A Parkinson’s disease diagnosis can often blindside a family, especially because symptoms can vary widely and a definitive test for the disease doesn’t exist.

“There are other syndromes with similar or overlapping symptoms, and about 35% of Parkinson’s patients never even experience tremors,” said Anissa Mitchell, LCSW, Advisory Board Chair for the Parkinson Association of Central Florida.

If you or your loved one has received a diagnosis, it’s important to ask the doctor the right questions to ensure the next best steps.

Since it’s such an individualized disease, no two Parkinson’s diagnoses are the same. So while the answers to these questions will vary by person, let’s review what to ask and what to keep in mind when you get those answers.

1. Should I start medication?

Whether someone should start taking medication will depend on their particular situation and their doctor’s advice, of course. However, a general rule of thumb is:

If symptoms are interfering with quality of life and activities of daily living, it’s probably time to consider medication.

Some patients delay taking medication because they fear its effectiveness will eventually wear off. This is a myth. The medicine doesn’t stop working simply from taking it for too long. The reality is that dosage must be increased over time to continue seeing benefits since Parkinson’s is a progressive chronic disease.

“Sinemet, a combination of levodopa and carbidopa, is a commonly prescribed medication,” said Mitchell, whose mother lives with Parkinson’s. “It’s important that the drug be taken on an empty stomach or with a non-protein food source because protein will compete with the medication for absorption in the body. That’s something not everyone is aware of, but it’s important to note if you or your loved one is prescribed it.”

2. What should I do in the event of a bad reaction?

If the doctor does prescribe medication, it’s critical to understand next steps if that medicine triggers a reaction before your next scheduled appointment. Some questions to ask:

  • If I call the office, can I reach you directly? If not, who do I talk to?
  • What if I notice a reaction after office hours?
  • Should I stop taking the medication right away?
  • Do I need to wean off the medicine gradually?

Of course, how certain people react to certain medication varies, but it’s important to have a plan in place so you’re prepared if a negative reaction occurs.

3. How else can I manage symptoms and improve quality of life aside from medicine?

There are several non-pharmacological ways to help manage Parkinson’s disease depending on a person’s abilities and pre-existing conditions.

A key to proactively managing quality of life is physical activity.

Ask the doctor the best exercise to be doing given your or your loved one’s symptoms. Also ask what types of physical activity are safe and which are unsafe. There’s a reason an active lifestyle is central to a quality assisted living community, especially in Florida.

Another major factor is eating a healthy and balanced diet. Constipation is a common early symptom of the disease, and it can become troublesome over time.

“A high-fiber diet is typically advised for those diagnosed with Parkinson’s,” said Mitchell. “Specifically, we see the Mediterranean diet recommended often, but it’s critical to ask your doctor what’s best for you or your loved one’s particular situation.”

4. What symptoms should I look out for that you, as my doctor, would want to know about?

Again, because every Parkinson’s diagnosis is different, symptoms can vary — and it’s difficult to predict what may come next. However, you should ask the doctor if there are particular symptoms or red flags they would want to know about right away.

Generally, some major symptoms worth noting include:

  • New or worsening pain or rigidity
  • Increased depression and/or anxiety
  • Changes in thinking or memory loss
  • Difficulty sleeping or changes in sleeping habits
  • Hallucinations or hearing things that aren’t there
  • Abnormal obsessive behaviors (compulsive shopping, unusual sexual behavior, etc.)

5. Should I be evaluated for therapy?

Physical therapy, occupational therapy and/or speech therapy may be appropriate for certain Parkinson’s diagnoses.

Some people may experience swallowing issues or vocal changes as a prominent symptom early on, but they may write it off as something unrelated. That’s where a speech therapist can help.

Physical therapy can also be a proactive approach to strengthen weaker muscles and help mitigate changes that have already started to occur. Occupational therapists can help with self-care tasks and other activities of daily living, including assisting with adaptive equipment, as needed.

There has been significant success with LSVT programs in people with Parkinson’s, so therapy is definitely a worthwhile consideration. Some larger neurology centers in Florida have therapists on staff, but if your doctor’s office doesn’t, ask if they would recommend a referral to therapy as a next step.

6. Where can I get more information and support?

Doctors often don’t have time for extensive patient education, so a crucial next question is: “What are reliable resources where I can learn about my disease?”

Like any chronic disease, knowledge is power — both for the patient and their caregiver(s).

Someone with Parkinson’s may only see their doctor every few months, so it’s important for them and their caregivers to understand the disease, what to look for and how to communicate changes to the doctor. Ask your doctor for recommendations to classes, organizations and support groups in your community.

“It’s not just about education. Social support is vital, too,” said Mitchell. “This tends to be an isolating disease, because symptoms can make the person feel self-conscious, they may have trouble speaking, and they often suffer from anxiety and depression. All of this can lead them to withdraw socially. Support groups can help combat this negative cycle.”

There’s a positive difference in those with Parkinson’s who engage socially — both with their existing social network and others living with the disease — because they don’t have to explain themselves, they’re accepted, and they can learn from each other.

7. Are there opportunities to get involved in research or a clinical trial?

Participating in a clinical trial or other research-based treatment could not only help a person diagnosed with Parkinson’s feel better, but it could also contribute to better treatment or even a future cure. Plus, not all clinical trials are medication-based. A lot of the research being conducted right now is focused on early stages of the disease, before patients get heavily involved with medications.

Caregivers must be involved from the very beginning

Those who receive a Parkinson’s diagnosis may initially be hesitant to involve their partner, child or another family member or friend because they may think, “This is my problem to handle, and I don’t want to drag them into it.”

But it’s so important to have that caregiver engaged from the onset so that they can understand how the disease will affect them, learn the medications and know what the doctor is recommending. This Parkinson’s Awareness Month, consider how you can educate, support and encourage your loved one and others living with and affected by Parkinson’s disease in your community.

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