Your loved one with Parkinson's will increasingly need you more to help them keep track of all the medical information and appointments. It’s important for you to prepare, attend, and assist your loved ones through these appointments. In this blog, we provide some tips for preparing, communicating and organizing the abundance of information and resources needed to assist with these areas for your loved one.
Medical Information
The incidence and severity of Parkinson's symptoms vary from day to day, even from one time of the day to another. Being organized and planning for many potential outcomes can help you put a positive spin on what might otherwise be a stressful situation.
Keeping an organized record of your loved one's medical and surgical history and having it available and handy when the person with Parkinson's needs to fill out forms and answer questions about his or her health history is a big help. Use a notebook or three-ringed binder to write the medical and surgical history, choosing a method so new information can easily be added. If you choose to keep records electronically, make sure you have a way to access it when you go to appointments, print as needed, or keep a separate hard copy to bring with you.
Keep all of the following information in the notebook or binder:
Healthcare Directive: Create this document with the person with Parkinson's, with input from the family and the healthcare team. Give copies to your loved one's physicians and keep a copy in the binder.
Contacts: Names, addresses and phone numbers of your loved one's primary care doctor and other medical specialists. You can download a template from PAA for this information at this link: https://www.parkinsonalabama.info/tips-for-staying-organized
Up-to-date Medication List: List each medication with strengths and times. For example: carbidopa/levodopa 25/100, 1 pill four times a day - 8am, 12pm, 4pm, 8pm. The medication list can be kept on the computer (and printed for the binder) or written down. Either way, it must be updated after every medication change - which could be often.
Clinic Visit Notes: Keeping detailed notes during your appointments with your doctors helps you to go back and revisit any areas that you may need to explore more. It also helps when planning the next follow-up appointment to know what has been discussed with your doctor and what needs further discussion. Additionally, many medications are prescribed that require a gradual increase of dosage. Having clear notes about medication administration is important.
Appointment Schedules: An appointment calendar can easily be added to a binder that allows you to keep up with the many medical and therapy appointments you and your loved one with Parkinson's need to keep. It also allows you to easily schedule additional appointments by having it handy. Another option is using the calendar feature on your smart phone or tablet.
Communicating with the Healthcare Team
Open, honest communication between you, your loved one and the healthcare team is crucial. While you depend on health professionals for high quality care, they depend on you for information about the patient's health status and living experience, and for properly carrying out professional advice. So, who is on the healthcare team? The primary care physician will likely be your main point of contact, but there are many specialists who can participate in your loved one's care, and could include:
Neurologist (preferably a movement disorders specialist - a neurologist with special training in movement disorders)
Nurse practitioner or physician assistant
Nurse
Pharmacist
Physical Therapist
Occupational Therapist
Speech-language Pathologist
Social Worker
Registered Dietician
Psychologist or Psychiatrist
Attending Medical Appointments
It is important that care partners are present at every appointment for your loved one with PD. You are there to be supportive and take notes, but also to ask questions and share information. Your ability to communicate with healthcare providers can influence the quality of care your loved one receives. In fact, some movement disorder specialists insist that a care partner be in the room for every visit. As patients, regardless of our ailment, we often say we are doing "fine," even when that is not the whole truth. As a care partner, you can provide specific information on problems the person with Parkinson's is having. This can help the doctor make necessary adjustments to the treatment regimen.
At the same time, it is important to make sure that the person with Parkinson's feels empowered in conversations with all healthcare providers. After all, you are talking about his/her care. If your loved one can speak for himself/herself, encourage him/her to share any changes or concerns with the doctor. Then add your own observations.
Both you and the person with Parkinson's should be honest and ask direct questions. If something is wrong, the provider should say so, but it helps to ask. If you have doubts, get a second opinion. Even the experts do not always agree about the best treatment.
Remember, healthcare providers see many patients in a day and only see your loved one with PD briefly in the office. You are with them all the time. Therefore, it is important that you know all about your loved one's medical conditions (PD and others), including medications and other treatments, so you can make the most of your time with the provider.
Go to each appointment with a written list of questions that you want to cover as well as problems or improvements that may have arisen since the last visit. Prioritize your questions; sometimes the appointment schedule does not allow you to ask everything on your list. If you cannot get all your questions answered at the visit, ask your doctor or staff at the clinic who you can contact with unanswered questions or new concerns.
Being at the appointment is also important because of rules about privacy and confidentiality (you might have heard of HIPAA, the Health Insurance Portability and Accountability Act). Unless you are physically in the room with the patient and the doctor, the doctor cannot give you information about your loved one's health and treatment just because you are related to the patient, even if you are the spouse. Some practices do allow the patient to sign a disclosure statement choosing who and what information can be released to designated contacts about their health during the application process.
Involve the Team
The team of doctors, nurses, rehab therapists and social workers can help your loved one live well with Parkinson's. Learn each team member's role and understand how to access their services when needed. Ask questions and state your concerns to help each team member meet your loved one's needs.
These individuals can teach you how to provide proper care for the person with Parkinson's. As the disease and symptoms progress, this will become particularly important. If the person with Parkinson's is hospitalized or receives therapy at a rehab facility, ask the staff to show you proper care techniques for tasks like lifting, transfers, and bathing. Learning basic skills will build your confidence in the role of physical care - but also give you safety tips to protect yourself.
Communication
Three out of four people with Parkinson's do not receive their medications on time when staying in the hospital. This can result in complications and a longer hospital stay. Be prepared to advocate for your loved one with Parkinson's. Learn more by visiting our section on Hospital Safety.
Also, get comfortable communicating with your medical teams beyond established appointments. Many physicians and nurses are available to hop on a video or zoom call for a tele-health appointment to help fulfill a critical need. Also, many hospitals, like UAB, offer a patient portal. You will be assigned a user-name and can create a password that allows you to safely communicate or chat directly with your providers through a website with a page specifically dedicated to your care needs. Often, this is the best way to communicate with such busy practitioners. If you have a medical emergency, go to the ER. But if your question is one that can receive an answer in a few days (and most are,) then communicating via email with your providers can provide even quicker results.
Preparing for Medical Appointments
When you have an appointment established, we all have some homework we need to do to make the most of our time with our providers. Make sure you schedule the appointment for a time that works well for you and your loved one, giving yourself ample time to wait and spend time with the physicians. Before then, discuss areas that you want to bring up with your provider. This could include bothersome symptoms that are new or have grown worse. By having a list, you can make sure you touch on everything. Then, the medical team will be better able to care for the person with Parkinson's if you are prepared for the appointment.
You will also want to have a list of any medical changes you have had since the last appointment, such as a hospitalization, ER visit, fall, surgery or procedure. If your loved one has had deep brain stimulation (DBS) surgery for PD, you may want to be detailed about programming and battery analysis.
As a care partner, you may have to be the one that speaks up about some symptoms you have noticed that are more difficult for your loved one to manage on their behalf that they might not even notice. This could include changes in walking, ability to complete day-to-day activities, voice volume or trouble swallowing. If you feel your loved one needs additional therapies - don't be afraid to ask for it.
Keep your team posted about what you are doing to manage your symptoms outside of just drug therapies. For example, are you attending a Rock Steady Boxing or Dance for PD class? Is there a certain diet you have implemented? What changes have you noticed based on how your loved one is living that could be impacting quality life. Even noting any changes to living situations can help your providers determine better treatment paths.
And always remember to check your prescription bottles for needed refills. Be sure you have these items at your appointment - assembling these items the day before may be helpful:
Current medication list including all prescription and over-the-counter medications and supplements (including strengths and doses)
Insurance Cards and ID
Any medication you need to take that day while at the appointment
Know your primary care physician contact information, as well as pharmacies
During Appointments
As a care partner, you have a critical role to play during the actual medical appointments. Be sure to write notes and answers to questions. Be honest when answering questions, even if the answers are difficult. Understand the recommendations and follow-up plans before you leave. If something is unclear, ask the doctor for clarification. Most importantly, make sure you get information about any new medications that are prescribed which should include:
What is the name of the medication?
What is the medication being prescribed for? Is it to replace another medication or to be taken in addition to other medications?
What is the dose, and how often is it to be taken? (Many anti-Parkinson medications increase gradually to avoid side effects. Make sure you write down the dosing schedule precisely)
When and how will you know if the medicine is working?
Are there common or serious side effects to watch for?
Understand who you should call with questions, concerns, or updates.
Try to schedule the next appointment or additional team appointments before leaving the office.
Sources:
Parkinson's Foundation. Page 44.-45, 50. Organizing Medical Information. Practical Pointers. Page 62, 64 and 66. Medical Appointment. Practical Pointers. Chapter 3. Caring and Coping. A Care Partner's Guide to Parkinson's Disease. "Booklet."
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