Ray Chandler
Forum Replies Created
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Sure I do. Have to keep my “support” systems going. Dentist, cardiologist, PCP, dermatologist are all regularly scheduled along with regular neuro and ALS clinic visits.
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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.’
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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
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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.
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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
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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.
Ray