Questions a Caregiver Should Ask about Parkinson's Disease

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The scenario of knowing something is wrong, but being unsure what it is, is far too familiar as we watch our loved ones age. Visits for tests and exams become frequent and finally the doctor’s appointment you have been waiting for has arrived, accompanied by apprehension and a desire for answers. Receiving the first set of answers often results in yet another set of questions. If you are a family caregiver, you most likely understand this all too well.

When an elderly loved one is first diagnosed with Parkinson's disease, you'll probably have a lot of questions. Becoming informed requires a bit of due diligence and is always the best method of preparation to make decisions confidently. With any health issue, asking questions is crucial. Resources like the National Institute of Health, the Parkinson’s Disease Foundation, National Parkinson Foundation, American Parkinson Disease Association can help you become more familiar with this disease. Become an advocate and ask questions for the benefit of your loved one and their family.

Common Questions Caregivers Ask

  • What does a Parkinson's diagnosis mean?
  • How can we cope with the symptoms?
  • Is there anything we can do to slow its progression?
  • What are the treatment options?
  • Is there a cure?
  • Are there special aids I need to consider for the home?
  • Will a special diet be required?
  • What side effects should I expect from medications?
  • Is surgery necessary?
  • What therapy options are beneficial?

These are all important queries, but there are additional issues that should be brought up immediately following a diagnosis.

5 Primary Questions to Ask Your Loved One's Doctor

  1. What treatment options are available? Are there new treatments expected? The first thing a caregiver and a senior's doctor should discuss is the different ways of treating PD. There are several medicinal paths that can be taken after an initial diagnosis and Walsh feels that it is vital forthe family and the patient to be aware of the pros and cons of each option. You may also want to inquire about medications and even new surgical options expected to become available in the near future. Walsh says that the near future will likely bring several new therapies for the disease. Perform your own research and be ready and willing to ask questions about the medications, symptoms, side effects, and alternatives. Keeping an open line of communication with your health care provider is a key component in treatment.
  2. Why are you suggesting this particular treatment path? After discussing the various options for treatment, a caregiver should inquire as to why the doctor feels their prescribed plan is best. This is particularly important with a newly-diagnosed patient because of the time-related dangers associated with some medications. Walsh notes that within five years of starting a commonly prescribed medicine called Levodopa, many patients develop dyskinesia—a disorder marked by a reduced ability to perform voluntary movements and the development of involuntary movements like tics. There are, according to Walsh, certain Levodopa-sparing medications available to treat the disease, which some doctors may not initially prescribe. However, a clinician is more likely to look into these lesser-known forms of treatment if a patient or their family inquires about alternatives to Levodopa. Balancing the benefits versus the risks is not always staightforward.
  3. What exercise program should they be doing? When it comes to treating PD, medication can only take a senior part of the way. Ask about both the amount and type of exercise their elderly loved one should do to help manage their illness. According to Walsh, having a good exercise plan is, "just as important as being on the right medications." Research has shown that intense physical exercise can cause positive changes in the brain, and may improve symptoms in a person with PD. Walsh also extols the virtues of pairing aerobic workouts with stretching and balance exercises such as Tai Chi. Seeking treatment from a physical therapist certified in LSVT BIG has been proven to be very beneficial. This program is typically a quite intense regimen several days a week for about 4 weeks or so. Patients greatly benefit from this therapy as they re-learn to "think big" for all of their movements. There are several complimentary therapies available and beneficial such as art therapy and even dance.
  4. How can I help my loved one improve their sleep and diet? The right diet paired with the optimal amount of sleep can make a huge difference in the life of a person with this disease. Walsh notes that these two variables are often more impactful to a person's quality of life than the symptoms brought on by their disease. He says that a doctor might not think to ask about a patient's sleeping and eating habits, so it is important to raise the topic on their own.
  5. What does their prognosis look like? This question is likely to be the most difficult for a senior's doctor to answer due to the variable nature of this disease progression in individual people. Even so, Walsh says it's an important discussion for a caregiver to have with their loved one's doctor. Continual assessment of the status of the disease is an ongoing effort and communication established early with the doctor and clinicians will prove to be advantageous down the road.

One of the best ways to help your elderly loved one manage their diagnosis is by having regular discussions with both them and their doctor. Establishing routines and a management plan early is a valuable tool that can help with daily activities as well as expectations of the progression of the disease. Not only does your loved one need to be part of a group for physical therapy and support, but the caregiver certainly needs to be active in a support group. Caregivers should give priority to their own needs so they can adequately care for those they love.

The aforementioned questions regarding treatment plans, exercise, sleep and diet should be constantly re-visited throughout the course of the disease, according to Walsh. He also says that caregivers and seniors need to be their own advocates, never being afraid to ask questions or address issues with the doctor. Reading and becoming as informed as possible will enable the patient and family to make the best decisions for their situation.

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2 Comments

Treating Parkinson's and dealing with it is a two way street. Doctors, patients and caregivers should be on the same page as to what is going in the daily life of a patient with Parkinson's. The five areas of questions listed in this article should also be addressed by the physician at time of the office visit. There many times the patient and/or the caregiver are so involved in the daily activities that it is difficult to step back and notice the changes between office visits. Sleep patterns, medication schedules, food intake, behavioral patterns, physical changes, etc. should be brought up by the caregiver, and if not, the doctor should have a list of these areas to ask about at the time of visit. Or, better still, the physician should ask the caregiver (which is often the one to ask in later stages of PD) to keep track of these areas. By giving the caregiver a set of areas to keep track of between visits, I believe there can be a more intelligible way of discussing these areas between physician, patient and caregiver.
Check out Rock Steady Boxing for Parkinson's. My aunt started a few months ago and has had great success.