Parkinson's: Guest Post by Paul LaPrise
As Life Proceeds
A Guest Post
By Paul LaPrise
The air is filled with talk of life-changing battles to be fought, and wars to be run, and it is ironic that it is about philosophical and life issues. Good things to battle for, However, Parkinson’s folks know from battles. We have a life experience of fighting battles. We fight battles sleeping, battles with dreams, with balance, with voice, with memory loss, with smell, with walking, with anger issues, and we fight battles to keep from getting smaller. We are professional battlers.
Then, to add insult to injury, we have the ancillary demons. The ones we had in life and the ones acquired with age, though none are supposedly caused by Parkinson’s (my neurologist says) they often seem to be exacerbated by it Arthritis, Blood Pressure, Asthma, spinal issues, Hip issues, Knee issues. and COPD are pretty good examples. This level includes multiple types of residual pain.
If this were not enough we are also subject to the long, slow, unstoppable degradation of our physical and mental abilities, noticeable daily, and aggravating as hell. I have a friend who calls Parkinson’s “The death by a thousand cuts.” I call mine “The Creep,” referring to the inevitable creep downward that happens to our bodies and minds.
In addition now, I hear much discussion about being on and off days or times. I have a Parkinson’s Colleague, who rails against what he calls his “off days” or “Off times”, He knows much of it is his meds as he has difficulty maintaining his dopamine levels. One of my older female friend’s believes it is a little like Menopause. Another says it is like “Driving on Ice,’ and yet another calls it “The Skigglies, and, ironically, I think I understand that one the best.
For fear of being left behind, I must have acquired moments where I am not quite there. Not fully in regular time and place. I can’t call it “Off times “ as mine are not dopamine reactions. I have a kind of spasm where I flush, and sweat a little, sometimes feel pressure on different body parts, and I sometimes have some movable tingles. Mostly short phases, but some longish moments too. My Neurologist is puzzled but termed it “Your special type of a kind of irregular Off Time.” Yikes!!
We all get these “little Gifts” and they change in space and time as our relationship with the disease progresses. Living with Parkinson’s is a constant adventure, and not often positive. And I am sure as the Sun that I will hear more about this from Mr. Parkinson. And I will give him a name by leveraging the joy of poetry and bring a better shine to a questionable moment.
Thanks for sharing your journey with Parkinson's. So clearly expressed. Your courage shows. It's supportive so I don't dwell in fearful anticipation. take care, Neil Silvert
ReplyDeleteLove this Paul especially the poem.
ReplyDeleteI enjoyed your post. Thanks for sharing. As I finished reading and reflecting on your words, your closing statement and initials (As Life Proceeds PTL) had a double meaning for me. I use PTL as short for "Praise the Lord." Sometimes I forget to do that amidst the PD symptoms. Thanks for the reminder! :)
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