IntrinsicTina

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...

3 19 What's the worst aspect of having ALS? Is it the continual loss of motor skills?  One day you can no longer lift your own finger? Hand? Arm? Or scratch your own nose when it itches? Or wipe it when it runs? Or pet your own cat? Or hold your husband's hand? Or button your own blouse? Or unzip your favorite blue jeans? Or wipe your own behind? Notice the new stilt in your gait? Trip over air to faceplant on the kitchen floor?  The front porch? Graduate to a cane? Rolling walker? Then a manual wheelchair? A fancy motorized wheelchair? Is it the falling away of friends and family who don't understand my disease process? Admittedly, ALS, amyotrophic lateral  sclerosis, is a scary disease, it's a terminal illness, there are no pluses to this disease, you shrink, shrivel, slobber and, ultimately, die anyway. They are right to be afraid but you are not contagious. And you need support and effective advocacy. The few that visit, are put off by the out of sync speech ...

20   1 I gotta talk about it! I had another scrumptious dining experience, here at Bailey Boushay House! And if you're one of my regular readers, you may get the impression that I only blog about Italian dinners. However, I will tell you now, I'm a foodie. French, Indian, Thai, Japanese, Vietnamese, Columbian, Mexican, Tex-Mex, African, Irish, American. By God, if it's a foodstuff, I'll probably try it and, quite possibly, like it! It's coincidental that I'm, once again, going to rave about the awesome Italian dinner we enjoyed. To mix it up for you, I'm going to start at the end. That's right, if I had the option, I would've had dessert, first. Of course, I may well have cheated myself. Dessert was not particularly Italian, but it was my personal favorite...Creme Brulee´. Imagine this...Chef, clad in his classic chef whites, rolls his silver cart of magic into the roomful of satisfied, yet expectant, diners. Atop his cart, whipped cream, lady fing...

My friend, Peter is meeting with the management of our "home" to discuss ideas on how to make it a better place for ALS patients. What a great idea and a much more positive position to come from than I come from. I'm not exactly certain of the format tomorrow but since I cannot communicate quickly on-the-fly, I better write up a few ideas from my viewpoint. Since ALS robs us of our muscles, but differs in which ones, it's important to be fully educated on the effects of muscle loss by different regions of the body. While nurses learn anatomy and physiology, I don't believe PCT's, CNAs, and such get that education. And, let's face it, book learning is vastly different than hands-on experience. I find the PCT's, by and large, far more adept at attending to the activities of daily living, particularly, if they have experience with people with neurological deficiencies or brain injuries. They should get intensive instruction on ALS. It's remarkable...

My husband asked that I write about my experience as a patient in the skilled nursing facility, Lifecare Center of Federal Way. It's a difficult endeavor due to my many traumatic experiences and the impact of fear and anxiety it left upon me. I hesitate because I don't want to insult the few good souls who made it bearable.  One may wonder why I did not document issues as they occurred. At first, I was unable to write due to the progression of ALS. Although, I owned a speech generating device, it was new and I was unpracticed. Additionally, I was having issues dealing with either frontotemporal disease (FTD) or PseudoBulbar Affect (PBA). My emotions were raw and I was laid open to impulsivity and acting rashly. (It's important to know what these conditions are NOT. They are NOT dementia. They do NOT effect cognition.).  I mention these deficits, not to evoke pity, but to gain understanding. Finally, I was intimidated. Fear of reprisal was more than a vague fear, on at lea...

Picture perfect weather on the banks of Lake Washington, the #2015WalktoDefeatALS was a wonderful event for walkers, drivers, riders, and volunteers. What wasn't to love?! Family, friends, young, old, smiles, hugs, kisses, dogs-on-the-leash. The happy hub-bub of greeting, check-in, t-shirt pick-up, assemblage, live music, a rousing speech by one of our own, team photos, selfies, and departure group by bouyant group. We raise awareness, money, and our spirits. Today we are one in our cause. Today we are not alone in our disease. Today we have hope. Today we matter. I'm so appreciative of my family, my friends, and the surprises I received when my mother showed up as well as my former coworker. Even my sister who's been fighting multiple myeloma showed up in a wheelchair to support me. My mother also showed up in a wheelchair. This is a BIG deal! My daughter traveled from SoCal to walk in this event. My husband's family showed up to walk again this year, his brother and...

In keeping with the solemnity of the day, 9/11, I'm going to chronicle my progression with ALS, my personal 9/11. September 11, 2012, three years ago today, I was diagnosed with ALS. I'm not special or remarkable in any way, I am average.  I'm not a celebrity, sports hero, astrophysicist, best-selling author, doctor, lawyer, nor anybody of note. I am a wife, a mother, an aunt, a niece, a sister, a daughter, grand-dog grandma, and a friend. I was an employee, an accountant, a late-in-life college graduate, an adventurer, a Harley rider, a photographer, a knitter, a crafter, a writer, a hack, a house-painter, a gardener, amateur birder, a hiker, a cook, a traveler, a lawnmower, a pet parent, a dancer, a foodie, a Starbuck's enthusiast, and a gadget geek.  My ALS diagnosis was a complete and utter shock. Though I struggled to not allow ALS to change my life, ultimately, it changed everything. At this point in time, ALS always wins though we fight the valiant fight. Alt...

It's a big ole bummer not being able to talk intelligibly. It affects my very life, my safety. Once again, if I was not so willful, I would've slipped off into the great beyond. It amazes me that I could be fighting for my breathe in front of three registered nurses and a patient care technician, all very competent and caring, but unable to pick up on visual cues that I cannot breathe properly. Allow me to lay this out for you. I'm fully dressed in my power wheelchair and it's time to get me ready for bed. It takes two caregivers to safely prepare me and transfer me from chair to bed. My transfer was attempted by a patient care technician (a strong follower) and a registered nurse (unfamiliar with my care).  To prepare me for bed, required a change to nightclothes. To remove my shirt and bra, they raised my armrests, as required, and bent me forward to unfasten. I went into trouble quickly. Normally, it's a fast procedure and they concentrate on holding up my tors...

Taking care of me is no easy task. As a person with ALS who has been made a quadriplegic by the disease, I require a Helluva lot of care. All of my activities of daily living (ADL's) need to be done by others. Telling somebody this does not begin to quantify the myriad details that must occur to keep me safe, healthy, relatively comfortable, and happy (or is the word  engaged). I rely on caregivers to feed, clothe, and medicate me. They change my position in bed and change my soiled briefs. They bathe me, brush my hair, brush my teeth, shave my legs and pits, shampoo my hair, set me up on the commode, apply antibacterial powder under my breasts, make up to my face, and Calazine to my bottom. Even this level of detail doesn't tell the whole story. They transfer me from bed to power wheelchair and back, from bed to shower chair and back, from bed to shower chair to accessible bathtub and back, again. To accomplish these moves, they must use slings for the built-in lifts. They...