It was a wild ride but we were the first to arrive to the meeting of the patient advisory board yesterday. Timing for my hair coloring and facial was perfect and I made it to Michael's work with 15 minutes to spare but he was running late, thirty minutes late. The ride up was fast and almost miraculously free of traffic. And we experienced another miracle, a rare disability spot. Free parking.
The meeting was fantastic, Michael spoke for the first time and we all said our goodbyes to the coordinator of the group. She and her family are moving to the other side of the world. What a wonderful life! The new coordinator was introduced to the group and after the meeting, she shared with me that her dad had been recently diagnosed with familial IPF. I offered to speak with him, if she thought it would help. They are still in the panic phase of gathering information and trying to find their balance again. I so remember what that felt like and that I had wished there was someone I could talk with in a similar situation.
It is interesting, as these meetings continue, the attendance has grown smaller and smaller. Last night, it was tiny. There were four doctors, one coordinator, one assistant and only seven patients. A very vocal seven but still only seven. We began with nineteen but I think maybe this was the plan: start with a larger number of patients but only the truly interested will attend month after month. I rather liked it. Very manageable.
I must say that I was rather stunned while saying our goodbyes to the two doctors who also head the group, one said, "I loved your comments and everything you said this evening." Wow. Thanks.
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