Medical Update

Physically my Moms body is very weak and we continue to see her strength decline day by day. She has lost almost all use of her right arm and hand. She can no longer grip with her right hand which means she can no longer write. We are getting along okay with the use of her ipad and hopefully the people responsible for her speaking device will get their act together and actually submit it to insurance - a whole month later! Grrrrr! Not having a grip is also making it extremely difficult for her to hold the wand for her suction machine which is complicating things. When I have tried to help her maneuver it I trip her gag reflex....so we are still working on that one! So far she has been fine driving her wheelchair by placing the joystick in the hallow of her thumb and pointer finger. If that eventually becomes to hard they can adapt her wheelchair to be maneuvered with her chin which is pretty amazing.

When she was first diagnosed they put her on Rilutek which is the only drug used to treat ALS. "Treatment" for ALS means maybe extending life for 3-5 months by slowing the progression. At that time she said she only wanted to take Rilutek until her quality of life was getting poor and then she wanted to go off of it. This week she made the choice to stop taking it.

As for her breathing its hard to tell if there has been much of a change. If she is changing it is definitely not as noticeable as it was before. Although she is not attempting any physical activity anymore so we just might not be able to tell. Today we did increase the pressure on her cough assist machine to make her cough still effective. Her BiPAP machine has been at a pressure of 12 but today she felt like she wasn't getting enough air to be comfortable so we bumped the pressure up to 13. She has an apt on Tuesday afternoon at the ALS clinic and they will perform another Pulmonary Function Test. That will give us an indication for how much lung capacity she has lost over the last 3 weeks.

She got a sip-and-puff machine right before Christmas. A sip-and-puff machine is a non-invasive ventilator and can sustain her life indefinitely by breathing for her. The upside of the sip-and-puff machine is that it can be used as a portable BiPAP machine. This will allow her to leave the house and keep her oxygen saturation levels up. The down side is that it is a ventilator and by definition can bring heavy choices with it. While there are many people who choose to use ventilators it just wasn't what my Mom wanted and she has put that in her Advance Directive. For now she doesn't wear it very often, but that could change in the future.

She still has some use of her legs but even their strength is diminishing. She is still able to do the stairs with assistance as long as she has not taken Xanax. For the last few weeks she has been taking a small dose of Xanax some evenings to help her relax and get rid of anxiety. It makes her feel better but it also makes her body go limp and getting her up the stairs is not easy!

The good news is that she is no longer having the sympathetic nerve pain in her arm and shoulder. Once she stopped trying to sleep on her side and got use to the hospital bed, her pain in the night diminished. She still has aches and pains from her muscles deteriorating but we can give her something and it works to take that pain away. Its nice that when she is losing so much she is also losing the bad things :) We will celebrate that loss for sure!

Emotionally this has been a rough week and while we expected it, its still hard. We are having to evaluate the necessity of caretakers as well as if, when, and how long I will be going home for. There is nothing easy about these decisions and its made everyone a little bit edgy. The Holidays are over and its one more milestone that has flown by. There is nothing we can do now but give ourselves time to find new footing and meaning in all of this.

I know we all will, we just need time.