Parkinson's Day with My Doctor and Health Union

Yesterday was Parkinson’s day for me. Well, every day is Parkinson’s Day, and while this is Parkinson’s Month, an entire month where I get feted, but not given presents, ice cream cake, or ceremonial ear pulls, this was a different kind of Parkinson’s day since it began with going to the doctor’s office for a 10AM 4-month checkup.

My doctor is a good guy. He gets it, and I’ve been seeing him since September 27, 2016, which was the day that got this whole ball of neurological wax going. The point of going is to find out where I am on the UPDRS (Universal Parkinson’s Diagnostic Rating Scale). This allows the doc to adjust medications and other treatments.

At my worst, I was mid-30s (just a Parkie baby, though experienced with enough symptoms to know Parkinson's sucks). At my best, I didn’t have Parkinson’s, which was up until 2011, though it seemed to always be lurking beneath the surface, ready to explode long before the first tremors and urinary changes happened (always feeling the need to go and not having a “strong” stream).

Now, now I have Parkinson's and it's the new normal.

The last time I went to the doctor's office, it was the beginning of winter. I was at a 16. Wednesday, I was at a 20. After the winter, the doctor felt this was good. I had more of a tremor in my right hand than left hand, which was odd since I began on the left (left hand > left foot > through the head > right hand > right foot). Shaking is just what Parkinson’s does. I guess you could say, “I shake; therefore, I am Parkinson's.”

I guess that makes my wife my Princess Leia!

I’ve reached a point where, though I can still use utensils and shave, my hands pretty much shake constantly. I let them. I can stop my tremors by tightening up my arms, but since my arms from fingertips to fingertips, across the shoulder, is in permanent action figure pose of rigidity, I choose to leave my body relaxed while I can.

The biggest happiness for my doctor was being this far into the game without levodopa. Granted, I have a super spider web pattern on my legs (livedo reticularis - that's my catwalk friendly legs) from the Amantadine (a “harmless,” but “U-G-L-Y” side effect of said medication), but I’ll wear that with the pride of a lack of humility (or being too old to care about what people think if it keeps me going).

From there, I drove to Philadelphia to meet the good folks at Health Union, who were interviewing me for a podcast. A few weeks ago, I had been suggested as a candidate, and I immediately jumped at the chance. I had never met them, so I was super jazzed. It was a moment where my words of educating and advocating were going to be given a 30-minute platform to speak to people, so why not?!

HEALTH UNION'S SITE - MANY GREAT CAUSES

PARKINSONSDISEASE.NET

Upon arrival, I met Emily Downward (pictured at the top right), who is handling the project of interviewing many of their advocates, who write and speak out on behalf of 22 different conditions. The office is on Chestnut Street (smack dab in the middle of Center City and surrounded by banners of Phillies players), and the area is bustling with traffic, both foot and driven. 

The office, too, is a hive of energy. Multiple floors house computer cubes, offices, and sofa areas, where a youthful staff write and post content, create art, manage a website, and meet to improve said Internet communications and causes. I’m not sure I knew what to think that it was, but let’s just say that running a website is kind of a big deal, and it's definitely staffed for such.

Emily escorted me to a room, and we discussed life with Parkinson’s, which should be out in June. I’ll just leave you in suspense to the details, but I’m excited about it. How can I not be? Emily runs a great interview, and she’s a great editor, so I’m sure she’ll make sense of my rambling flows. I’m sure she’ll take out the huge lost train of thought in the middle of one question, too, but alas… we all have our moments.

For those who aren’t aware, Parkinson’s train of thought takes your normal train of thought and switches it up kind of like shaking the brain and leaving the person in a pause, now and again. That’s why my doctor always asks me about my memory, which is generally pretty good, I think, though in long running trains of dialogue, it can get tripped up sometimes. Essentially, it’s like the London Underground, where there are 17 lines going at once, so it's inevitable something is going to go amiss.

These lines run all over the city. As with London’s underground. I have the Central Line, which is my main focus. I also have the Northern Line, which is my “Squirrel!” line. It can get diverted up or down by just about anything. I’ve got the music line, which is equivalent to the Piccadilly Line. I've got the Heather Line (AKA the Jubilee Line) and the family line. I’ve got 2 lines of random information that I’d like to know at any single time as well, not to mention the movie and literary quotes line and the random Jeopardy style facts line. I have 2 lines of random memories (good and bad) coming in at one time as well. They don’t all run continuously, but they’re there in much the same way as my places I have to go to line. Then, there’s the line of things that I should be noting down. There’s the voice of reason lines which belong to family, work, and society, and finally, there is the Circle Line, which is a centrally located line that runs around my brain and seems to go nowhere good since it’s my impetus to do something stupid line. Generally, I can avoid it by taking another line, but it’s there waiting just in case I choose to use it.

And yes, it does get some travel.

Adding Parkinson’s to the mix means that sometimes, someone is asleep on the train tracks, so we have to go a different way. Other times, we have work crews in progress since things are being done to make a section better. Sometimes, there’s nobody there to open up a necessary track. Finally, sometimes there’s just stuff getting at my brain, which makes it temporarily unavailable due to actions beyond its control. When things happen, as Parkinson's causes them to, the thoughts inside my head turn to confusion, irritation, anxiety, or simply being rerouted through an unlit tunnel. That’s what it feels like when you can’t get back to point C or point A from where you are around point B.

Let’s just say Emily is good at being patient while rerouting the tracks.

After the interview, I got to meet Kate Leonard (pictured left) and talk about Health Union, Parkinson's, writing, and her newborn son. It was great to meet her, too, and see some of the people who  have brought me on to make the PD DOT NET stuff happen.

We have quite a talented team of advocates that you should check out. They come from all different backgrounds. Many are younger, which for the Young / Early Onset PD crowd is an important thing (since we're rarer), though they write for everyone based on their experiences.

That said, I encourage you to check them out.

I know I'm looking forward to going to Connexion to meet up with them in October (21+22) to experience the power of group advocacy!

Thanks for continuing to support my writing. If you like this, please subscribe to my blog or follow me at my Parkinson's Facebook page  Please feel free to share, too.

Have a great weekend!

PART 1: Disabled vs. Disability vs. Differently Abled vs. (add your name here)

Part 2 of this is HERE.

Earlier this year, my wife and I went to Yosemite. Since I have a National Parks Pass for people with disabilities (THEY'RE FREE IF YOU KNOW ANYONE WITH A PERMANENT DISABILITY - NOT JUST A BROKEN LEG FOR THE TIME BEING), they gave me a tag for my car. This was so we could park in the designated handicap spots.

ALL OF OUR YOSEMITE PICTURES ARE HERE

In my article for Health Union (see here for many other conditions and stories of those who live through them - they're much more than just Parkinson's), I wrote:

Sure, I hike with a limp, but I can walk. Now, I had access to special parking spots. Does this mean I’m at a new level? Does Parkinson’s have me (like the pod people in Invasion of the Body Snatchers)? As a person who found his health condition at the mid-life mark, I now face this confrontation.

Let’s just say the access pass wasn’t the bonanza of front row parking that some people might think it is. Instead, I had a mental hurdle to cross. The placard might as well have said, “You’re less Dan now. Ready for the confidence shake?”

As my wife and I walked through the lot, I wondered if people were looking for a visual disability. After all, most of mine are invisible, save the tremors and the rigidity. I thought about how people judge active people with disabilities they can’t see.

NOTE - I used the permit once, and never used it again. As stated by a commenter, it's something to forgo since I could walk, AND it's something I don't need, which is why my car doesn't have a disability plate.

You can read the WHOLE ARTICLE if you choose, but the point is

WHAT AM I IN THE EYES OF MEDICAL SCIENCE, THE LAW, AND MY OWN ABILITIES? WHAT AM I IN THE EYES OF MY NEIGHBORS AND FELLOW PEOPLE? WHAT AM I IN THE EYES OF ME?

The CDC defines disability HERE.

These include conditions related to impairment, activity limitation, and participation restriction.

That seems pretty straight forward, but what if you can't see my disability and I'm active or at least taking pictures of me on the day when I told my nap I wasn't going to take it? Granted, I have a tire around the middle, but what if you think that because I hike in rocky places (when you wouldn't), I don't have disability "issues" and "concerns?"

What if you think I am just peachy because I can still do that when I'm no longer wanting to do solo 30 foot rock climbs like this  (at Hawk Mountain) or waterfall climbs up the falls like this (at Sullivan Run) and this, its frozen cousin at Ricketts Glen (and that isn't a fun thought, by the way).

All you know about my internal body heat getting out of control is that I must be the smelly kid if I look like this after 20ish miles on the Standing Stone Trail in 2013. You don't realize that I am on my way to looking like that in short order on a walk that's about 4 blocks long in my neighborhood yesterday (seeing as it was 90°+).

You see me as able to walk, type, talk, see, laugh, and play. You don't always catch my robotic voice, my non-smile, my inability to hear soft, high-pitched voices, my lack of smell, or my unblinking eyes and associate them with other things SLOWING down, too (although they do).

So let me ask you this, as I did my wife the other day when we were talking about the long disability process (partial / full / future / changes / etc.) and how I discuss being relatively "active" when I speak to people concerning it. 

Here I should emphatically state the boulder climb was last year, the frozen waterfall was 2015, and the running water climb was 2014. Also, keep in mind, my diagnosis was September 27, 2016. I still go out to places like the Throne Room (hiking through rock fields to stunning vistas) because I want to enjoy life. Why shouldn't I? Would it make people happier to know that by being diagnosed with Parkinson's that I am truly unable to do things. I mean, I could never dunk a basketball, let along fake out Lebron to dunk on him, but why can't there still be things I can do when there are other things I can't do / never will be able to do?

Thus, here is question # 1. What if Jimmy Choi is an American Ninja Warrior supreme? Does that mean that he's not someone with a disability?

There's a lot of famous people with Parkinson's. 

There's a lot of famous people with disabilities.

They do what it is they do and want to do and need to do. Does that mean that their conditions don't create other new normals for them?

There are a lot of athletes with disabilities. These include Jim Abbott, who has 1 arm and an MLB level no hitter to his name. His story was featured on Comedy Central's Drunk History.

Seeing as I'm a baseball guy, I'm a little more familiar with people like this (Lou Gehrig, MLB Hall of Famer, you rocked! See my story on his first season playing with ALS (which is the best baseball season ever!!!).

So yeah, here's Pete Gray who was the last pro hitter with one arm.

Here's a great story about one-armed baseball players including a lot of kids who do despite what other kids and adults make them feel that they can't do.

Adam Bender is a tough as nails kid. Despite having one leg, his life has been about giving it his all. Even when he was profiled during his elementary school days, he was still Navy SEAL tough.

Here's another list of people with disabilities who were / are successful in spite of them.

Nevertheless, in a world where the wheelchair is the symbol that many people think of regarding disabilities, what about invisible disabilities? For me, this is everything that bradykinesia does to slow people, like me, with Parkinson's down. This is also exhaustion, mental overload, medication side effects, and cognitive issues. For a friend of mine with ulcerative colitis, this is the need to always be around a bathroom and lots of exhaustion. For many of us with disabilities, apathy and depression are the permanent unwanted guest. For as good as we might look, we have our issues.

Just because you see us having a good time doesn't mean we're any less "diagnosed."

Additionally, my boots keep my claw toes in check, but without them, it hurts to walk distances. This is why I don't wear sneakers. Nevertheless, with boots AND poles, I can balance on rocks. Yes, I'm actually more comfortable walking a rock field in boots than from my car to my job.

But even when we're still ourselves (in my case Dan), we're still battling our conditions to stay us. 

"Sometimes you win. Sometimes you lose. Sometimes it rains (Bull Durham)." 

The point is that there are outliers who run marathons and kick butt. Sure, we can be the outliers. Most likely, we will do our thing and just be. However, we'll always have the monkey on our back to fight with. On those days, we'll get our GRRR on.

Whether you see it or not. 

So in the end, I'm Dan, but I'm Dan with an evil sidekick who constantly taunts me.

For that, I have a condition that always affects me. It may not be the condition someone else thinks of being "truly" disabled. It may have come on later than another condition. Nevertheless, it's something that affects me now, and it will affect me more later.

Whether other people understand that or not, it's true. That said, whether I think I always can let me be a person first, I need to keep being Dan, regardless.

Letting Parkinson's have me is letting me turn into a pod person, and that's not happening... no matter what symptom I'm stuck with.

In a world filled with so many wonderful things to see and do (this is the Faroe Islands), anything less would be anathema, especially when I control the equation.