you for the forum, it is really interesting and informative. However Que sera sera
As I feel there is a more than fair chance that this will be deleted/edited as well, I will say my goodbyes and remove myself from this forum.
November 29, 2022 at 5:49 pm #25538Christine P.Participant
Hi Ally, I would like to know more about Clinical Trial and Stem Cell Treatment information about Parkinson’s. I was diagnosed last year with movement disorder gait issues, I heard about Clinical trial, but not sure whether should or should not participate and how to, if I choose to participate; also the pros and cons of clinical trials. Thank you.
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