Paying for PT
I appreciated the article about physical therapy (PT) in the last issue ("The Benefits of Adding Physical Therapy to an Exercise Routine", December 2024/January 2025). During my husband's 15 years of living with Parkinson's disease, I saw how critical PT was to his mobility and emotional well-being. I was distressed to learn that some insurance companies require prior authorizations before they will continue coverage. I'm so grateful my husband's insurance company did not do that. —Jill Faber, San Francisco
Brain Injury Resources
The articles in Brain & Life have helped me and my wife, Cindi, deal with her recovery from a traumatic brain injury (TBI). They have also inspired us to develop the HOPE program, a website that includes a weeklong rehabilitation program for people who are homebound with TBI. HOPE stands for Home Option Patient Experience. After Cindi's hospital stays, we were given folders with information about follow-up appointments, medications, and occupational and physical therapy schedules. This was helpful, but we really needed help with the emotional challenges. The HOPE program is for anyone who needs extra help at home. It takes commitment and discipline every day, but once you find your rhythm with HOPE, you'll also find more joy. —Larry and Cindi Stocker, Topeka, KS
I sustained a TBI in 1995 when I was struck by a car while walking in the Finger Lakes area of New York. I've recently published All Shook Up: Finding Purpose After Traumatic Brain Injury, a book about my accident, my stay in the hospital and a rehabilitation center, subsequent home care, and my move to Phoenix in 1997. I also chronicle my switch from social work to creative writing and volunteering. I've worked as a pet therapist, helped out in animal shelters, taught English to refugees, done clerical work for the Sierra Club, and more. My book is available on Amazon and through my website. —Debra J. White, Phoenix
Tattoo for Awareness
As a mom with Parkinson's disease, I was so touched when my adult son, Jake, recently returned from Mexico with a Parkinson's disease logo tattooed on his arm. I went out and got one for myself as well. My son doesn't say much, but his actions speak volumes. He said the tattoo reminds him of how strong I am and all the good work I do for others. He also hopes it will bring more awareness to the disease. —Heidi Dorfmeister, Minneapolis
Feeding Tube Info
An article on feeding tubes (“How Do Feeding Tubes Work?” August/September 2023), discussed thickened liquids and PEG tubes. Would you consider doing a follow-up story and including VitalStim, a dysphagia therapy approved by the U.S. Food and Drug Administration? This therapy can help many patients regain swallowing function, except for those with advanced Alzheimer's disease or amyotrophic lateral sclerosis. —Linda Gibson, Indiana, PA
THE EDITOR RESPONDS: Thank you for the suggestion. We will add it to our editorial calendar.
Harsh Realities
My wife was diagnosed with Alzheimer's disease in 2015 and died in 2024. For the last six months of her life, she could not speak or feed herself. I found a wonderful private home for her that provided excellent palliative care. Having watched her horrendous end, I told my children that if I am in a similar condition, I want assisted suicide whether it is legal in the state or not. As a well-known suicide researcher, I looked up data and wrote an article about suicide in people with Alzheimer's disease. I also found articles on caretakers who verbally abuse the loved ones they are caring for and sometimes physically abuse them. I suspect that few patients with brain diseases or their caretakers live lives like the ones you describe, but I realize that you feel the need to be optimistic. However, you also need to address the real problems that patients and caretakers face. —David Lester, PHD, Felton, DE
THE EDITOR RESPONDS: Thank you for your thoughtful email. You are right that living with a neurologic disease and caring for someone with a chronic degenerative illness are not easy. We are careful not to present a rosy view of things, but we also want to help our readers manage as well as possible. And we hope our stories may inspire them.
Stroke Cautionary Tale
I had an ischemic stroke in 2020 from which I've never fully recovered. One of my doctors told me that I should have called 911 to get to the hospital faster. I had no idea I was having a stroke and waited a day before taking a car service to the hospital. By the time we arrived, I thought maybe I was having a stroke. I was sent for an MRI, then put in a bed to rest. Later I was told I had had a minor stroke. I still go to physical therapy and exercise my legs and feet every day. In addition, an aide takes me for a one-hour walk almost every day. I am 86 years old and will be hosting the 12th annual, third virtual, Legacy Film Festival on Aging, Feb. 14 to 23, in San Francisco. —Sheila Malkind, San Francisco
