I have been meaning to send this update for a while, but my procrastination has worked out well since there are recent happenings to report. Before I get into the details, though, I wanted to say thank you for all the responses and offers of help and prayers. I’ve been trying to reply to everyone, but haven’t managed it quite yet. I do feel very blessed to have such a wonderful family and group of friends; it means more than I can say. I also wanted to thank you guys for honoring my request about not asking about ALS details. I know it has probably been tough, but I have appreciated it. I’m ready to lift the ban, though, so please don’t feel as though the topic is restricted when we next speak or see each other. Now on to the update…
On October 17, Jin and I went to Emory to get a spinal tap done. Definitely not my favorite procedure, but we were hopeful since they ran a bunch of tests on the spinal fluid. For those that are in the medical field, they ran the following:Tubes for cell count/diff, protein, glucose, VDRL, ACE, oligoclonal bands, gram stain and bacterial culture, crypto Ag, fungal culture, AFB culture, tuberculosis PCR, Enterovirus PCR, Toxoplasmosis PCR, EBV PCR, VZV PCR, HSV PCR, CMV PCR, JCV PCR, cytology. For those that aren’t, this translates into testing for inflammation or infection (which included lyme disease), leakage of proteins in the blood, and abnormal sugar levels and proteins. Unfortunately, these all came back absolutely normal. It’s strange to go to a doctor hoping they will find something wrong, but that’s definitely what we wanted. No such luck.
Once those tests came back and we realized we would be living with the ALS diagnosis a bit longer, I officially weaned Luke and began taking the Rilutek. October 25 was my start date, so I’ve been taking the drug for a little over a month and have not noticed any side-effects. The only annoyance is that the drug has to be taken twice daily on an empty stomach which means no food 2 hours before or 1 hour after it’s taken. I’ve finally settled on 7:00 after some trial and error, but it’s still obnoxious. You guys all probably know I like to snack and this really messes with my eating habits!
In addition to the drug, I’ve adopted an “it doesn’t hurt to try it” philosophy. On Mondays, I go to a chiropractor who incorporates massage and assisted yoga to help strengthen muscles. On Tuesday mornings I see an occupational therapist who has given me a number of hand and arm exercises (I’m trying to be more diligent) to retain as much strength and dexterity as possible. On Wednesdays, I go to a massage therapist who is keeping my muscles loose and will hopefully help their tone and overall health. I’ve also decided to try acupuncture. I had my first appointment yesterday morning after the chiropractor and it wasn’t too bad. At the very least, I can understand how it would help retain muscle, so I’ll probably continue going. I will try to keep the Monday appointment to group it with the chiropractic appointment since they are in the same building.
As you can imagine, these appointments make for a hectic baby care schedule. Jin has either been staying home in the mornings or bringing Luke to work with him. The women in his office seem to enjoy it, so I’m trying not to feel badly about it. Luke has been taking it in stride which makes it easier. He’s such a good baby.
As for me, I’m doing ok. I’m getting a little worried about my left leg since it seems wobbly, but I’m not having any trouble as long as I move deliberately. It’s the quick motions that cause me to stumble or lose balance. I have been very careful on the stairs, especially when carrying Luke. That’s really my biggest worry; causing some harm to precious baby boy. Jin’s trying to fix that, though. We’re in talks over an elevator. The other new possible symptom concerns my mouth muscles. If I try to speak at my usual speed, my tongue gets jumbled. Also Jin says my smile is different; he would know more than I would on that one. But I don’t think my left hand has gotten much worse, so that’s good news. Also the major indicators of progression, breathing and weight, are fine.
The latest development is an experimental drug we found out about through one of Jin’s clients. Emory may be participating in a clinical trial for this drug in the spring, but we would rather be a case study to guarantee I get the drug and to have more control over the dosage. Also, it would get me on the drug sooner. My original neurologist has agreed to take on the work needed to have this approved by the FDA. Nothing is guaranteed, but we’ll see if it works out. I would be able to continue taking the Rilutek as well, so it’s not as though I would have to choose one over the other. If you’re curious about the drug, you can view details here.
I think that’s it. All things considered, we’re doing well. We are simply trying to be as proactive as possible. Keep the prayers coming; they are definitely appreciated!