Skip to main content

Food Glorious Food

As you may or may not know, ALS tends to rob sufferers of their ability to chew, swallow, and generally savor food as we once did.  Excess salivation is only the tip of the "iceberg".  With the loss of muscle mass (even in the facial region), the act of eating becomes a tiring exercise in futility.    To extend our lives, some of us resort to allowing a peg tube to be surgically installed into our stomachs else we would succumb to death by starvation, slow and insidious.  I remain undecided on this measure but will likely opt-in.

I love food!  I consider myself a "foodie" as well as a compulsive eater but I must stipulate that I LOVE good quality food.  Don't give me a Hershey bar, I prefer Lindt or better yet, Boehm's Gianduja as my husband will attest.  Why go to Applebee's when one can score better taste and quality having the $15 "3 Course Lunch" at Palisade?

My appetite has changed since the onset of ALS.  As with most of my activities these days, I want it to count.  I want a worthwhile experience and a lot of flavor bang for my buck.  It also so happens that I was a cook and if my husband is to be trusted, I was a pretty good one.  And I have accumulated my favorite recipes and adjusted them to our particular tastes.

These days, my caregiver and I collaborate on meal preparation and she noted that I have increased her repertoire immensely in the short time we've been together.  In the past three weeks she has learned to make (and eat) Elk Chili; bake a whole chicken; peeled, cored, and quartered a fresh pineapple; and most recently, made a strawberry rhubarb pie.  I have also introduced her to Ben and Jerry's Frozen Greek Yogurt.  Her fave flavor is Raspberry Chocolate Chunk while I favor Pineapple Passionfruit.

Comments

Popular posts from this blog

I Remember...

I remember catching fireflies,  putting them in a jar, as a girl of five. I picked pears off a tree that overhung an alleyway on my route home from school, then enjoyed the forbidden fruit. .I had a golden cat who chased a gray mouse through our living room sending my mother, 3-year old sister, and me screaming atop the sofa and chairs. We lived in a farmhouse and I watched Romper Room. A daddy longlegs skittered across my dirty kid legs as I teeter-tottered on a broken kitchen chair back. I played grocery store and laid out a bedroll for group nap time in preschool. We lived in an apartment attached to a bakery. My maternal grandparents visited and a photo was snapped. Grandma held Dawn and Grandpa held me. I held Grandpa's chin. Walking through the back of the flour-caked kitchen, I saw scrumptious pastries and colorful toys stuck in the cupcakes with my hungry kids eyes. We lived in a two-story apartment building next door to a large farmer's field.  That field was my...

Managed

Managed care, do not get me started. It is the bane of my existence and my savior. If quadriplegia has curtailed my activities, and it has, then being in a home has curtailed even more. I've had to dumb it down and set my standards low. Gone, are the halcyon days of getting in my wheelchair to go for a stroll or sit in the sun, or even sit in the sun room. Neither the nurses, nor patient care technicians, know how to put me in my wheelchair. Seriously. My chair has head controls and it is a bafflement. Most caregivers don't even realize I have head controls. First, they hit the left head pad when they lift the armrest which turns the chair on. Next, they sling me over and place me in the chair. The problem? My head, naturally, rests on the headrest, which accelerates and drives the chair and is beyond my control. Running over a caregiver or running myself into an obstruction are very real consequences of their ignorance. What could be worse? The caregivers remain clueless abo...

On-the-job Sass

I continue getting sass from one particular caregiver. He says, "You need to communicate with us." he continues to completely miss or dismiss the concept of I would if I could . It is part and parcel to having ALS, I am losing my ability to communicate and it is his job to assist me. Part of helping me, like it or not, is to learn my routine and anticipate needs, when possible. He misses the fact that I'm failing more every day and night time is when I'm weakest. It is extremely insensitive and arrogant to expect me to cater to his needs and expectations. Pushing me to repeat words or expound on a simple one word suggestion is physically taxing on my system, adding stress which further depletes me. Cuing is supposed to be caregiver's domain, not the patient's. Here is the situation, I am being changed. In the midst of the action, as seems to be his practice, he is sidelined asking me trivial, meaningless, but energy-sapping questions. Do I want my legs raise...