Parkinson’s Disease Symptoms or Something Else? MaryGail’s Care Partner Story of Determination to Find Answers for Her Father

This post was developed in collaboration with Lundbeck.

If it’s true that “not all heroes wear capes,” then those who care and advocate for loved ones are among those who best fulfill this adage.

One of the most strenuous and stressful roles one can play is caring for someone with a chronic condition. This situation becomes even more taxing when caring for someone with a lesser-known condition that takes years to diagnose, which was the case with MaryGail.

As the primary care partner for her father, Ralph, MaryGail and her father struggled to find an explanation for her father’s symptoms when he fell ill. In honor of National Caregivers Awareness Month, MaryGail shared her care partner story and her relentless pursuit to find answers and treatment for her father when she suspected that something wasn’t quite right.

The Early Signs

My dad was a construction foreman, always outside and working with his hands. He was also in the Navy and served his country during the Vietnam War. As most in the armed services would agree, you’re conditioned to be neat and tidy – and dad was the embodiment of this – from the clothes he wore to the way we kept our home. So, when I began noticing that he wasn’t keeping up with the house and was spending more time lying on the couch, I became concerned.

One day, as I was cleaning up, I found medication bottles for Parkinson’s disease (PD). When I confronted him about it, my father told me that he had been recently diagnosed with PD, but brushed it off like it was insignificant.

Soon after, he began talking to me about symptoms he was experiencing, specifically getting dizzy when standing up or feeling like he would pass out when getting out of bed. His symptoms were causing him to be leery of standing or walking, feeling much safer lying down and, unfortunately, that’s why he started spending more time on the couch and in bed. His condition was causing him to change his lifestyle out of fear.

Taking Control

I knew something wasn’t right. Yes, he had PD, but the symptoms he was experiencing just didn’t sit well with me. Over the course of the next few years, he was continuously in and out of hospitals and rehab centers. We talked to countless doctors. Cardiologists would say he needed to see a neurologist, and neurologists would argue it was a cardiac problem. No one seemed to agree or genuinely take the time to listen to my father.

After yet another trip to the emergency department, his neurologist decided that he didn’t have PD but, rather, a different neurodegenerative condition called multiple system atrophy. I had enough. None of what we were being told made sense. No one could explain their rationale to me or provide a straight answer, and I was asking all the important questions.

I decided to take matters into my own hands. As a care partner, sometimes you need to put your foot down and take control of the situation. My dad went through a spell of about three days where he was constantly sleeping and not getting out of bed. I was working in the healthcare field, so I asked my colleagues who had loved ones with Parkinson’s for their advice. One of the doctors informed me that I needed to get my dad to a neurologist who specialized in movement disorders.

Finally Finding Answers

After explaining his symptoms of being dizzy when he stood up and the feeling like he was going to black out, our new neurologist, who specialized in movement disorders, took his blood pressure readings in different positions, both lying down and standing up. This was the first time anyone had ever taken this approach.

The neurologist immediately knew what was going on after seeing his blood pressure readings. We were told that my dad did in fact of PD but also a separate, and manageable condition from PD called neurogenic orthostatic hypotension (nOH), which often presents itself in patients with neurodegenerative conditions. Best of all, there was a medication that could help manage his symptoms, NORTHERA® (droxidopa). Please review the full Use for Northera and Important Safety Information below, including a boxed warning for Supine Hypertension.

What we learned was that nOH is a dysfunction in a person’s autonomic nervous system, which causes blood pressure to drop significantly when trying to stand or when changing positions, causing people to feel dizzy or lightheaded. For some, they feel like they’ll black out. Learning of nOH’s symptoms explained why he felt safer lying down and would constantly feel dizzy when he stood.

I had never felt more relieved to know that my father may not have to live the rest of his life experiencing the symptoms of nOH. Of course, NORTHERA might not be right for everyone, so I would encourage anyone to speak with their physician about treatment options that might be right for them.

This long journey has left me with three pieces of advice for anyone who is caring for a loved one and trying to find answers:

  1. Be assertive. You know what is right for your loved one and what they need. Don’t be afraid to ask for it, there is nothing wrong with being firm.
  2. Ask questions. A lot of them. There is no such thing as a dumb question when it comes to the health and safety of the person you are caring for. If you don’t feel comfortable with what you are being told, get a second or third opinion.
  3. Trust your gut. At the end of the day, you are the one spending the most time with your loved one, observing them, and listening to how they are feeling. Sometimes you know best. Trust the feeling.

Caring for a loved one isn’t easy, but it’s an important and meaningful role, especially to the person for whom you are providing care. I often say “we” when I speak about my father’s diagnosis journey because even though he was the one being treated for nOH, we went through it together.

USE OF NORTHERA (droxidopa) CAPSULES (100 mg, 200 mg, 300 mg)

NORTHERA (droxidopa) is a prescription medication used to reduce dizziness, lightheadedness, or the “feeling that you are about to black out” in adults who experience a significant drop in blood pressure when changing positions or standing (called symptomatic neurogenic orthostatic hypotension (nOH)) and who have one of the following:

      −  Parkinson’s disease (PD), a neurodegenerative disease that causes slowness in muscle movement as well as shaking in the hands

      −  Multiple system atrophy (MSA), a Parkinson’s-like disorder with more widespread effects on the brain and body

      −  Pure autonomic failure (PAF), a neurodegenerative disease that results in frequent drops in blood pressure upon standing

      −  Dopamine beta-hydroxylase deficiency, a condition where the body cannot make enough of the hormones that help regulate blood pressure

      −  Non-diabetic autonomic neuropathy, an inability to maintain blood pressure upon standing that can be caused by a number of rare diseases

Effectiveness beyond 2 weeks of treatment has not been established, and your doctor will decide if you should continue taking NORTHERA.

IMPORTANT SAFETY INFORMATION

WARNING: SUPINE HYPERTENSION (this is high blood pressure while lying down)

When lying down, elevating the head and upper body lowers the risk of high blood pressure. Check your blood pressure in this position prior to starting and during NORTHERA treatment. If you experience high blood pressure, talk to your doctor about your NORTHERA treatment.

  • Do not take NORTHERA if you have a known allergy to NORTHERA or its ingredients.
  • NORTHERA may cause high blood pressure when lying down, which could lead to strokes, heart attacks, and death. To reduce this risk of supine hypertension, take your late afternoon dose of NORTHERA at least 3 hours before going to bed.
  • Neuroleptic malignant syndrome (NMS) is a rare but potentially life-threatening side effect reported with NORTHERA. Call your doctor right away and go to the nearest emergency room if you develop these signs and symptoms: high fever, stiff muscles, movements that you cannot control, confusion or problems thinking, very fast or uneven heartbeats, or increased sweating. NORTHERA should be stopped immediately if NMS is diagnosed.
  • If you have coronary artery disease, irregular heartbeat, or heart failure, NORTHERA may worsen the symptoms of these disorders. Call your doctor if your symptoms become worse.
  • NORTHERA may cause allergic reactions. Stop taking NORTHERA and contact your doctor right away, or go to the nearest emergency room if you experience any signs or symptoms of an allergic reaction such as: fast heartbeat, nausea, vomiting, swelling, trouble breathing, hives, or rash. NORTHERA contains tartrazine (FD&C Yellow No. 5), which may also cause an allergic reaction, especially if you have had a reaction to aspirin.
  • The most common side effects with NORTHERA are headache, dizziness, nausea, and high blood pressure.
  • Taking NORTHERA with other medications may cause side effects. Tell your doctor if you take prescription or over-the-counter medicines, vitamins, or herbal supplements.
  • You should not breastfeed during treatment with NORTHERA.
  • If you plan to become or are currently pregnant, talk to your doctor as it is notknown if NORTHERA could harm your unborn baby.
  • Take NORTHERA the same way each time, either with or without food.
  • If you miss a dose of NORTHERA, take your next dose at the regularly scheduled time. Do not double the dose

For more information, please see the full Prescribing Information, including Boxed Warning for supine hypertension or go to www.NORTHERA.com.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

©2020 Lundbeck. All rights reserved. NORTHERA is a registered trademark of Lundbeck NA. Ltd. DRX-B-100397

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