Recent content by mattb

Re: Terminal Wean from Ventilator Thank you for your condolences and for the Truth about everlasting life through our Savior Jesus Christ!

Well my dad passed peacefully at a local hospice house on Monday April 16, 2015 at proximately 11:30 AM after ventilator withdrawl. He was given an IV of Fentanyl and Verced (these drugs are supposed to be faster acting than morphine and ativan). Once he was non-responsive his ventilator was...

Re: Terminal Wean from Ventilator Well my dad passed peacefully at a local hospice house on Monday April 16, 2015 at proximately 11:30 AM after ventilator withdrawl. He was given an IV of Fentanyl and Verced (these drugs are supposed to be faster acting than morphine and ativan). Once he was...

Unfortunately, I am pretty sure I know what the end will look like. Tim will become more and more dependent on his trilogy to the point that sip and puff will no longer work, then the mask or nasal pillows will usually provide some respiration and cO2 removal that will help him for another short...

I do not think suffocation is an over dramatization. It is what happens. Yes it can be done drug induced and peacefully, but there is also some respiratory distress in most cases prior to the peaceful part. I think the future will likely find more PALS choosing invasive ventilation simply...

I am sorry that you feel that way. Caring for a trach patient is no walk in the park, but it can give a person who wants it another, 3 months, 6 months or 2+ years depending on progression and the persons will to live or desire to die. A family should not have to make the decision for a PALS...

I was once where you are. Time passes quickly and what seems like a slow progression can speed up quickly once milestones are crossed like being able to stand, toilet yourself, speak or write legibly. If you ever come to a crossroads and need some perspective on what we did, I am happy to...

It has been a while since I have posted so I wanted to relay a chain of events that may help others in a similar situation or heading toward a similar situation. My father was diagnosed with ALS in September 2013 at 71 years old. His symptom onset was a year prior with overall weakness...

Thought I'd post an update on my dad. He is still in an LTAC facility which is basically a small hospital that allows ventilator patients to have regular rooms. In most hospitals they require you to stay in the ICU even if you are stable on a home ventilator. My dad has regained some...

I wanted to blog about my dad and his recent surgery to get a trach and begin full time invasive ventilation. Prior to surgery he was on BiPAP 22+ hours a day with good use of his arms and hands, able to walk short distances with a cane or walker. Breathing was his biggest problem and he went...

Thanks for the reply. Same thing for my dad. He got a PET scan and no malignancies. Ever consider trying to get 3,4 DAP drug? Modest short term benefit in ALS patients, great benefit for LEMS patients. I asked my dad's neurologist about it, as she he does not have LEMS and she cannot treat...

My dad recently got a feeding tube. Feedings are going well. He was diagnosed with ALS one month ago at age 71, symptom onset one year ago. He was in the hospital for 10 days getting tests run prior to his diagnosis. He was admitted for shortness of breath. He went under general anesthesia...

Old dog, thanks for the reply. The Yo antibody is associated with Gynecological cancers. The following autoantibodies are found in paraneoplastic syndromes6-8: a) anti-Hu, anti-neuronal nuclear antibody type I (ANNA-1) is associated with Small cell lung cancer resulting in PE b) anti-Ri...

My dad had a PET Scan today and it was clean, not cancer, just plain old ALS. What should we make of the positive test for P/Q-type voltage-gated calcium channel antibodies? His doc is throwing it out, says it has no significance. Does anyone have experience with an ALS diagnosis with...

Paul, I saw a post that you made back in March about elevated P/Q antibodies. Did anything ever come of that. My dad has been diagnosed with ALS and positive for the LEMS P/Q antibodies. We are not sure what to make of it. He is scheduled for a PET scan. Did you try any of the LEMS...