Recent content by patrick123

Welcome, I think one of the first Things I did was to contact my local ALS Association. They have a wealth of knowledge that you need. They should also have a loan closet for equipment you may need and, support groups. They can also pay a home visit to determine what your home may need. patrick

My trach was planned. I made the decision based on FVC. When I hit 20% or below, I knew it was time. I didn’t want to wait for an emergency situation. I was home in ten days and, my caregivers were trained. It has been 2 1/2 years. patrick

It's appearing on my home page. It's a Trump survey.

Why are the forums posting Trump political adds. This should be a safe place free from politicians Patrick

Hi Don, I've had that problem. I use support socks to keep the swelling down. They're not easy to put, but you want to give them a try. Patrick

Welcome to to the forum. It's a great place to ask questions and get honest answers. Patrick

Hi Texasmom, Now could be a good time for an augmentive communication device. Al you would is Rx from your neurologist. Stating you could benefit from a device. I'm on my second device from Tobii (You get a new one every 5 years). Patrick

Most local chapters of ALSA are run and funded by the Chapter itself. They can always put the money to good use. Patrick

You are correct that using oxygen. But for short term use you should be ok. It's long term use you should worry about. It's not unusual to be put on oxygen after surgery. Sedation can make breathing more difficult. Patrick

Glad you found us, it's a great place to ask questions. As for a Bipap, most of use a trilogy. It can be used as a non-invasive Bipap, and is easy to switch to invasive ventilation (tracheostomy). Patrick

My pulmonologist was on the research team.

Welcome Chuck,

Where dreams collide. Passion can guide us through the most difficult of situations. But you must believe in yourself. Give rise to that place deep in your heart. That is where you will find strength. Nobody else can give it to you. Nobody else can take it from you. There will be days when...

Hi Chuck, welcome aboard.

It's not uncommon, my FVC dropped from 92 to 68 over a 5 month period. I also had limb onset, but it seem to hit my diaphragm muck quicker. Speak to you pulmonologist about a Bipap. Patrick