I am not-so-independent but wish I were more so. Stopped driving due to the rapid onset and pervasive weakness especially in my right-dominate hand. Sold my Harley Davidson Deluxe and Subaru Outback, shopping for an economical wheelchair van (Dodge or Chrysler?). Legs getting weak, balance is not-so-good but I do all I can to preserve what I have: good nutrition, supplements, water aerobics, arthosage and manual ligament therapy.
I'm getting limited care at the University of Washington in Seattle but get nowhere when I've mentioned voice-banking. Hmmm. Considering Virginia Mason as most of my PALS friends get fabulous care. We are active in our local ALS support group.
I am on social security disability and Medicare (which I've paid into all of my working years) but I lost my job at the onset of my symptoms. Was working as an accountant for a small mfg business who tried to coerce me to commit blatant fraud. I got super-stressed as I held to my integrity. My fingers seized (odd or God?) and I filed an injury claim, thinking carpal tunnel, (that I repaid when the ALS was uncovered).
My husband and I have been married for 13 years and each have one grown daughter from our respective previous marriages. We maintain a modest two bedroom, two bathroom, manufactured home for the enjoyment and comfort of one spoiled cat. My husband keeps working to keep us afloat and in good healthcare benefits. Luckily, we've lived below our means and shouldn't lose any necessities due to this disease. Thank goodness for the ALSA loan closet which really helps. Home mods are next up for us. Need a bathroom remodel, doors widened, and a rear entrance off the master suite. Currently taking bids. That's new for me as a dedicated DIY person.
I have a strong faith in God and long ago accepted Jesus Christ as my Lord and Savior but I am untethered from a specific church. I recently reconnected with my favorite pastor who was instrumental in my sobriety and married my husband and I. Bittersweet to tell him about the ALS. Faith has been a deeply personal and semi-private matter for me. Without my faith, I would not be sober, married, or have the strength to face down this disease. I am not much for quoting scripture so let's not go there.
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