Assessment

Sunday we leave Dallas for Peoria. Eight hundred miles. It is taking all of my strength to prepare for this journey. I no longer eat. My nourishment is provided through a Lopez valve attached to a PEG feeding tube lanced through my flesh and my stomach wall. A small water filled balloon prevents the tube from pulling out and a rubber washer prevents it from sliding in. Simply cinch the two together and you're ready to go. The hole heals and soon you can replace the tube with a larger one by stretching the port site, deflating the balloon, pulling out the tube to be replaced and finishing up with the new, larger ingesting hose. I find myself using my Trilogy breathing device more often each day. Sometimes I'm short of air and the forced flow helps to move my diaphram and give me relief. I currently use a nose inhaler because my gnarly ass beard causes too many leaks for proper function of a full face mask. 

Sleeping is still an issue. On a good night I wake up every hour and a half, transfer from bed to chair three times round trip and pee three times. On a bad night I'm up every half hour, transfer five or more times and pee every hour. We are finding some success with a new combination of products.

I'm drooling like a mastiff.

My gut still has problems, but we are gaining on them.

I can't imagine the agony of those with ALS who don't have the intimate, selfless dedication of my loving wife. She is always with me. I am blessed.

Who will I see in Peoria? I'm the really screwed up guy in the wheelchair.

No title

Despair brought about by anxiety due to oxygen deprivation. No way to exist. Got to work on that.

Survival tactics

When do I wake up and find out that the last four and a half years was just a dream?

In less than two weeks we head to Peoria. If you had put my resolve to the test a month ago I would have told you I might not make it to August. If you were to have asked me three months back I would have doubted I'd see June. Every mileage milestone I cross in my wheelchair may be my last. Every season of every tv show holds more importance as I survive the finale. As the next season debuts I revel in my witnessing. When a series ends and I don't it is a special moment. As I track my existence and the inherence of my survival it dawns on me that I'm destined to be on this planet for the long haul because I cannot be satiated. My surroundings and its inhabitants have absconded with my demise and keep propelling me to the next event, the next show, the next week, the next milestone, the next anything.

This is the way to immortality. That, and I've not seen my grandsons since the beginning of June. That, and all the other things about living I love. That, and everything else in the universe.

Ongoing

The emotional aspect of ALS is under-appreciated. Often I find myself crying through association with what I can no longer do. Just to see someone scratch his head sets me to tears. I can no longer eat real food but I spend an inordinate amount of time watching the Food Channel or BBQ-pitboys. As you might expect, I find little pleasure at the dinner table. One more victory for the other side.

The Osmolite 1.5 has been replaced with Liquid Hope. I'd say it is much more palatable but I wouldn't know.

I'm embarrassed about the feeding tube. The Trilogy. My appearance. I'm working on that.

The night is long lately. I live either in my chair or in my bed. The highlight of my day is when Amy pulls me to a stand. The contact is my heaven. I cannot overemphasize this.

I'm to see a gut doctor on Friday. I hope he can run the scope through the feeding tube.

I hope Amy is right. About everything. About me.

Can't wait for the road trip! So far Nick and Paige have 21 tour stops. Amazing.

Every day is an adventure

Every time I think about eating I'm more than a little sad that I'm presently nourished via a Lopez valve attached to a feeding tube that pierces my abdomen. The food (loose interpretation) is injected through a large syringe not unlike my old turkey injector from days past. Yes, I still salivate. The only difference is that the saliva now presents itself visually as it escapes my lips on its way to its final resting place on the front of my shirt. When I'm on my magical toilet my posture allows the seepage to find a direct path to my crotch, which Amy mistakes as urine. I suggest she smells it and she rejects the notion and cleans it up. She's a good girl.

In case you're wondering, no, I'm not incontinent yet. My most excellent bidet, heated and fragrant in a pleasant way, saves Amy from a disgusting task every time I take a seat. Now, if we could find a portable hiney cleaner..

In a couple weeks we head for Peoria. Imagine the complications of traveling eight hundred miles with an invalid who can't even speak. We can't fly safely with a four hundred pound chair and 150 pounds of gelatinous flesh with rubber limbs. Not gonna happen. So we drive. Actually, Amy drives and I provide..... The reminder. Of what? Obvious.

So, let me tell you why.

To see family, friends and facebook friends, blog fans. With this entry I exceed 129000 reads.

I'll have over 900 miles on my Permobil power chair.

The Events I will be attending :

August fifth. Silver Dollar Wednesday Night Blues Jam Reunion, hosted by Nick and Paige of the Reverent Few. 8pm.

Friday, August seventh. Tower Park Music Festival. Around 6pm. The Rhythm Brothers with my good friend, Rusty Hall and then Drivetrain with Nick Boettcher, "Funky" Brian Quinn and Rob Gould.

Saturday, August eighth. Music from 3pm. I'll be there later. My good friend Barry Cloyd and then Paige Dechausse, Nick Boettcher, Dina Simone and Rob Gould of the Reverent Few.

If we go nuts, we might even stay until The Budweiser Illinois Blues Festival. In my opinion the best lineups ever. Nick and Paige duo on Friday and the Reverent Few on Saturday.

Wish me good health.

Me today

In this world there can only be one of me. Is it arrogant of me to delay my visit to the graveyard because I'm unique and don't want to leave my audience and hope for something tangible on the other side?

While I'm sporting pain underwear and a depressing jacket I'm still not ready for the afterlife, where I have been told that I can cavort naked and nobody will care. Doesn't seem like a heaven I would enjoy. If I were to cavort I'd want some attention for my efforts.

The day has eroded into night and my motivation has followed suit. Sorry about that.

What is worth what?

The relevance of this blog comes into question more often as time goes by...... At least that's my opinion. More often, that is, in my mind. The original purpose of this attempt at identifying the user perspective of ALS has been muddied by the endurance of both me and the thread. How do I end it if there is no closure? Perpetuity is ungainly and bloated, yet it may be preferable to an abrupt cessation of all communication on the subject. I just don't know.

My state of mind dictates what I write. If the senses are jumbled, my mind follows suit. The paradox here is confusing, as all paradoxes should be. Lending my mind to speak on these pages only encourages me to examine my condition, which is horrible to the average man yet queerly curious to me on the occasions I'm not the average man. These occasions see me as a separation of physical and mental beings, looking at one another as strangers, vaguely disinterested, almost aloof. My mind's eye wants little to do with a broken down carcass of human frailty possessing nary a function other than a reminder of ability long gone.

The body does what the mind tells it to do. Sort of. I can't recall telling my body to fall apart. I distinctly remember, on many occasions, telling my body to knock that shit off. See me now. The truth is out there, yet nobody seems to know what the heck it is. There is something here I'm missing (other than the obvious). 

Let's talk about setbacks. Okay, let's not. No use in beating the horse to death on the way to the glue factory.

Alright. Since my feeding tube surgery I've been consuming a sludge the color of baby shit and the consistency of pureed baby shit called Osmolite 1.5. Words cannot describe the feeling of this runny snotlike substance splashing against my stomach wall and flowing in runnels as gravity draws it toward my intestines where it apparently slows and pegs out of reach for manual intervention. For a guy who can't move it comes as a surprise that the nutritionist would recommend a product that causes constipation. Because I'm not an idiot it was my duty to question the wisdom of the eighteen year old fledgling expert when she didn't know what was in the can until she read the label, but, as usual I deferred to her expertise on the matter even though she was a deer in the headlights when I asked her what percentage of the carbs contained within the can were complex. As a result of my trust in higher education and my failure to intercede on my own behalf I find myself awash with prune juice, warm, apple juice, water by the gallon......

There is a lesson to be learned here : Don't expect to get the best care from those who read from the book of "Western Medicine School of Conventional Wisdom" that has written your death sentence in their original diagnosis. Case in point : I bled like a stuck pig until someone realized that I was on three forms of blood thinners one day after surgery as per doctor's orders. Leave it to me to leave it to them. I need to self medicate. If only I could roll a joint.

On the good side, I've got my Amy. Now to convince myself that the mind is enough to live on. So far I'm not.

Oh boy

Stress kills. I'm doing all I can, but even the most minor commotion sets me off on a rollercoaster ride of angst and panic. It takes monumental focus and concentration to write this blog post. The eyegaze dot has been infused with PCP laced with crack rocks. It's like chasing a mouse with a lead pipe. Let me get back to you when the mouse is dead and the carcass is more manageable.

Try now. Nope.

My only form of communication has gone rogue. Even technology can't overcome a shaky disposition. If I lose this, just kill me now.