Friday, February 28, 2014

Deja Vu?

"The Doctor will want to see you in your OFF state, so don't take ANY Parkinson's Disease medications on the day of your appointment." Those words kept bouncing around in my head. Why? The neurosurgeon I was going to see, about DBS surgery, was over 200 miles away and I had no idea what condition I would be in when I got there. So, a few days prior to my appointment, I decided to experiment.

I normally wake up around 5 am and take my first two Parkie pills of the day, then I take one at 9 am, another one at Noon, etc., until I've taken the last of the nine pills and go to bed around 11 pm.

I'm awake at 4:40 am and since it's a few days before my doctors appointment, I decide to try a day OFF of medication. I take a deep breath and skip my first two Parkie pills. 

6 am: I feel okay, so I go walking with my neighbor. About half-way through our walk, my left foot cramps, badly, but I manage to hobble home.

7 am: I am still okay, but my stomach is growling , gurgling and doing flip-flops. This is not normal, so I eat breakfast (two hours earlier than usual).

8 am: Still okay, left foot cramping, but my stomach is not happy, so I eat some toast. 

9 am: I am still able to move, albeit slower. My left foot continues to cramp. My stomach is still growling, so I try some chocolate chip cookies. 

10 am: I am very jittery and moving much slower, but I am still able to walk. I'm hungry and eat more cookies. This OFF thing will make me fat if I'm not careful! 

11 am: I can still move. Good! This is when my appointment time will be, in a few days, and I'm not stiff as a board or shaking like the paint mixer at the home improvement store.

12 pm: I can still move, but I am very rigid. My left foot continues to cramp. My stomach is still gurgling and growling.  The tremors have started and I manage to eat lunch, but more peas end up on the floor than in my mouth. 

1 pm: My entire body feels tense, like all my muscles are contracted. The tremors have worsened and my left foot keeps cramping, but I can still walk. I eat a couple more chocolate chip cookies, but it's not helping. 

2 pm: Since I was told that I would be able to take my medications as soon as the doctor was done with me, I go ahead and stop the experiment. I take my first two Parkie pills and eat a few more cookies. Relief should come soon.

3 pm: No relief, I still feel the same, maybe slightly worse. I know this feeling, it's deja vu, this is how I felt in the days before I got diagnosed. I try to lie down, but cannot get comfortable, so I get up and eat a few more cookies. 

4 pm: Some relief, finally. I celebrate with a few more cookies.

6 pm: I am back to my normal drug routine. I still feel a bit off; headache, stiff neck, groggy and my stomach is still wonky.

11 pm: I am exhausted but finally feeling more normal.

Conclusion: I should be able to make the drive to the doctor off meds, but it's going to be a rough day. 

Note to self: pack lots of things to snack on and a bunch of cookies, lots of cookies. 


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  3. This is fantastic! I just scheduled my off-on appointment. I am not looking forward to it at all. When I awaken at 5 am, my entire body hurts, I can’t move very well etc. so I take my Parkie pills and then wait at least an hour before I even try to get out of bed. ThankfullyI live in a large metro area so the drive to my visit is 10 minutes!