June 26, 2021

I listened to a short podcast from UCI about the new medication that was approved by the FDA (using the accelerated approval pathway). The drug is called Aducanumab, or Aduhelm. The doctors explained that the medication initially didn't show much improvement, but the results were reexamined and found that there was one subset group that showed improvement. That group consisted of patients who had Mild Cognitive Impairment or Early Stage Alzheimer's Disease. In that subset group, they found that 22% of participants experienced a decline in the progression of their dementia compared to the control group. As a result, the FDA approved the drug with the expectation that more studies will be done. Also, since there are 6 million Americans living with Alzheimer's, and this number is growing as the population ages, the scientific community and the FDA is under great pressure to make solutions available to the public. So the data is not strong, but it does represent the beginning of medications that will actually help treat the disease itself, rather than just the symptoms. This medication actually reduced the amyloid plaques that build up in the brain of Alzheimer's patients. The medication is not covered by Medicare, and costs about $56,000 per year. Much of the testing required to use the medication (Pt Scan is one example) is also not covered by Medicare. Another important thing to note: 40% of participants had significant side effects - brain swelling and small bleeds in the brain. On another note - I went to a marijuana dispensary this week and bought 2 kinds of gummies for John to try. I'm going to wait to try them though, because we are dropping the dose of another medication and I don't want to distort those results by introducing another factor. The dispensary was very nice inside, and reminded me of an Apple Store with big tables in the center area. I immediately asked for help and a very nice guy listened to what I was looking for and steered me toward a couple products that should calm John down and reduce his frustrations and anxiety. Hopefully when we try them he'll feel less agitated and happier. We'll see...

June 20, 2021

Today was Father's Day. Danielle came over with her little baby and was here all afternoon. She brought lunch - McDonald's. It was John's choice. Jordan was here later in the afternoon. Tim sent a message to John and tried to call. Ben texted John and told him he loved him and missed him. I had to show John the message because he doesn't know to check his text messages, and he said it was very nice and to tell Ben he loved and missed him too. A few minutes later John showed me the message again, and said "That's my boy!" and he was all choked up. It was a really nice day. John did spend a lot of time trying to get us to take him to buy a car today. He remains very angry about not driving. Oh and I got him his favorite lemon meringue pie and he had his first piece for breakfast! John has continued to grow more frustrated, agitated and confused. He's increasingly difficult in the morning and has been giving Jordan a lot of misery about getting in the car to drive to Easter Seals. He's unsure about the things he needs to bring with him (despite that I have it all ready for him) and worries someone will steal his stuff while he's gone. That's another aspect that seems to be increasing - a paranoia about things being stolen from him. Anyway Jordan's started calling me when he refuses to leave the house, and then I can cajole him into leaving. It's quite frustrating for all 3 of us. Often when he comes home from Easter Seals I'll find all kinds of things in his pockets and backpack. In addition to books and pens, he might have a bunch of paper towels or tissues folded up in his pocket. Or little comic book action figures in his pockets. Sometimes he puts a night light in his backpack. Or we'll run to the grocery store and I'll realize he's carrying 5 or 6 pens with him, as well as a few toys. I've also noticed he's swearing more. Especially in the morning. We've been increasing one of his meds hoping to address his frustrations, but it certainly hasn't worked. I'm not sure if it's playing a role in actually making things worse, or if it's simply an advancement of the disease. We have an appointment with the psychiatrist this week, so I'll address that with her. Edna at Easter Seals has also noticed in increase in John's behaviors, so it's not limited to home. There's a new drug that's been approved by the FDA for Alzheimer's Disease called Aducanumab. It's the first drug that attacks the disease process instead of just it's symptoms. It's supposed to slow the progression. Apparently the drug is only approved for people in the early stages of the disease, or even those who have Mild Cognitive Impairement (which can be a precursor of Alzheimer's). The treatment is intended for people in the early stages so that makes the drug unavailable to most people. And from all I've read, that makes the drug unavailable to John. However, I plan to discuss it with his Neurologist at our next visit. I'm not very hopeful, but it certainly never hurts to ask. At the very least, this drug is a first step toward addressing the disease itself, rather than symptoms - which is a very significant step forward in the treatment of Alzheimer's Disease. I'm also planning to look into medical marijuana. It's been discussed in a couple support groups I participate in, and some people have said it really helps. I'm interested in drops or gummies that might help calm John down, and help reduce his anxiety and frustrations. Ben encouraged me to look into it and I think it's worth a try.

June 6, 2021

I don't think I'm seeing any improvement with John's recent medication change. I know it's too soon to know, but if anything I think things are worse. He's more agitated and frustrated, and therefore more crabby. The other day he kept walking upstairs, grousing, then walking back downstairs, continually repeating the process. Jordan was downstairs so when he passed by he'd gripe at her about random things. She was getting frustrated with the repeated attacks so I told her to hide out in her room until he calmed down or moved on to something else. He seems to have stopped taking pens apart, but he's back to pulling lots of books of the shelves and stacking them around the house. He also continues to empty a junk drawer in his dresser. I find myself trying to lure him into watching TV so he'll be occupied and stop making a mess. It's the war of his crazy versus my crazy! I get his backpack ready for his day at Easter Seals, and then put it in the garage to try prevent him from loading a bunch more stuff into it. So now Jordan says he carries stuff out to the car by hand and loads the stuff in to his backpack while they're driving to Easter Seals. He brings toys (super hero figurines), fistfuls of pens, and of course books. He also brings stuff like flashlights, dead calculators, and an old empty wallet. Then at the end of the day I unpack it all and put it away, ready for him to reload in the morning. It drives me nuts! A couple weird things I've observed - - he was 'squeegeeing' the shower recently with his hand, instead of the squeegee. He often squeegees while the water is still running too. Also, the other day, he was very upset because he thought he almost lost his eye. We keep a scrub brush near the kitchen sink, way back against the wall/window behind the sink. He claims the scrub brush almost poked his eye out. He was very upset and brought the scrub brush upstairs to our bathroom so he wouldn't hurt his eye again. There's no way he could get his eye over to that scrub brush, so I'm guessing he picked up the brush and brought it near his face. Anyway he was very mad at me for keeping the scrub brush in such an unsafe place, and accused me of doing so just to hurt him.