Weekly Check In Dec 8-14, 2008
 

Hi Everyone..We took a three day trip to West Virginia this week after Laura got out of the hospital..We were going to go to Rhode Island untill her appointments at the Cleveland Clinic, but she was too sick to travel all that way when we left the hospital..They took her off all her pd meds, with a new dx, that turned out to be bogus, and she couldnt walk untill she started taking her Sinemet again..We drove about 3 hours after she was released from the Clinic, and we had to get a hotel room cuz she wasnt on pd meds at the time..Then after some thought, we decided it best to stay in Ohio untill the appointments on the 17th, 18th, and 19th..so we wandered around West Virginia for a couple of days, and headed back to Ohio..We have been experimenting with Sinemet doses, and dose timing, to try to fine tune her med regimen..We havent been going through extremes with it, but trying to tweak it a bit, to try to avoid hard offs..We had some success, as well as some failures, and trading dyskenisia for more on time on other attempts..Then theres other times where the meds just plain dont work at all, but we keep trying to nail it down so she can have some freedom from the hard crashes..She has been on Clonazapan for anxiety for a while, and they seem to bring her out of hard crashes sometimes..Can anyone share any info on this?

We went picture taking a couple of times, trying to keep busy doing something to escape the boredom..We are out in the sticks, and her laptop cant connect to the internet where we are staying, my cell phone has no bars, and we have a TV with no reception, so we watch a DVD just about everyday..We use her friend Lorrie's computer a couple of times per week to check e-mail, etc..But at the same time we are very grateful for having a place to stay per the extention of Lorrie's family's hand..They are very nice folks..Very humble, understanding, compassionate, and down to earth people, and it has been an absolute priviledge to having had met them..Laura is very spontaneous, and she never fails to devise a plan to fill the hours of the day with something fulfilling to do..Me..Im not spontaneous..Im the type that has to make regimented plans in advance..Why?..I have to know what Im doing, and when Im doing it..Like it matters, right?..Thank God for her spontaneous thinking

How was your week?

Tap dancing and other feats!
 

Thanks for the post on tap dancing... I have always wanted to try it. I never thought of doing it with a group of sr.'s

Steve: good to hear from you. Your situation sounds tough. What will the Cleveland clinic do with/for Laura?

What are you guys eating? May I suggest that you put yourselves on a diet of veggies, fruit and oatmeal and other grain foods. That is the only thing that keeps me off the ceiling when things get rough and my meds start acting stubborn.

Hang in there.

What will the Cleveland Clinic do for Laura?..I wish I knew the answer to that..Doing something right for her for a change would be a good place to start..It is a possibility that there is either something other than pd going on, or something pd going on that no doctor has been able to dx, and therefore treat..She is having great difficulty walking, as well as some kind of a strange mysterious state of mind and body that accompany it, and sometimes the meds work, and sometimes they dont, but when they do work, its always uncertain how long they will last..We've been tinkering with tweaking med timing..She was originally taking a half tablet of Sinemet every 3 hours..Well, it dont last 3 hours, so we tried 2 1/2 hours, with some success, and some failures..There was one med interval that the meds never kicked in at all..We've tried a whole Sinemet instead of a half, every 4 hours, then every 3 hours, with some success, but unfortunately more frequent and worse bouts of dyskenesia..This morning she was doing great..We took a ride to UPS some stuff to my house, because we have too much stuff to fit in the truck when we leave Ohio..Anyway, she took her meds, and 20 minutes later we stopped at Taco Bell, and short after we ate, that was the end of her on time..Damned protein must've derailed the Sinemet..So the diet that you speak of, or staying away from protein atleast an hour after taking meds maybe mandatory

Me on the other hand, I eat whatever I want whenever I want..No nuts and berries for this guy..:D