IntrinsicTina

Despair!  I haven't blogged for days because I am ashamed to admit my feelings at this point in time. Up until recently, I have been surprised at my acceptance at having a terminal illness.  I have been kind and considerate of other people's time, energy, and willingness.  I have been patient until people can work me in.  I have waxed eloquent when speaking publicly, citing how God has my back and holds me in the palm of His hand.  But lately, I resemble something akin to Godzilla.  I am frustrated when someone promises to do something for me and "forgets" to pick me up or changes their plans late in the game, not allowing me time to make new arrangements.  When I was able-bodied, it was no big deal but today it means I don't get to eat, I run out of water, have to walk around in bedclothes, soil myself, or go without therapies that are critical to maintain what muscle mass I have left. My husband works the graveyard shift for a sheet metal outfit,...

I never mastered the perfect spiral on a football...but I played a mean game of hoops for a short white girl.

I don't know what can be more volatile than dealing with a Power of Attorney; durable, general, or limited. It feels as if I'm signing away my rights, as well as my power; to sell my car, to sell my portion of property, to even have a say in how I am treated prior to and after my death.   My husband and I are wrestling with that question now. He asks, "What's the big deal? It's so simple."  While my brain screams, "How can you not get this?  And how can you be so callous?!" ALS is robbing me of physical control. This feels like my last bastion of control and the "what ifs" abound.    What if you decide you don't love me anymore? What if you get sick of all this stuff and leave? What if you fall in love again and I'm still alive and physically incapacitated?   What if two years down the road, (I am unable to have sex or you're not inclined to have sex with me), and you have a dalliance with either a caregiver or a stranger? Wh...

The good news is that my FRS (Functional Rating Scale) remained the same at 29. Bad-ish news is that my lung function FVC (Forced Vital Capacity) went from 110% in January 2013 to 98% in April (today). What's really going on? Head-to-Toe: Breathing is good, swallowing is mostly good (must be mindful, avoiding popcorn, small pills do not trigger swallowing), no drooling. Woo-hoo! Cannot write (right-handed), fingers curl inward and tremor or trigger upon effort to use, much atrophy and muscle spasming, cannot raise right hand/arm, "frozen shoulder" resolved through massage therapy. Left hand beginning to atrophy and lose strength and dexterity. Employing speech recognition software to "write" with computer. I walk with assistance, cane or walker. Painfully slow on stairs and shaky. Cannot recover from falls. Use power wheelchair in my home. No wheelchair van, yet. Can get severe muscle spasms in thighs, calves, and feet. Eating requires assistance to cut ...

Where on earth did I pick up ALS?  Some say sporadic ALS may be caused by toxin build-up from our environment.  I'd like to chronicle my exposures as I understand them. I did not serve in the military but I was a Navy brat, moving from place to place.  Some of the suspicious places we lived would be any military housing and we lived in some lulus!  Inadequate navy housing located near Signal Hill in Long Beach, California was a filthy installation, riddled with cockroaches.  Bug bombs were a common ritual and the clean-up was performed by yours truly as a grade schooler.  I remember the scent and taste of the insecticide as we were required to scrub using elbow grease, a rag, and a bucket of water.  The place was surrounded by oil wells and we drank tap water exclusively.  Additionally, we lived in Cabrillo Naval Housing, Tierra Santa Naval Housing and a string of cheap apartments where we always battled cockroaches with aerosol poisons. Throu...

We have added a naturopathic doctor to my care team. A Bastyr-trained teacher, she works out of Edmonds Wellness Center, some 40+ miles north of us. Dr. G administers my once-per-week Glutathione IV which is a powerful antioxidant that is supposed to halt cell death. Of course, ALS has no cure. We are aiming for slowed progression of symptoms particularly with regard to speech, swallowing, and breathing. So far, so good. Additionally, we've been giving homeopathy a try at the Doc's behest.  She thinks the combination of glutathione and homeopathic remedies can slow this rapid progression of ALS.  Our "eggs are in her basket" so to speak.  My first try was lackluster.  The second caused a dramatic setback, increasing fasciculations, decreasing energy and strength.  While we saw this as a bad omen, the Doc saw it different.  She thought the reaction was indicative of the right combination needed to combat my symptoms.  We have decided to give it anothe...