Some background, a disclaimer, and a question...
Background: Had my DPS "installed" in June 2013. Pretty unremarkable procedure & recovery; only issue was the grounding wire pulled out about 2 inches a few days after surgery. I'm still 'grounded' (despite what my bride would say!) so other...
Okay, I need to know that I’m not the only one who “plays” with folks about ALS.
So here are a couple of minor confessions about people I have toyed with…
- Wasn’t willing to part with thousands of dollars to have genetic testing done, but at one quarterly ALS clinic visit I was asked if I’d...
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Hi again -
We're looking into Diaphragm Pacing Surgery for my dad and I'd like to hear other people's experiences. His FVC is just under 50% and the lung muscle (rather than the nerve) is what is most severely affected by his ALS. He has strength in his arms/legs/hands and outside of the...
I had a DPS put about a month ago. It's working well for me. But I have one stupid problem and that is keeping the plug dry at shower time. Does anyone have any simple solutions to this.
So Tim had his pulmonary function test and was told he was functioning at 36%. I am so disappointed, and I can see the hurt in his eyes. We still haven't seen the Respiratory specialist, so I am hoping that he will have some good advice. I guess the DPS is out of the question, but will be...
I had my surgery to place Diaphragm Pacing System and feeding tube and all went very well. It looks pretty wired one side of my chest has the tube the other side has a plug in. I think I'm turning into a vacuum cleaner lol. I did have issues with with antithesis and spent 5 days in the hosp. And...
I just had my regular visit with ALS the clinic. It could have been better.setting up appointments for a feeding tube and a diaphragm pacing system. I need to have an EMG to see if I still have active nerve action to the diaphragm. If everything checks out on the positive side they will do both...
Will I be able to use my gait belt again after my diaphragm pacing surgery (DPS)? Maybe not at first, but I would like to think I could use one again after I am feeling better. I would like to hear from others who have had the surgery (or know of someone who has had the surgery) and are...
Will I be able to use my gait belt again after my diaphragm pacing surgery (DPS)? Maybe not at first, but I would like to think I could use one again after I am feeling better. I would like to hear from others who have had the surgery (or know of someone who has had the surgery) and are...
Hello everyone, I'm new to the forum and have been using some questions about my dad. He was recently told by his doctor he thinks he has it by the sound of his voice. He started having symptoms a little over a year ago. He started to lose the dexterity in his fingers on his right hand. It just...
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