[Mel Levine]

Shannon, so sorry to hear about your husband.

Everyone is different but yes, respiratory failure is what frequently happens.

My wife passed in October after 3 years with bulbar onset. During her last 3 months though he food intake, via a tube, remained constant she became unable to walk, breathing became labored and she too spent most of her time on the trilogy and using the suction machine to handle the excessive amount of saliva that is part of this disease. The strange thing for her was that despite the amount of saliva she suffered from dry mouth.

One night last October we got ready to go to sleep as we did every night. Though she was unable to speak she used a text to speech app on her phone to communicate. She gave me the thumbs up to turn out the lights. We went to sleep and she passed away painlessly during the night. I know it was painless because she was next to me and she slept with an alarm fob on which she could push the button if she was in distress. It would sound an alarm to awaken me to help her. I found her in the morning with the fob still in her hand.

[Mel Levine]

We’re in Ga and no special handling of pALS (my wife). We got our 1st shot (Moderna) 3 weeks ago by getting lucky on the sign-up. Emory is our ALS clinic and said they are using what they have for staff.  Our primary care doctors don’t have any vaccine and basically sent an email saying ‘don’t call us, we’ll call you’.  We live in Fulton County they refued to schedule us for the 2nd shot when we got the 1st. Told us we had to try to get an appointment on our own. Apparently there was an uproar over that approach. I got a recent email scheduling the 2nd Pfizer shots but not the Moderna.  We are hoping that they will contact us for the 2nd shot before our window opens on the 10th.

 

[Mel Levine]

My wife had the PEG  inserted in April after she couldn’t take in enough food and was losing weight. It was an emotional experience but we adjusted. She started with Jevity 1.5  with a gravity bag but it was taking 90-120 minutes per meal. After a few months we switched to Kate Farms 1.0 and adjusted the amount to provide the same calorie count as the Jevity. It might be too much for some people. Now it only takes 20-30 minutes for each meal.

We also are adding 1 tablespoon of Avacado oil once a day. It is 330 calories and has helped my wife even add a pound or two.

Lastly, we crush all her medications into a fine powder using a pill crusher with a container and spin screw down top. Then I dissolve them in a syringe worth of warm water to prevent clogging.