Part of being human and a doctor is the experience of being a family member to patients and being a patient personally. My experience has included many family members with health issues. However, my mother's ongoing illness has affected me more than any other, and continues to do so.
In January of this year, Jarred (my husband) and I made the decision to move close to my mom and pop, in order to spend time with them both, and to help care for my mom. Mom has a rare, degenerative (worsening), incurable and fatal brain disease called Multiple System Atrophy*.
During my third year of medical school, she was in the hospital for the first time that I could remember. She was 6'1", 138 lbs of long, lean muscle from her work training, showing and breeding Morgan horses and maintaining our farm. She didn't drink, smoke or use drugs. She worked hard, prayed, seemed to do everything right. We were scared and confused when she got sick, especially because her symptoms were vague and unusual, so doctors had a difficult time diagnosing her. She had mild symptoms of imbalance about two years before she was in the hospital, and then had more severe symptoms that included shaking, asthma-like attacks, and very low blood pressure for one year before she finally received the diagnosis.
MY FAMILY'S EXPERIENCE
People who know my mother are impressed by how positive she is. MSA is a challenging disease for both the patient, who gets physically weaker and sicker while their mind stays intact, and for the other members of the family, who feel helpless and often end up taking on more and more caregiving as the disease progresses. Mom and Pop have both faced this challenge head on. Over the six years since her first hospital stay, my family has worked hard to find the best physicians, treatments, and hope available, while doing the things that make life good. And everyone else in our family and friend circles continues to try to find answers and ways to help.
Currently, Mom mostly gets around in a wheelchair and is able to walk 5-10 feet with assistance. She needs help with a lot of routine activities due to weakness and tremor (shaking). Like most patients with MSA, she takes medicine to keep her blood pressure from dropping so she can get up and go about her day. Because she has the cerebellar form of MSA, or MSA-C (see below for details), her speech is slurred, and eating takes a long time because of changes in swallowing and coordination.
In spite of all this, her humor and intellect are as sharp as ever. I considered her my best friend growing up, so I am grateful to have the time and ability to be back with her again now. My mother and I have discussed sharing our experiences here in order to bring hope and understanding to others.
A FEW QUICK FACTS ABOUT MSA:
- It's really rare. Each year, only about 5 out of 100,000 (or 0.00005%) people worldwide are thought to be living with MSA, which comes to roughly 15,000 victims in the entire U.S.! Maybe as many as 50,000 by some estimates. By comparison, there are an estimated 1 million cases of Parkinson's in the U.S., with 60,000 new cases a year. So it's no surprise that most people, including many doctors, have never heard of MSA.
- It is on the spectrum with Parkinson's in that it has similar symptoms. But under a microscope, it actually looks more like a from of dementia called Lewy Body dementia, even though MSA classically does not affect memory.
- Scientists don't know its cause, so there is no cure. However, this summer there has been persuasive research showing that it may be a prion. Prions are proteins that affect other proteins and somehow make them capable of damaging even more proteins. They are also rare and poorly understood. One of the more well-known illnesses caused by a prion is Mad Cow Disease. Medicine has no way of curing them, so while it's exciting that we may finally know what causes MSA, this answer opens up even more questions.
- There are two types of MSA: Parkinsonian and Cerebellar (or MSA-P and MSA-C), though they do overlap: MSA-P presents with more classic Parkinson's symptoms of stiffness, slow movement and shaking. MSA-C can also have shaking, and has problems with balance, coordination, swallowing speech and eye movement.
Intentions for this part of the site:
- Raise awareness of MSA, and hopefully connect with other families and individuals fighting the same disease.
- Explore aspects of caregiving for a sick adult, particularly a sick parent.
- Discuss illness and end of life issues in American culture. The silence in our country on this aspect of life creates isolation and confusion for many individuals, families, and communities.
- Occasionally talk about other aspects of being a doctor daughter to three living parents (actually now four, as my father just remarried three months ago)
- Attempt to bring beauty and humor to all of the issues above.
As I said, people are consistently amazed at the positivity of my mom's outlook. She is dealing with something many people fear more than death or dementia - having a sick body but an intact mind. All of the first four goals can be sad and challenging. But there is also a lot of beauty, love, and opportunity to laugh in this process as well, if we can just be open to it.
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