A Day in my Life

I had planned to make this an ongoing daily post to let people see what life with PD, particularly Young Onset PD; and the hourly changes in what we call 'clinical states'.

Allow me to define some technical terms:

• on: meds are working at the best I can expect; best of my new normal.
• off: meds not helping. There are many clinical states that rotate to make my life more interesting. (YOPD is a fascinating topic to study, I just wish I didn't have to learn about it this up close and personal).
• Dystonia: horrifically painful muscle cramps. Think charley horse pain, multiply it tenfold, then imagine it taking over your whole body and lasting for a few hours.
• Dyskinesia:  involuntary swaying, dancing (kind of like a potty dance). This state is a side effect of medication.

Today:

7am - Woke up to my pill alarm. Took meds (11 pills).  Thursday mornings I don't have any scheduled help, so I had to get my own breakfast. 

10am - Good morning so far. I often have more dystonia when I am home alone, probably because I know it is up to me to feed the critters (and myself) and let the dog in and out.
9pm: Forgot about updates all day. Too much stuff happening in Canada, glued to the CBC news all day. No extreme PD symptoms all day. 

How do I feel?

I was at the Movement Disorder Clinic in Winnipeg today to see my DBS (Deep Brain Stimulator) technician, and got a little lecture about not making the most of the technology that they put in my brain. Her job is to adjust the settings and the parameters that I have access to with my remote. My job is to experiment within those parameters, and then report back the results.


I do keep a medical journal, and you would think that since I spend most of my waking hours at this computer, that I would be more disciplined with updating my status a few times a day, but if you thought that you would be wrong.


How do I feel?  Is the medication helping? Is the DBS helping? I know that I am the only one with the answers to those questions, so why are they so hard for me to answer? 


It seems like I have been living with these symptoms for so long that they are normal to be. Not that they are not painful and debilitating, but I have just become accustomed to them. Like the saying goes: "You can get used to wearing a twenty pound sack on your back, but it still weighs twenty pounds." That reminds me of my purse...