Disappointing meeting

I'm writing an essay about the meeting in Canfield. I thought we were going to be able to get Mom into a clinical trial for one of the two Alzheimer's medications that are in the news. The clinical trials on Flurizan and Alzemed are closed. There is no recruiting going on for them. A man asked, "When will the medications be available?" The two researchers, one from the University Memory and Aging Center at Case Western Reserve and the other from Alzheimer Research Center at the University of Pittsburgh, concurred that it will be at least three or four years. The man spoke so everyone could hear, "That's not soon enough."

When we started out, I thought I had to be at my mother's side from that very moment. She took the news so hard. But she and Dad insisted that it was not the time. They didn't expect me to be there every day because I have a family and home of my own to take care of. And so I backed off. It took a lot for me to back off. But, I did. Now I'm at the juncture in the road where I think it's time for me to be there more. And that's OK.

I was going to look for a job. We need a new kitchen range/oven and refrigerator. I need a car. I'm thinking of asking Mom how upset would she be if I used her car for a while. That would take care of that need. I think I need to take my computer to work at their house. It would make things easier for Dad if I'm around. Everything else has settled down pretty much, I think. DD4 will move to the college campus next month. DD3 is either working, with her fiance, or friends or her sisters so I think it's OK now for me to be at Mom & Dad's.

It's not that I want to stop living my life to take care of them. It's that I need to blend their needs into my routine. I need to be there for them because someday I will be the needy one and I hope that there will be someone who will want to take care of me.

Clinical trials

Mom and Dad were excited about something they read in the June issue of AARP Bulletin. The name of the article: Closing in on Alzheimer's. The drug Flurizan is the buzz word, a very promising buzz word, in this article. But a couple of days ago an Alzheimer's newsletter arrived in postal mail. I didn't open it until yesterday afternoon. And now I'm excited.

When Mom showed me that AARP article, I brought it home, called the doctor's office and asked about it. Mom had said, "I want to get in on the clinical trials." Gina checked with the local pharmacy but Flurizan is not on the market yet. She said to bring a copy of the article down to the office and they would look into it.

Then this newsletter came in yesterday. There are clinical trials open in our area. There will be a meeting in Canfield about these clinicals and the meds in them. I'm going to make the reservations for us to go. I think Mom and Dad both will be excited, too.

To find clinical trials in your area, call 800-439-4380. This government agency, Alzheimer's Disease Education and Referral Center, will help you find studies and and answer questions about them. Online you can find information at www.nia.nih.gov/Alzheimer's or www.nia.nih.gov/Alzheimers/Researchinformation/ClinicalTrials. The Alzheimer's Association is online at ww.alz.org.

Week's End

Dad has physical therapy today. He's wrapping up three weeks of it for his stiff neck. Mom has her mammogram and some blood work done today before Dad goes to physical therapy. We'll drop him off and go to Wal-Mart to run around while he's doing his thing.

I'm getting ready to paint their bathroom. I was going to do it this weekend but the 4th of July celebration was postponed to tomorrow because there were thunderstorms forecast on the 4th. In fact, we were under a tornado warning until 9 p.m.

There isn't much more to say about Mom and Alzheimer's today. She still is interested in getting into a clinical trial of AD medications showing promise. Like Flurizan, which has reportedly made a difference in AD patients...restoring quality of life. But even that won't give her back what she had before the stroke. She wants to drive, but I told her to drive she has to be able to use her right leg without lifting it into and out of the car. I know my mother. She'll work at strengthening that leg. I don't know if she can realistically do it, but she'll try hard because she wants to drive again.

Thinking

I can see that the wheels still turn in my mother's brain. When she looks at me and I look back into her eyes I see that she is still fighting to keep her brain function. She still crochets, though the patterns are very simple ones...like the basic granny square. She still works the sudoku puzzles even if they take her much of the day and never are completed. She still reads articles about Alzheimer's hoping that some breaking something will announce a cure or a medication that will give her recovery of what she has lost...or to hold onto what she has still.

AARP Bulletin, June edition, included an article entitled "Closing in on Alzheimer's." It speaks of a new medication MPC-7869, aka Flurizan. For some patients who participated/are participating in the clinical trials, the medication gave them back their memories and quality of life.

"I want to be in on the clinical trials," Mom said. "It sounds like what I've been looking for. I want to try it."

I called the doctor's office to ask about it. The nurse there called the local pharmacy. It isn't on the market yet, but if I take the article in the doctor's staff will try to find out more about it. So, I made a copy of the article and walked it to the office in high heat and humidity, a 15 minute walk from my house. The office was closed...early. I carried the article back home and it's still on top of the entertainment center because the demands are many and the time is limited. But I've added it to my to do list for today.