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Colleen82

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Sep 13, 2013
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Reason
Loved one DX
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US
State
Oh
City
Shaker heights
My 62 year old dad was diagnosed with ALS 13 months ago. Until this point we've thought the disease was progressing relatively slow. He has exhibited muscle weakness in his hands, arms, legs, and neck but has continued working half days 5 days a week and continues to maintain most daily activities (sometimes even mowing the lawn!).
One of the strongest symptoms since his diagnosis has been shortness of breath. He has been using the BiPAP treatments for a few months (at night and during naps). After yesterday's appointment, his doctor is very concerned about his breathing and is sending him for more tests.
From my research, it seems as though invasive ventilation (tracheostomy) is the next step.
Has it been anyone else's experience that the breathing is the 'first to go'? Anyone know of other options that could help him? Thoughts on Trache v no Trache at this point (with other functionality still 'in tact')?
I'm just really surprised/upset that we seem to be jumping from "feeling ok, relatively active, spirits high" to invasive ventilation....
Any thoughts or shared experiences would help!
Thanks!
 
Talk to the doctor about a non-invasive, portable option: Trilogy 100. It is portable, can go with him anywhere. My husband uses it all day and evening, then switches to a regular bi-pap for sleep. Can highly recommend.

Vlcare
 
Hi. I was recently diagnosed with ALS. My Dr said my pulmonary function is less than 50% of normal. He has recommended a diaphragmatic pacemaker. It's an invasive procedure and preformed at U of Fl and other locations
 
I use the Trilogy in on demand sip and puff mode during the day and bipap at night. Works well for me and my FVC is ~25%. I would exhaust all non invasive options before a trache.
 
Hi Colleen, I was diagnosed this past April. My breathing was affected pretty quickly. I am now using the Trilogy 100 non-invasive ventilator at night and for naps. I am also going to be evaluated next month to see if I can have the diaphragm pacer surgery.
So, there are a few options for your dad besides a trache.
 
The Trilogy vent is wonderful. Tom has one in the bedroom and one attached to his pwc. They come with different masks or nose pillows so try them all to see which you like best. Tom has a full-face sleeping mask, nose pillows for daytime use and a special set of nose pillows with no chin strap for eating. Our DME product rep was fantastic and managed to get Medicare to cover two Trilogy machines. He is now enrolled in home Hospice care so we are very glad we got them earlier. He uses the vent 24/7 and it's made his life so much easier. He doesn't want a trache. At our latest clinic visit they showed us a new delivery system for his inhaler meds that hooks right up to the Trilogy. He no longer has to exhaust the muscles of his mouth and lips trying to hold the pipe in place. --Diane
 
I will be getting the diaphragm pacing system done on the 25th of sept. my FVC is at 68.
 
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