Missy alluded to Joyces incontenence. Except for that one day she hasnt had any daytime problems. We are not sure what triggered her episodes but she had 3 in 2 hours. That was on the second full day Missy was here and occurred while we were watching some old movie clips we had converted to DVD. I asked the Doc if it could be emotionally related but he didn't know either. Its been 5 days now and she hasn't had a recurrence, either day or night. I just keep monitoring it and hope it stays away.
On Thursday the 19th I drove us to Lake Charles for a full dose injection. Joyce has been tolerating the larger doses very well. The cheapest site for Enbrel I could find is on line. It was cheaper than Sam's pharmacy. Make no mistake Enbrel is not cheap. We had a very smooth trip and on Friday I saw some of the items we saw after the first injection. She walked with me and stayed closer to me without excessive prodding. She will sit and watch TV for longer periods. She still has communication deficiencies but understands many things I ask her to do. No true conversation yet but still her repetitive chatter. She will "parrot" or repeat things said to her or that she hears on the TV. She has gone and readied herself for bed once since the last injection without me suggesting she do it. Only the second time since last year.
While I haven't seen the "miracle" cure I have seen an improvement in Joyce and keep hoping as we continue injections that she will continue with these small but obvious breakthroughs. We are scheduled back Thursday the 26th for another injection.
Thank you again for all of your prayers and good wishes. --PAL
Sunday, March 22, 2009
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Thank you for these wonderful updates. I know it's discouraging to not see as many improvements that you saw in the beginning, but as with my Mom, she will probably at least be better than she was before you started these injections, and will maintain for a very long time. In the meantime, maybe our wonderful Dr. Tobinick or another scientist will find something that will actually cure this terrible disease.
ReplyDeleteI am grateful knowing that we have at least found something to halt this disease. I don't want my children to have to watch me deteriorate slowly but surely.
I hope things continue to go well for all of you. Would you mind if I copy your messages on to the Alzheimer's Message Board? Or, you can post them there yourself, I think Missy did at least once before. The website is:
http://alzheimers.infopop.cc/eve/forums/a/tpc/f/762104261/m/4081064272/p/57
That link should take you directly to our last page.
Thank you for sharing your story,
Felicia
famc17@yahoo.com