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Tom,
as always thank you for your info:
I really understand the deniveration thought for the diaphragm and such, it all makes so much sense to me. I have wondered may of the same things that you asked your Doc. I am looking forward to your posts, and I am so grateful for your effort. Please, please continue to share wit us.. I am so interested and love learning..
 
tmasters,

I do not have a thorough medical background . . . but I would suggest the signal from the pacer for the diaphragm is (". . . sometimes . . .") reaching areas sensitive for the 'thoraco-abdominal' nerves (". . . they supply the Rectus abdominis . . ."), which controls the stomach muscles ('six pack'). The Rectus abdominis is not the diaphragm muscle and there probably is no reason to stimulate it to support breathing. While I do not believe this is medically harmful, repositioning a stimulator contact (additional surgery) or decreasing the signal strength to the effecting contact might be helpful. You might be the first to report this sort of issue but I remember reading elsewhere, the need to reposition stimulator contact(s) is presidented.

Whether to inhale or exhale, well it would certainly be nice that the pacer causes both . . . but I have not read patient commentary on this point and, unfortunately, I have yet to actually meet a pacing ALS patient.
 
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Tom,

What a well written, helpful extremely informative post. Thank you so much for taking the time.

One thing I don't understand, is, your doctor's simple explanation to you said that the diaphragm doesn't fatigue like other muscles—that part makes sense because it is not composed of skeletal muscle—but then, why is it that we commonly are told that bipap is helpful because it gives the diaphragm a chance to rest? I wonder if resting the diaphragm has nothing to do with bipap helping, and that its just the breathing efficiently while using it that helps us.
 
HI there,
I just wanted to post and leave this link to an article about my husband Pat and his experience with the Diaphragm Pacer. He was part of the original clinical trial when he was implanted in Dec. of 2007, by Dr. Onders in Cleveland. He still uses the pacer and we haven't had any trouble with it. The article explains how he is doing today, and some of our experiences with the pacer.
A Closer Look: Diaphragm Pacing System | MDA/ALS Newsmagazine

I just wanted to confirm that you don't need to keep the wires and junction piece dry. Pat has been getting it wet for 4 years in the shower. He even went in the ocean with it when we were in Hawaii in 2008! We kept it dry right after surgery and as it healed, but after that, it's no problem getting it wet!

I really feel like the pacer made a huge difference in his ALS "journey." Pat did not have the phrenic nerve test so I can't speak to that. However, if you qualify, the pacer will give you more benefits over time, than the short amount of time it takes to do the phonic nerve test. I would say the pay off is definitely worth it.

I would highly recommend talking to your doc to see if you can find out if you qualify. Yes, surgery is hard, but these guys know what they are doing, and again, the payoff is great.

Please let me know if you have any question. I will tell you though that we are leaving in 2 hours to drive over to Montana today for our daughter's college graduation. It's an 11 hour drive so I will be out of touch most of today. I will get back to you as soon as I can!

Take care,
Jenny
 
Tom, We too appreciate your very descriptive story of your pacer and all the ins and outs of it. We hope for you continual success and many years of quality life because of it.

Rick was at 53% diaphragm function a year ago January. We don't know what it is now. We were told that he is so compatable with his Bipap that he has no need for the pacer. I wonder if maybe he is already too low in function to be a candidate or if the phrenic nerve is too bad.

He is short of breath and takes a nap each afternoon on the Bipap. Otherwise he is very weak and gasps air through his mouth...... and breaks out in a sweat. His heart is beginning to beat more rapidly, as he lacks air..... and we know the lungs and heart work together. The heart will soon react negatively, I would expect.

Rick is still ambulatory, but staggers. He is losing function of his hands slowly, and occasionally chokes on food and slurs a word here and there. This year we see progression.

It's the diaphragm function we are most concerned with, as he still has quality of life and could benefit from more complete breathing. He still drives and is active doing tax returns and treasurer of the Elks Lodge locally.

Thanks for listening. Any comments are appreciated. We will continue to read your updates... and those from other PALS as well... Thank you. MW
 
Neglected to mention that Rick uses the Bipap, of course, all through every night's sleep.
 
Thanks to all who have written and shared their experiences here.

Jenny, I read your husband Pat's story over and over while making my decision. It was very informative and inspirational. Thank you both. I even brought a copy of the article with me on surgery day and left it with my family in the waiting room for more background on the DPS.

I'm curious to know from anyone who's been using DPS for a while whether it actually breathes for you or significantly contracts the diaphragm muscle, or whether it works more passively. I'm wondering what to expect long term, after they finish cranking up the voltage. Am I going to have to sync my breathing rate to it?

It's 3 weeks now since my surgery so I guess it's time for a little update. I usually forget the device is on, and it's on about 16-20 hours per day. The only time I can't ignore it is when I'm trying to nod off to sleep. I find if I put pressure in a certain spot on my ribs I can reduce the sensation, so I rest my arm there as I'm falling asleep.

I still don't think my breathing is back to the level it was at pre-surgery. Close, but not quite. It's a bit of a labor to breathe without the BIPAP. I'm still very hopeful it will be, or at least that the DPS will keep my FVC holding steady.

I was supposed to meet again with the neuro and his team at Cedars-Sinai yesterday, but it didn't happen. I have to wait until next Wednesday. I'm actually a little relieved in one way, as I don't think I'm ready yet for an increase in electric current.

We have a pretty stable routine now for dressing the site. It gets soaked in the shower every day, so we immediately pull the old dressing (2x2 gauze pad and paper tape) off and dry everything off with alcohol and put a new one on. There have been a couple times when the wires got tugged during the day when the connector holder didn't work, but so far they haven't pulled out of the skin. (We're getting more careful.)

-Tom
 
I was at an event with Augie yesterday and I was asking him for advice on the DPS. He said to keep working with it as much as I can, it will help my diaphragm, and make me a better lover! Haha, that last part I think he put in for my wife to see.

-Tom
 
tmasters,
re: "Am I going to have to sync my breathing rate to it?"

My understanding is your 'natural' breathe is the usual trigger for the DPS, so it is already synchronized.
 
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