Think / Able - and Check out My Parkinson's Facebook Page

Think / Able - and Check out My Parkinson's Facebook Page
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Thursday, November 23, 2017

Thanksgiving 2017 - Happy days to one and all!

            As it is Thanksgiving, this is the time for being thankful. In the past, I wrote a huge list of things that I’m thankful for.
            You can view it here.
            This year, I’ve chosen to list 12 of them simply and wish you a beautiful, happy day with family, friends, and thoughts of a good life. No point reading a long article, when I can make it short and sweet. Parkinson's is not on the list because, well, I'm not thankful for it (though I do feel positive about what it's taught me about life). That said, I am thankful for all of you who read my stuff, help me, and help each other. Keep fighting your fight and choose to live life in the happiest way you can.

1.      My cognitive ability. All it takes is having medications mess with this to realize, yeah… this is a really important thing we often take for granted. This also includes my ability to bring out the cognitive ability of others. I still can't express enough gratefulness for my time working with Ashley (who also had a 2nd place on another essay, she just wrote). If not for her, I'd be thinking about what teaching isn't, instead of what it can be.

2.      My number one caregiver, my wife. Much love to you now and always.

3.      Having days like last Saturday, where my wife and I did the Philadelphia museums for the Terracotta Warriors (beyond fantastic), Rodin's 100th, art, history, culture, and togetherness. Best day out in a long time.

4.      People who push their limits and do great things for themselves and others (in 1 example of many, major props to my wife for dropping just under 52lbs on a very strict diet that keeps going). I also really appreciate the visions other people see of life, such as this picture by my friend, Rusty (Whipple Dam). I need to find a place for it on my wall.

5.      My entire family who support and are there for me. I haven't posted this picture, but this is of my cousin Ben, who met Debbie Gibson. As a lover of 80s music, this made him really happy.

6.      Living vicariously through youngens who smile and enjoy life. When I educate and advocate, it’s not to make life better for me. My path is where it is, at the very least. My hope is that these kids get a PD free life full of happiness, memories, and love. This is Lydia and Dylan... 2 of the 22!

7.      My editor MaryAnn, who just finished editing her 1,400th page of my writing. WOW! Much thanks! Here’s to me getting off my butt and finishing draft #3.

8.      My imagination and the free flow of written ideas in my head (and places that allow me to express them).

9.      Beautiful vistas and scenery to visit (this is French Creek with Neil and Pete).

10.  Friends who are there for me emotionally and for fun.

11.  The students who created my cover for my book (Tyler and Caleb).

12.  Having a dedicated and knowledgeable bilingual tutor (Justin) in the lab to work with me (there's another one when I'm not there). Trust me; it makes a difference for many students.

Here's a song that's filled with lots of energy and Icelandic joy (memories of that are a good thing, too!). Sigur Ros - Hoppipolla

Friday, November 17, 2017

To Jesse Jackson... Wishes of Strength and Hope after Your Diagnosis

Words for Jesse Jackson that I left on his Facebook page:

As you can see from my profile picture, I once met you at the Martin Luther King Jr. memorial. You agreed to take a picture with me, and it was an honor to shake your hand for all the causes you stood up for. I, too, am a PD guy, so from one of us to another, I know that you will fight strongly against the effects of this diagnosis. There will be good days and bad days, but you have never been one to stop believing. I know you won't now, either. I wish you and your family well in your journey.

Monday, November 6, 2017

Off the Grid / Front Row Seats

            With Parkinson’s, I tend to think about doing a lot of different things while I’m still able. To accommodate this, my wife and I have been doing the Groupon thing as part of our scan the Internet and find something to do thing. In case you don’t know, there are a lot of good half-priced things there. A lot of things don't tend to be big things or far away things, but they're small and fun date things. I highly recommend it. While not everything cool is there, you'd be surprised what is. Remember, one of the keys in life is choosing to live the best life you can and staying as active as you can.

            One of the things I would like to do that is not in there, for instance, is ride in a hot-air balloon over the waterfalls of Letchworth, which is a beautiful state park in western New York State. A few years ago, my wife and I went there, and it was one of the best weekends of our life. I’d definitely like to go back and float over the gorge and mega waterfalls... even though it's expensive... even though I'm scared of heights!

            Another thing I would like to do is to re-experience reiki. The first time I tried this a few years ago, it didn’t work, but if my masseuse knows how, have at it. Take my stress away! I'm definitely down with back massage.

           Another thing that I wanted to experience was hypnosis, and on Saturday, I attempted this at our local comedy club, which is called Stitches (in Lancaster, Pennsylvania), when Rich Guzzi, hypnotist and comedian, came to town. I volunteered, but my tremors were off the hook, and I couldn’t relax, but I will say that when he talked about how “your left arm feels like a cement block,” it did. Instantly, I could feel my arm yanked down by the the power of suggestion. Other people were suggested heavier, as those of us who didn’t work out were replaced (it's a common thing for people who can't let go and relax). 
           At the end of the show, one previously hypnotized 30-ish woman realized they were making references to things that were done on stage, and she just went pale with those big eyes that say, “Oh crap. I done messed up” (though you can replace that for any of a couple more extreme profanities). Through it all, the show was entertaining, and I didn’t feel left out or scammed (as some people go in there looking to feel). It's definitely a fun night out whether you're hypnotized or not or just watching. 
           While leaving, my wife said that it’s easier to get hypnotized if you’ve done it before or you meditate. I’ve never really gotten that mellow or still without sleeping, but yeah… it was definitely entertaining.
           Afterward, my wife and I headed to the parking garage. It was a good evening together, and it was still early, so the possibilities were endless. Things felt positive, but as we pulled out of the garage, we came to the credit card pay machine. It was like I had never seen it before. I knew everything around me and that made sense, but I couldn’t figure where my ticket and card went, and I just froze like a deer in the headlights. As my wife told me where the ticket and credit card went, I got more anxious and overwhelmed as I froze up, unable to do these simple things. In many ways, I can assume it was similar to freezing gait, like those times when a Parkie walks and just stops, unable to move forward. There are tips for eliminating this, and I’m sure they could work in situations where I don’t recognize unfamiliar things (i.e. things I don’t use / do every day).

Ten Tips to put the Freeze on Freezing!

From the American Parkinson’s Disease Association.

1.      Try another movement – raise an arm, touch your head, point to the ceiling; then re-start
2.      Change direction: if you can’t move forward, try stepping sideways and then go forward
3.      Carry a laser pointer in your pocket; when you freeze – shine the laser in front of your foot and step on the light – this cue can help you re-start.
4.      Visualize an object on the ground in front of you and try to step over it.
5.      Wear a metronome on your belt or carry a small one in your pocket – turn it on and the external beat can help you re-start.
6.      Try humming a song and time your re-start with the beat of the music
7.      Count “1-2-3-go” and then step forward
8.      Weight shift side to side to help initiate taking a step
9.      March in place a few times and then step forward
10.  Don’t fight the freeze by trying harder to step forward – shift your attention from moving the legs to moving the arms – then resume walking forward.

             But for me, the moment was just confusion.

             The best example of extreme anxiety (this situation and the situations I have described are not there at this level, but this is meant to be an example of what people can feel) is Sterling K. Brown who plays Randall on This is Us, which is an amazing show. His feelings are played well by both him and his younger self (Lonnie Chavis). Last week's episode with his mother and wife discussing him while he was in a different room epitomized the feelings of worry that go with the situation and being cared for, especially when he walked in on there discussion. Check it out On Demand. 

            As for me in my situation, I was scared to death and overwhelmed wondering, "What's coming next down this PD trail? If this now, what tomorrow? Is PD going to take my day to day happiness in marriage, too, because that would really suck?"
            In this situation, my wife, my numero uno caregiver in the world, thought I was just ignoring her directions. Sadly, I had to explain it to her and apologize for the butthole that is PD (not me - I can be a jerk, but this time, I wasn't) The truth was that the map in both of our minds (see Laurence Gonzales’s Deep Survival) had officially vanished. We had nowhere in our neuronal connections to refer back to in order to understand the situation at hand. We were in a “new normal,” but that new normal was “off the grid.”

            So the question becomes, “How do we learn what to do instead of just hoping we’re OK?” That’s the great thing about websites like this one. People who experience regularly can explain, but all I have is parts of stage 2 and stage 1. I know dystonia foot, tremors, spasming upper arm, and symptoms you can’t see (lack of smell, hearing, facial mask, etc.). For this, I’m more explain my story than answer your questions other than why my meds didn’t work and the effects I’ve had because of this. It's not that I don't want to help (I do), but I'm too new to provide much, so I'm sharing for the next generation and this one to help / react to me).

            So caregivers and Parkies, what have you learned to do to eliminate these situations from your life?

            The point I make is that caregivers get a front row seat at the show to see someone they love (literally) lose his or her mind(‘s capacity to do what said person did before). As Parkies, we need to get this. The fear of doing things wrong is there for them. The fear of diminished life is there, as are injury, finances, and responsibility. “Till death do us part” should be there (I know it is in my marriage), but here in the Parkinson’s swamp, we are in a very real “sickness and health” place as well. That sucks. Front row seats aren’t the call to win stuff I heard on my radio this morning. In fact, this is worse than being kicked in the head by crowd surfers when you stand too close to the stage. For the good moments, it’s omnipresent and it increases like the feel of exacerbating effects a Parkie (like me) feels / felt when he or she cold turkey stops a medicine that doesn’t work. Oh yeah, that sucks.

            For Parkinson’s sufferers, front row is not like lucking out for $10 row 2 tickets at Wrigley in Chicago, which I bought off the streets in May of 2000 while traveling across America (it was a rainy day game against the Dodgers). It’s seeing all of those bad side effects / symptoms things and more first. Caregivers and others need to get this (if we talk about it openly, it's an easier 2-way street). It’s like staring at a picture of myself and wondering who this guy is (literally not recognizing him – not just the metaphor of change with PD). It’s knowing family feels this stuff a lot. They worry why it happened. Parents blame themselves. Friends worry and feel overprotective. Co-workers worry and wonder, too, as much for caring as for when the person will be unproductive and have to go because he or she isn't good enough for the team. And all the while, people ask questions that are well-intentioned, and we wonder, “How did I get here?” For me, I respect this and try to alleviate it. I only hope people know how much I appreciate what they do for me.

            More than that, front row for all groups is experiencing round 1 up close and knowing there are 14 more to go against Larry Holmes.  This is why I need to educate and advocate my condition, while working with others to create a 2-way street. If I don't, who will?

           But it doesn't have to be if both the Parkie and caregiver can create a new map, which is what I'm doing while learning all of my new side effects and special challenges. The key is finding advice and working through life in the new (ab)normal.
           Mad props and much love to the caregivers and the educators.

Wednesday, November 1, 2017

Thank You for a Year of Reading My Blog (Recent Doctor Appointment / Greatest Hits Collection)!

            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!
            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.  
            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.
            MISTAKEN SYMPTOMS...
            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).
            WRITING ADVICE...

            I think about lots more fun adventures with my wife.
            8TH ANNIVERSARY...
            I think about inspiring more students like Ashley, who also inspired me to keep teaching.
            BEACON CONFERENCE...
            I think about my history in England and the people there, who inspired me.
            IT WAS 21 YEARS AGO...
            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.

            ICELAND 1 (THE GOOD)...
            ICELAND 2 (THE PD STRUGGLES)...
            I think about choosing my now in Pennsylvania.
            I think about my frustrations with the current political climate of the US.
            ANTI-TRUMP RANT...
            I think about the sadness of 9.11 and Vegas (I’m sure I could repeat this regarding the attack yesterday).
            9.11 RETROSPECTIVE...
I think about hiking and learning with every step, as well as the people who reach out to help me.
            HAWK ROCK WINTER HIKE... 
            AIR FORCE MEMORIES...
            185 THINGS I AM THANKFUL FOR...
            EDUCATING OTHERS...

            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!
            NOTHING BUT FLOWERS...
            I think about family and friends, who have been there for me. 


            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!