Hi Everyone..and Hello and Welcome to our Moderators Bobbi and Hannabanana

I spent most of my week getting my boat straightened out..flushed out..and changed a few things around to get ready to start fishing later in the week..The usual

Other than that I went to one of my support groups this morning..Got..Well..They needed a new treasurer because the lady who used to do it cant anymore because she had to put her husband who has pd into assisted living..So the group was asked if anyone wanted to take the position and nobody raised their hand so I volunteered..Then the groups fasilitator of the group announced that he would like to step down because hes had pd for a long time..had DBS surgery a few years ago..and he said that he needs a break..the group is small and we want to keep it going so we will manage somehow..My/our concern is not only for the members who are already there, including myself, but for the newcomers who occasionally come to our little group who have more questions than answers..and usually in despair..for that we have to continue on..Theres lots of pd stuff coming up locally for us Rhode Islanders..Our annual Race, Walk, and Roll is this coming Saturday the 30th..Then on Oct 14, Rep. Jim Langevin is going to be the speaker at the East Greenwich R.I. support group, and hes going to talk to the group about stem cell research in Rhode Island..The on Nov 5-6 is the New England Symposium in Strubridge, Mass..I was told to write a couple of paragraph speech to introduce myself as the new R.I. PAN Coordinator at the symposium..Im gonna make damn sure its written down in front of me in large enough font so's that I dont start stuttering like porky pig.. ..Everytime I start to explain something, and or get nervous, or cant think of the right word to use which happens often these days..I start stuttering like a fool and my voice freezes, and my mind is going 100 mph but my mouth is either glued open or glued shut.. ..That is one of the many wonderful ways that pd affects me..So if Ive got it written down, Im safe..So thats my week folks

How was everyone elses?

If we don't find a cleaning lady soon we may drown in dust - cough cough achoo!!!! our wonderful once a month cleaner bought a catering service, and we can't keep up with the dust in this old house. A new cleaning lady is coming to interview us next week, I hope she doesn't despair at the prospect. Small problems count too.

birte

Hi Steve:

Just got back from Maine this afternoon. Was there for a long weekend. Hope to be there permanently by the end of next year. Things are going well. PD doesn't seem to have advanced but my arthritic knees remind me that there are other issues besides PD. Hope to make better use of BT when it is finally back on line.

All th best

Lloyd

Lloyd - I used to run a hockey camp in the summer up in northern Maine. Was stunningly beautiful in the summertime but no thanks on the winter! Too much cold and PD just don't work well for me.

Steve - Glad you got the boat issues straightened out. And it looks like your tiny state has a great deal of PD related stuff going on. Good for you guys!

Life is crazy. I'm well immersed in my final semester of grad school and student teaching. Getting the business up and running has been one adventure after another. Get to spend Tuesday this week at the Long Beach Convention Center with Maria Shriver, Arnold (I'm still waiting to hear him say gubernatorial in Arnie-speak), Martha Stewart, Trya Banks, Suse Orman, and 11,000 other highly motivated women. I get to work the NPF PD booth and promote my speaking business, so that's cool.

Basically fired my neurologist this week. Me: "Can I try some Sinemet CR at bedtime to help me sleep?" Her: "No. We don't use it for that." Me: "Okay, can I try some Parcopa?" Her: "What's Parcopa?" Later, she tried to backtrack by saying Parcopa is only for end-stage patients. Ugh. So it's off to a new neurologist in a different part of the county to try and find someone within my healthcare system who has a clue. I did see a MDS that was highly regarded (I payed out of pocket but he cut me a deal) and he was so awesome. Do we really need these kind of struggles with everything else we have to deal with? I think not! Insurance is such a necessary evil.

Otherwise, life is good. We're into warm days and cool nights and I'm feeling allright. Hope everyone is well...

Todd
PDTalks.com

I've been checking for Braintalk daily since it went down - it's my only contact with other PWP. Today, nothing came up when I clicked on it and I was really discouraged - thought it had disappeared altogether. My husband suggested I google braintalk and there you are!!! Can't believe I've missed a whole month!!

It's been quite a two months. Had a wonderful holiday, on a big houseboat with three other families for a week, and then another week on a small one that some friends use as a guest cottage. Did no exercise at all, just ate and enjoyed life. Came home and discovered that i was as stiff as a board and completely out of shape. I had never realized what regular stretching and walking was doing for me, or how quickly I can deteriorate. It was quite eye-opening and discouraging.

Before that I hiked for two days in Jasper with the same group as last year. It was blazing hot, the sweat was just running down me the second day, but I kept up well enough. It's a great pleasure to work that hard, may it continue for many years to come.

In three days I'm going to talk to my supervisor. I'm not sure how much longer I can continue with my job effectively and safely. The "step hesitation" makes me wonder if I could grab a falling patient fast enough - although an incident last week had me moving instantaneously. And my left hand is just gimpy enough that some things are difficult. I'm not sure exactly what I want to happen, and it's not entirely my decision. Interesting days.

I'm so glad this forum is functioning again and thanks, Steve, for being there each week.

Like many have posted, I'm so glad to have finally found where familiar "faces" from BT1 are hanging out! I don't know anything about people getting banned on BT1 or whatever the discord may have been. For me, it was just a great place to share information.

I hope Everett (author of the White Rat posts) will find his way here (or already has!) so I can thank him. I had minor surgery in August and used info he had provided in a post to ensure that my doctor, anethesiologist, and the recovery staff were all on the same page. It gave me a real sense of security to know I'd covered the potential areas for trouble before my surgery.

Otherwise, I just got back from my 11th annual ladies weekend with friends from the days when we lived in Philadelphia. With these great friends, it's always as if I've never been away! And their accommodation to my flucuating physical state was perfect - adjust, help, don't make a big deal of it. So, a big week seeing old friends and finding old friends online at BT2!

DJM1
(formerly DJM on BT1; Internetqueen on old BT1 archives.)