Another King

After reading the story about Larry King's recovery from stroke (“Larry King on How Curiosity and Passion for Life Aided His Stroke Recovery,” April/May 2021), I immediately thought of former Philadelphia Flyer Brian Propp. He is the survivor of a devastating stroke who has worked tirelessly to use his public platform as a local sports celebrity to publicize rehabilitation for those with brain injuries. Propp helped me personally, through a college friend, when he agreed to participate in a celebrity golf tournament and fundraiser for a local school for children with autism. (My son has autism.) Although I didn't play in the tournament, those who did told me he took time on the course to greet players. During the dinner after the tournament, Propp spoke not about hockey or his business ventures but about his arduous recovery and how blessed he felt to be alive because of the care he received at a local rehabilitation facility. As a lifelong Flyers fan, I idolized Propp as a player. Today I honor him for all he continues to do for those with disabilities, not only as a model of persistent rehabilitation but also as a community advocate. —Stanley Jaskiewicz, Lancaster, PA

Dystonia Dispatches

Not long after being diagnosed with dystonia, I created a file about the condition, including its history, types, and prevalence, and some of the famous people who had it. My research helped me cheer up and understand my disorder better. It also inspired me to create a website where all this information could live (dystoniasurveys.org). The site provides references and resources and descriptions of what it's like to live with dystonia, including how humor can help. To get a deeper understanding of the larger dystonia community, I also created a list of survey questions on the website about daily life, types of pain, ways of coping, progression of symptoms, experiences getting medical care, financial repercussions, and stress levels. The survey takes nine minutes to complete, yet people—many of whom have difficulty seeing or using their hands to type—have still thought it worthwhile to fill out. A few wrote personal notes about the survey. The anonymity of the study may have lessened the stigma for some people and encouraged them to come forward about their diagnoses. In the year the survey has been available, more than 1,635 people have completed it. Perhaps the data and the patterns revealed will help researchers understand this condition better. —Beverley Smith, Calgary, Alberta

Proof of Progress

I am a 38-year-old father, husband, and brain injury survivor. Before my injury, which was due to multiple ruptured arteriovenous malformations, I was a pastor at a Baptist church in Alabama. I credit my faith and family for my recovery, as well as intense physical therapy and, later, when I was able, regular racquetball games with my father. The quick movements and reflexes the game required helped restore my fitness and coordination. To prove to others that rehabilitation can happen, I wrote a book about my recovery, Malformations, which will be self-published through WestBow Press in September. —Paul Mcmonagle, Lynchburg, VA

Topic Suggestions

My wife has primary lateral sclerosis, and I cannot find much information about this disease online.

I would very much appreciate your doing an article on this challenging disorder for all of us who are affected by it. —Jim Nolan, Clancy, MT

My ophthalmologist monitored my eyes for years because he said I was at risk for glaucoma. I now have it. I also have high blood pressure, for which I've taken medication, and have been just fine. Recently, my doctor has been worried about my blood pressure and had me take a 24-hour blood pressure test. To our surprise, the test showed that my pressure dropped too low during the night. My doctor says that according to studies, blood pressure that is too low can damage the eyes and also the brain. Perhaps an exploration of this topic will be of use to your readers, especially those of us with this unusual problem. —Anita Deming, Silver City, NM

THE EDITOR RESPONDS: Your suggestions are much appreciated and will be considered. We try to cover as many disorders and topics as we can in the six issues we publish a year.