@A MyParkinsonsTeam Member wow that is great information. The third paragraph and down is very insightful. An inhaler! That would definitely help when the medicine wears off early and my voice quits and I cannot walk upright till the regular c/l medicine kicks in. Your mother is fortunate to have you. God bless you for all you do to help her. Trying to remember the medicine and timing along with other medicine I have to take is a lot of work. I couldn’t remember if I took my dose of c/L yesterday and had to wait while symptoms kicked in to know for sure I did not take it. I sorted that out so it wouldn’t happen again but to my point. God bless you for how you care for your mom and sharing with me and others your experiences to help me/us. Thank you so much. My heart is grateful.

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A MyParki...

We've had good success with the Extended-/Controlled-Release carbidopa-levodopa formulation to stop the UP DOWN. It takes about 25 min to start working, but it is a MUCH gentler curve.

We use an Orally Dissolving formulation for quick dose corrections. Even a 1/4 tablet. It works in 5 minutes compared to 15 for the regular formulation for us.

Over the counter Calms Forte or GABA has been great to very quickly take the edge off the anxiety.

Otherwise, these environment actions help with with anxiety sometimes:

1) turn down stimuli - lights off, TV off, no one talking, etc.
2) go to a small 'safe' space (bedroom, bathroom).
3) do an familiar routine (wash face, brush teeth).
4) turn on low "Brown Noise" (like white noise but better).
5) get some air, even sitting by an open window.

The antipsychotics that we tried (Clonazepam and Quetiapine) have been insane. At best, they made my mother even fuzzier (which made her more prone to falling and delusions) and at worst they put her in bed for 36 hours, unable to eat or drink. There was no middle ground; either the meds were 'on' or nothing.

Any time, I'm happy to share our experiences. It often felt like we were blindly re-inventing wheels, so I imagine other may feel that way sometimes!

For remembering medications, we used a magnetic white board with the times and doses written out and medicine pre poured into little clear acrylic make sample containers, to which we glued magnets.

I needed all this to keep track, I can't even imagine how overwhelming it was to my mom herself!!

Hello Pearl3,

Yes - when she started using the Neupro patch we were able to slightly decrease her carbidopa-levodopa. The patch itself has a buzzy 'on' effect for her, so we put it on around 8am while she's still sleeping, so it's mellowed out by the time she gets up.

I did find it evened out the on/off of the carbidopa-levodopa, almost as though it turned the hard 'off' into a slow 'oooofffff' if that makes sense.

Her neurologist is very matter of fact that everyone is different and the 'correct' doses/timing will always be a moving target - as the disease changes, weather, how much food, stress, how much sleep....

We have settled into taking smaller amounts of Extended Release more frequently, with a 'top up' of regular or immediate oral dissolving as a quick boost as needed. In her case, 1 slow release every 2 hours with 1/2 a regular usually.

Actually, there is a carbidopa-levodopa inhaler, which has immediate effect. We used it during a difficult stretch when nighttime leg cramps kept her up in pain until the carbidopa-levodopa kicked in. The inhaler really helped shorted the time she suffered those nights.

@A MyParkinsonsTeam Member I found this simple explanation about a dopamine agonist online: What does a dopamine agonist do?
Dopamine agonists stimulate the parts of the brain influenced by dopamine. In effect, dopamine agonists trick the brain into thinking it is receiving the dopamine it needs. In general, dopamine agonists are not as potent as carbidopa-levodopa and may be less likely to cause dyskinesias.
https://www.parkinson.org › dopa...
Dopamine Agonists | Parkinson's Foundation

Does the Neupro help your mom use less carbidopa/levodopa and/or help what she does take work efficiently? Does it level out the wearing off times to prevent them from being so sudden and strong?

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A MyParki...

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