Sunday, August 21, 2016

Something to Lean On

I open my eyes this morning and I remember immediately how dramatically my life has changed.

But I don't see my cane first thing this time. I don't see the walker. I'm facing the other way, as we sometimes do.

I see the woman of almost thirty years who has been through more than any person I have ever known. And she has never complained. She may be the sanest and strongest person I've ever met, which makes her a perfect match for silencing my multitude of demons.

Waking up first, I see her also facing away on her side. I run my hand silently down her hip and pretend I don't know it will wake her. She wakes up and silently pretends with me.

You can keep falling in love.

All our new niceties and master levels of patience are practiced on each other. We don't know what we are doing, but we'll keep trying to figure it out. We'll become stronger. More patient. Weirder.

Our game plan was recently upgraded from the boilerplate "in sickness and health" to full on running around with our asses on fire to finally at least displaying some similitude of hope and kindness in the onslaught of this rapidly unfolding hell.

With my cognitive changes, I struggle sometimes to focus on what is real and important. That includes remembering that I am not going through this alone, but that I have many friends who are supporting me.

Every morning I remember.

My greatest support is not framed metal. It is a woman's strong, unwavering hand and heart.

I could not ask for a truer soul than her on this darkest, sharpest turn in the road yet.

Thursday, August 18, 2016

Textbook Anomly

"I don't like him"

"He's better than a lot that I've had," I told my wife earlier today.

"I don't care, I don't like his bedside manner," she insisted.

"Bad bedside manner I can put up with," I plead. I just want a damn diagnosis. He's supposed to be one of their best neurologists and this has has been going on for months."

He had already told me on one urgent phone call a truth I could easily figure out with his repeated reschedules: he is incredibly overbooked and overworked. He's focused on doing the best he can for the patients and not their feelings. Regardless, I think he is alright. Although his lack of diagnosis did help drive me to say the F word about three times directly in conversation to Amy and I almost never do that. Hey, I've been stumbling on a cane for eight weeks. Sue me.

The doc still has not made a diagnosis, but has committed to fully being against a Lewy Body Dementia diagnosis, as he says I am too young. For weeks, he said it could still be Parkinson's. He has still not ruled it out completely that we know of, but is now leaning toward something else. He said they're sending the labs taken today to the Mayo clinic. They will be "rushed" but that means two to three weeks still. The paraneoplastic autoantibody evaluation will test for autoimmune encephalitis.

I don't know exactly what that is, but it does not look particularly less or more terrible than all the other diseases they were considering. Yes, that was sarcasm. But it is important to take into account he did not diagnose me with that, just that he is sending labs to test for it.

As long as my memory loss suffers weekly along with the loss of being able to walk, I'm going to do my best to regularly journal about it here. A bit will be be boring or depressing. Or both. Like seven tenths of it for a while probably.

A couple times today, Amy grabbed my hand and just asked "how are you doing?"

I'm tired.
I'm exhausted.
I just need a break to catch my breath.
I am grateful I have friends and family and faith.
Thank God I have Amy by my side.
Someone has to make fun of the neurologists with me.

Friday, August 12, 2016

Awkward Laughter and Uncomfortable Silences

I don't like the look on that guy's face. Something ain't right. He's changed. He's grown away from me. He is barely a streaked facsimile. This trembling heap looks like a haggard Nicholas Cage after a Hangover movie level bender. Sick and tired.  I'm sick and tired of that guy looking sick and tired. I want to look at least a little better in my Facebook pics with all my recent visitors!

I have come to accept that my blog for some time will be at least a little bit of a journal of my current health issues, as they've only declined for the last eight weeks. The rapid decline is itself a story. With my continued loss of motor skills, even my being able to still type this is itself quickly becoming a story.

Lord, may I only shuffle in my father's physical footsteps, and not down the cold, dark mental paths and dead-ends that he has been lost within for years now. I don't want my written chronicle of this current health fiasco to devolve into a poignant yet rambling, dribbling pile of nonsense. Don't get me wrong, that could be entertaining. But Amy and the kids have to watch that too and it could get embarrassing. And since I have always been the weirdest person I know, good luck determining if and when I cross over to that much weirder and more colorful mental side.

For most of the last six years, I would jump out of bed every weekday about 4:00 am, to go to work by 6:00 am or 7:00 am. Now, I don't jump. For anything. That's how frail people like me get hurt. When I shower, I must hold the handicapped bar (I'm glad I was too lazy to remove it. Sixteen years. So awesome.) to not fall over. I need to hold the bar to be able to close my eyes as I rinse the shampoo from my twenty or so head hairs. Otherwise, my hips shoot left and right like my knees are a painter's scaffolding being loosened and shaken by shithead little kids. All I can picture is the diapered little baby on YouTube shaking his butt to Beyonce bellowing All the Single Ladies!

Funny, right! Except all I can imagine with my eyes closed (besides the hilarious and come on, let's be completely honest, totally adorable baby video) is the glass shower door just inches away from my ass and shaking right hip. I'm afraid I will finally fall over, take it out and severely hurt myself. So, I hold the handicapped bar a little tighter. With my eyes closed, I shake worse than a drunk man suffering veritgo with Single Ladies stuck in his head. I imagine fate hates me enough that I would actually survive a shower door accident, but it would still tragically take something important, like an entire arm.

That would make sense, actually. That would quickly overshadow the current problems. With every new Book of Job level trial and memoir chapter, I get closer and closer to just renaming the book, "Well, I Suppose Things Could Always Get Worse."

Chapter 1 - They Do. So Much Worse, Dude.
Chapter 2 - Yup, Again
Chapter 3 - Ok, This is Getting a Little...
Chapter 4 - Oh Shit, I Just Lost An Entire Arm
Chapter 5 - Etc.

Amy is not always a huge fan of my making wisecracks about my condition. Sometimes my timing is way off. Other times I sound more sarcastic or angry and not lighthearted. Or yet other times, I use phrases like "once I'm dead and gone...". So, I've been working a lot more on my timing, at least! Also? Cool little thing, guys... check it out... at least I'm trying to make jokes. Maybe my smartass comments being funny or not funny is less than relevant at this point.

For a couple months now, I have just prayed to God to please let it stop getting worse every week. I'm going to let you in on a secret. To be completely honest, so far His answer has sounded remarkably identical to, "NOPE".

In fact, my seizures have worsened considerably in even just the last few days in both frequency and intensity. My continued loss of balance and leg strength has been measurable, even in just the last two days. I almost fall every day and then I finish each night with amazement that I have not already fallen. Several times every day, I take a step and my left foot hovers in midair, unsure of which direction to go. I look like Captain Morgan, if he wore pajamas during the day and forgot to brush his beard again. Or his teeth. Disgusting, but true. Anyway! And that imbalance and weakness has just barely, gradually increased every day for weeks now. I often wonder when and where my first fall will finally happen and I think about how much I hope that I can mitigate any serious injury when it does happen. 

Ok, enough with the bad news. Now for the awful news. We found out yesterday that unless I make a comeback in the next month, I will be terminated and let go from my company in September. They bore with me patiently for weeks and weeks, but they only had short term disability to offer, which they even generously paid out of pocket. But they simply need a full time I.T. guy again. Amy's job ends by being outsourced ten days before mine ends, but she has some months of severance at least. That's good, since our health insurance continues as long as she is on the severance.

Two weeks ago, I was assigned a Parkinsons case manager from Neurology. On Monday, I was assigned an Epilepsy case manager, because of my increasing seizures. The worst seizure was last Saturday, when at about 2:30am, I was unable to text Amy or call 911 for almost five minutes. Since then, the moderate to mild seizures every few minutes throughout the day have become part of the regular routine.

The weight loss is still a serious issue, as I still spend the first half of every day with no appetite and with severe nausea. With intense focus on calorie dense protein shakes and large meals in the second half of the day, I was finally able to gain 4 pounds this month. But I am still drastically underweight.

Well, this was a cheery blog. Bye bye for now!

Ok fine. This is where I say something philosophical or funny or inspirational or religious, right? Or, maybe I could blow up and rage against the fucking unfairness of it all? Because that is always super helpful.

I've told Amy and my mom that if I progress any further to requiring a wheelchair, I will then want to quickly plan to go out to New York to visit my dad a final time, before travel becomes any further prohibitive for me.

Despite all this happy horseshit, I am excited about the memoir I am writing and the fellow writers I have been able to work with recently. As I've struggled with memory loss and confusion, their interaction is so valuable. There is also a good chance, despite all this, that I may take another writing class in the fall.

Thank you all for your thoughts, prayers, texts, calls and visits. It means the world to me, especially during the hardest time that Amy and I have ever gone through.

And there is easily a 4% to 5% chance that I won't have even more awful news in my next week's blog, so stay tuned!

What? That was funny!

Saturday, August 6, 2016

Crossed Wires

"God, please let me go a whole day without something new happening. Please let me stop having new things to add to my blog each day. I am not praying that you make me better, just that I please stop getting worse."


At 2:32 last night, I tried to text Amy to tell her "I am having a seizure".

Four minutes later, I was able to text her.

When the seizures hit, I can feel something misfiring and shutting down. It feels like it is behind my right eye and as if my IQ just plummets. I feel like a real life Charlie from Flowers for Algernon.

The one that hit last night occurred after a very late phone call with my mom from midnight to about 2:00am. We had more laughs than any call this week. But there was also more screaming and yelling the F word. That's how we dysfunctional New Yorkers tend to voice disagreements. If you have trouble conveying an idea and need to really make a point, just say it in ALL CAPS and with liberal use of profanity.

About a half hour after telling my mother "love you, goodnight" and hanging up, I sat on the edge of my bed and for four minutes, lost the ability to stand or even dial 911. I kept trying to text Amy, only to watch my convulsion switch to a shake so severe that I literally threw my phone more than once.

I remember worrying that this was a final seizure before something much worse. I watched as my clarity of thought rushed away from me and was replaced by a gray confusion.

Flat on my back and still completely seizing up, I turned to my right when I heard a noise. My dog Chloe's face was a few inches away, sniffing me and trying to also figure out what was going on. She also happens to take medicine each day for epileptic seizures. Small world!

I thought I was dying. My neck stiffened and hurt so bad that I vaguely remember grabbing it and saying, "what is happening to me?" I yelled out in pain and fear, as I was unable to even text the word, "Help".

I know a lot of people are praying for me. I hope the signals stop crossing and the saints are finally able to get through.

Thursday, August 4, 2016

Seize the Day

My psychologist was visibly distressed at my physical condition yesterday. He had not seen the cane yet. Amy sat in the hour long session for the first time, as my memory has been incredibly unreliable for weeks. But I definitely remember she was there!

My seizures are considerably worse this week. What used to be convulsions are now actual seizures and they prescribed yet another Rx yesterday for these. My whole body stiffens like a board so much that my head shoots back with my face toward the ceiling and my eyes slam shut for a second or two. I told the doctor that I am not comfortable driving like that. He agreed that would be a good idea.

It's been almost a month since I have been able to drive. I had no idea the frustration and sense of powerlessness that I would experience by losing that one freedom. At least I have three different visitors scheduled to come by the house today, which is both awesome and scary. How can I be so simultaneously lucky and unlucky?

After talking to me for the full hour, the psychologist assured me that I am taking this new development surprisingly well. Really? I'm not so sure about that. I am a decent actor and have been successfully portraying someone who is not dysfunctional or terrified for quite some time now.

I told him that this trial might so far be my worst, but it is not my first. Amy said she has watched me battle so many impossible obstacles for twenty years, that she has only assumed for the last six weeks that this will be just one more test that I overcome.

Two hours later, I had a follow up phone call with one of the leading tremor specialists for Kaiser Neurology in the Portland area. He prescribed yet another Rx for the seizures. I said I know he will not commit to a diagnosis until more tests are run and time has passed. But I said we were going crazy, waiting for some answers. I asked if he could at least indicate what by now he thinks it may or may not be.

He said they are overwhelmed with patients and thus playing triage, but he will see me again in person August 19th for another visual examination and can make that sooner, if my condition worsens. He also has me trying a new Rx for my seizures and another final increase on the Parkinson's meds for my tremors. He said I am definitely too young for Lewy Body Dementia. He said it is probably not MS or ALS based on the tests so far. He said the brain MRI did not show atrophy, but this ataxia still could be residual damage to the brain from years of severe alcohol abuse. Or it could in fact be Parkinsons, even though that usually presents less rapidly. They are still somewhat understandably dragging their heels on a diagnosis, but that is still one of the most indicated options at this point. I finished by agreeing to email him my father's years of medical records, with page after page of identical symptoms that started six years ago with dad.

One of their biggest concerns with my condition is how rapidly it onset, as mine progressed extremely fast. I slowly shuffled into his office two weeks ago, but without a cane. Now, a cane is barely enough to keep me from falling each day. If it worsens just marginally or even stays the same, eventually I will fall. I have so many close calls every day, even leaning deep into the cane.

The neurologist finally said last night that this could be another nerve disease entirely. He said it will require further tests, like super fun spinal taps. (He didn't really call them that.) They're going to continue to run some tests and try this new Rx for the increasing seizures for now, but it may be a few more weeks before we hear anything more.

Things not worsening for two whole weeks would be an improvement.

Amy is driving to California tonight with Brittany for her uncle Ivan's funeral. Ivan was a great guy and will be missed. Amy and Brittany will be gone for four days and she said it is time to determine if I am a big boy and can take care of myself. I have not told her that I am pretty sure I will fall over and take out some important furniture, then try to hide it from her later. (I hope she does not read this!)

Obviously, I am a big boy and take care of myself just fine. To prove that, I have invited about one hundred people to visit until my bride and firstborn return next Monday. And we have a guest room!

Regardless of what this is that I am dealing with, I still hope and plan to get better. Of course, my health problems getting better has literally never happened in twenty years beyond a cold, but I will positive the hell out this. You watch!

My dad also started to lose his ability to walk just six years ago, but he also suffered dementia almost immediately. There are a number of differences with me that could indicate this is not the same problem, but temporary. 

I still enjoy time with loved ones, fully aware of who is here or on the phone.

I have had persistent memory loss, but only short term.

I can still think.

I can feel.

I can type.