• Effectiveness

  Can't tell (for amyotrophic lateral sclerosis)
• Side effects

  None (for Overall)
• Adherence

  Usually
• Burden

  A little hard to take

Dosage: 10 hr Daily

Advice & Tips: Stopped because I don't want my breathing muscles to outlast my hands/swallowing.

Cost: < $25 monthly

• Effectiveness

  Moderate (for amyotrophic lateral sclerosis)
• Side effects

  Moderate (for Overall) (breathing difficulty, difficulty speaking when machine is on, anxious mood)
• Adherence

  Always
• Burden

  Not at all hard to take

Dosage: 14 hr Daily

Advice & Tips: After a trip to Maui where I found it difficult to relax, I realized there is a general level of discomfort and anxiety when I have the pacer on. On a trial basis, I'm cutting my usage to about 14 hours/day, from 6pm-8am. So far, after about a week of this usage I am feeling better during the day.

Cost: < $25 monthly

• Effectiveness

  Moderate (for amyotrophic lateral sclerosis)
• Side effects

  Mild (for Overall) (breathing difficulty, difficulty speaking when machine is on, anxious mood)
• Adherence

  Always
• Burden

  A little hard to take

Dosage: 23 hr Daily

Advice & Tips: I now have the pacer on about 23 hours per day. I'm no longer feeling the need to shut it off for an hour or so like I was a couple months ago. I would say that I've finally acclimated to it. One month ago at ALS clinic my FVC and MIP measurements were both up, to 73% and 47 respectively. I take this as a sign that the DPS is helping to stabilize my breathing ability. (Perhaps also I'm getting better at taking the test!) All costs except a $100 hospital co-pay are paid by my Medicare HMO. Replacement batteries, cables, and connector bandages are also covered, at 100%.

Cost: < $25 monthly

• Effectiveness

  Can't tell (for amyotrophic lateral sclerosis)
• Side effects

  Moderate (for Overall) (breathing difficulty, difficulty speaking when machine is on, anxious mood)
• Adherence

  Usually
• Burden

  A little hard to take

Dosage: 16 hr Daily

Advice & Tips: My setting were last increased on 5/23/12. Now it wears me out. I try to have the pacer on all day and night but my breathing muscles tire and I need to turn it off for a while and/or use my bipap more during the day. So my pacer usage is down from 23 to about 16 hours/day. And my bipap usage has increased to about 14 hrs/day. I will see the neurologist and DPS medical team on Wednesday and I'm going to request my pacer settings be reduced to the level they were 4 weeks ago. I'm thinking the setting is too high now. I sleep very well with the pacer going though. I wake rested and comfortable and just want to keep lying there in comfort. My breathing syncs with it while I'm asleep but during the day it doesn't and that may be part of the problem. Does it work? This is the big question and I can't answer that any more than I can answer whether Rilutek works. It hasn't made my breathing better but it's only supposed to slow the progression. I had a PFT done on 5/29/12 six weeks post-op. My FVC had previously been on a steady pace of -4 points/month but actually increased from 49% in March to 53% in May. But my MIP decreased from 48 to 37 in the same time period.

Cost: < $25 monthly

• Effectiveness

  None (for amyotrophic lateral sclerosis)
• Side effects

  Moderate (for Overall) (breathing difficulty, difficulty speaking when machine is on, anxious mood)
• Adherence

  Usually
• Burden

  Somewhat hard to take

Dosage: 16 hr Daily

Advice & Tips: I've only had the pacer implanted just under two weeks ago. I'm experiencing some perhaps typical adjustments. - 1. Learning to shower and change the dressing, 2. Getting used to the feel of it, 3. Occasional problems with the cable getting tugged on. I don't see any benefit yet. If anything, breathing is a little more labored than it was before surgery.

Cost: < $25 monthly