By Freda Wells (Caregiver)

One of the most important responsibilities of a Caregiver is to monitor all medications that our loved takes.  We need to make sure that medications are taken at the proper time and the proper dosage.  We need to be especially diligent when they are prescribed a new medication. The Caregiver needs to watch for possible side effects due to the medication.  The doctor prescribing the medication can advise you of the common side effects and you can ask your pharmacist as well.

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Recently my husband with Parkinson's was prescribed Crexont, a time release Carbidopa-Levodopa.  The physician changed his medication to Crexont, because he believed it would reduce the fluctuations of Carbidopa Levodopa levels in his system and reduce dyskinesia.  The doctor advised of some of the most common side effects, like drowsiness and fatigue.  The medication made my husband extremely fatigued, and feeling sleepy most of the day, preventing him from doing the things he liked to do.  Moreover, my husband was confused as to the days of the week and could not recall conversations we had.  Importantly, he was sad he was not able to do things he was used to doing.

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I messaged the doctor on My Chart as to the side effects my husband was experiencing.  The doctor ordered a reduction in the dosage my husband was taking.  After a few days his fatigue improved, In the next week he developed lack of balance (more than usual), slight mental confusion and slight depression.  Again, I contacted the doctor through My Chart with my concerns and my husband's symptoms.  The next day his office called and offered an appointment to meet with the doctor to discuss our concerns.  At the appointment, the doctor listened to our concerns and suggested another reduction in dosage or go back to regular Carbidopa-Levodopa.  My husband decided on the lower dosage of Crexont.  Over the next few weeks my husband became gradually weaker, sleep interruptions were common, waking at 3am and not being able to back to sleep were common and his mental confusing increased gradually.  I contacted the doctor again via My Chart and explained my husband's condition and my husband's desire to go back to the regular Carbidopa-levodopa immediately.  The doctor agreed and we made the switch.  Within a few days, my husband was noticeably improved.  The fatigue was gone.  His balance was better.  The mental confusion was clearing up. He is basically back to his regular self now.
 

Prologue:

The doctor stated that all medication changes don't go as planned.  We, as Caregivers, need to monitor any changes when our loved one starts taking a new medication or a medication change in dosage.

 

Final PDI comment:

It is critical to point out that Mrs. Wells contacted her spouse’s physician 3 times to determine how her husband could experience relief and resume his activities of daily living.  Moreover, it should be noted that Mr. Wells himself was able and willing to work with both his wife and physician to get the relief he was seeking.   The bottom line is that Mr. Wells did not appear to be in decline due the nature of Parkinson’s disease, as might otherwise be assumed by patient and caregiver alike.  Being observant, knowing your partner’s disposition, and proactive with an engaged physician are essential elements to battle this disease most effectively.

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For additional information on this emerging critical subject, please refer to this study by Geerlings et al., 2023 in BMC Medicine. https://link.springer.com/article/10.1186/s12916-023-02933-4?utm_source=chatgpt.com

We encourage you to share your story.  Please email mfsalvatore@theparkinsondiscoveryinstitute.org