my symptoms snapshot jan 2022 (incl dec/nov 2021)

jan 2022 snapshot

• lose my balance/stumble rearwards 20x/day (retropulsion), and at times to the right at night. 
  
  
• near daily, random swallowing when throat/lung sphincter not sealed thus choke/coughing to clear; extra saliva less swallowing.
  
  
• dribble/drool: edge of mouth starting to leak/drool down cheek when eating or drinking from bottle, and noodles get stuck, as if low muscle control. (since nov 2021) which lines up with neutral face frown. (2012)
• frequent nasal dribble 3x/hr so keep dab tissues handy (2012); urethra dribble post-bathroom (since 2012)
  
  
• my range of motion and fine motor contortions in the shoulders evermore limited to the point I sometimes need help to get my jacket on/off.  as my shoulders don't easily roll forward/back as necessary to micro-contort to get in/out of jackets, i can no longer get into slim fit jackets with fixed seams that dont stretch, was forced to switch to a zipup sweater in dec that stretches to allow me to get it on after a 20-40 second struggle.  sometimes, it too is difficult so I ask for help.  getting my pants up takes 5x longer, getting my left sock on is ever tougher, nearly impossible to bring my foot close enough to reach.
  
  
• my range of motion and fine motor coordination in the hips is such that to stand a chance of getting in and out of the car I need to park next to no car ex end of row or next to a handicap spot so I can use my foot to get my door open wide, then pull on the steering wheel to provide half the strength needed to assist my legs to stand up.  if I park in any way that makes the door heavier like on a slope vs flat ground, I will not be able to get the door open at all.  (since 2020, harder dec 2021)
• new respect/perspective:  i could use one of those self-driving cars with self-opening doors.
  
  
• typing is a slow 3 steps forward 2 steps back process as fingers (left since 2020, right since 20222) randomly double-press keys requiring constant backtracking to make corrections.  and sitting without pain demands higher-end ergnomics.
  
  
• first heard my heels dragging/shuffling on sidewalk (jan 2022) 
• while it feels half like I'm walking tall as ever, half like I'm hunched curled leaning forward no armswing like a zombie/lurch, unable to effect it with my mind, angled store windows confirmed it (jan 2022).
  
• could definitely try a pair of walking sticks to potentially walk more upright (as futile as it may be).
• daily back/neck pain/stiffness; more stubborn 5 day low-grade migraine headaches night and day.

i never want caregiver help dressing/grooming/bathing/toileting from any family member, would rather have a visiting home service or reside at a facility in a mandate-free republic ex FL, TX etc that allows everyone to breathe fresh air without masks/ppe so i can get critical 21% oxygen needed to detox/heal/live optimally.

medical directive summary:  100% open to curative medicine incl salt/mineral/vitamins and bioelectric, hormone, enzyme therapies; 75% open to many mthfr-safe painkiller/sedatives; 50% open to super safe low adversity medicine with 20+ yr longterm adverse risk/benefit safety studies; 25% open to minimal physio rehab; not very open to most allopathic treatments that often later discover unrecognized risks inherent.  in contrast, more open to functional medicine (mthfr-methylation astute), systems medicine (dr. shiva), and bioelectric therapies incl vibration/sonic/laser that make some logical sense. 

dec 2021 snapshot

the neuropathic shakes the tremors and the weakness are spreading another notable 5% from the left side to the right side making everything more challenging than they were... 

• now harder, weaker (and more wobbly) getting in and out of the shower/car/bed.  
  
• harder getting dressed pulling up pants, getting socks and jacket on/off more difficult.
  
• harder to thumb my nose (peel out a thin clear snakeskin biofilm) which is key to freer nose-breathing with dry turbinates.  i cant blow my nose as there's no power and nothing to clear, except if i get the sniffles/sneeze and it's always clear fluid.  (since 2006, harder in 2021)

energy has been in low supply (since move to WC 2014):

• it now takes 5-10x the focus/energy/effort to do basic routines: groom, dress, stand, eat, toilet visits, vitamin shake making, 15min walks, driving to fetch 2 meals a day, running 1-2 token errands/day ex 4 item grocery lists and amazon returns, and 2-4 painful hours of surfing/sifting through health information.  
• not much reserve energy and coordination needed to make things as tidy as before ex making the bed, tidying the room or car, it's now all base tasks/function first and style/appearances last.

and besides the visible issues...

• tremors
• weakness 
• limited range of motion
• muscle stiffness/tension ex upper back and neck
• muscle cramping instantly on a dime ex hams/calves/feet
• losing muscle coordination and flexibility, strength and muscle density

what really bothers more are the invisible, more annoying and threatening issues that outnumber visibles by double...

• nose-breathing hurdles
• spells of high blood vessel/pressure and heartbeat/bpm
• the drool/dribble from sphincter/valves not adequately sealed in body
• ex throat/lung thus the choking/cough fits on swallowing errors 
• ex urethra/uranus between bathroom visits thus hints of incontinence (front 2012, back 2021)
  
  
• chronic 3 day cycle constipation with no urges, then it's 80% forced, very little natural 'movement'.
• frequent urges to pee tiny amounts day/night that interrupts sleep (5 sec stream, 90 sec dribble).
  
• internal thermostat askew: sensitivity to hot and cold, at times half the body can be too warm, the other half too cool at the same time (makes sleep extra difficult to navigate at times).

• random tongue and cheek biting day/night; periodically wake with fresh tongue nips that sting all day.
• waxy skin patches, skin peel and flaky dry patches.
• restless, anxious and phobic spells.

nothing's easy, everything's a pain in the ass, even eating I have to focus:

• on chewing small bites and not choking when I randomly swallow what's in the back half of my mouth: sleeping, eating, or just sitting there.  new norm: chunks of food slipping down the throat while chewing.
• on overcoming the struggle to cut my food.
  
• if it's PD, many end up losing the sense of smell which is half the sense of taste thus joy of eating; dread.

another challenge to mealtime is the excess back pain/stiffness from seated/upright posture. sometimes it kills me by the end of a meal or halfway into the meal I'm forced to recline the mid back for 5-10min to calm it down.  

nov 2021 snapshot

• had military posture with jutted neck for 53 years (until 2019), then strong/painful forces started pulling it into a forward lean stooped posture (2020+).  
• low L4 back pain rose to mid-upper backpain (2019) then into neck pain/stiffness/tension (2021); all profound and don't respond to cbd, aspirin, etc.
  
  
• dexterity/flexibility/contortion fine-motor impaired; it takes me twice as long to do everything and get from A to B with half the coordination which makes dressing, grooming, walking, driving, standing up and getting in/out of the car/bed/clothes evermore difficult.  without the fine-motor adjustment/contortions we make to slink/wiggle muscles/joints required to scoot over on a bench, to get arms in/out of sleeves, to get things in/out of a pocket one-handed, to get things open (food/drink/pill jars) without making a mess spilling, many routines are near impossible.  (gradual 2020+)
  
  
• low energy: every task is tougher, all movement demands 5x more, if not all of, my focus/energy.  nothing is trivial so it forces me to be very judicious in everything i do, challenged to accomplish basic routines to move/dress/groom, run errands/eat/exercise.  days seem short, could use 5x more to accomplish more.

• frequent random swallowing errors, where everything in the back half of mouth drops but the throat/lung sphincter is not sealed causing choking/coughing fits, force me to eat small bites and to not fall asleep reclining on back. (2019)  
• edge of mouth starting to leak/drool saliva day/night down cheek when drinking from bottle as if low muscle control. (2021)
  
• random periodic tongue biting.  (nov 2021)
  

• lose my balance/stumble to rear 5x/day. (2020)
• instead of my legs moving as i want, often they 'freeze' as if stuck to the floor, just shake in place. (2020)
  
  
• getting socks, pants and jacket on/off are all getting tougher by the week, some days it's a super challenging  (nov 2021)
• can't park car facing uphill and get door open; some days to stand-up i must pull myself up on the steering wheel. (2021)
  
• frequent urges to pee tiny amounts, no urges to poop, low peristalsis, post-bathroom dribble; hints incontinence. (2012) 
  
  
• trouble nose-breathing (since 2006).  to breathe more freely, i use thumb to peel a thin clear biofilm layer 3x/day and just before bed, carry tissue in pocket to dab a nasal drip 7x/day which dries into this biofilm. (2014)
  

• tinnitus and aversion to bright high pitch sounds; nasal lispy, tinny, squeaky, slurpy, klinky kitchen dish/utensil noise.  (2012)
• aversion to bright light/glare; night driving re headlights/brights near impossible, also irritates during daytime.  (2014)
• tight right turns is a bit of a challenge (2020); foot fumbles a bit moving from brake to gas pedal. (2021)

• at times, mild choker sensation front of neck and can come to feel unsettling.
• if I feel extra edgy unsettled snarky irritable then I know there's some acute pinch or inflammation of nerve tissue. 

sleep issues

most nights can be initially troublesome, usually get to sleep 12-2a, but every 3 nights tension in neck/body can disrupt sleep from 2-5a.  so now, if not drowsy, i can get a bit anxious/hesitant getting into bed unsure if it's going to go smoothly or not.

• to get to sleep, i take 10mg hydroxyzine nightly, at times 20-30mg if excess neck pain/stiffness/tension at play.  (2021)