Purpose:ALS (Amyotrophic Lateral Sclerosis)(Started Dec 05, 2007)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Jan 14, 2009
Daily
Major
None
Always
Not at all
Sep 17, 2008
Daily
Major
None
Always
Not at all
Date
Jan 14, 2009
Advice & Tips
As the caregiver for my husband Pat, the pacer hasn't been any big deal. I "unplug" and "plug him in as needed..(unplug for showering, plug in for all day use). He wears a "murse" around his waist to hold the pacer unit. (A "murse" is a fanny pack, Pat just didnt' want to call it a fanny pack so it was dubbed a "murse" by our daughter.) Pat barely qualified for the study when he was implanted 1 year ago. Today his FVC hovers between 25 and 32 percent, depending on the day, and the clinic. Considering his FVC had fallen from 70% to 52% in the three months prior to beginning the study, I consider the pacer a HUGE success for Pat.
Pat just started using s sip and puff ventilator last week. However, I think without the pacer, he would have started using it months ago.
We haven't had any reall issues as far as any maintenance. We did have a wire break about 6 months ago, but it was repaired in Cleveland at one of our visits. We still receive support from Dr. Onders and Maryjo even tho we officially finished with the study in December. If anyone has any questions, feel free to contact me or Pat.
~Jenny, CALS to Pat
Purpose:ALS (Amyotrophic Lateral Sclerosis)(Started Oct 29, 2010)
Date
Dosage
Perceived effectiveness
Side Effects
Adherence
Burden
Sep 30, 2011
12 hr
Daily
Major
None
Always
Not at all
Nov 30, 2010
12 hr
Daily
Slight
None
Always
Not at all
Date
Sep 30, 2011
Advice & Tips
I have been using the pacer now for about a year. Over that time, I have sent the unit back to University Hospital in Cleveland several times to "tweak" the parameters to allow for maximum benefit with no discomfort. Currently, I have the pacer fairly optimized to me, and I use it approximately 12 hours per day while I am sleeping. To date, I have experienced very favorable results. My FVC scores over the last year have been very steady as a result of using the pacer daily. Now that it is FDA approved for use in ALS patients, I would highly recommend considering this device. Once the wires are implanted, it is very easy to use and has proved to be very beneficial and has improved my quality of life significantly.
Date
Nov 30, 2010
Advice & Tips
I had the pacer along with a PEG tube implanted about one month ago. The procedure itself was fairly painless and recovery time was minimal, only about a week. The surgery for the pacer is a orthoscopic procedure where only 4 small incisions are made in the abdomen. The wires of the implant come out of the body just under the breast and are attached to a small plug which is taped to the body just under the breast. The pacer is actually an external device which is attached to the plug when using it. I use my pacer approximately 16 hours per day. I use it primarily through the night with no discomfort. I am hoping that the use of the pacer allows me to keep my diaphragm muscles from atrophy. Time will tell.
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
Date
Aug 30, 2012
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
Date
Jun 18, 2012
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
Date
Apr 24, 2012
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.
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