• 27May

  Can’t Wait

  ALS 4 Comments

  

  In 3 short weeks we will be in Hawaii for 10 days.  These are the temps for this week, I can’t wait!!

   

• 27May

  Physical Status (5/27)

  ALS No Comments

  Left Leg - still 100%, rare fasciculations, no cramping, no atrophy
  Right Leg - still 100%, no fasciculations, no cramping, no atrophy

  Left Hand - about 60%, frequent fasciculations, less cramping, little atrophy
  Right Hand - about 70% about 65%, frequent fasciculations, less more cramping, little atrophy

  Left Arm - about 95% about 75%, frequent fasciculations, some cramping, atrophy showing
  Right Arm - about 90% about 80%, frequent fasciculations, some cramping, atrophy showing

  Neck - rare fasciculations

  Phrases Recorded - 6 out of 20 ALL

  ————————————-

  My right arm and hand seem much weaker now.  But I finished recording all of the phrases you’all suggested, thanks again.  I will upload some for your enjoyment!

• 26May

  New Theme

  Things 2 Comments

  What the heck, it’s so easy to change I thought I try something new.

• 21May

  Physical Status (5/21)

  ALS, Music Videos 1 Comment

  Left Leg - still 100%, rare fasciculations, no cramping, no atrophy
  Right Leg - still 100%, no fasciculations, no cramping, no atrophy

  Left Hand - about 60%, frequent fasciculations, less cramping, little atrophy
  Right Hand - about 70%, frequent fasciculations, less cramping, little atrophy

  Left Arm - about 95%, frequent fasciculations, some cramping, atrophy showing
  Right Arm - still 100% about 90%, frequent fasciculations, some cramping, atrophy showing

  Neck - rare fasciculations

  Phrases Recorded - 6 out of 20

  ————————————-

• 16May

  “Benefits” of ALS

  ALS 1 Comment

  I wouldn’t really call them benefits, but being DX’d with ALS permits me to get Medicare only 5 months after going on disability instead of 2 years, AND a Handicap Placard. I have one like this:

  

  This is from the California DMV website:

  Parking privileges for DP placard, DP plates or DV plates

  • In parking spaces with the International Symbol of Access (wheelchair symbol).
  • Next to a blue curb authorized for handicap parking.
  • Next to a green curb (green curbs indicate limited time parking) for as long as you wish. There is no time limit with a DP placard, DP license plates, or DV license plates.
  • In an on-street metered parking space at no charge.
  • In an area that indicates it requires a resident or merchant permit.

  In addition to parking privileges, service stations must refuel a disabled person’s vehicle at self-service rates unless the service facility has only one employee on duty.

  Parking privilege limitations

  You cannot park:

  • In spaces marked with a crosshatched pattern next to a parking space with the International Symbol of Access (wheelchair symbol). These spaces are for wheelchair and wheelchair lift access.
  • Next to red curbs, which indicate no stopping, standing, or parking.
  • Next to yellow curbs, which are for commercial vehicles to load and unload passengers or freight.
  • Next to white curbs, which are for loading and unloading passengers or depositing mail in an adjacent mailbox.
• 16May

  Phrases to Record

  ALS 5 Comments

  Mostly for me, but here are all of the suggestions for phrases I need to record, SOON!  THANK YOU ALL!!   I had a business call yesterday and my voice went way nasal, like a deaf person talking.  Apparently my ’soft pallet’ is weaker due to atrophy and won’t close properly some times…  This sucks!

  Originals:
  “I love you”
  the names of my kids and wife
  “I’ll be in the car”
  “what time is dinner?”
  “Hon come here please”
  “(any name in the family) “will you pick that up please?”
  “Tucker, get down”
  “Tucker, you are a good dog”

  Anne:
  “I NEED TO PEE!!!!”
  “I just soiled myself, help..?”
  “Thank you very much, dear”
  “Scratch my back, please! (and add in up/down/left/right. more towards up/down/left/right)”
  “Tucker, here boy! Come to papa!” (i think your wife and kids will have a kick at that one)
  “(cue a laugh / sigh / ‘uh huh, go on..’)”
  “Water/Coffee/Tea/favourite drink.”
  “Oxygen.” (for later later on, i’ve read it becomes really tiring, you’ll need that too.)
  “I’m feeling cold/hot.”

  carlos:
  “when do we leave?”
  “how long will you be gone?”
  “what’s for breakfast (lunch, dinner)?”
  “pass the _____ please?”

  add your favorite expressions… i don’t know what they are, but i think that might help with people you know on a daily basis…

  “dude!”
  “what up?”
  “good morning”
  “catch ya later”

  bonnie:
  How about “what time is dinner?”
  “Hon come here please”
  (any name in the family, “will you pick that up please?”

• 14May

  Physical Status (5/14)

  ALS, Physical Status 4 Comments

  Left Leg - still 100%, rare fasciculations, no cramping, no atrophy
  Right Leg - still 100%, no fasciculations, no cramping, no atrophy

  Left Hand - about 60%, frequent fasciculations, less cramping, little atrophy
  Right Hand - about 70%, frequent fasciculations, less cramping, little atrophy

  Left Arm - about 95%, frequent fasciculations, some cramping, atrophy showing
  Right Arm - still 100%, frequent fasciculations, some cramping, atrophy showing

  ————————————-

  Really no big change since last time, but my left leg feels more and more like its about to twitch, it’s hard to describe.

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