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.