A is for Advocacy
I cannot say enough about advocacy (“Anyone Can Become a Patient Advocate,” April/May 2022). I have been an advocate around peripheral neuropathy–related pain for the last seven years. I have found that state politics and local media coverage greatly influence how effective advocates can be. In some states, it's a real uphill battle to get recognition for health care issues. —Paul Maziarz, Auburn, IN
In November 2019, I survived a ruptured brain aneurysm, so I spent a good portion of the first part of the pandemic recovering from it. I even took up cycling and shared my story with Bicycling magazine. In the article, I shared information about several advocacy groups, including the Brain Aneurysm Foundation, the Bee Foundation, and the Lisa Foundation. In innumerable ways, each helps survivors, caregivers, and family members of those affected by aneurysms. —Audrey Wick, La Grange, TX
I would like to recommend that you profile an amazing advocate: Illinois state senator Laura Fine, who continually advocates in her leadership role on behalf of those with disabilities and mental health impairments. Her husband lost his arm in a serious car accident, and their insurance company refused to pay his medical bills and tried to drop his coverage. Her experience with the auto and health insurance companies deepened her compassionate service and advocacy for others. —Lisa Daly, Glenview, IL
Rising Above Pain
Like Patti Gilstrap, who was profiled recently (Healthy Living, December 2021/January 2022), I've had chronic pain syndrome since my central nervous system was damaged during surgery for a cavernous malformation. I also have vertigo, severe double vision, and hearing problems. For years I felt broken, until I connected with a brain injury advocacy group. I no longer feel broken, just different. I now have an electric bike, which allows me to be more independent and active. I do yoga and go to the gym. I'm also getting more proficient with my left hand. The other members of the advocacy group are an inspiration and help me be a better me. —David McClane, Kelowna, British Columbia, Canada
Documenting Dementia
The article about how the arts can help people with dementia (Healthy Living, December 2021/January 2022) resonated with my wife and me. We are caring for her 85-year-old mother, who has dementia. We also cared for my wife's father, who died from dementia in 2009. While watching his condition worsen, I wrote this poem: “It doesn't help / When things go away / No more thoughts / Just endless dayshellip; / Not driving a car / Such a loss to me / Like someone stole / My identityhellip; / And then there are times / When I'm the old me / Shame no one's around / To really see / Dementia's the name / Of this affliction of mine / It takes the soul / Leaves nothing behind.” —Lawrence E. Mize, Linthicum, MD
Do the Math
I have seen articles with evidence that keeping the brain active can help prevent Alzheimer's as we age. While some people read or do crossword puzzles, I believe that doing advanced math such as trigonometry, calculus, and electronic circuit equations will do much more. I do math from my old college textbooks for up to an hour before I sleep. —Glen W. Spielbauer, Dallas, TX
Coverage Requests
Is it possible to write an article on meningiomas? My husband and sister each had one. My sister lived for only two years after it was detected; my husband had 14 very productive years. Although it isn't in the brain and is slow growing, it can have debilitating effects since it puts pressure on different areas of the brain. I feel it is something people should know about. —Angela Mauceri, North Reading, MA
My husband died from hydrocephalus in May 2021. Over a period of three years, we saw five neurologists, and he was misdiagnosed four times. His symptoms included falling, uncontrolled urination, forgetting words, and fatigue. We were frequently told it was Alzheimer's disease. Please write an article about this condition so other readers can distinguish it from other disorders. —Gloria Weinblatt, Golden Valley, MN
I've been reading Brain & Life since I saw it in a neurologist's office many years ago. My ex-husband and son both have attention deficit hyperactivity disorder [ADHD]. I have read books about it and attended support groups, but I haven't read a recent article concerning it. —Marjorie Soffer Wood, St. Louis, MO
My partner, who had been a nurse for 40 years and a licensed grief therapist, just died from multiple system atrophy (MSA). We donated her brain to Mayo Clinic. Please consider covering this awful, terminal disease. —Randy Coller, Pleasant Lake, MI
I experience something called alarm-clock headaches, also known as hypnic headaches. When I have one, which is almost every night, I wake up at 4 a.m. in miserable pain. My neurologist and I have tried several treatments, all of which have been ineffective or intolerable. The only drug that gets me out of bed and functioning is a triptan, but even that one is beginning to fail. Any light you can shed on this disorder, or any new treatments, would be much appreciated. —Dianne Cooke, Spokane, WA
THE EDITOR RESPONDS: Thank you for all these important suggested topics, some of which we've written about already. We wrote most recently about meningiomas in our cover story on Maria Menounos in the December 2017/January 2018 issue. We last wrote about hydrocephalus in the December 2019/January 2020 issue. Both disorders will be covered in future issues. As for ADHD, we wrote about it in our April/May 2020 issue. The last time we covered MSA was in our September/October 2009 issue, so it's due for an update. We have not written about hypnic headaches but will consider the topic for a future issue.
Kudos to All
I subscribe to almost 30 publications covering a wide variety of interests. With most, I scan the articles, but with Brain & Life, I read it immediately and from cover to cover. The personal articles and general information are educational and helpful for so many people. Those responsible for producing this phenomenal magazine deserve a public service award. The stories are both heartbreaking—the emotional and financial toll on family members assuming the care of people with devastating disorders—and heartwarming. Hats off to so many people making a difference every day. —Allan Berger, Houston, TX
