Helping Those Who Care for Parkinson's Patients
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We were given samples of this at our last neuro appt. and I'm wondering-is anyone using this? It is an inhaled form of levodopa, used for OFF periods, but only when you "really need it." When is that, exactly? My husband does very little all day and I'm wondering what qualifies as an OFF period warranting use of this rescue drug. Plus, I am very worried he will want to use it all the time, which our neuro cautioned against, and I'll have to be the bad guy telling him no more candy. We're not supposed to use it more than 4 times a day. Ha. I don't see this going well and am wondering if anyone is using it, and if so, when do you use it and how helpful is it? It's pretty new so not many reviews out there. It's also very pricey, of course. Also, taking this med is not something my husband could manage on his own at all, whether in an OFF state or not (seems like we're always OFF, nowadays). You have to unwrap the individually wrapped capsules, drop one into the inhaler's chamber, twist it, exhale fully, put the inhaler in your mouth, inhale deeply, hold for five seconds, and then exhale. There is no way my husband could manage all of this without help-he can't even take his regular pills even if I hand them to him. I don't see how the manufacturer expects someone in a PD "OFF" state to be able to manage all of these steps in order to get the drug into their system. Let me know if you have any experience with this drug and the details, so I have an idea of what we might expect when we try it 
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https://parkinsonsnewstoday.com/2019/01/10/fda-approves-inbrija-treatment-off-periods/ I don’t know anyone who uses this, but the article above explains it really well. Good luck! |
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Thanks Jane. I read that article, and others, but it doesn't really help answer when someone should use it or my other concers. Plus, the article specifically says it is for mild to moderate PD-my husband's PD is pretty advanced and I'm wondering why our neuro recommended it. I can't get him to follow my instructions in taking it to save my life. For example, he is supposed to exhale, then inhale deeply with the inhaler and hold his breath for five seconds, then exhale. Oh my gosh he gets so confused by this even if I break it down one thing at a time. He will inhale and hold his breath before I put the inhaler in his mouth, or he won't hold his breath after he inhales from the inhaler (he keeps breathing)... we haven't done it right once and so of course (and understandably) have seen no benefit at all. It's so frustrating. I think they should have an additional instructional statement about this drug which deals with PWP who also have dementia/cognitive impairment. Wish this had come out earlier. |
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| Sounds like way too many steps! I feel for both of you as you experiment with this...I know my frustration level would be off the charts. We don’t go back to the neuro til October, but I’ll ask and let you know. |
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Hi Lurkingforacure When my kids were very young they used inhalers. There was a special attachment for young kids it was a long chamber which assisted the inhaled drug to get into their lungs. It wasn't perfect but it maybe worth a try. They should have the attachment wherever you got the meds. Good luck. |
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Thanks, Checkmate, That is very good to know. Our neuro gave us the sample set and no attachment came with it, just the meds and inhaler. I feel so bad for my husband but am wondering if this is just something we cannot manage at this stage of the cognitive decline. I was just thinking the other day how grateful I am that we never got the duodopa pump-my husband had no interest in that when it was offered. At the time, I wondered if he shouldn't do it because it sounded like it was so helpful for those that got it....but now, oh my, that would be a disaster. My husband would be trying to rip the tube out, he would be pressing that dispenser button all the time (or never!), and on and on. I'm thankful I don't have to worry about those issues. |