Tardive Dyskinesia Update and Good News

As it turned out, my Tardive Dyskinesia was getting worse and worse, bad enough so that people were noticing.  My tongue was making my jaw move to the point that people assumed that my teeth were chattering, and said, “Gee, you look very cold!” or something to that effect.  Or they gave me strange looks on the bus.  Perhaps, also, the TD was getting into my jaw, but of this I am uncertain.

Well, Dr. P and I decided finally that it was time to lower the Thorazine.  Because of insurance (jeepers!) I am only allowed the 200 mg size of Thorazine, and I can’t cut them in half, so I am taking 400/600 every other day.  It’s working out okay, but I suspect it’s too soon to really draw any definite conclusions.

However, the good news is this:  The TD has nearly stopped.  Whereas previously, it went on all day long, just about all  of the time, now it is happening rarely, and not as violently as to make my jaw move at all.  In fact, I got no TD on Saturday until around 7pm.  I phoned everyone I had on my speed dial and told them the good news!  I was so excited!  The sad part was that most people haven’t a clue of the magnitude of this event, but I couldn’t contain myself.  I was bubbling over with joy.

Here are my previous blog articles on the growing problem I was having:

http://juliemadblogger.wordpress.com/2008/10/03/tardive-dyskinesia/

http://juliemadblogger.wordpress.com/2009/06/14/thorazine-update/

Contained in these articles are links to further information on TD.  Here’s another You-Tube I found:

I will not be able to raise the Thorazine back to the previous dose of 600.  Bringing the dose back up will worsen the TD.  It so happens that this is the tendency with many patients.  So this has been a decision I have made based on the fact that I have been stable for a long time.

I have been hoping to get off Thorazine entirely.

One problem I have noticed is that I have an increased sensitivity to caffeine.  I can drink tea but a strong cup of coffee jazzes me up, and makes me uncomfortable.  This is simply something to take note of.  If I have to drop coffee altogether, I will be very sad.  But I do like tea.

Knit-a-thon for Boston’s Pine Street Inn shelter for the homeless on November 7

Check out this knit-a-thon:

http://www.knit- a-thon.org/

They are asking for 9×9-inch squares.  Stay tuned for an “L L Greene” 9×9 original granny square pattern designed for this knit-a-thon!  I’ll invent one soon!

What a great way to use up your leftover scraps of yarn!  Don’t throw them out!

Even if you live far away, you can mail in your squares to help out.  Knitters and crocheters rock!

My hair–before, and after

Last Sunday, I decided to get my hair cut.  Malnutrition had robbed my head of healthy hair.  Here is what my hair looked like in July.  Already, my hair had suffered from poor diet.  This is the day I graduated:

Here is my hair on Sunday, the day I decided to get it cut.  You can see why I made this decision.  The braid had to go.  It was the thickness of a pencil:

Well, I got my hair cut today.  What my hairdresser, Nicole Cullinan, and I, discovered, is that my hair is actually curly.  I was never certain of this, because my hair has changed many times over the course of my life.  When I was growing up, it was wavy, but not curly.  Starting about a year after I began taking the drug Lithium, in my mid 20’s, my hair became curly, and it later lost its curl a year after I stopped the drug, in my late 30’s.  Why it is curly now is a mystery to me, but I do know that my hair will naturally change as I age.  I am now 52 years old.  My hair is still nearly as fine as it was when I was a child.  It also is not at all gray.

At any rate, here is my hair now, after I got it cut today:

I am totally delighted with my new look.  I don’t have to do a thing to it, just wash it and let it dry.  I even put a hat on it (it is cold out!) and my hair stayed just as nice as it was.  I think it’s great that I don’t look the least bit like my mother!  I am getting lots of compliments on it, which makes me feel great.

I would highly recommend Nicole as a hairdresser.  She gave me more than just a cut.  She gave me great advice.  She was kind and understanding about the nutrition problem, and suggested vitamins I could try.  She received fantastic five-star reviews on the Internet.  She is still taking new clients.  Her website is www.bostoncolorgroup.com and she is located conveniently in Watertown Square, Watertown, Massachusetts.  You need to call first for an appointment 617-212-6309 and tell her I sent you.