Oh..that's right...

My mind works against me sometimes, especially with this "designer disease" that plagues my very core. Yep...along with all of the lovely physical afflictions and the cognitive crap that goes on once in a while something triggers a depression as deep rooted as the day is long, and I fight with apathy, sadness, feelings of unworthiness, and additional fatigue.
Last week, my youngest step daughter gave birth to a beautiful baby boy, he is gorgeous, as all of her sister's babies have been. I felt such joy and a certain sweetness to the event, even as far removed from it as we were. When the phone rang at 5:15am July 22 I KNEW he'd been born, and when I heard Mandi's voice on the phone, I started tearing up. Mandi sounded tired but happy, and incredulous that she herself felt a little shaky. I told her, well you just became an auntie! That's your little sister there...it's a pretty huge thing. I kept thinking to myself...wow, that's 4 grandchildren! And by Christmas this year, we'll have 5!
Later that morning, as I was working alone, I started feeling very ill and had to go home. The rest of the day and for two days after I fought a bad headache, stomache ache and malaise.
The other thing I fought, over which I had no control, was an almost crippling depression that set in so rapidly that same night I went home early, I hardly moved from the couch, kept my nose buried in a book and answered my husband in the minimal amt of words needed...so much so, he started acting like he was walking on eggshells around me. Due to the apathetic rendering of this depression, I really didn't care. It's a horrible thing to feel no control over one's mindset, to want to reach out and care but are literally unable to. I wasn't being mean or nasty or anything, though probably seemed that way because I am usually very loving and THERE.
I finally realized what brought it on....on Monday (day before Hunter was born) I spoke w/a woman a few years older than me who is in her 9th year of young onset parkinsons. She is contemplating a surgery called DBS-deep brain stimulation. Right now, she's taking 3 different medications. I asked her how she was doing about 4 years ago (where I am right now) and she said, Not too badly. She could move okay but was starting to get more stiff at that time, was only on one medication then..which is where I am. Now, she has hardly any facial expression, has a very short gait, bad balance and a myriad of other symptoms common with PD patients. It threw me into a tailspin I had no control over and took over my life for the remainder of the week.
This has happened to me now about a dozen times over the last 4 years, and my doctor has deemed it one of my symptoms, which is very "normal" for a patient with PD. By Monday I was pretty much back to normal (in MY book), not much depression, but cannot forget.
I have been turning over in my mind starting a group for patient suffering from parkinsons disease in Page. I know at least 4 other people not much older than I who have it. It can be done. People who have an illness not very common can benefit from talking to one another. The only thing I'd be wary of is those patients who are farther along having more brain issues, which could make them lash out.
I would also, on a personal note, would be a little wary of them looking at ME and saying WHAT? you don't have PD, you don't look like you do, you arent shaking, look, you aren't using a cane or drooling or shuffling, you have some facial expression, yadda yadda yadda....to which I would probably reply Walk a mile and a week in my shoes, buddy you'll be WISHIING you were at the stage I am in right now...it ain't a cake walk for me either. Though I do feel like a fraud sometimes because my symptoms are not very external. Nobody sees my internal tremor or feels my pain from rigidity. Nobody can tell I really concentrate on walking carefully so as not to drag my right foot or trip or lurch from side to side like a drunk (though sometimes I cannot help it). Nobody sees any of the other things, the cognitive issues, the depression, the bodily functions...any of it. I can still work full time, give or take a couple hours...I can still walk a couple miles in the morning (but ask me to put on my mascara without missing my eye a few times), I can still cook (but watch me drop the vegetable, the knife, the pot....), I can still have a cocktail or two a week (but choke on water and food), and can still read a good book (but cannot find words to make a simple sentence), I still look good (but you should have seen my tying my shoes and buttoning my shirt, it was a laugh and took forever it seems)...there are so many changes and the progression while slow is apparent. I am very good at hiding things most of the time.
Gary doesn't talk to me about it...I think he feels because he cannot fix it he's helpless. What he doesn't realize is it helps to be able to talk to him about it...but he needs to be knowledgable. And I don't know if he wants to be.
I don't need pity or empathy...but understanding and knowledge of the illness.