[jeane]

My husband Joe was diagnosed almost a year ago, but has had PD for a long time without a diagnosis. It’s still too soon to say if the disease has improved our lives in any way, but the diagnosis definitely made a change for the better. Before the diagnosis we could not understand why he was falling and had RBD, and many other symptoms. Because he doesn’t have a tremor the doctors said he couldn’t have PD. Finally they decided to do a DATscan which showed positive for PD.

Of course it’s been difficult accepting that he has a progressive neurodegenerative disease, but finally everything makes sense. And his treatment of carbidopa/levodopa resolves most of his symptoms at this point. We’ve been able to come up with a structure of medicine, exercise, sleep and hydration (we call it his MESH) that keeps him doing well much of the time, for now at least.

So, only time will tell if PD has any positive effects, but the diagnosis absolutely has.

[jeane]

My husband Joe has been taking 3 Sinemet (25/100) 4.5 hours apart during the day. He continued to be slow to respond to the levodopa in the morning, so his neurologist prescribed a time-released C/L to be taken sometime between 1 am and 4 am. It’s helping quite a bit. It’s taken a while to add the night-time C/L because he might forget in the middle of the night, or he might sleep through the time when he’s supposed to take it. But we finally seem to have it organized.

RBD was the main reason we started talking to a neurologist before Joe was diagnosed, and he’s tried various drugs, but the Melatonin is the only one that really works. His doctor says that he could take up to 9 mg per night. We’ve found that the extended release Melatonin is the only one that works for him. It’s 4 mg per tablet, so he takes two tablets at 8 pm, well before he goes to bed, so that he isn’t groggy in the morning.

When we first started the C/L, the doctor said that it might make the RBD worse, so he prescribed it for only in the day time. I haven’t noticed the nighttime time-released C/L making things worse, but we haven’t been using it that long.

The C/L makes Joe’s orthostatic hypotension worse, so he’s also on Fludrocortizone, and takes salt tablets. Taking a salt tablet before bedtime seems to make the nighttime bathroom visits a little less frequent.

The only other PD related drug he takes is Memantine for his mild cognitive impairment. That has helped somewhat. But the drug that works the absolute best for his PD is the C/L. And we’ve discovered that finding the right dosage and timing is the best way to keep things on an even keel … at this point anyway.

[jeane]

Thank you for the head’s up about the side effects, and that it doesn’t help everybody/every symptom.

[jeane]

Thank you for sharing your and your father’s experience. It sounds like it could be helpful for us too. Good to know that it will take a couple of weeks.