[stevem53]

Hi Everyone..It looks like the rainy season is starting in the Pacific Northwest..Unlike New England the weather has been mild here..Ill bet it cold back in the Northeast

It has been a very good week for me and Laura in alot of respects, but there have been some tough times as well..Laura hasnt had a good week physically, and has had some extremely challenging days..The kind of challenges that make you feel absolutely powerless, and bring you to tears..She did get into her Neuro this past week, and they finally are starting to listen to her concerns about her pd..They tried to re-program her DBS, and one side responed, and the other side didnt, so obviously theres something wrong with her DBS..And while she was getting programed, something went horribley wrong, and she got shocked twice, and shocked real bad the second time..It was excruciating to watch..I dont know what that guy did, but it was some scarey..So the long and short of it is, that one of the DBS leads is evidently in the wrong place, but I will let Laura talk about that..Anyway, your prayers would be much appreciated

We did some sight seeing, went to this ice cream place, that I cant remember the name of at the moment, where you create your own ice cream cone or dish..Cold Stone somethinerotha?..Absolute ice cream heaven!..And Laura and her granddaughter were having a ball making fun of my New England accent, again, trying to teach me how to pronouce my "r's"..and I couldnt do it..They said I talk like Ray Romano!!..Da noive!!

Ohh..And what I said last week about us not beginning a relationship now?..Uhhh.......Nevermind

Yesterday we went to the Hope Conference, and we had a great time..Got to meet some new people from the forum..I met Darryl aka Dbiker, and his wife Silvia, as well as Rosebud's friend Max..Great people who were a pleasure to meet..The six of us went out to eat after the conference, and we had a great time!..I got to see Jean B again, and Greg and AJ..Talked to Greg for a while, about this n' that, and about how he met AJ and how Laura and I met..I also met some of Laura's friends, and she introduced me to Bill Bell..So it has been a great week, and Im so happy that I came out here..I am going to stay longer than originally planned..Turns out they are going to get Laura in for an MRI and a CT Scan on the 10th, and she has to be in Seattle at about 6:00 am, and she didnt have anyone to drive her there..I was scheduled to get a flight back home on the 6th..So I am going to stay longer so she can make that appointment and get the ball rolling here, and hopefully get this DBS thing straightened out, so she can enjoy some better quality of health and life that she deserves..that we all deserve..Some hope!

Time to go and get ready to go to church..Im not much of a church go-er, but I certainly have alot to pray for, and alot to be thankful, and grateful for..Sounds like the appropriate thing to do this morning

How was your week/

[olsen]

Steve, your sense of gratitude and humility are so refreshing and uplifting. You and Laura are 2 lucky people to have found one another. My prayers are with her for a rapid solution to the lead placement problem.

Weather this weekend has been great, low 70's, and predicted to be for the rest of the week. Husband just returned from a nature photo trip with 2 photography buddies. They photographed beginning autumn in the smokeys in tennessee. The colors he captured are spectacular, signifying that spring was wet enough this year.
I am researching where to find organic turkeys for thanksgiving. Since Wild Oats was bought by Whole Foods, the "organic" connection for turkeys is no longer available thru their regular markets. The AMish provide most of the natural chickens, though turkeys are not one of their products, here at least.
We are trying to decide about flu shots this yr. I know it was reported that the strain was way off last yr, and experienced it firsthand, since I received a flu shot and an exceptionally bad case of the flu. single dose injections without thimerasol as a pereservative are not easy preparations to obtain.

madelyn

[dbiker2]

My wife and I went to the Hope Conference yesterday, the first PD conference of that size that I have been to. It was kinda weird being with a few hundred people that had PD, felt right at home stumbling up and down the hallway.

As Steve said we met him and Laura (Harley) as well as Joy (Rosebud) and her freind Max we went out to dinner together after the conference and had a great time. Good bunch of people.

Well I start a 3 weeks class Monday for learning the software and policies and procedures for taking customer service call for Barnes & Noble out of my house. Should be interesting. Give me something to do and earn a few $$$.

Steve is right about the rainy season finally getting here, been raining for the last 3 days and is really coming down right now. Well the Seahawks game is on and I am missing it so I am outta here.............................

[MKane]

Steve & Laura,

I also had some rough times with my DBS reaching a peak thiss ummer. So,the beginning of September I flew back to Maryland. I also was shocked badly. As a result I underwent an additional surgery on 9/22. First, they were going to remove one of the leads, but at the last minute in the OR the decided not to and put another one in beside it. The didn't connect the new one because they thought the old one started to work properly. Shortly after leaving the OR it shut down again. Two weeks laster they went in again and connected the new wire and I have been virtually tremor free since. Tell Laura to keep after them until they fix her. I'm still trying to recover from the surgeries and can't walk very well, but I'm doing some exercises and hope the walking will return.

Mary

[Evonne]

Hello Guys and Gals! I haven't posted in awhile. I am done working at the care center and I am waiting to start my new job at the hospital. I had my first care center resident pass away last week. It was pretty devastating. I am a no holds barred type of person. I love with all that I have to give and I don't know how to protect myself from this type of hurt when you lose someone that you have taken care of and have really developed a bond with. People tell me that I need to have stronger boundaries...I just don't know how to do that. I don't want to become an uncaring person but I now realize the need to protect my heart a little bit more. It is something that I will need to figure out.

In addition to all of this, I spent three days last week painting the inside of my house. It was a big job to tackle and I am happy to say that it turned out really well...inspite of my shaky hands! I learned a new technique for cutting in and it worked like a charm. The house looks beautiful! I wish I could say that I did all of this painting without feeling any pain or discomfort, but that would be a lie. I am still recovering from the workout.

Steve, I am so sorry to hear about the difficulties that Laura is having. I will keep you both in my prayers. I will pray that God leads you to the place where Laura will find the care that she needs to get her moving forward again. I will pray that God continues to keep you both strong, inspite of whatever may come your way, so that you may continue to be a blessing to eachother. It is awesome to me that in this big, crazy world you two have found eachother and are fighting the good fight together. God Bless.

[rosebud]

to post a few words about thee weekend in Seattle. As you read earlier Max and I drove down from Canada. We decided to take Max's oldish Van which was camperized so we would have lots of room to bring jackets, boots, etc because the weather is sooooo unpredictable. And yes we got a great cross section. The conference was good, but a lot of sitting for a long time. The most fun was a presentation by a neuropsychologist who did an fun demo of the Nintendo Wii -an electronic interactive game device. We al wanted to go buy one after cuz it keeps the brain working.

I spoke to most of the above, mentioned by Steve and Dbiker (formerly known as "Dave"), but now known as Darrell! And he has a really nice wife named Sylvia (I hope I got that right???). Max told me later that she found Darrell on e-bay, which really confused me... I was already having trouble with the Dave/Darrell thing. We are still laughing about that one. He did correct the misunderstanding.

[KC Tower]

Rosebud - what games were demoed and anything that was thought to be of particular benefit for our specific brand of need for mental/physical exercise???

hey do you ever make it in to Brentwood???

take care ,,, ken

[Evon]

Hi Steve Its been a while since I checked in, haven't been posting as much but I have been reading a lot of the posts. So happy to hear that you and Laura connected. Nobody can understand what a PWP goes through better than another PWP. I hope you both can spend some quality time together and give each other lots of support as well as happiness. We all need to get close to someone but it is not easy when you have a progressive disease. I have also been spending some time with someone, a friend from my younger years. Its funny how these things come about, I am feeling quite good although I don't like to get too close, I always am waiting for this disease to throw another setback at me. I guess we have to live for today and enjoy the good times that come our way, I feel lucky five years after dxs to still be able to do lots and even have a new relationship. Who would have thought?

[harley]

up and down and round and round. im gettin dizzy riding the parkie merry-go-round. so i am doin it one day at a time to maintain some type of sanity. the conference was mahvales. saw many old friends, met many new. lots of people there. but, i usually get bored after a couple of hours of parkie talk, so steve and i left for awhile and i took him to yet another beach nearby. we came back, said our goodbyes to many and went and hung out with max and joy for a bit. max gave us some samples of mucuna, which i felt did make a difference.. thank you max.

so far i have tried to show steve as much of what the pacific nw is as we are able to given my health situation. he has been to alki beach, driven downtown seattle seeing the space needle, etc.. he got to drive over evergreen floating bridge, hood canal bridge and narrows bridge. he has seen the beauty of both the cascade and olympic mountains, watched natives shore seine salmon (net fishing), and got to salmon fish himself with a pole (though not catching any), got squirted by gooey ducks, experienced frappiccinos, and went chantrelle picking (wild mushrooms). we have driven up both peninsulas.. (kitsap and olympic) on blessed sunny days so he could experience the puget sound, strait of juan de fuca, and hood canal. we also went into the foothills of the olympics where waterfalls and tons of moss mingled with the colours of autumn. he has driven our big hills, our windy roads and i watch his face as he falls in love with my home state.

we are discovering how to listen, teach, learn, accept, develop patience and how to accept each others humanness.

all is good.

today, i work on a song...

[burckle]

Hi:

Just got back (last night) from Norway. Several weeks ago my wife and I flew to Bergen to board a ship for a 2 week cruise along the Norwegian coast. We made it beyond the Arctic Circle as far north as the Norwegian/Russian border. No Northern Lights although we looked for it every night. The weather was so so; rainy at times although there were also some beautiful days. I'm glad that I can still make it although European side walks are hard on my balance.

While in Norway I saw my former post-doctoral students (two of them). Both are working for the Polar Institute in Bergen. One of them suggested that I come to Norway to work with them. I'm sure he was jesting but I checked with my wife just to make sure that she would come with me in case he wasn't. She said yes, she would come.

Sorry I missed the Hope Conference. Actually I didn't even know about it. I suppose if I had known my wife would have agreed to accompany me. I generally don't travel alone any more unless it's over a short distance. Coming home, I got some bad news; a colleague died in my absence. We had worked together for more than 40 years. He will be missed.

All the best.

Lloyd