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. Although I was healthy my whole life, never breaking a bone, my only surgeries, a tonsilectomy in the 70's and a c-section in the 80's, I end up with ALS.
Today, my newest symptom (or manifestation) is fasciculations in or around my heart. Troubling. I continue to have increasing fasciculations...everywhere...my eye, nose and lip quiver and lift as if by an invisible thread. Larger muscle spasms are also on the increase, sometimes temporarily locking my jaw, neck, feet, toes, and fingers.My hands have been paralyzed for a long time; so, I ask you why does my middle finger on my right hand come to life and give the world the anti-finger?!
I'm still eating solid foods but have to be highly selective, avoiding mixed textures, dry foods, large bites. That's the same but my diet was officially downgraded. I avoid drinking by mouth, opting for toothette swabs soaked in water to moisten my mouth; I barely use my nifty gravity cup anymore. Digestion is a crap shoot, sometimes, literally. There is no status quo.
Breathing is interesting. When I slide down in bed, my breathing labours. Upon awakening, my whole body spasms from head to toes, particularly, my chest and diaphragm. I gasp and struggle to regain a regular pace. Also, troubling.
My Permobile M300 wheelchair got outfitted with head controls since my left hand and arm gave up the ghost. After all my duck-to-water modifications, this one's a lulu! This is difficult to adjust to. Finding the different controls is just not intuitive and requires too much caregiver intervention. I got mine two days before my 2 and 1\2-mile #2015WalktoDefeatALS and I had to leave the driving to my husband.
Due to the lack of a navigable chair and lack of staff qualified to transfer me, I spend days in my bed. Not really my idea of life. Thank goodness my room is so pleasant and my husband visits. I'm also getting more friend visits and my daughter still visits often. So grateful for that!
Medications are still minimal but I've been forced to use morphine and oxycodone for breakout pain events only. I drive the nurses crazy refusing pain meds in favor of non-chemical soothers; range of motion, massage, ice, heat, repositioning, and MSM cream. I have had to resort to laxatives, stool softeners, and suppositories. Oh my!
I'm silently contemplating tracheotomy and ventilation as a means of extending my life.
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. Although I was healthy my whole life, never breaking a bone, my only surgeries, a tonsilectomy in the 70's and a c-section in the 80's, I end up with ALS.
Today, my newest symptom (or manifestation) is fasciculations in or around my heart. Troubling. I continue to have increasing fasciculations...everywhere...my eye, nose and lip quiver and lift as if by an invisible thread. Larger muscle spasms are also on the increase, sometimes temporarily locking my jaw, neck, feet, toes, and fingers.My hands have been paralyzed for a long time; so, I ask you why does my middle finger on my right hand come to life and give the world the anti-finger?!
I'm still eating solid foods but have to be highly selective, avoiding mixed textures, dry foods, large bites. That's the same but my diet was officially downgraded. I avoid drinking by mouth, opting for toothette swabs soaked in water to moisten my mouth; I barely use my nifty gravity cup anymore. Digestion is a crap shoot, sometimes, literally. There is no status quo.
Breathing is interesting. When I slide down in bed, my breathing labours. Upon awakening, my whole body spasms from head to toes, particularly, my chest and diaphragm. I gasp and struggle to regain a regular pace. Also, troubling.
My Permobile M300 wheelchair got outfitted with head controls since my left hand and arm gave up the ghost. After all my duck-to-water modifications, this one's a lulu! This is difficult to adjust to. Finding the different controls is just not intuitive and requires too much caregiver intervention. I got mine two days before my 2 and 1\2-mile #2015WalktoDefeatALS and I had to leave the driving to my husband.
Due to the lack of a navigable chair and lack of staff qualified to transfer me, I spend days in my bed. Not really my idea of life. Thank goodness my room is so pleasant and my husband visits. I'm also getting more friend visits and my daughter still visits often. So grateful for that!
Medications are still minimal but I've been forced to use morphine and oxycodone for breakout pain events only. I drive the nurses crazy refusing pain meds in favor of non-chemical soothers; range of motion, massage, ice, heat, repositioning, and MSM cream. I have had to resort to laxatives, stool softeners, and suppositories. Oh my!
I'm silently contemplating tracheotomy and ventilation as a means of extending my life.
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