The AgingCare.com forum is filled with people coming together to share valuable information. We’ve compiled experienced caregivers’ best tips and suggestions for successfully managing a loved one’s drug regimen for Parkinson’s.
Finding the Right Medications and Dosing Schedule
“When it comes to patients with Parkinson’s, their medicines must be given in a timely fashion. My mother-in-law was taking too much at first because it made her feel so good, but then she had to be weaned off so that it wouldn’t lose its therapeutic effect too quickly. Eventually the meds will no longer work, but we haven’t reached that point yet.” –NYDaughterinLaw
“It seems that some of the Parkinson’s medications can escalate sexual desire in a patient. It was a rather touchy situation to mention with my husband in the exam room, but I decided that this was creating a wedge between us and had to be dealt with. I told the doctor that there was way too much affection going on. He got it. My hubby was extremely unhappy about this. One suggestion I have for anyone pursuing this and similar issues would be to inform your loved one that you intend to mention it to the doc before you get there. I should have. Then stick to your guns. We were able to discuss it later and move on, but he doesn’t get it. A few changes in his medication has helped some.” –IMAWannabe
“Ropinerole extended release (ER) was a godsend. It took a little time to find the right dosage for my husband, but it did so much good. It was simply one pill in the morning, steadily releasing throughout the day. The insurance company didn’t want to approve the ER because they prefer the much less expensive immediate release (IR) version, but the doctor filled out the paperwork stating that the IR was not working for him. He has a formulary exception for the ropinerole and we just renew it every year with the insurance company. The only side effects we saw were a bit of brain fog, but it really helped with masking (blank facial expressions), rigidity, micrographia (small, cramped handwriting) and walking. It’s been a good choice for him for the past couple years. The doctor said he’d eventually need to switch to the carbidopa/levodopa, but the ropinerole has been a great fit.” –Linda22
“Parkinson’s is different for everybody, so no one will react the same to any medication. My mom has had Parkinson’s for about 14 years and currently takes Rytary. I’ve noticed it causes her to not be able to communicate. In other words, I am unable to carry on a conversation with her 3-4 hours after she takes the medication. At least it gives her more mobility. I’ll take that.” –auntie2seven
“Just a note: Requip (ropinerole) can interact with any medication for bladder spasms, causing what looks like mild dementia. I take only a small amount of Requip for ‘periodic limb movement’ (meaning I kick my husband while I sleep), and the interaction happened to me.” –GrannieAnnie
“My mom is 94, has PD and is in the early-stages of dementia. The neurologist took her off of part of her Parkinson’s medicine and added one for memory. It has helped some. I have found that keeping her daily routine consistent is extremely helpful. I have been her cheerleader all the way through this process, and when she doesn’t want to do something she can do, I have learned to pick my battles. (She is like my teenagers!)” –lovingkid
“It is crucial that PD patients get their medicine on a schedule. It is better to overlap by a half hour or so than to miss a dose by a half hour.” —kathyt1
“Many of the Parkinson’s medications are supposed to be taken on an empty stomach or should not be taken with sugary foods, protein or high-fat foods. It messes with the absorption of the drugs. My client used to insist on hiding candy in her room. She’d take one of her pills and eat a candy bar and end up unable to talk for a couple of hours. It is quite tricky to take the right doses of meds and then not eat with them or right after. Your pharmacist is your best ally in understanding what a medication can do and how it interacts with other meds and everyday things like food. Doctors are often just too busy to explain it, and those prescription inserts are like novels.” –Midkid58