Update on My Mom!

My mom at ALS Clinic - the Grip Test

Friends ask about my mom often, and for some reason it is always hard for me to give a straight answer on how she is doing. Mainly I think it is hard because I can't ever say, "she is doing better" or "the medicine is working" because there is no medicine that works, and people with ALS don't get better. It is just a terrible, mean disease! Each time a person with ALS gets adjusted to their new "normal," like not being able to speak, something else pops up like not being able to use their body. It just sucks.

I went to Houston with my mom on Friday to her ALS Clinic appointment. The ALS Clinic sort of gives me a better way to answer the questions of "how she is doing," so here it is! Overall the news is as good as at it can be when you are dealing with ALS. Basically, the disease is progressing slowly, and she is still very much holding her own.

At the ALS Clinic, the doctors and therapists "test" my mom in several areas - her breathing/diaphragm, gross motor skills (climbing stairs, walking, getting in/out of a bed), fine motor skills (cutting, handling screws/nuts/bolts), strength (grip, pinch). The doctors then graph the results and that is how they know how quickly/slowly the disease is progressing. It is somewhat subjective, and I am not sure that we ever really come away learning something that we didn't already know. But at the same time, it is good to hear from the doctor that she is progressing slowly because, to her, it feels like it is taking over her body more each day.

The great news is this - while her breathing/diaphram is weaker than in a "normal" person, it has not gotten any worse over the last year. The not so good news is that her right leg/hip is becoming really weak, and she is having a harder time walking, especially long distances. She gets tired pretty quickly from walking, which is not like my mom at all! The physical therapist recommended that she uses a cane for walking while "in the community." Also, her right hand grip and pinch is much weaker than it was at the last visit. So her right side is weakening while the left side still seems strong. She is using her feeding tube much more often to supplement her nutrition, although she still tries to get most of her meals through eating real food. And then there is the drooling - this is something that she really hates and cannot control, but she handles it pretty gracefully and I don't think many people even know that it is happening. She does go in once every three months for Botox injections in her salivary glands, which helps tremendously. She is hoping to be able to get the injections more often if the doctors say it is safe.

She is still involved in the drug study (I think this is week 56 for her), but I know that she is getting a little bit worn out and jaded from all that is involved with the study without knowing if she is actually getting the drug or placebo. At the same time, she feels an obligation to the study and to doing her part to help find a cure. Of course, there are several new drugs that the doctors are getting excited about that will be getting to trial stage soon. And the big buzz is definitley stem cells, although my mom's doctor feels that they are a few years away from stem cell studies in ALS patients. I really think stem cells are the key to finding a cure, and it can't happen soon enough! I cannot wait to be able to tell people, "The medicine is working, and she is getting better!"