Hi Everyone..

Thanks to Dr John for providing us with an interum board to begin to get our community back together and take our first step at making our community whole again..It sure has been a long stretch!..I began to wonder if BT would ever come back online again, and over the past couple of weeks I have really had this feeling of being disconnected from my lifeline..I can tell you all that I did not like that feeling, and from those who I was in contact with via e-mail I think it is safe to say that the feeling was mutual..What came as a surprise about the whole thing to me anyway was the fact that John had spend a good deal of money on the system as a result of the last crash, and this crash was at least as bad as the last one..Well, I guess I shouldnt talk to loud because I have no idea what is holding my windows 98 together..But it sure is good to touch base with those who have found their way here..Definately a step in the right direction..Thanks to Rick for providing his Pd Power White Rats website for some of us refugees to touch base at..

My Newport R.I. support group picnic was today down at the Saconnet Vineyards, which is in Southeastern R.I. in what is the most scenic part of the state, and is a nice scenic ride..There were about 15 of us there and we talked about pd, our symptoms, and there were a couple of members who have had DBS and they shared their experiences with it..We jibber-jabbered about this and that while some of the group went into the winery and tasted the wines or bought some..This boy stayed far, far away from there.. ..When I used to taste wine I opened the bottle and threw the cork away..Who needs that damned thing?..

Other than that the weather has been beautiful here, kinda fall like, and Ive started the process of getting my conch traps ready to go back in the water next month sometime, which is good because Ive been in a do nothing rut lately, and the more nothing I do..The more nothing I wanna do

So thats the deal folks..Great to be amongst you all again..What is going on in your worlds?

Picture of the week:..The Clairborne Pell Bridge..Clairborne Pell was a long time incumbent Senator in R.I. who has pd..Jack Reed now has his seat in the senate

Click on link

Attached Images

Pell bridge.jpg (19.1 KB, 1539 views)

Hello Steve What a beautiful picture, I'm so glad to hear from all of you, I feel like I have been away on vacation and I am back and eager to hear how all of you are doing. The weather is changing and we are starting to prepare for colder temperatures, I have been getting some of my warmer clothes out especially in the evenings. I love the fall but I could do without the long, cold winter. No sense in whining about it! I have been doing so well this summer its almost too good to be true. It makes me wonder how long I can keep this going before I take a dive. I will just try to live for the moment, its worked for me so far. My grandson turned 3 yesterday. He is turning into a little boy now, I will be looking after him for a few days while my son and daughter-in-law go on vacation. I'm sure he will keep me very busy, I love to spend time with him, children are so innocent and oblivious to all the worries that we adults seem to carry around with us. Today I am gong to visit a friend who is preparing to go for surgery. I like to help out, the busier I am the better. Hope all of you are still on board as Steve would say, grab an oar.

What a relief to see the weekly update. I guess I had taken BT for granted. I have been participating since 1995 when it was the old Dumpster Gang. The worst was the feeling of having no one to turn to if I needed real life advice from those who had the same issues. Thanks to those who keipt in touch and to Dr. John for throwing a lifeline.

MKane

be back later

It's so nice to have the weekly check-in back. Feels like family again...

It was also nice to see the new message from John on BT1.

Since I've "seen" you all last, my wife and I had our first real vacation in 5 years and it couldn't have come at a better time. We spent a week in Oahu at the Marriot Beach Club at Ko Olina. (Highly recommended!) It was nothing short of spectacular. Private lagoons, perfect weather, and everyone was so kind and nice. (Which was a shock coming from ego-centered LA!) I just so needed a break and literally spent every day either lounging in our little cabana on the beach or floating in the lagoon. The water took all my dystonia pain away. Abosultely remarkable! It was hard coming home, but what a great time!

Our weather had consistently been in the 100's. At least we don't get the humidity like back east. I'm thankful for that.

As part of my personal coping with my diagnosis, I've been out speaking about living with PD and it's going very well. It's very therapeutic for me to be able to share my personal story with a room full of strangers. (Plus, it's cheaper than therapy!) It's gone so well that we've moved into a full-fledged business, with forming a S-corporpation, to building a website, to getting a logo designed, etc. Plus, the documentary is in full swing. Everything has certainly taken on a life of it's own.

I'm also in the process of starting a young-onset group in my area because there is nothing. It looks like we're going to have some luck with that as well, so that's exciting. I've been feeling a bit isolated with the loss of BT (my favorite forum and people) and not having a group anywhere close to me, so hopefully this new group will pan out into something positive.

I hope everyone is doing well

Hi All,
Yes, it's good to see some familiar names floating around on my computer screen.Thanks to Dr. John for allowing us to use up his bandwith. Things are slowly getting back to "normal" what ever that is.
I think we should officially term July and August 06 as the weird months. Not only did BT1 crash but a lot of weird things have been going on in the world. I only hope September and October are better.

Steve, I'd post a pretty picture but all you would see is corn stalks and soy beans. Todd, I used to work part time at the Marriot Beach Club at Ko Olina several years ago. I'm glad you were able to enjoy yourself.

Later,

GregD

Hi Steve:

Glad to hear from you. I want to thank you for keeping me posted on the fate of Braintalk. Today (Sunday) is dreary but I suspect that you are seeing the same kind of weather since you're not that far away from me. A week from yesterday I'll be going up that way and will travel as far north as Halifax. Will be away fot about 10 days. After that I'll make some effort to get my life in order. The collapse of BB1 has been rather disorienting and I have to become more disciplined with exercise, diet, communication and work. I've been making some effort to get into the PD chat room.My first attempt was disconcerting and I fled when I was recognized. Fleeing was easy. This afternoon I went in again but no one was there and I took the opportunity to look around. Maybe I'll try again after I sign off from you.

Have a good week

Lloyd

So pleased to see this update. Thanks :-)

I have been posting all over the place, but in case you are really bored and want a repeat: I now have a "kinda" dx, and because of it I will let you folks be the judge as to whether I belong here. I evidently have viral parkinsonism (similar to what the folks in Awakenings) not Parkinson's.

I have been sick on the other side - first thought it was an ectopic pregnancy. It has been ruled out, as has ovarian and uterine cancer. My gp thinks that the problem is due to adhesions, but drs around here don't do surgery for that, evidently. I have an appointment with another specialist.

My daughter who has disabilities has oral surgery coming up on the 8th, so I hope that you folks will be thinking of her.

Sorry for the negativeness. I am very happy for the friends that I have met here and on the NM forum.

Mama

Hey Greg,

Small world for sure. Did you work at the hotel (north of the 4th lagoon) or the timeshare by lagoon number 2? (We were at the timeshare south of the hotel.) I don't know when you were there last, but they've built a whole new building, remodeled the older building, and re-did the entire grounds and two swimming pools. It's absolutely stunning now. We stayed in our timeshare, which is a two bedroom, two bath with a full kitchen and a beautiful view of the lagoon. They're adding a new building just south of the timeshare and putting in condos/townhomes facing lagoon 3. Anyway, I loved it and can't wait to go back! So weird you worked there...

Todd,
I worked at the hotel north of the 4th lagoon. Basically, all over the place because I was maintenance. This was back in 1981 so I'm sure it's changed alot since then.

GregD