One
year ago today, the door slammed shut. It’s not that it wasn’t shut before,
because I knew all about my “90% possibility” of Parkinson's on September 27, 2016,
when the initial diagnosis hit. I’m not going to rehash that today. Instead, I’m
going to play my greatest hits to go with where I am today a year later. In case you missed any of my posts, I've organized my better posts (not all of them) so that you can read things more applicable to you (if you're a Parkie, hiker, writer, whatever...).
ON THE NOTE OF NEW THINGS...
Friday,
I went to my neurologist to get checked out after my symptoms killed medicine #2
(to go with the end of medicine 1). I have noticed a lot of exacerbated symptoms since then with tremors and dystonia. Both affect my presence more than life, but my dystonia sees my hiking and walking affected with my gait.
AMANTADINE (med 1)…
ARTANE (med 2)…
Now,
I’m on Requip’s generic form Ropinirole. I’m not sure how it will work since I’m
only 2 days in as I titrate (build up another small dose) 2mg more a week for 4
weeks until I get to 8mg. I want to believe. I am optimistic, but now I just wait 3+ weeks for it to settle in well or develop side effects. Doc wants to believe. That's why we're going slowly. The next failure
equals Carbadopa / Levodopa as my med, but as he says, “I’m planning for 80, not now. That's why we're choosing this route.”
Thus, we go slow and hopeful for the time being.
Normally, my wife Heather (care giver #1) goes with, but today, she took it as a phone meeting. Caregivers 3-5 (parents and sister) received their "meetings" later. Without their support, this would be a tough journey, so let me give MAD PROPS AND LOVE TO ALL OF THEM!
Normally, my wife Heather (care giver #1) goes with, but today, she took it as a phone meeting. Caregivers 3-5 (parents and sister) received their "meetings" later. Without their support, this would be a tough journey, so let me give MAD PROPS AND LOVE TO ALL OF THEM!
That now officially said, back to the doctor's appointment.
I asked about other options like hemp oil, but his take was “not enough bank for your buck.” His example patient was paying $100 for 3 weeks of treatment, and he felt, as I do, that pharmaceutical was better. I know there are people sold on that treatment, but for as much as I don’t like my tremors, I’m just not sold on this way to attack a symptom (and not find a cure). That said, maybe someday, I will change my mind, but I’ve seen the video in question, and I’ve heard friends’ sales pitches. I've also heard about how nicotine patches could help, but his feeling was that nicotine just makes it easier to absorb my meds. Thus, I’m Ropinirole now.
I asked about other options like hemp oil, but his take was “not enough bank for your buck.” His example patient was paying $100 for 3 weeks of treatment, and he felt, as I do, that pharmaceutical was better. I know there are people sold on that treatment, but for as much as I don’t like my tremors, I’m just not sold on this way to attack a symptom (and not find a cure). That said, maybe someday, I will change my mind, but I’ve seen the video in question, and I’ve heard friends’ sales pitches. I've also heard about how nicotine patches could help, but his feeling was that nicotine just makes it easier to absorb my meds. Thus, I’m Ropinirole now.
Additionally,
we talked about things like changes in driving and job, as well as future disability status. None of
the above changing are a concern now (YEAH!). Getting more exercise and doing
more for me is, especially to help with the anxiety, but yeah… “small moves, Ellie.”
That said, seeing beautiful images at World's End State Park are calling me to there.
Additionally,
I think about cold weather camping at the Throne Room in 2 weeks with my friend Neil. I think about more
winter waterfalls memories from last year.
HEBERLY RUN...
I also think about avoiding another dose of Lyme disease, which I battled right after
my Parkinson’s diagnosis. Nothing like 2 for the price of 1! Thank God for good insurance. BTW - my doc informed me that he had multiple other correlated, but NOT CAUSING (I.E. one thing is with, but did not cause the other) Lyme diagnoses to go with the early onset Parkinson's since mine. See below for how one imitates, but not duplicates the other (resting vs. essential tremors, for one). That said, he's clear what I have.
I
think about finishing my supernatural book to work on my Parkinson’s book. I'm looking forward to expressing heroes that motivated me to get through (I AM NOT writing this to portray myself as a hero; rather, I am someone who is choosing to persevere).
I
think about lots more fun adventures with my wife.
I
think about inspiring more students like Ashley, who also inspired me to keep
teaching.
I
think about my history in England and the people there, who inspired me.
I
think about the goods and bads of vacation in Iceland, as well as dreaming
about getting back over to the North Atlantic to see them, Scotland, and the
Faroes.
I
think about choosing my now in Pennsylvania.
I
think about my frustrations with the current political climate of the US.
I
think about the sadness of 9.11 and Vegas (I’m sure I could repeat this regarding the
attack yesterday).
VEGAS...
I think about hiking and
learning with every step, as well as the people who reach out to help me.
I
think about hyperhidrosis (excessive sweating) and how I could use that to
sweat off my middle.
STINKY / SWEATY....
I
think about flowers with my wife!
I
think about family and friends, who have been there for me.
I SEND A SPECIAL SHOUT OUT OF MAD PROPS TO MY EDITOR MARYANN! You're awesome!
And yes, even though today
is rainy, and even though the world around me is often uncertain, depressing, and
a waiting game, I do believe the good things are to come.
There’s
really no other choice. Thank you for a year of reading my stuff. You make this
endeavor more than I ever hoped it would be! I look forward to all this next year has to offer me.
So.... let there be songs and memories and fall festivities to fill the air!
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