Spinal Tap

Tasha had a spinal tap yesterday. She said it was uneventful and isn't sure why people complain about them! She was very excited to get the spinal tap, because she was certain that she would be able to drop 3 of the drugs she was taking. It's difficult to swallow the drugs at night and of course, there is the added expense. Her bubble was burst though...her doctor has taken her off the drug trial, but has recommended she start another FDA approved drug. It's actually a drug used for Alzheimer patients. He has seen a slow-down in the progression of ALS in patients using this drug. So fingers crossed, everyone! Unfortunately, he feels she is deteriorating too fast to pull her off all of the drugs.

She recently had a 24-hour oxygen study. He hasn't gotten the results but Tasha said she had never seen her pulse ox go below 90, unless they were transferring her. So at this time, he feels her fatigue is disease related. He asked if she felt her long afternoon naps were preventing productivity or keeping her from spending time with the kids. She said absolutely! So he prescribed a pick-me-up pill to take in the morning. She felt like it worked today. When I spoke with her at 6pm, she hadn't napped yet! However, her shortness of breathe was worse, because she wasn't on the bi-pap machine during her nap. So she will have to start scheduling in the bi-pap while she is awake.

Tasha had a busy weekend. I was able to fly down from Minnesota for the long weekend. We had a great time catching up! We saw a couple of movies, went out to dinner and even had pedicures.

I joked that Tasha's french pedicure would last for a very long time, but that may not be the case. They are going to Florida on Friday morning to spend some time in the sand & water. The whole gang is meeting there: Tasha, Bob, Tana, Joshua, Mandi (her amazing caregiver), Peggy, Lou, Mark, Jean, Troy, Denise, Victoria & Thomas. Wow, I hope I didn't miss anybody...Tasha isn't going to have time to proof-read my post this time! Tasha is calling this her "Make A Wish" trip. She told the travel agent that she wanted to go somewhere where she could sit on the beach and drink a Pina Colada. They are going to a resort in Petersburg, FL that offers a sand wheelchair! I'm sure we'll see some pictures courtesy of Jean in a couple of weeks.