We did not start the Kynmobi as it made his blood pressure bottom out. He knows when he is having an off time. It is almost like a panic attack he becomes quite and can't really do anything almost frozen. Some days no off time and then the next day he could have 2 or 3. We are actually looking into DBS (deep brain Stimulation). It is a strange disease everyone has a different experience.

LindaLethornStack, I'm still having a hard time understanding when my husband is supposed to take KYNMOBI. I know you said your husband was not able to take it, but do you mind sharing what you considered an "off" episode for him to use the film strip? My husband has many symptoms after 5 years, but I'm not sure when I should think he needs one's. We've had the sample package for over a week, and he hasn't used one yet. Thank you for any information you can share.
Jane20

Kynmobi
Did anyone ever reply to your question? My husband is going to start KYNMOBI and wanted to hear from others on it. He was told to take it only on his bad days (off periods).

We tried it but it caused such a drop in his blood pressure that it wasn't going to work for him. We are looking into deep brain stimulation. fingers crossed