Cruise two

Every morning we had room service, including a custom smoothie made specifically for me. Our Filipino room attendant was great. He first misunderstood our request for a commode chair and brought us one of those things that you place on the toilet seat to raise it up to ADA compliant height. It slid around and would have proved disastrous had I tried to sit on it. We explained that it was not what we needed, detailing as best we could the concept of a commode chair, to which he responded excitedly "with the hole in the bottom! ".

We found what we needed upon returning to our room later that day. It even had wheels!

Okay. So it was high enough that when I sat on it my feet dangled. The back of my legs compressed under the weight and hurt like hell. The seat was a full foot over the maw of the toilet. I had to prop my feet on my wheelchair to ease the pain. As an added bonus, the commode chair and the toilet did not line up. This proved more of a problem for Amy than for myself. Consequently, we used the chair for its designed purpose only once.

At home we have a commode chair in our shower. It has no wheels and is the perfect height for its customized job. It is now a shower chair. We don't need it for our toilet, which is ADA compliant and has a bidet seat.

We used the wheeled contraption in the shower on the boat. Since my wheelchair can't get wet, we substituted it for an upside down garbage can with a towel draped over to pad my heels. If you ask why we didn't use the fold down shower seat you must be forgetting the important difference between the two appliances. I take my hygiene VERY seriously. So does Amy.

I promise to get out of the bathroom with my next post.

Cruise one

Cruise. Thank you all for making this a reality. Despite obvious challenges, we took full advantage of everything the ship had to offer, of course considering my limitations.

The service, especially for my particular needs, was no less than spectacular. Our stateroom, located at the front of the ship on deck twelve, boasted a twenty foot wide, floor to ceiling array of panoramic glass panels tilted thirty degrees, top out, offering an unequaled view of the Gulf, eighty feet below and stretching to the horizon.

The bathroom smelled like oceanic fish and used diaper flotsam, but after two days the odor kinda grew on you as familiarity crept in. I venture to say that our activity never made it worse. I suspect any masking of dead fish and spoilt diapers is an improvement no matter the vehicle.

The scent never wafted from the toilet area.

Note to ship designer : never install a grab bar behind a tankless, wall mounted toilet. I now sport a permanent depression below my shoulder blades and an annoying tendency to hunch forward and stare at my junk.

Now that I've managed to put visions of (not) sugar plums in your heads, (or did I?), I will continue after Christmas.

Prelude to our adventure

Before I share the details of our cruise, I offer a tidbit on health in general and Diabetes in particular.

This realization is both tragic and informative, as it touches not only on the present calamities inherent within our medical community, but the misguided inferences evolved from generalities accompanying diagnosis.

The requisite dietary change demanded of ALS sufferers is contrary to the health of the patient and in no way defines any benefit, either by structure or content. No nutritional paradigm is offered other than to limit protein consumption. The primary task of the program is to put on weight and keep it on. Any kind of poundage at any cost. This plan, coupled with less mobility and less exercise, (a natural assumption upon the dim diagnosis we all receive), is the perfect recipe for diabetics. Apparently, the doctors have conversed and concluded that the tradeoff is ultimately beneficial to the patient. As a result, the incidence of diabetes in ALS sufferers is significantly higher than in the general populace.

I was never diabetic pre-ALS. I was never obese. I was always physically active. Six months after my diagnosis I became diabetic. It all makes sense now. I made an effort to gain weight. I topped out at 225 pounds in November of 2011, having gained 25 pounds, a delight to my Peoria doctors. Of course, it sucked, but I was convinced that a fat ALSer is a healthy ALSer no matter the cost. After all, since ALS would strip weight from my body as it inevitably killed me, more unhealthy flab would take longer to consume, thus giving me more time to flail (that's a joke) in my increasingly useless shell.

My sugar was elevated so I started taking Metformin. I kept most of the weight on because I was told to. Upon moving to Dallas and enlisting new doctors, I was again informed that a fat ALSer made for a happy neurologist. For two years I managed to tip their scale at around  210 pounds.

A year ago, after two years of clinic, after two years of trials, after two years of pointless encounters with people of hopeless expression.... I quit going. I told them to call me if they stumbled across anything constructive. So far, no calls.

Okay, I'm getting typically far too long winded.

It turns out that Metformin has been eating a hole in my gut the whole time. Two months ago my GP switched my medication to Junuvia, the worst shit money can buy. I took it for two weeks and then told Amy that I was through with it. I was never diabetic until the doctors told me I was. They were dead wrong. If anything, they moldered my brain into believing something just to fit their preconceived notions.

I wonder what other notions they have designed for their patients?

Since dumping all diabetes medicine, my blood sugar readings have been the best in three years. Figure that. Thursday I tell my doctors. They won't be happy and I love that.

By the way, I'm rolling around at 170 pounds without a gut ache for the first time since arriving in Dallas.

Don't believe everything you hear from your doctor, your priest or your congressman. None of them are immune to standardized assumption.

Amy said I only took Junuvia twice. I believe her. It seemed like two weeks. I'm also fairly certain I've misspelled the product, illustrating my disdain and punctuating my apathy.

Gratitude

In less than a week Amy and I set off for Galveston and board the Royal Carri-bean ship "Navigator of the Seas", setting "sail" for Cozumel, Grand Caymans and Jamaica. The cruise is considered an ALS excursion. Exactly what that means is yet to be learned. I'm extremely appreciative of all who contributed to our fundraiser, effectively making this trip a reality.

I'm also in awe when I think of how brave Amy is as she not only cares for me singlehandedly every day but manages to find adventure for us on a regular basis while tirelessly researching alternative remedies for my condition. She both literally and figuratively lifts me up. She is stronger than anyone I know. I regret every time I give her shit.

Thanksgiving was great. Intimate. The Evans family celebrated in El Dorado, Arkansas this year. Home was where we stayed. Joining us were Rachel, Nick and Paige. As a surprise of epic proportions, Mary, Aggie and Albert drove from Peoria and ate Turkey with us. I'm really lucky.

If the stars properly align I will continue to post while on the ship.

Do you realize that my family (my kids) have drastically altered their lives just to be near me? Do you realize that Sarah and Tim have taken us into their home? It all amazes me. I have no right to be crotchety.