Bob1985
New member
- Joined
- Apr 26, 2016
- Messages
- 3
- Reason
- PALS
- Diagnosis
- 05/2005
- Country
- US
- State
- Florida
- City
- Coral Springs
Hi, I am new to the forum but not to MND. I have had MND since I was 21 years old, however my disease was an UMN only disease, unfortunately in the last 4 years it turned into UMN/LMN ALS. I had a very weird onset as it was respiratory onset from the beginning. The first two years I used regular pressure driven Bipap, and than I was switched to Trilogy for last 6 or so years on non invasive Bipap mode with nasal pillows. My FVC for the last 6 or so years has been at 20% or less but I was managed excellently and did not have bulbar problems so no need for invasive mechanical ventilation. Currently, I still do not have bulbar problems, however, I am getting mucous plugs, and my pulmonologist wants me to get a trache and I am willing as I am very young and fortunately have the financial resources. I do not want to die at only 30 years of age, but I will admit I am very scared of getting a trache as I have never had any kind of surgery in my life. My question is how long can a Pals make it with a Trache, does it depend on weakness, as I am as weak as paper, or does it depend on having excellent trache care? I have just a two year old daughter and even if it gives me an extra year I would be grateful to God. My daughter has no mother as she died tragically a year or so ago. I have confronted my disease head on from a very young age but I am at a point in which I need support as I am very scared and nervous about what is to come. Thanks for understanding.-Bob
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