I am treating myself to a beer right now.
C Claire and I met with Kate the Social Worker tonight. It was productive and I think will be a good resource for C Claire, and me. It's necessary at this point for me to compartmentalize a bit--still not a good idea to think too much about why we are there except to provide the outlet for her. I like Kate, and C Claire was chatty and friendly and brilliant. Listening to her with someone else's ears always takes me by surprise. I accept and am accustomed to her elevated use of language but in situations like these I am blown away. She doesn't "dumb down" like so many teenagers do. I love her so much and am so proud of her.
When we got home I made her dinner and also started a dish called biryani. One of the Ladies' Night ladies made it for a pot luck at the office and I was intrigued. Anyway, it is very involved and requires chopping and deboning. Both of these activities require dexterity--and I was clumsy and frustrated. I chopped a nail--thank goodness it wasn't a finger! And thank goodness, too, the nail didn't end up in the veggies! The energy expended, however, was enormous and my arms and hands are not only tired but they are twitching like crazy. Times like this are discouraging because I cannot imagine the twitching is anything but a sign of deterioration and I hate to think I've done anything to worsen the deterioration. My apologies for being redundant.
Deterioration, clumsiness and frustration aside, the biryani is cooking and smells fabulous!
So, it is late, after 10PM. Almost time for the Rilutek. One week until the clinic. And the lithium.
My niece has written and mentioned stem cells as something to look into. I am only superficially aware of what's being done with stem cells as it pertains to ALS but I will most certainly look into it and ask Dr Bayat on Wednesday.
In other news, I had a much needed and much enjoyed run this morning. While running, I was thinking about the faces around me at dinner last night. Have you ever been to a gallery that displays old portraits--portraits from the 16th, 17th and 18th centuries--and noticed the smoothness of the features? That's one of the things I saw last night. Each of these women, present in the 21st century, could have been a model for these portraits. I was conscious of a timelessness in their features. I must sound crazy, but I DO think about stuff like this.
The biryani is done. I hope it tastes okay--we'll find out tomorrow!
Off to bed. Sweet dreams, my dearest ones.
1 day ago
3 comments:
You know why I think you're great? You are the most REAL person I know. No bullshit - when you're happy, you say you're happy. When you're pissed off, you make no bones about it. I appreciate that. So many people are full of crap these days - you are truly a breath of fresh air.
I can almost smell the biryani. MMMMMMMM.....byriani.
You know why I think you're great? You are the most REAL person I know. When you're happy, you say it and you clearly appreciate things that make you happy. When you're pissed off, you make no bones about it. And when you're sad, you express yourself. You are truly a breath of fresh air and I'm so glad we're friends.
I think I may go enjoy a beer now too...
PS - mmmmmmmmm....biryani!!!!
I need your email address. Send it to me at femmeria@gmail.com. I don't want to keep posting comments if they aren't really comments. Anyway, a quick synopsis of what I've been reading.
Did I tell you that my coworker had a brother that had ALS? She's been very helpful in talking about everything. Still very active and very interested in you and how you are doing. She's very happy that you are doing well, and so am I. We sent out a request for our company to choose the ALS Association this month for our monthly charitable contribution that the company makes. Small amounts matter, even just to get the word out. I love you and I don't care it it gets annoying but I'm trying to do any little thing to see if somehow someway there can be a cure for this.
http://www.alsa.org/research/article.cfm?id=715
The discovery that human embryonic stem cells can be isolated and propagated in the lab with the potential of developing into all tissues of the body is a major medical breakthrough. But it has raised ethical concerns. Stem cells are also present in adults, scientists now find. If there were a way to stimulate resident stem cells to replace dying cells, the limitations of transplantation could be overcome, as well as the ethical issues.
For ALS, it is becoming evident that it is not only the motor neuron that is at risk in the disease but neighboring cells as well. Attempts to replace these cells are ongoing and may be more feasible than motor neuron replacement. In the immediate future, stem cells may be vehicles that can be sent to the damaged area and provide missing factors to help remaining cells survive. Available options to be explored, together with the challenges to making stem cell therapy a reality for ALS, are pushing this field forward rapidly, with continued commitment of funds and expertise
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