TOOLS AND STRATEGIES FOR LIVING WITH PPPD
by Rev. Carol Rexroad Cannon
Orangeburg, South Carolina
Early one morning in August 2016, I was suddenly struck with severe vertigo. After two doses of Antivert did not make any difference, my GP told my husband to get me to the ER. The medical team there ran the basic tests but could not get the vertigo under control (i.e., I could not walk on my own from the bed to a chair three feet away). Therefore, they admitted me to the hospital. The next day an MRI was done which revealed unusual inflammation in my brain. That led the neurologist to order an abdominal CT scan and a lumbar puncture (aka spinal tap). Those tests revealed some spots in my liver and abnormalities in my spinal fluid. Thus began my adventure through cancer and neurological land.
After nine months of numerous tests (blood work, liver biopsy, more MRI’s and CT scans, PET scan, mammogram, EEG, EKG, and an endoscopic ultrasound), the oncologist could not find any sign of cancer and the neurologists could not diagnose a neurological or auto-immune condition. That assessment was very good news.
Meanwhile, to my great fortune, during my six days in the hospital I met a vestibular rehab specialist, Melanie Franke, DPT. She gave me some basic gaze stabilization exercises to do and recommended I check out vestibular.org. I was so excited to get some answers, until the oncologist came in an hour later and told me about the spots on my liver. After I received the results of the liver biopsy which showed no sign of cancer, I had my GP refer me to Dr. Franke. After twelve weeks of Vestibular Rehab Therapy (while also undergoing multiple neurological and cancer related tests), I was back on my feet and driving again.
However, I still experienced sensory overload, difficulty in crowds, and fatigue. The neurologist thought the symptoms indicated an auto-immune disease, so she wanted to refer me to a rheumatologist. My husband and I felt that she was addressing test results rather than my symptoms. Therefore, we decided not to go that route.
I was managing alright, or so I thought. However, things came to a head in July 2017 when we attended a family wedding in Brooklyn and also visited our daughter who lives there. My husband and daughters recognized that it was clear I was not doing well. (A meltdown at the wedding reception established that.) Providentially, on the way home, we visited a friend in Harrisonburg, Virginia. Based on her experience as a breast cancer patient, she recommended we look into the book “The Patient’s Playbook” by Leslie D. Michelson. It serves as a guide to help develop a team and a plan to find the specialist who can best treat an individual’s particular situation. Using its guidelines and the resources of VeDA, we decided to contact Richard Clendaniel, PT, PhD, at Duke University Medical Center.
Nine days later, we were in Dr. Clendaniel’s office. He listened carefully to my story and ran a battery of tests, using equipment unavailable in my local hospital. Based on that, he diagnosed me with vestibular neuritis that had developed into PPPD (Persistent Postural Perceptual Dizziness). He developed an exercise specifically for me and sent me home. He also recommended that I ask my GP to prescribe Celexa. Since I live five hours away from Duke, Dr. Clendaniel offered to remain in contact via email and phone. That arrangement has worked well.
With the addition of the Celexa and the new exercise, I greatly improved. My family quickly saw results. I can now easily enter into situations that would have been extremely difficult before I saw Dr. Clendaniel.
However, I still have difficulty in situations with noisy crowds, especially in an unfamiliar place. These situations can range from a basketball game to a meeting with 100 people to a busy restaurant to a concert. Other triggers can be more unexpected, like suddenly turning as I walk while gazing up at a beautiful blue sky. Therefore, I have developed a tool kit that I carry with me for situations which may prove difficult. The items are listed below.
1. Packable hat with a 3.5” brim. I keep this in my car or backpack at all times, pulling it out when needed. It helps reduce the effects of bright overhead lights, ceiling fans, peripheral distractions, and sounds echoing from above. For formal occasions like weddings or funerals, I wear a nicer white hat with a band that matches my dress.
2. Noise-canceling ear buds/headphones. On that memorable trip to Brooklyn for the wedding, my twenty-something daughters began texting each other in the apartment where we were staying. “Noise cancelling ear buds for Mom?” “Yes.” “What kind?” “Best we can afford.” “When?” “Now.” “Where?” “There’s a Target nearby.” The next morning they presented the ear buds to me. I had no idea what a lifesaver they would be. In a restaurant, they block out ambient noise. During a worship service with a loud sound system, they block out the distracting noises while still allowing me to understand the speaker. Wireless ear buds were just becoming available when they bought them, so I’ve got ones with wires. If you can afford them, the wireless ones are more inconspicuous, which is helpful in some situations.
3. Hiking (trekking) poles. I discovered how helpful these are when I was discharged from the hospital. We had been planning a trip to the Berkshire Mountains around the time I was in the hospital. We decided to still go to the mountains, but chose ones that were closer by in North Carolina. Even though I was discharged from the hospital with a walker, I thought my vertigo would dissipate within a few days. So I packed my hiking poles. I quickly learned how much more maneuverable the hiking poles were than the walker and how much better I felt using them. I could stand erect; people didn’t look at me as an invalid; I could fit into tight places; I could move faster; they pack much more easily.
I now keep a hiking pole in each of our cars, so that one is always available if I need it. I generally don’t use it. However, if I’m going into a situation that I know will be challenging, I have it ready. I will also pack two if I think I may need the additional stability.
4. Afternoon nap. After a full morning, my body generally needs to lie horizontal in bed.” If we are traveling, I can do this in the passenger side of the car with the seat reclined. However, I’ve learned it works better if I put my pajamas on and crawl into bed. I will nap anywhere from 30 minutes to two hours, depending upon how strenuous the morning and/or previous day was. To help me rest in the car, I store a small pillow, a blanket and an eye shade in it.
I’ve learned that if I think I don’t need the nap, I pay for it the next day. I’ve also found a folded over bandana is more effective (and cheaper) than a manufactured eye shade. As an added bonus, I’ve discovered that eating a small piece of dark chocolate helps give me energy after I nap.
5. Supportive family and people at work. This is listed last but is the most important. Through this entire journey, my husband Robert has been loving and supportive. We share a job as pastors of a United Methodist Church, and he has picked up the load both at work and around the house. He has gone with me to every doctor’s appointment, because we have learned that two sets of ears help us remember and interpret what the doctor says. At times, Robert encourages me when I step outside my comfort zone. At other times, he raises an eyebrow when he thinks all that I am planning to do may be overdoing it. Our marriage of 36 years has deepened and our love has grown through this experience.
Both of our daughters, Sarah and Betsy, live several states away. Each has been a tremendous source of support. They have been willing to come home if necessary. They also provide a listening ear. Furthermore, both are willing to adjust their schedules for my sake. When Sarah got married this past summer, she and her fiancé John planned wedding activities at times and in settings with my needs in mind. In particular, the family isolated me prior to the wedding itself so that I was my best self for the ceremony and did not become “the main distraction.”
Church members inquire about my health and are understanding when I can’t participate in all activities. They are delighted with the things I can do. When I first got sick, they didn’t mind that I had to use hiking poles to stand when I preached. They pray for me. They accept the fact that I do a lot of office work at home rather than in the church building. Members also provide transportation when I have to travel to activities an hour away. In addition, my regional supervisors are very supportive.
I am very grateful to have an organization like VeDA that has served as a support system for me. Their printed materials and articles on-line have reassured me that I am not alone with this condition which makes me feel so disoriented and unbalanced at times. Their resources led me to the specialist who was able to diagnose and recommend a treatment for my PPPD. I have not participated in on-line support groups, because I choose to spend my limited screen time in ways related to my work. Still, VeDA has helped me gain balance in my life when the world around me feels unbalanced. For that, I am most grateful.