Receiving a diagnosis of Parkinson’s disease can be an overwhelming experience, both for a patient and for their loved ones. Family and friends may feel intimidated about their role in their loved one’s care. At the Temple Movement Disorders Program, we want to make sure that caregivers know they are an important part of the team and we want to address their questions and concerns.
Early in the disease, a patient may not require as much direct caregiving, but I always encourage patients to bring “an extra brain” to their medical appointments. Helping to keep track of the details can be a huge source of relief for patients as they figure out their new normal. It also means that you are up to date if there is ever a situation where you need to take a more active caregiving role.
Of course, it’s important to make sure that you and your loved one are working as a team. Many patients fear losing their independence after a Parkinson’s disease diagnosis, so open discussion about how you can support them without taking away their autonomy is critical.
Before the visit
- Keep track of questions you have for the doctor.
As much as we think we will remember everything, having a list ready to go can ensure that nothing is missed. - Keep a symptom diary.
Parkinson’s disease can fluctuate a lot based on medications, sleep and stress. Knowing when symptoms get better or worse can help your doctor make the most appropriate adjustments to medications. - Consider any logistical hurdles and how to manage them before the visit.
Because Parkinson’s disease can affect mobility, it helps to know ahead of time where you will need to go and what resources are necessary to get there. It may take much longer to do simple tasks, so planning for this can reduce stress and ensure you get the most out of the appointment.
At the visit
- Bring an updated medication list including current dosage and timing of medications.
This is important so that your doctor or nurse can update the medications in your chart to remove any old medications or to add anything new. - Take notes during the visit.
Taking note of the conversation can help your loved one focus while at the appointment so they don’t have to worry about remembering every detail. - Make sure you know the follow-up plan and the best way to communicate with the medical team between visits.
If possible, make your follow-up appointment before you leave or within a few days. Before you leave, confirm with the doctor the best way to contact them or other members of the team between visits.
After the visit
- Keep an eye out for any communications from the care team.
Be on the lookout for communications in case there are changes to your appointment or updates from testing. - Help establish access to the online patient portal.
Patient portals help you and your loved one keep track of appointments, see test results, and communicate with your provider. The patient can assign you as a proxy, which gives you access to help manage their care. - Share any updates with your primary care doctor or other specialists.
Parkinson’s disease is a multisystem disease and symptoms may overlap with care provided by other medical specialties. The best care is provided when everyone is on the same page.
Above all, remember that you can’t take care of someone else if you aren’t taking care of yourself. Be sure you consider your own wellbeing, even if it seems less urgent in the moment.
And finally, remember that the medical team is there to support you too! At the Temple Movement Disorders Program, we have a team of experienced experts in Parkinson’s disease that can help you navigate this process. To connect your loved one to comprehensive care for Parkinson’s disease, call 800-TEMPLE-MED (800-836-7536) or schedule your appointment online.
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