Weekly Check-In Aug 3-9, 2008
 

Hi everyone..I dont have much to report this week..I wake up in the morning these days and feel physically defeated before I start, so I havent been doing much..I went out shellfishing on Wednesday, and pushed myself too much, and I paid for it for three days..I knew I would pay a price for it anyway, so I figured it made no difference if I stayed one hour, or three hours, so I stayed untill I couldnt take anymore..Ive found that fatigue is my biggest problem with pd..Im thinking about trying some B 12 or something..This is really discouraging


How was your week?

steve
 

the older you get, the harder it is to stay in shape. I know I have gotten so oout of shape that its pathetic. I am doing aquatic exercise that is helping quite a bit. Check out your local YMCA and see whats available. With our PD we become quite sedentary also. I have a small walking track in my back yard, or you can hit garage sales til you find a used treadmill. That stuff sells for next-to-nothing when it is used.
USe it or lose it!!

CHarlie

Maybe some of you have read the saga of my summer journey in harley's thread. We are back. Three days later I went off KW6002, an experimental drug I have been taking for 3 years, because the pharma halted the trials, apparently not for safety for other reasons. I felt awful at first, getting used to it now. Misery loves company, eh, Steve? Charlie, I'll get back to the gym ASAP.

Jaye

Hey Jaye I can sympathize. I was kicked off the trail at the end of Phase III so for three years I was on Istradefylline and then not. I spent 9 days in bed sweating that one out.

I found that I tolerated the drug well and after I took it in the am it was my best time of my day.

If the record keeping where I was involved with the trial was any indication of what went on in other studies I'm not surprised. In Phase I we were not told if we were on the actual drug or a placebo. I still don't know. I never met anyone involved in the trial or given any information.

Bonnie

The fatigue wont let me get back in shape..My motor symptoms dont interfere with work, but the fatigue does big time

you have to do it gradually.......
 

thats what I have found. Fatigue is my problem also.

Charlie

Boy, I hear you all on the fatigue issue. While I'm able to power through it most days, there are days when it's all I can do to simply keep my eyes open. I just want to lay down and rest all day long! While there are medicinal approaches to dealing with this issue (Provigil anyyone?), personally I just keep pushing myself via exercise and finding things to keep me moving and busy. Once I stop doing things, that's when trouble sets in!

We're off to Atlanta for the NPF YOPN this week, so looking forward to that. It's always great to see old friends and meet new ones. I really enjoy this event. What I hate is the travel part. I just don't travel well anymore. It's 4 1/2 hours from SoCal to Atlanta and that just wipes me out. Then 2 days after returning from the YOPN, we're off to Oahu for a week. While I can't wait to get into the ocean, again I'm not thrilled with the 5 1/2 hour flight. This will be a big test for my body, two major trips back to back, but I've been working out hard to prepare for this. Wish me luck!

Have a great week everyone and fight the good fight...

lots of exercise... and pain
 

I'm just back from the beach (NC Outer Banks), it was beautiful... best weather I think I've ever seen there. I found that the exercise that I got while there, volleyball (competitive, and in the sand :eek:) and body boarding (with fins), really improved my coordination, speed, and my thought processes. I felt some of the normalcy that has been slowly slipping, return. I don't know how long my legs are going to punish me, though... since last Monday, my hamstrings and calves have been made of wood and my feet are swollen... it has been difficult and painful to use stairs, especially going down (carrying a full cooler... wait, on second thought, why don't you get that, son). Talk about powering through... my beach accomodations were on the third floor of the house, (so was the hot tub, thank my deity). Anyway, I realized that I have to step up my exercise and even try to incorporate some PT, maybe. Anything that can give me increased function, with little cost, will have to become regimen, despite the pain. It's absolutely true for me now... "no pain, no gain". And Chas, you're right, gradually IS probably best...

Todd, good luck, and good job giving e'rybody something to do!

I'm heading into this week too in rotten shape. What gives? First of all that gosh darn fatigue that Steve and Todd mention has turned me completely into a couch potato. I thought by bike riding I could get some exercise and push through it, but that's not the case. I get home from work and instead of practicing the piano, I watch TV and barely get up stairs to do my homework (2 more weeks YAY).

I'm at a point now where I actually feel like I'm going to barf because I get so tired. Add to this now is vertigo. Yup it's back in full force. I had a little bit of it last week, but I blamed it on the heat. I was sitting at my desk eating my lunch, after walking back from the sub shop, and I felt like the whole room was spinning left. I grabbed the desk and put my head down and it passed, and I almost lost my sandwich into the garbage bucket. This happened a few more times, and then on Sunday I could barely move and slept most of the day.

Monday I got up for work and kissed the floor with my right shoulder. I called into work and slept around the clock only to get up and take medication and go back to sleep. On Tuesday (yesterday), I went into work and my boss sent me home because he was afraid I would fall. I drove home on the back roads, but ended up on the highway because I didn't have to move my head. Today I'm home, I called into work saying I felt better, but I walk like a drunk! I have two calls into my neurologist to see what she has to say about this.

Now add to this my medication is not as "good as it used to be". I really was feeling great for about 5 months, and now I'm stiff and my left hand keeps clenching into a fist along with periodic leg movements and twitches.

Anway we'll keep our chins up and keep marching on. It only gets better doesn't it.

John