Just wanted to let you guys know how much you have helped me through the past year following my husbands diagnosis. I have seldom written an original post, but have shared some ips and downs on thers posts here and there. I am a bit frustrated with all of the SPAM that gets through, while my posts from my phone are delayed for the monitors to evaluate the content prior to posting. I realize that is just the way the site is arranged and I am not angry with anyone in particular. Thank you guys for sharing your journeys and I will continue to be on the facebook sites and hope to run into you guys there from time to time.
I am grateful for your input and acceptence here, just tired of weeding through the countless running shoes and other spam here. Best wishes to all of you and your walk with this hideous disease!

Please keep in mind that this site is run and funded entirely by Steve and me out of our household budget. Before we had the registration system, we had more than 100 spam posts a day. Now there are usually only a few posts a day. These spammers are not using the old robots to post, they are registering as individuals. We could slow them down by making them read and duplicate those funny letters and numbers but, I have trouble reading them and people with HD who have eye movements can't do it at all. And honestly, it is pretty easy to see what is spam. Don't click on it!

You may wonder what is different these days that you see spam for a day or so when that wasn't the case before. Well it's ME, I am different. I am not working anymore so I am not sitting on the computer for much of the day. I have other things that need to be done. I have a life apart from HD. I was a caregiver for many years and I may be again. While I have a break, I would really really like to do housework, go out to lunch, birdwatch, renovate houses, and so forth. If people are ticked about that, I don't much care.

I happen to know that it cost $40,000 a year to run another HD site. Steve and I don't have that kind of money. We have many times over the years been offered money to run the Lighthouse. We have never accepted it because this site is BY HD families, FOR HD families, and funded by an HD family (us). That way we can say what we want and are not obligated to a funding source.

So that means that updating software to improve the mobile aspect is going to have to wait until Steve has time to do something about it. He puts a lot of unpaid overtime into his work and I am grateful that he does because these days, in you have a good job, you are lucky and you need to keep it.

Enjoy the sponsored ads on Facebook dear.

Oh and the moderators, ie me, do not evaluate content before approving mobile submissions. As long as I recognize a regular poster, I approve it, sight unseen. The software just does not respond well to posts from mobile phones. It also doesn't organize the site properly for mobile phones. It is irritating for me too because I would love to manage this site from my mobile phone. Spam could be deleted while I am at the dentist, in a check out line, etc! But again, an upgrade is very time consuming and we can't do it now.

Again, I understand and appreciate all you guys do, I am not trying to be critical of your management of this site and you are not obligated to explain anything to me. I am more disgusted with the people who are doing as you say, creating an account for the sole purpose of selling BS. Breaks my heart that these people have no clue what this board is even about yet have all sorts of access to our posts and either don't don't read them to find out, or read them and don't give a crap. Again I am not angry with you guys or anyone here to run the site or post legitimate questions or comments, just disheartened by the creeps.

are you a member of the Yahoo group?
[groups.yahoo.com]
The site is for caregivers and the members are screened.

Vicky, I hate to see you leave. I have enjoyed what you have shared and believe there is more that you could share in the future. You have to make your own decisions and you will be missed.

In addition, I appreciate Steve and Marsha contributing so much time to us to give us a sounding board and in depth knowledge about what is going on. Personally, I don't do all of the social media and if I could I'm not sure I would. To each his (her) own.

To me, this forum has been a life saver. Without all of those here I would be a (big) basket case. Not that I'm not already. I too see the spam but it is not much more than a minor nuisance for me. From speaking to Marsha on occasion I understand all that she and Steve want to do now that they are able. It was supposed to be in the same situation in a few years but thanks to HD all that changed. Unfortunately it didn't turn out that way for me nor your husband.

As you said, our journey's are just that. Much uncharted water and everyone who contributes helps someone. Whether we hear from those in the shadows or not I hope they know we are all travelling an uncertain path.

I wish you and your husband (family) the best.

Mike

Vicky,
I also am very sad that you are leaving. You can't imagine how much you have helped me this past year in responding to my post. I will miss you terribly but I understand. I just do what Marsha suggested, I don't click on them and eventually they go away.
I am haveing a very hard time with Donnie right now and am gonna update my post later today.
I wish, if you have time to please read it and comment one more time with any advice you can give. I treasure every word that you have said to me and I thank you very much for taking the time for me.
Love,
Liz

Thats a shame Vicky - although I have had not email contact with you - there seem to be wellwishers on thsi site that have found your posts insightful and will miss you and I suppose the support they can give to you and you to them

Spam well - it gets on my nerves too esp as I have started reading it with expectations - to it dawned on me 'Oh right they are trying to sell me some goods' but in my mind I was thinking 'Oh maybe its a new type of trainers that helps people with HD running' - my silly head is still trying to compute it! ...

But then life is full of ........ Anyway - as a Catholic priest once told my cousin (excuse my language) = ' dont let the B****** get you down!

I wish you well in your journey and in your families.. its a journey were are all making in some shape or form

Best wishes DXX

I don't know Vicky well as I don't frequent forums much. I wish I came 'round here more often as this is a great forum. Hopefully, Vicky will hang in there. The grass is not always greener... and where it is... it might have a bad herbicide involved as a bad trade-off.

I really wanted to post to thank Marsha and Steve for their charitable spirits and all that they do for this HD community. They help improve people's lives more than they will ever know. So again, thanks to you two! Ty

ME TOO! I can't say how much this is done for me and Thank Marsha and Steve so much!!

Hi Marsha,

I don't post much but am on this site but on it on a daily basis. I've gotten so much from what you and Steve do to keep this site up and running. No problem to look at a little spam here and there. I'd be lost without you guy's. Can't begin to put a dollar amount on what you do to keep us in the loop on the latest and explain in a way I can understand. Hopefully we'll all see the magic post "a cure has been found!" from you in the next few years. In the mean time thanks again for everything you and Steve have done for us all!

Schlink

I agree that this site is so very valuable to me that the spam is not even a tiny issue. I too am grateful to Marsha and Steve.