Life as we know it....is over. For lots of reasons. Don't get me wrong, life isn't over , in some ways it's just getting started ..again :-)
But the life I thought I might have is certainly in an "altered state" so to speak. Hence, the quote at the top of my blog , Life is what happens when we make other plans.
This week it seems really clear to me that I am changing quite a bit in many subtle ways. PD can be such a cunning little disease that the changes are sometimes not so noticeable to the person with the disease. Or, maybe we are so preoccupied with it that we neglect to think of how some things may affect those we love.
My Mary and I were discussing two areas recently that she has had issues with and you can read about her struggles on her blog. The two areas are:
Lack of emotion or Apathy and voice changes. I know I usually tell little stories on my blog but this is kind of important....it potentially affects every relationship in my entire life.
My doctor forewarned us about facial masking and apathy but it kind of crept in without me noticing. The one person closest to me is so good about recognizing these things , I am thankful for her insights even when it pains me to admit I missed something along the way. Now that she has pointed out how it affects her I can look back and see how it may be affecting other things and other people.
For instance, I have had several customers who know me well tell me I don't look good or ask me what's wrong with me. My emotionless face and speech is showing itself in every part of my life. What this points out to me is that in order to take care of those closest to me I need to be sure I use words to express my feelings and if I can, try to force some form of emotion out of my dead pan face.
It also gives me some type of explanation for those times when someone I don't know well asks if I am all right.
I can't help but wonder how this may eventually affect my career. After all, most people know nearly squat about PD except that it makes you shake. People in general don't know anything at all about facial masking, apathy, speech changes, vision changes, rigid or slow movements etc.
To be honest , it has upset me a little. I feel bad that I missed the signs on how it was progressing. I feel worse still because I know how much worse it can and likely will get and I hate feeling like I am letting people down who love me. I have heard my sister in law say she misses the man she married ( my brother has PD+MSA)and even though it is obvious looking at him what she means, I really didn't expect to not be ME so soon I guess.
Even though it's hard to show emotions or passion with this disease it is all still there trying to get out. So, the challenge for me is to make sure the people in my life know how I feel aven when my voice and body language try to sabotage my efforts.
Thanks for the heads up my honey !
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2 comments:
Keith (Shaky's World), Thanks for visiting my site and commenting. I was drawn to visit yours again and read the piece you had written on a very similar topic. The words jumped off the page as you described the feelings you have regarding the effects of apathy and a lack of emotional expression, particularly on your face. The masked face is a symptom that others find very difficult to understand.
Thank you for stating in this format what is so real to me that it moves me deeply to see someone else put it in words. Feeling we are not alone is a very big part of dealing with these Parkinsonian illnesses that your brother, you and I all face. You are giving something to others in the midst of your suffering that is priceless. Take care and stay in touch, Dan
So, I haven't been on to read much lately, as it looks like you haven't blogged much either, so I guess we're even. lol Anyway, I remember just 2 days ago on Sunday, when I was on the way to Richmond, I was talking to you on the phone. I said something about not being able to hear you, and either I didn't have a good signal, or you weren't talking very loud. You said you probably weren't talking loud enough. I heard concern/irritation/something in your voice, and then you said, I'll just call you back later. It bothered me. I felt like I had pissed you off or something, yet I couldn't figure out why. I thought maybe I had been short with you (and if I was, I apologize, I wasn't trying to be). I talked to someone else soon after that, and couldn't hear them that well either. It was then that I realized my phone volume was on 3 out of 5. It's normally on 5. I guess I had pushed the side buttons at some point and not realized it. Anyway, the whole point of this, is I hadn't really noticed the voice volume thing until then, and then I found out that it was probably my phone, and not you anyway. I just thought it was coincidental that I read your blog 2 days after that happened... Love ya.
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