How can we make improvements to the forums?

[Joanna]

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. 

[Mary Beth Skylis]

Hi Joanna,

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!

[Ally]

Hi Joanna, thanks for the feedback! I also wanted to mention that you are welcome to create topics that interest you. 🙂 If you would like guidance on how to do this, let know – happy to help and happy you’re part of this community.

[Ana Maria Tamayo]

Hello Ally,

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?

 

 

[Ally]

Hi Ana Maria, these are great ideas. I will bring them forward to the forum leadership team to see what we can do. Thank you!

[Toni Shapiro]

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.

 

[Mary Beth Skylis]

Toni, thank you for your thoughtful commentary. You’re such a wonderful addition to our forums.

 

[Clive Varejes]

Hi Ally,

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.

[Robert Harris]

I agree with Clive. I have had a handful of my replies deleted silently, and have never had a response when I have asked why. Moreover, there are no posted rules or guidelines that explain what is required and what is prohibited.

I have spent several hours on one or two occasions writing up a post that I thought would be helpful, only to see it disappear in a day or two.

Let us know what you want and what you don’t want.

[Mary Beth Skylis]

Hi Clive and Robert,

Thank you for your messages and for alerting us to these problems. We always appreciate feedback about the user experience.

Regarding editing, sometimes the moderators will edit posts that were copy and pasted from another document because the formatting from those other programs shows up looking very odd (ie <<space.theme.><Format). Without the edits, posts like those can be very difficult to read. But as far as I’m aware, I don’t believe we edit any content without alerting our forum members to forum violations.

We could also be struggling with a bug that’s impacting posts. Sometimes the forums glitch out a little bit. And this is something we’d definitely want to know about so we can alert our tech team to potential issues. Please feel free to reach out to me or Ally in the future if there are any odd disappearances or edits. We want to create a helpful and informative space to talk about Parkinson’s and caregiving, and we need your help to do it 🙂

For anyone who is interested, our code of conduct can be found here, as well: https://parkinsonsnewstoday.com/forums/about-our-forums/

Warmly,

Mary Beth

About Our Forums

[Alan M]

To Ally and Mary Beth:

I want to encourage you both in the ways you’ve chosen to get responses and involvement by your readership.  As a group facilitator for many years, I found the best way to solicit feedback is to “prime the pump” with great “noticings” you both [or others around you] may have had (and continue to have).

Mary Beth, your dad’s experiences have been a gold mine of personal experiences for PWP!  I almost feel like I’ve come to know him somewhat just through your insightful sharing.  I can see how this brave man might have fathered such a wonderful and empathic young lady: so caring and observant.

In many ways, I’d say it’s hard to improve upon perfection.  Your humble ways of approaching varied topics, and the respectful ways in which you both handle responses evoked for each contributor further serves as “invitations” for all peeps to participate.  In a word, “Tumeke” (Maori for ‘well done’!)  Keep up the good efforts.  Just be yourselves.  It gives other permission to do the same — just be themselves.  And, at times, a bit of jocularity (laughter) is the best antidote to loss.

Your loyal fan, Alan

[Ally]

Alan, I’m just getting caught up on forum posts after having been away during the holidays – this post made my day. Thank you for your kind words and honest feedback. I’m so glad you’re part of this community with us. 🙂

[Mary Beth Skylis]

Alan,

Thank you for your kind and thoughtful comments. Parkinson’s is such a tricky subject because it takes all the good and evil in the world and muddles it together. But I’m truly comforted to know that our forums and discussions are helping others (thanks to people like you).

My dad isn’t very quick to talk about the things that impact him on a day-to-day basis. But I’ve found that our forums and columns are a great opportunity to spark conversation. And that when we read about one another’s experience, we feel less isolated by the disease. They also seem to give us a greater depth of understanding about some of the things that he experiences.

And any time I see your name pop up in the activity category, I know that I’m in for a wonderful thought or collection of ideas. Thank you so much for your participation. We wouldn’t be the same without you.

Consider me a loyal fan of yours, as well.

[Gail Dons]

Hi Mary-Beth,

Thanks for posting!

[Gail Dons]

<div>Hi Marybeth!</div><div>I’ve tried twice to post a response on the forum on autonomic dysfunction and both times have gotten an error message that states my message can’t be posted at this time. What todo?</div>

[Ally]

Gail, thanks for letting us know. I’m going to ping our IT person to see what the issue is.

[Ally]

Hi Clive and Robert,

I am so sorry you’ve had this experience – I truly don’t know why your posts have been deleted. Please reach out and let me or Mary Beth know if this happens in the future. I can say with confidence that neither one of us has ever or would ever edit and/or delete content by any forum member without letting them know first. The fact that this has happened to both of you more than once is concerning to me and I’m going to follow-up with the tech team that supports this forum to look into this further.

[Christine P.]

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.

[Ally]

Thanks, Christine. This is a great idea. If you find anything on this topic, feel free to share it and I’ll keep an eye out for news in this area, too.

[Gerald McCarty]

When I click on a link in email I have to login and then the forum I wanted to discuss is no longer on the screen. I have to search for it again. This must be fixed soon.

Thanks in advance.

[Ally]

Thanks, Gerald! I’ve passed your feedback on to the team that works on this sort of thing. Thanks for bringing it to our attention. 🙂

[Ally]

Hi Gerald, please email [email protected] about this problem and he’ll connect you with the IT folks who can help. Thanks!

[Ande]

I would like to hear all the new things going on with PD like I’ve heard that Elon Musk’s company called Neuralink, is coming up with an AI that would be implanted in the brain called the Link, which aims to help patients with severe paralysis control external technologies using only neural signals. There are other companies that are improving DBS to work more direct with the nervous system instead of just sticking wires in your head and wishing for the best, not really knowing why it works.

[Ally]

Thanks for the suggestion, Ande! I’ll pass this feedback along to the team that runs our news site. (Let me know if you’d like the link for that – I know sometimes folks join the forums without knowing we have a whole website of resources and news articles, too.)

[Jonathan Shipman]

Well first it would be good that since I do subscribe it would be good if i could make a comment to a post which it never lets me do. This is both in regards to comments and articles. I understand that you are essetally a place for PR I wish you would make that clearer but I also wish you would make clearer to the reader how far out the drugs you are promoting are from coming to market if they ever do, I also wish you somehow could not make this a place were people felt free to promote their unproven solutions to Parkinsons