2014.08.24

Robin Williams killed himself, they say, because he was diagnosed with Parkinson's Disease.

Thanks to the "ice bucket" challenge, ALS Disease awareness is at an all time high. Indeed, they say this social media initiative has been so successful, they've raised a million plus for ALS research.

Huntington's Disease is a witches' brew of both these diseases with a dose of Alzheimer's mixed in for measure.

So between Mork stamping his "no-return" ticket to Ork and seeing some douche get a cold douche every time I turn on the computer, thoughts of Neurological Diseases are inescapable these days.

First things first - I have no sympathy, but complete understanding for Robin Williams' suicide. Sympathy is undeserved because Parkinson's ain't that bad. Fuck you, it ain't, I know. Understanding, however, because I've come to realize that suicide can be a valid solution.

Not an easy revelation to come upon, but one I feel confident enough to defend. And I was raised Catholic.

Huntington's Disease is a genetic trait one is born with. Like blue eyes. But it is a genetic trait that causes dementia and kills you ugly. There is no cure. Would it still be a mortal sin to commit suicide if you were born with HD?

No. And I would take that argument right to St. Peter at the judgement gates. You don't want suicides in heaven, then stop allowing people to be born with broken brains. You shit.

HD isn't a "life challenge". It isn't something that can be prayed over and conquered. It is a birth-right death-sentence and it is absolutely pointless and awful. There is no religious lessen to be learned here. Unless you count "suffer and die" as gospel.  

Regarding the ice-bucket challenge. It has been going on long enough now that we're seeing some back-lash. People don't like being shamed into charitable donations and some complain that they would rather donate to different causes. I've even seen a few mems about how it is a big waste of water. Whatever. Obviously it has been a successful campaign. They even tried a similar stunt for Huntington's Disease. A pie to the face or donate. Eh, that didn't catch on as well.

Nevertheless, a million plus to research a cure for ALS, which might also provide some relief for HD. That's a good thing.

Still. Something tells me even after all this - all the shivers and tax deductions - ALS will still be around a year from now. Five years. Ten. Twenty. A hundred.

The diseases will win. The diseases always win.

2014.08.21

Don't mean to jinx it, but if I make it through the coming weekend sober, I think I'll have kicked the booze for good. Been pretty drunk these past three months and it was starting to affect me at work. I can't loose this job; not yet, not until I have no choice but to become a round-the-clock-stay-at-home, caregiver. Got to sock away the paychecks, you know. Sure, MW will qualify for disability - sweet, I'll be living off my wife's social security! Every trailer trash boy's dream - but I know from experience we'll need more than Uncle Sugar provides for those little emergencies: making utilities handicap accessible, dietary supplements, hired help, etc..

Anyway, it has been... informative - spending three months inside the bottle. I've never had much patience for alcoholics, but now I certainly see the allure. Not only does drinking take the edge off tragedy, it also frees the mind to imagine greatness. All that self-motivation bullshit - I can accomplish anything! - seems real when drunk. Oh, the plans I made, the future I imagined! yes! as long as I kept the bottle to my lips it all could happen.

Now that the cap is on, I'm much less enthusiastic. But at least I'm employed. That's the most important thing. For now, anyway. Part of the agreement I've made with myself to achieve and maintain this sobriety is the understanding that as soon as I'm no longer punching a clock, I'm right off this goddamn wagon. By then I'll be spending the days watching MW die by inches. No way I'm doing it sober.

2014.08.23

The good (?) news is it stuck. I made it through the weekend without drinking or buying booze. Now what?

Back to basics: the point of all this was to chronicle MW's descent into HD. One year ago, right around this time, MW had the breakdown that caused her to quit a job and disconnect from her family. Since then she regained the job, but still hasn't seen or talked to anyone in her family.

MW has maintained the bizarre and highly restrictive diet she started one year ago.

She continues to be overly sensitive and regimented about sleep.

Extended conversations with MW frequently display indications of dementia. Paranoia. Fantastic delusions. Nothing I can't defuse or redirect when we're together, and she seems to do okay around her co-workers.

So it has been a year since I started this blog and, really, things aren't any worse than they were back then. Better, actually, because her family is shite and not having to deal with their relationship is a huge relief.

Certainly, I am aware of MW's slurred, stinted speech. How she skips or can't find words. Also, I notice the chorea; the difficulty in handing her things, her "clumsiness". I have to constantly clean up after her, especially when she eats. And, even more troubling, the increased frequency of her choking or coughing around her food. But I'm the only one clued into these symptoms and only because I've studied up on the disease.

Could it be I'm projecting? Maybe MW doesn't have HD after all. Maybe I'm the paranoid one.

Maybe.

Time, I guess, will tell. But holy fuck this waiting around for things to get worse is a bitch.

2014.04.17

The grenade is still there, ticking, but I’ve re-learned to ignore the goddamned thing. MW is, for all intents and purposed, functioning well. She’s back at work; socializing, living…. Sure, there’s still more than enough batshit – but that’s mostly confined to the casa. Me? I’m drinking again so it’s all good. Drunk right now, thanks for asking. Oh, yes. I’ll be good and ripe when that pineapple finally blows.

I don’t want to embarrass myself, but I feel a compulsion to make an entry in this journal. Forgive the flaws; but here’s a brief rundown of recent (possible) HD behavior:

MW still won’t go see her father – still makes me go in her stead. Used to be she’d let me go alone; now, however, she wants to come with and sit in the car in the driveway. This, she said, makes her feel closer. Anyway, last weekend her father walked me out of the house. MW had to duck down under the dashboard to hide. I was reminded of the award-winning flash fiction story about the young girl hiding from her lover’s wife. Then I felt like crying.

MW still has problems sleeping – talking all night about imagined illnesses, but last night she fell stone-asleep by, like, 9:30 at night. I’m not sure what’s up with that? Was she just so exhausted or is it something else? Something HD related? Seriously, it doesn’t happen often, but occasionally these sleeping fits come upon her and it’s like a switch gets flipped off. Her Aunt used to display the same symptom (and is now HD+). This may require research.

2014.05.06

Twice within the last two weeks I’ve found myself hugging the toilette bowl, cramming a toothbrush down my throat, trying to induce vomiting. Bulimia? No, nothing quite so glam. Rather, I’d realized I’d imbibed too much booze and was attempting to preemptively strike the resulting sickness through injudicious purging.

It didn’t work. Either time.

Yesterday, while taking a walk, I was staggered by a powerful recollection of a place I’d never been; an event that never happened. Hard to describe, but I stumbled over my own feet as I saw in my mind’s eye a familiar hiking trail – complete with trees, gently running creek, dappled sunlight – but knew that the trail did not exist. It was a figment of my imagination. There was a break in the path – I remembered – where you either had to use rock-climbing skills to traverse a steep bluff, or cross the water to the other side where there was no trail, only thick underbrush and weeds.

Also, there was a girl somewhere on the trial. I couldn’t recall if she was ahead of me and I had to catch her, or if she was behind me and I had to wait, but I knew she was there.

I could smell the wild scallops and feel the dirt under my hands from traversing the bluff.

Only this never happened. This place doesn’t exist. It was like a decades old dream suddenly exploded into my consciousness. I’ve always discounted claims of déjà vu and the like, but this was such an overwhelming feeling of place and time, I got rattled and had to sit on a park bench for a while.

And finally last night I experienced such a perfect “Lost Weekend” moment, I had to laugh. See, I totally forgot where I’d hidden a bottle of Canadian Mist whiskey. It wasn’t in any of the usual spots, so I frantically started tearing up my room. Wait. Pause. Take a breath. The guest room closet, yes, because nobody ever goes in there.

Crises averted.

Still, all these events combined make me think my brain is breaking, if not broken already. And it isn’t the alcohol. Well, maybe say it isn’t JUST the alcohol. Maintaining status quo with MW as she continues to descend into Huntington’s disease is like a constant mental hammer. The booze keeps this throb from becoming a full-on Ginger Baker drum solo.

Problem is: with both our brains breaking, what’s going to happen to us?

2014.03.27

Nights are becoming extremely difficult. A pattern has emerged: at least every third night, MW will not sleep due to some anxiety. Naturally, when MW is not sleeping; I’m not sleeping.

And right now I am so goddamned exhausted.

Work is still very busy, and then I’m cooking/cleaning for MW every night until 8 or 9, then she demands I sit with her while she watches TV for a couple of hours. This is our “together” time. And then if it is one of her bad nights, I’m constantly on the move fetching things or wide awake listening to her cry. So come Thursday, I’m pretty much walking dead.

How long can this go on?

Juxtaposed against my fatigue, MW has done well with the temporary full time hours at her new job. She likes being around people, and she loves the fact that she’s working again. I truly thought she’d have found a reason to quit by now, but she’s still going. Tomorrow will mark two full weeks.

Good for her.

And, if she can maintain, good for me too. I desperately need some time alone, if for no other reason than just to sleep. My luck: she’ll make it through the training but when it comes time to start working weekends; MW will quit.

2014.03.28

MW asks me to hold her hand at night as she falls asleep. Last night the twitching, spasms and clutching became so pronounced, I almost asked if she was doing it on purpose.

That would have initiated a grand conversation.

Still, for all my worry and concern, MW is basically functioning at the same level she was when I started this journal. In some ways, even better, in that she’s kept a job for two weeks – two whole weeks! – now. But it is these little terrors – the twitching, the slurred speech, the carelessness and strange conversations – which makes every single one of my days a suspenseful nightmare. What is going to happen today? Will it be too big to ignore or equivocate (“Of course you’re not sick. Everybody occasionally misses their mouth with the spoon.”)?

Last night also saw a return of the obsessive paranoia over health. She has a chipped tooth and is certain that the remainder of said tooth will break off while she sleeps and choke her to death. So she kept asking me over and over again if that will happen. How many times can you say “No, dear. You can’t choke to death on a chipped tooth” before you start going a little crazy yourself? I do my best, but I need a crutch. 

Oh, and also, today my brother sent me an email with a link to an article about a possible cure for HD. Odd in that this was the first time he’d brought the issue up, even though I had expressed my concern over the matter with him a very long time ago. Perhaps he has noticed a change in MW? I would be interested to know why he sent it, but instead I made a joke of my reply. I appreciate my brother and know he means well, but all he can offer is sympathy. That’s all anyone can offer.

I don’t need sympathy. I need a solution to a problem that has none.

2014.03.20

You look for one day – just one – where no symptoms of the disease are manifest. Of course you can’t help but notice the speech, the spastic movements, and the bizarre conversations, but you look for that one day where the disease doesn’t make things “bad”.

Yesterday was close. The only “bad” thing that happened was MW got a speeding ticket coming home from work (day three and counting!). You certainly can’t blame a speeding ticket on HD, so I was willing to call the day a success, but the fallout from the ticket – the confusion and paranoia expressed by MW – dulled the shine.

Plus, it raises the issue of how much longer will it be safe for MW to drive?

On a related topic, my foot – the one I fucked up when I got drunk and fell down? – it still aches pretty bad. The swelling and discoloration have gone, but it gets stiff as a brick when I sit for a while. Perhaps I did break a bone in there somewhere. Oh well. The bottle givith, the bottle taketh away.

2014.03.21

Another sleepless night. This time it was acne, of all things. MW started obsessing about a pimple on her forehead. Two in the morning, waking me up, asking me how she can fall asleep when all she can think about is the pimple?

Shit, I don’t know. Pop the fucker?

Funny now, not so much when it is happening. It isn’t like a gentle whisper wake-up from MW, rather she cries loudly and then wants to change the sleeping arrangements. Last night I was able to talk her out of sleeping in the closet, but it wasn’t easy. She compromised by moving bedzilla around so our heads were where our feet used to be and vice versa. I’m not sure why, but this seemed to work and MW eventually did doze off – that would have been around 4 in the morning. She slept; I stayed awake waiting for 6 a.m. so I can go to work and get some peace.

Speaking of work, if MW makes it through today, it will mark one week of full time employment for her. If she makes it through two more full time weeks of training, then she can start her part-time hours. And I’ll have my weekends back. I shouldn’t hold out hope but… I have so little left to look forward too.

2014.03.24

It was a weekend of mostly little terrors. When we got home Friday night, the dog had taken a shit in its kennel and that soaked up most of MW’s dementia – everything within a five mile radius of the shit had to be thrown away as ‘unclean’ and what couldn’t be thrown away had to be disinfected with extreme prejudice. This took all night, but wasn’t too bad.

Saturday I had to work (thank God!) so was able to get away for about five or six hours in the morning. Afterwards, came home; cooked, cleaned, ran some errands, and that was the day. A little terror happened in the afternoon when MW went to take her vitamins. One of the pills got away from her, as they often will, and she commented, “I sure do drop a lot of vitamins, don’t I?”

…

I waited for this to spark some sort of realization in MW, but, no, nothing. Crises averted.

That night, however, MW couldn’t sleep so I was in and out of bedzilla all night; fetching water, fixing blankets, moving this, getting that…. Another notch in the ‘sleepless’ column, but since it was the weekend, manageable.

And Sunday was uneventful.

Today starts week two of the three week full time training. So far so good.   

2014.02.14

A lot has happened since last I wrote. MW got her old job back and I think I broke a bone in my foot. Here’s how it all went down:

MW’s ex-boss called and told her there were some openings available were she still interested. Remember, when MW left work last September, it was because…. Well, I’m not exactly sure. Her head just wasn’t right. So the parting was amicable on both sides; they were sorry to see her go, and she wasn’t all “take this job and shove it”. So they agreed to keep in touch and, surprisingly, they did. Anyway, staying at home hasn’t put MW’s head “right” so she thinks going back to work may help get her mind off all the negative thoughts and worries. Who knows? She may be right. It seemed to work briefly when she started taking classes again. Of course it didn’t last long, nor do I expect it to last long if she does go back to work. Degenerative disease, yo.

I am of two minds about this situation: 1) MW working means I get my weekends back. This would be exceptional. 2) MW’s condition has, to my perception, deteriorated to the point where people could/might notice. So how long will she be able to function in a work environment before being confronted by someone who doesn’t have my flair for lying and equivocating?

Not that I have much choice. I tried in my oh-so-subtle way to suggest she might not want to go back to work, but was rebuked in that I wasn’t being supportive. Now I’m supportive. There’s a good chance it’ll mean MW is going to find out she has HD sooner, but I’m supportive.

And here’s what happened with my foot: I got drunk Saturday night and fell off bed-zilla. Recall that bed-zilla is two queen mattresses shoved together in our sitting room where we sleep to ensure MW doesn’t bonk her head against the wall. Plenty of room on bed-zilla to avoid most perils, except when trying to transverse her on foot. And, as I said, I was well in my cups at the time. I know I’m supposed to be off the booze, but the plan was to start on Monday, and I had one bottle of wine left, so I decided to empty that cupboard. Turns out the wine was absolutely awful, almost undrinkable, one of those $3 Merlots they sell at Whole Foods, so to make it palatable, I mixed it with a bottle of seltzer water and ice. Viola! Wine spritzer. Also awful, but easier to drink.

And drink I did. Then I tried to walk across bed-zilla. I wound up writhing in agony on the floor, my ankle swollen twice its size.

But I’m a caregiver. I can’t go down. I walked on the goddamned thing all day Sunday, all day Monday, came home, took my sock off and not only was it swollen, it had a streak of purple-black that runs from one side of my heel to the other. What could cause that? I’m thinking a broken bone somewhere in there. Oh well. I can hobble on it good enough. And there’s no way I’m going to a doctor, so hopefully it’ll just set itself.

And now another fun filled weekend looms. Worse still – on Sunday I have to tell MW about the trial in Austin and how I’ll be away a couple of nights. All in all, not going to be a good Valentine’s weekend..

2014.02.06

Quite a few self-indulgent, pitiable posts recently. This plateau we’ve descended to isn’t working out very well – between MW’s incessant complaints and indecisions, I’m averaging maybe four hours sleep a night. And I haven’t implemented my mental escape plan yet – I’m waiting for warmer weather which is not cooperating, so I’m feeling more frayed around the edges than usual.

Still, looking at it objectively with no exaggeration of scale, I can honestly say that I have cause to complain because my situation is far worse than anything else anybody has ever gone through in the history of the world. Ever.

Maybe not, but in terms of shear shittyness, my situation has to be in the top 5%. First of all, HD is an exotic disease. From a 2005 study: only 30,000 people nationwide have it; 200,000 are at risk. That’s fucking rare. Then come at me with cancer, Parkinson’s, Alzheimer’s, or any other prosaic ailment and I’ll slap you right down with how much worse HD is. There is no cure, not even any hope for a cure, and its symptoms are absolutely execrable in comparison with the duration and infirmity of those diseases. I suppose one could make the argument that the individual suffering from HD doesn’t necessarily feel pain, like cancer; however, their goddamn brain is literally rusting away over many years, even decades. It is possible to survive cancer, but if you don’t, well, at least it runs its course pretty quick. I call trump.

So I’m in rare company by rights, couple that with my forced isolation and I’m basically a Man Apart. All of the pieces I’ve read concerning HD victims or their caretakers have a common thread: companionship. Mostly family, sometimes friends, all their stories center on the importance of having the support of knowing, helpful companions.

We have a sick old dog. And that’s it.

As I’ve mentioned, MW’s family is useless. Shockingly so. They have no patience or tolerance and cannot be trusted to handle this situation with anything close to compassion. True story: early on when it became apparent MW and I weren’t planning on having children, my father-in-law took me aside and told me that if the reason we weren’t reproducing was because the fear of HD (it was), we had nothing to worry about. See, he’d read somewhere that you could test the fetus for the disease. If the test came back positive, just abort. Well now. What can you say about a motherfucker like that?

What about my family? I suppose I could confide in them, but this isn’t their burden. And to be perfectly honest they wouldn’t be much help anyway. Except my brother. I could confide in my brother and he – and his family – would be compassionate and caring. I know this. But as I said, I don’t want to weigh him down with my problems. He’s already done enough – too much – for me anyway. Then there’s my sister. She’s been alienated by MW’s behavior, righteously so, but I’m sure if I called her up and explained things she’d come around. However, there wouldn’t be much point to it. She lives far away and is super busy with her own life. Plus she recently became involved in some charismatic church so I’m sure I’d get a lot of “we’ll pray for you”s out of the deal. Yeah. You do that.

I can’t trust my mother. She’d confront MW about getting treatment. Probably start arguing with her again. Do not need that. Finally my dad would be like my sister to the n^th power. He lives far away with his own busy life.

Family is out, then, which leaves friends. Alas, the nature of the beast is irrational, indecisive behavior so the only friends we have left are the most casual of casual. How would they react to the following: “MW has HD so could you call her up to hang out sometime; you know, just to sit and be with her for a while because she really likes talking to people? Be aware that she’ll probably cancel the event because she has a hard time leaving the house, but just making the offer would mean a lot. And if she does show up, please don’t talk about anything significant. Keep the conversation casual because she gets anxious when people discuss problems and stuff.” Who knows? Maybe some would, most would not, however, and those that did certainly wouldn’t do it more than a few times.

At the end of the day it is just me. And the dog. And neither of us are doing all that great right now.

2014.02.05

Yesterday there was a hostage situation in my neighborhood. Armed SWAT cops swarming our streets, hiding in our backyard. Even a tank cruising around.

MW was in heaven! She ran to all the neighbors, sat and talked with everyone, got out of the house to gossip and chit chat with strangers. She really loves and lives for that sort of thing. In the end, it was nothing. Some teenager hoax. But the activity must have been good for MW because she slept well last night. We should have these hostage hoaxes more often.

Reviewing yesterday’s blog entry, however, and I feel stupid. Ashamed, really. Railing against God is so demeaning. Makes one seem childish and naïve. It just goes to show how abysmal my situation is and how desperately I need help. 

Well. There is none coming. So I had better start getting my head right (wrong) so I can deal with this reality through avoidance. Liquor, yes. Soon. It's just that I’m still unnerved by the functional oblivion I experienced last time I drank.

I’m grinding my teeth as I write. For fuck’s sake I never wanted this! I had dreams, plans, maybe even talent. Now the most likely outcome for my life is alcoholism coupled with health problems. How often have I judged alcoholics as pathetic? You drink because you don’t like your job? Fucking quit, you sod! You’re soused because of relationship problems? Well there’s plenty more fish in the sea, babe. Maybe you just booze because you’ve had a rough childhood and can’t handle life. Oh, grow the fuck up.

Your wife’s brain is slowing killing her in the most insidious and grotesque way conceivable and the process will likely take decades but you can’t do anything about it because that would force your wife to accept the fact that her life is basically over and, statistically speaking, many in her situation just off themselves? Yup. Next round’s on me.