We’re off to see the Wizard! Not sure what this trip will accomplish except to tell me I am a bit blinder and to put me on the study referral list one more time. [Lin/Linda: Read about who the Wizard is in Sue’s page The Man Behind The Curtain: The Wizard of Wills.]
I heard from ‘my’ researcher at the beginning of the week. She said things were moving along and they were getting closer to launching the Astellas study. Not sure what that means. Does that mean six weeks? Six months? Six years? Also, while I interpret her responses as hopeful, she has yet to say I am in for sure. I chose to interpret everything she says as positive. [To read more about the Astrellas study, read Sue’s page The Waiting Game.]
“All that we are is a result of what we thought.” – The Buddha
Same day, afternoon
Well, we are back. Pretty much what I expected. A couple of new wrinkles. My disease is progressing at an average rate. The stem cell study should be ready to go sometime this fall. That will be about six months after the initial target date of March.
It appears people still have confidence in APL2. The slowing in the rate of lesion growth was promising, of course. The failure to slow vision loss along with that may be being seen by some as an experimental fluke. Apparently, they are expecting that will change when larger numbers are run. [To read more about the APL2 study, read Sue’s page The Waiting Game.]
Oh, and Regillo is pulling back to full-time in his Philadelphia offices, or at least leaving the satellite office I have been using. I am being given to an assistant wizard. Crap.
I am discouraged but not defeated. We are getting closer to the discovery of some sort of treatment for dry AMD. It is going to happen and I might as well help…not to mention being one of the first ones to get some substantive help with this thing. Really, you did not actually think I was being selfless; did you??
In the meantime, trying not to fall victim to a crappy mood, I have done a little self-help. I engaged in some behavioral activation and some good old DBT opposite to emotion. In other words I got moving and did something that would make me smile. A little positive activity is often helpful to quell a developing sour mood. That is especially true when there is nothing you can do about the situation.
Dancing on the deck of the Titanic? Yep, but remember, 706 people survived that disaster. That is nearly a third. Oh, and two dogs. (The stuff you can find on the internet!)
I have a friend who believes if you are not having success, you are not trying hard enough. When I tell her I will stay the course because right now Wills is “the only game in town”, she says I have to look farther afield! [Lin/Linda: not me!]
Alright, so Wills is number 2 in the nation. Shall we look at number 3? Wilmer at Johns-Hopkins is only 154 miles. That is realistic if they have something wonderful.
Out of 116 trials in Baltimore listed, only one was even vaguely appropriate. They are doing trials with Zimura. And guess what. Those trials are happening in Philly, too.
Take home message.? This is FRUSTRATING. Take care of yourself. No sense adding insult to injury. Getting depressed will not help. When people suggest you are not trying tell them you are linked in to an active network (that’s us!) and you are working to solve your problem.
To paraphrase the armed services, those who wait also serve. And sometimes that is the hardest job of all.
Written May 30th, 2018
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