Forum Replies Created

  • Ray Chandler

    October 21, 2019 at 6:53 pm in reply to: Smoking and ALS

    Yes I think my smoking was one of many contributors to ALS.  I stopped in 97 but still think it may have contributed but is not solely responsible.  There are way too many ‘could haves.’

  • I don’t think it is a very good measure but like Riluzole it’s all we have.  My current score is 41 but could easily be 38 or 39 depending on how I answer.

    For starters – turning in bed.  At diagnosis I was answering this one with ‘slow and clumsy’.  Turns out it was the bed and not me.  We got a new bed and now the answer is ‘normal function’.  +1 point with no other changes.

    Alternate ways of dressing – some scales include sitting to dress as an alternate method, some do not.  I would consider intermittent assistance or zipper pulls to rate this score but not sitting to get dressed as I often did this prior to diagnosis.  I now cannot get dressed without sitting so maybe this degradation is enough to put me in this category or maybe not.  Another +/- 1 point swing.

    Use of bipap – I was placed on a bipap due to sleep apnea and not degraded breathing.  My respiratory numbers are fairly consistent for at least 2 years.  If I check ‘use at night’ I have a -2 point swing.  It only goes from None – Intermittent – Night with no in between so you instantly get a 2 point deduction for something which may not (or may) have to do with ALS.  I think the first check needs to read ‘None or use other than for breathing difficulties’.

    Lastly – handwriting.  Although I hardly ever hand write anything any more, printing is slow but certainly not sloppy or difficult to read.  Signing my name is becoming more of a difficulty as my hand is becoming slow to respond to my brains commands but it is not illegible.  +/- 1 point.

    The scale very much needs to be more granular.  I saw a presentation given where the scale was broken down to a 71 point scale for use with PLS.  This needs to be considered for all versions of MND if a scale like this is used as our measure of progression.

    My personal scale is broken down into sections:

    Bulbar – 12 total points – speech, salivation, swallowing at 4 points each.  12/12 gives me 100% total bulbar.

    Arms – 8 total points – handwriting, utensil handling (or tube feeding) at 4 points each.  My handwriting total comes out to 75% making my Arm total function 88%.

    Body Core/Coordination – 8 total points – dressing/hygiene, turning in bed at 4 points each.  My dressing score is 75% making my Body Core/Coordination score total 88%.

    Legs – 8 total points – walking, stair climbing at 4 points each.  My walking score is 50% and stair climbing is 25% making my Legs total 38%.

    Respiratory – 12 total points – dyspnea, orthopnea, respiratory at 4 points each.  I currently have respiratory rated at 100% but could be lower due to use of bipap.

    This gives me an overall function score of 85% (41/48).  This gives me personally a better idea of my overall function as well as seeing each function degradation independently.




  • Ray Chandler

    April 9, 2019 at 1:29 pm in reply to: ALS and compassionate allowance

    Yes that is a SS requirement. There was a bill recently before Congress to waive the waiting period for certain cases (ALS being one) but I don’t know if it was ever brought up for a full vote.

  • My doctor more or less made this decision for me.  He sent my employer a letter stating that I should not be working and they sent me on my way the next day.  I started drawing STD, then LTD.  Not knowing a progression rate or what the future held I didn’t fight this.  I feel like I could still be working although some accommodations would have to have been made.  I cannot return to work now due to SS and LTD benefits.  And I am also becoming weaker so I guess I would have to quit now for sure.


  • Ray Chandler

    April 8, 2019 at 6:40 pm in reply to: ALS and compassionate allowance

    It took about 3 weeks to get approval with benefits kicking in 6 months after quitting work.  SS Disability and Medicare started at the same time.  No visit to the office was required.  I filled out the application online and received a phone call interview from the local office a week or so later.