Health Organization for Pudendal Education

Good luck with the 5K, Movin. I could walk a 5K but definitely couldn't run one!

It might be a good idea to do some research on Dr. Weiss -- someone here might be able to give you more info about him. He does a lot of nerve blocks (unguided) and physical therapy and personally, I'm not too keen on the idea of a lot of nerve blocks because I know people who have gotten worse from them. If you are in the SF area, you might want to check out PT's Stephanie Prendergast and Liz Rummer or one of the other PT's on this list http://pudendalhope.org/node/63#CA before going the nerve block route.

Take care,

Violet

Hi Violet,

Thank you so much for your advice and information. I was having a really bad flare last week and thought that maybe I should research a more aggressive approach, but I think I was blinded by the pain. I live in Southern California, and that would have been quite the trip. I'm fortunate to have a wonderful physical therapist nearby, and hadn't been in to see her in awhile. Today she worked on me and I'm already feeling some improvement. It's the worst flare I've had so far, but I need to keep up with my exercises and management as well.

With regards to the 5k idea, I'm going to work up to it slowly. My goal would be to have a small fundraiser in my area and then build up to something on a larger scale. Have people held small fundraising events for pudendalhope.org before? I was thinking perhaps something like approaching a restaurant to donate a portion of their dinner service for one night to this organization or something along those lines.

Thanks again for your information and help!

MovinCa, I'm sorry to hear you had a bad flare-up. How do you manage to exercise with PNE? It scares me because exercise is what got me into this mess. Please be careful and don't do anything that makes you worse.

You have some great fundraising ideas. We have not done any local community fundraising so far -- I guess it's difficult with all of us so scattered and feeling like you are the only person in your city with this illness at times. Mostly we have relied on our website for online donations. I would love to see members get involved with local fundraising though.

One of my goals in the future is to assist docs with research grants, etc. but we aren't quite to that point yet -- still have several other goals we are trying to reach first.

Hi Everyone,

I know I haven't posted on this topic in awhile, but I am happy to say that with the help and encouragement of Violet and the support of the Board (thank you so much!), I am going to embark on my first effort to raise money for HOPE.

I will be walking in a local 5k on July 15th, and raising donations online through my blog at www.walking4hopepn.com or blogspot.walking4hopepn.com. If you are thinking of doing something like this, feel free to send me a private message and I'll be happy to provide some support and tips.

Thanks again to Violet and HOPE for all of the support!

Movin

...and I forgot to mention something. If you would like to dedicate a donation to someone, I'll be wearing the names of dedicatees (is that a word? ) around my neck during the 5k walk for donations of $25 or more.

Thank you!

Thanks for this MovinCA. So many people can talk about doing something to help and others just get on and do it!! Love your donations page and all that you have said to explain PN and your situation.
Wishing you every success
Helen

Thank you so much, Helen!

~Movin

Hi Movin,

I would love to see a video of you -- or at least a photo of you in your jogging attire. If you send me one I'll post it on the homepage if you want.

Hey, I couldn't get the link to your blog to work. Any ideas?

Thanks for all you are doing!

Violet M

Here's the link:

http://walking4hopepn.blogspot.com/

Hi Violet,

Thanks so much! That's a great idea. I've been debating on the whole photo thing....but I think I'll go for it. I'll take one in the shirt and send it over to you.

I'll have to check on the link. It reroutes to the walking4hopepn.blogspot.com, but sometimes it doesn't work. Thanks for letting me know so I can check on it. I think I'll change my signature just to reflect the blogspot address until I can get the other one to work a little better.

Thanks again!

Movin