ALS Update

So my hope that the ALS had plateaued was optimistic, but unfortunately it was only hope. My feet and legs have gotten worse and I'm barely able to walk in the house (I've been wheelchair bound outside since Oct). There are times where my feet don't feel like they can move at all so Bob will put me in the wheelchair to get me from one room to the next (good news is I've only fallen once this month). Getting dressed has become even more challenging because there are days I can't stand on one foot even for a second to put my foot in leg holes. I can no longer stand up from my special eject chair so Bob has to lift me up. On the bright side, I am providing Bob and Tana new material for jokes because my walking speed is the equivalent to that of a turtles. =)

My breathing has gotten worse too because I have a hard time breathing now when I laugh or try to talk fast. My coughs and sneezes have had only partial strength for a couple of months now.

My arms have gotten worse too, making eating, teeth brushing, etc. even harder. I am not supposed to lose weight because it means losing muscle too, but due to eating challenges and muscle loss I have lost 25 lbs since last March (8lbs the last two months I was pregnant and the rest since then). Intellectually I know it's not good, but as a female I was ecstatic that I was able to wear pre-pregnancy clothes, including jeans, two and a half weeks after Joshua was born! =)

I saw Dr. Levine, my ALS doc, the day before Joshua was born to talk about my changes to that point and drug trials. The trial my doctor is most excited about won't start until the April-May timeframe, but he doesn't want to wait that long to start me on something so I will be starting a different one now and then switching when the other one starts (I just have to be drug free 30 days prior to the start of the 2nd one).

The one I will be starting is a cocktail made up of three existing FDA approved drugs that haven't been used in combination before. One of the drugs is Rilutek, the only drug on the market to treat ALS (athough it's effectiveness is minimal at best) and two others I can't remember the name of. I go see him again on Mon., 12/29, to get my oxygen levels checked and pick up the Rilutek. I will take the Rilutek for a month and then start the other two drugs.

Quick update on Baby J (one of his many nicknames):
He goes for the upper GI and barium swallow on Jan. 6th.

He is sleeping too much and not eating enough so now we have to set the alarm at night to wake him up and feed him. (Poor Bob is exhausted!) As of 12/22, he's up to 8lbs though!