Grateful for the Geists

I was diagnosed with Parkinson's disease in 2012 and am now 67. When I saw the cover story about Bill and Willie Geist (“Journalists Bill and Willie Geist Spread the Word About Parkinson’s,” December 2020/January 2021), I figured it would be like most articles I've read about prominent figures. They have access to all the bells and whistles because of their financial stability, and we are to accept what they are saying and doing as something we can say and do. But this article was different. I can see myself in Bill. I have felt as he has. I react to things and situations much like he does. My medication has done a pretty good job for me, as it has for him. I have a wonderful support system in doctors, family, and friends, but sometimes solitude is easier. I struggle daily to maintain my sense of self and to minimize my anxieties. I also adhere to a routine as much as I can, and more importantly I keep moving! Bill has done the same things to maintain his life with Parkinson's. He has validated what I tell people: I have Parkinson's…it doesn't have me! Thank you, Bill Geist! —Benita Wells, Rose Hill, NC

My late husband, Paul, had a similar attitude about Parkinson's disease to Mr. Geist's. When we retired to the beach in Delaware when Paul was in his mid-sixties, he had not been diagnosed and thought he was coping only with an essential tremor in one hand. He planned to work out and swim at the YMCA, ride his bike along the flat Delaware coast, and jog on the nearby trails. A few years into his routine, he began complaining about stumbling as he jogged and falling unexpectedly from his bike when he came to a stop. His neurologist quickly recognized the familiar signs of Parkinson's and encouraged him to keep exercising and join a Parkinson's support group. Paul always kept a positive attitude. He had a wonderful sense of humor. As his health declined, I once overheard him tell a friend that he knew he should be more depressed, but his mind was still working and life was good. He died in 2016 at age 80 after succumbing to Lewy body dementia during the last three months of his life. —Carol Stutts, Rehoboth Beach, DE

Although my husband, Ned, never had tremors, he did experience fatigue, loss of balance, overall weakness, and, at times, psychotic episodes. He tried many medications and underwent deep brain stimulation surgery, which helped greatly. Like Bill Geist, he never gave up. He had wonderful support from his doctors, therapists (both speech and physical), and nurses. He continued to keep active, physically and mentally, for as long as he could. He died at home in November 2020. We both read Brain & Life for its advice, support, and encouragement. —Maureen Williams, Kansas City, MO

The sidebar in the Geist feature about living with Parkinson's disease during the pandemic mentioned that even people who did not contract COVID-19 have experienced worse motor and nonmotor symptoms. As a fitness instructor who teaches cycling to people with neurologic disorders, I have seen this firsthand. With the stress of COVID-19 and a lack of access to in-person fitness classes, all my students have lost strength and aerobic capability. Those with Parkinson's disease—none of whom contracted the virus—also reported worse motor or nonmotor symptoms. During the pandemic, it's been an uphill battle to regain their baseline fitness levels and get symptoms under control. —Kris Meldrum, West Des Moines, IA

Psychosis Resource

I would like to commend you on your excellent article about psychosis (“What's Dementia-Related Psychosis?” December 2020/January 2021). My husband died nine years ago from Lewy body dementia, and he had periodic episodes of hallucinations and delusions. Fortunately, his weren't scary to him. I often cite the magazine's advice when leading support groups for caregivers of loved ones with dementia. —Ruth Pollard, Albuquerque, NM

More on Amnesia

The article on amnesia (“Studying Amnesia Helps Researchers Understand Memory” December 2020/January 2021) reminded me of terms I don't use routinely as a mental health professional, such as retrograde and anterograde amnesia and transient global, semantic, and procedural memory. I wish the article had gone further. For example, when it mentioned the experimental use of electromodulation for treating memory disorders, it could have mentioned that it's also used for treating mood disorders such as depression. And it could have talked about the process of repressing memories as a defense against emotional trauma and retrieving them as part of treating that trauma. These areas would have rounded out the article very nicely. —Sandra L. Samons, PhD, LMSW, Ann Arbor, MI

THE EDITOR RESPONDS: Thank you for your perspective on our article on amnesia. Since we focused exclusively on memory loss, we did not delve into mood disorders, such as depression, or coping mechanisms for emotional trauma. If we consider those topics for future issues, we will ask our experts about neuromodulation and memory retrieval.

Concussion Journey

I can sympathize with Jessica Bircann's story of a concussion and subsequent headaches (“A Dancer Discovers New Strengths After a Brain Injury,” December 2020/January 2021). When my car was T-boned at an intersection, my head went through the door window; I awoke 10 minutes later with sirens blaring and lights flashing. For a month, when I walked around the office, I couldn't remember what I had left my desk to get—lists were critical. The immediate headache pain subsided but never went away. Seven years later I struggled to focus on simple conversations. Finally, I had an appointment at the Mayo Clinic in Rochester, MN, where I underwent a battery of tests, none of which revealed anything meaningful. But one of the doctors suggested an antidepressant, which I've been taking for eight years now, and it's alleviated my headache pain. —Jack Craffey, Chicago

THE EDITOR RESPONDS: Your experience highlights the importance of partnering with your doctor to develop treatment plans that work for you and discussing the risks and benefits of any medications.

Language Reminder

My mother passed along your article about virtual schooling for children with special needs (“How to Help Your Child Succeed with Remote Learning,” December 2020/January 2021) because I have a child with special needs. That's just it: “with special needs.” Unfortunately, your article used the term “special needs children” and quoted a professional who called these young people “special needs kids.” Children with special needs are children first and foremost. In the future, please use wording like “children with special needs” instead. It's a subtle difference that supports the idea that our kids' challenges are not their identities. —Lynn Rice, Milwaukee

THE EDITOR RESPONDS: We wholeheartedly agree with your sentiment that children and adults are not defined by their neurologic disorders or challenges. We've changed the online version and will strive to use consistent wording in future issues.

Stroke Strategies

My fortysomething husband had a stroke several years ago. His speech and right side were affected. It was a huge shock. Since then, I've compiled tips I'd like to share with your readers. Ask the hospital or rehabilitation facility for a list of community and caregiver resources and what to watch out for poststroke. Investigate care coordinators who can follow up with you and your family after the patient is discharged. Look into peer support systems for the patient and the caregiver. Keep in close contact with your neurologist. Our doctors were kind, intelligent, and patient. I'm committed to advocating for stroke patients and caregivers. I'm grateful for the care we have received and hope this inspires more focus on younger stroke patients and their recovery.  —Beth Nicastro, Buffalo, NY