Jan 2/2014
Yes....it is 2014!!! There are no big developments in my Parkie life as yet, but there are still many things I wish to share about Parkinson's. One of the topics I would like to address is that of, apathy. For some reason this was, and continues to be a hurdle for me. I said "For some reason", but I do know that this is prominent in Parkies because of the loss of Dopamine, and as a result, Serotonin. This is a difficult symptom because it is a daily struggle. So much so, that like other Parkies, I have been referred to a Psychiatrist with a specialization in the field of Parkinson's. Apathy is that feeling of..."I don't care....oh well...whatever..." . And it is real, and it creeps up on you. I have thought myself to be rather social, enjoying friendships, good times, and enjoying life. Even when I had cancer, twice, I always kept my outlook and disposition as positive. But slowly, Parkinson's ate away at my joy, and one day I actually cried and said, "I just want to feel that feeling of being happy again." It honestly wasn't until that moment that I realized I was experiencing some form of depression.
It wasn't really depression. I had dealt with that many years ago when my life turned upside down. No, this was more like a lack of enjoyment. And there was absolutely nothing in my life (other than my diagnosis) that I should feel sad about. Actually, I had many things come together and should be enjoying the new changes. But I didn't. I didn't feel sad, I couldn't feel happy...I was in a kind of limbo. That is when I brought this to my MD (Movement Disorder Specialist) Specialist's attention. He explained that this was rather common in Parkies and went on to explain the details of Dopamine or lack of, on the brain. So, he assured me, I wasn't going crazy, but I was being referred to a Psychiatrist. Oxymoron?? In my mind it was.
The idea of seeing the Psychiatrist was to assist in lessening my feelings of apathy through Behaviour Modification Therapy. Hmmmm....did that include jump starting my brain?!? No. It became one of the few doctor visits that I would look forward to. As he specialized in the area of Parkinson's, it was indeed a relief of sorts to speak freely of how I felt, and not be afraid to upset someone, worry someone, or try to make things sound better than they were. It was my time to just open up. My feelings of apathy, though quite real, could be managed. This doctor gave me the motivation to begin this blog, my website, and forum. It is something that I can feel driven towards, feel good about, and use or work it as I felt I could.
Thank goodness that I have such understanding and patient friends and family. Because of this continuous feeling of apathy, I regret to say, it is a chore....like a heavy weight....when there are changes. My routine exists within the confines of my home. I can shake, drop things, say goofy things, repeat myself, and not feel out of place. But if for example, a friend calls and wants to meet for lunch...my apathy becomes fear. Of what, I'm not sure. I dread having to get ready, I dread leaving my home...I dread the unknown. Now, this is strange to those who have known me most of my life. Strange to myself as well. I use to love to socialize, get out for the day, shop, dance, party.....but this old me becomes hard to find. My wonderful caregiver and sons continue to encourage me to go out and do things I would most enjoy. So, I do....but always with hesitation. To avoid this, it has become almost necessary to invite people to my house for visits. And as my days start with pain, and weakness, until my meds kick in....I usually don't plan anything until after lunch.
So there it is....truth be told. I have become somewhat of a miser. It has become better. I do venture out more and more...but no one realizes how much psychological preparation it will cause me. I can't say it is all relative to my psychological self...my physical being has just as great an impact. My tremors are almost non-existent visually when I am home. If I get out of routine, the tremor reappears as if it has its own life. This makes eating out, particularly difficult. Corn, potatoes, and ice cream have been seen flying by quite unexpectedly. If it is not tremoring, my hand is still useless. I have little to no pincer grasp. This is not good when handling china or glass. My legs have been known to weaken, and due to my vanity, have put off using a cane. I also find it difficult to keep my med regime in tact if we are out and about.
I do not seek sympathy sharing these things, rather understanding. As stated in a previous entry, my world has become, s l o w. Being 49 years of age certainly does not slow down your average adult. And back to the vanity thing....when my 80 year old father can outlast me, it feels pretty bad.
Well, this was probably not one of my most entertaining entry to my blog, but it is one of my most honest. Apathy sucks. But, with my friends and family understanding the whys and hows of Parkinson's, I think I can still remain, UnSHAKEable.
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Jan. 3/2014
Vanity. It can hit you over the head and knock you down when you least expect it. Now, I have not considered myself to be vane. I am usually, what you see is what you get...like it or leave it. I have always had a strong sense of who I was, and empathy was one of my stronger suits. But when you become ill with a physical ailment, vanity does rear its ugly head. Yes, vanity is ugly.
Being diagnosed in my forties with a disease known generally as one of the aged, makes you think twice about the perception that others have of you. I know this is not me. But, sadly...it is becoming me.
The vanity thing raises my anxieties and with that, my tremors can be heightened. I want to give an example of this experience, one that I encountered at Christmas. You see, church in general, and at Christmas specifically, has always been my comfort, a time to open my heart through the Word, prayer...and yes, those beautiful songs of praise. We arrived early on Christmas Eve. The church was so beautiful and peaceful. We took a seat at the end of a pew like we usually do. As the time wound down to the start of mass, the church became bustling and busting, to the brim. I started to see familiar faces. People and friends that I hadn't seen in ages. The aisles, and pews were filling up to a point of standing room only. Suddenly I became quite anxious. In my head..."what will people think if I begin to tremor....will my meds wear off before we are done....ut oh.....I am tremoring....hide it...keep your hand down." . The hymns and Christmas carols began and as I started to sing, I realized, in my head again,....."my voice is weak....my hand is still tremoring beneath the hymn book.....I'll lip sync....ut oh....I'll have to get up for communion. " . And so it went.
Communion did come. I was a shaky mess, and I swear, the aisles suddenly seemed miles long. And, correct me if I'm wrong, Father must have added a passing lane. I felt like a million eyes were on me, a shaky mess, an awkward limp, in slow motion, trying to find a way to get back to my seat through the throngs of glaring parishioners.
When mass was over and we returned home, it took a good half hour to settle my shaky self. Vanity. Plain and simple. Why, on this beautiful, peaceful evening, would I personally, be the centre of everyone's gaze at church. Why indeed. How absolutely vane it was of me to think that through the throngs of all those people, that me, not God, would be the focus of Christmas Eve mass.
You see, my dad has moved in with us. He is 80 years old, and looks 60. He remarks that I sleep too long, or that I need to get more active. Let me note here that he has survived 3 strokes and 2 triple and 1 quadruple bi-pass surgeries, and one would never, ever know it. Here I am, in my 40's, hunched and shaking , and being lapped by senior citizens walking down the church aisle. Oh yeah, definitely vanity had reared its head. There are times when I am unsteady, and would feel much more secure with a cane, but if my 80 year old father was not having it....how would I look at 40, walking beside him?
So yes, a part of me has become vane. But heck....if you had an 80 year old father that is still young in looks and spirit, I think perhaps you would too. Young Onset Parkinson's keeps trying to knock me down every once in awhile. I just hope that I also inherited some of the gene pool from my 80 year old dad. When people tell him he looks great, he always responds, " Well, there was never anything wrong with my looks", with a twinkle in his eye and a hop in his step. Ut oh....he is vane?
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