[Jim091866]

This weekend was rough for me. I decided to see if I can take up golf again. So my girlfriend and I went to the driving range. You see that's not such a big deal. Unless you have PD and decide that this would be something you'd like to try at about 1 in the afternoon. In September. In Central Florida. So far this little adventure has cost me 50 bucks for clubs and about 8 bucks for the two buckets of balls. I think I hit seven balls when I wrenched my back and that was the day. We gave the remaining balls to some guys who were there practicing. We went home where I promptly collapsed and slept for about 3 hours. I don't call it napping 'cause if it ain't for at least 3 or 4 hours it's not worth it!

Let me pause for a minute here to tell you that I spent Tuesday night to Thursday of this past week in the hospital because of severe dystonia to where they gave me valium to loosen me up..please refer to the above events where I wrenched my back trying to do something strenuous so soon after suffering the stiffness and rigidity. I didn't say I was the sharpest crayon in the box!

In light of this episode the docs thought it would be a good idea if I further spread out my C/L doses from 1.5 every hour and a half to 2 every 3 hours. The guy tells me to not change the dosing and to give it a week to see how I feel. Now the math to me just doesn't add up. Prior to this recommendation in 3 hours time I would have taken 4.5 pills. Now you want me to cut that in half? I'm in here with dystonia and feeling like I'm locked up with spasms and can't get any "On" time! Hello, are ya feelin me here!

Here we go Monday morning. I'm struggling with the off periods, then some dyskinesia. That afternoon I did some school work for a distance learning class that I am taking. I did not even feel like dinner, went to bed (refer to above for nap vs sleeping). That evening I'm still feeling off, feeling overwhelmed, haven't been out of my powerchair for much of the day-too stiff to walk around. Feeling pretty depressed and discouraged. I had plans to go to Disney World with my girlfriend who knows a marketing exec at Disney so we're going to a sort of VIP party that night and breakfast the next morning at the Contemporary Hotel. I'm a wreck, depressed and feeling down about this junk with the meds., the off's, the fact that I am going to feel like an anchor at this event. The fact that I am feeling why is this wonderful woman who I've known for only five months now tying herself down with me. If I'm not doing something I want to be in bed because I am so physically exhausted from the struggling with my body. Through tears I send her an email that I'm not going to the event with her. Later that night we talk and she assures me that she is not going anywhere. She asks if this is normal for me to feel this exhausted to which I have to say no it's not. It is mostly due to the longer spread of medication. We spend a bit more time on the phone and I am feeling better. I have always felt better after a ride on the spin bike, so I do what I know works for me. 32 minutes, 245 calories and 10.1 miles later here we are.

Here is the storal of the mory:
1. First, many of these earth shattering crises are temporary.
2. With our disease you must establish a regimen for the day and for meds that works for you and stick to it.
3. Read the above again. Thinking back, I broke a few things in my regimen and these most surely contributed to the hospital stay.
4. Find a stress release for yourself. Maybe a place to sit for a while in solitude. I take my black Labrador, Duke to a park up the street from my house, I get on the bike and ride for a while. The point is don't let yourself stew in this vat of poison from this disease.

Hopefully, you have someone. Albeit a spouse, friend or other that you can call and talk to and get yourself out of this hole that we sometimes fall into. It may seem trite, my short episode but there have been big ones. Before I met the love of my life, whom I know is nothing short of an answer to prayer, my wife and kids left me and moved out of state. I was devastated. These pits we come across are dark and vast. They have many contributing factors that I can only fathom from my own experience. I am so thankful to God for the blessings he has bestowed on me. If I were to wallow in this cess pool I would certainly not be showing my gratitude to Him as well as others in my life that have made this a much easier battle.

PS. We're still on for the Disney event and breakfast! I may be disabled but I'm not retarded!