Now Hear This

The article on hearing loss  (June/July 2024) didn't mention how often people should wear hearing aids. My two younger sisters both have hearing loss. One has stopped wearing her hearing aids and claims she can read lips. The other wears hearing aids but always says “What?” Since she lives alone, she doesn't wear hearing aids while at home. Every professional we've visited says my sister should put in her hearing aids as soon as she wakes up. As the article stated, untreated hearing loss can affect cognitive abilities. Hearing aids don't work if you don't wear them. At age 75, I don't need hearing aids yet. If and when I do need them, I'll definitely wear them. I have many social activities, and I don't want to annoy people by saying “What?” all the time. —Madeline Hincken, Delray Beach, FL

I was concerned about the letter from Winifred Childers, who is isolated largely by her profound hearing loss. Besides the tips in “Hearing Aids May Lower the Risk of Cognitive Decline,” various government services are available. Telecommunications Relay Services include trained facilitators known as communication assistants, who help people who are deaf, hard of hearing, deaf/blind, or have speech disabilities communicate by telephone. A person can have a telephone with a large screen installed in the home. Callers’ voices can be heard, and their words appear on the screen, allowing real-time conversations. Another option is ClearCaptions, a service that can be used on a home phone or a mobile app (800-940-6133). Local Area Offices on Aging can refer people to groups for the deaf or hard of hearing. As for watching television, all modern TVs are equipped with closed captioning. Headphones wired to the television or wirelessly connected through Bluetooth allow viewers to increase the volume without disturbing others. —Jane E. Harmon, OTR, Carrollton, TX

As an audiologist who works with adult and geriatric populations, I see many neurologic conditions, especially early dementia and Alzheimer's disease. I'm surprised that none of your articles on these topics ever discusses hearing loss as a risk factor for dementia, as well as the importance of treating it. Hearing loss is also a major risk factor for traumatic falls. My office performs cognitive screenings in order to refer patients to neurologists or primary care physicians for further evaluation. Likewise, neurologists should understand that treating hearing loss could really help their patients as well as their patients’ families and caregivers. —Jill Copley, Dallas

THE EDITOR RESPONDS: We are happy to report that just after your letter arrived, our article on hearing loss appeared in the June/July 2024 issue.

Crossing the Bar

Sadly, some people wait too long for hospice care (June/July 2024). My mother-in-law, who was 91, was not in hospice until two days before her death after being in the hospital for almost two weeks. In my opinion, home hospice would have been a more appropriate alternative six months earlier. —Anne Cross, RN, Manchester, CT

The article on hospice missed an important component: It is hard to get accepted for this type of care. My partner, Patty, was diagnosed with Parkinson's in 2012. Now she has advanced dementia. Patty doesn't qualify for hospice. And because of dementia she does not qualify for death with dignity. A future article might focus on how hard it is to get on hospice and how to prepare for end of life. —Sally Friedman, Seattle

As a hospice nurse and educator for close to 30 years, I would like to correct the wording in the recent article on hospice care. Using the phrase “entering hospice” contributes to the confusion surrounding this type of care. It is not a place to go. Hospice services are provided to people where they reside. Some hospices have inpatient houses or centers for patients who cannot be managed at home. It is important for people to know that hospice is not a place you go. Hospice comes to you. —Mary Keenan, RN, MSN, CHPN, Oceanside, CA

THE EDITOR RESPONDS: A more accurate term is “enrolling” in hospice services, but many families and patients use “entering.” Hospice can be provided wherever patients are, whether in hospitals, nursing homes, inpatient hospice facilities, or homes. In some cases, patients may not want to die at home or have symptoms that can't be controlled at home, and they would opt to enter free-standing hospice facilities. As for hospice eligibility, it's true that hospice has guidelines for estimating a prognosis of six months or less, and people with dementia usually need help with all activities of daily living before they are eligible for hospice.

Going with the Flow

I've been doing tai chi since I was 19 (I'm now 66) and have long thought it helped lower my blood pressure and improve my digestion. I encourage others to try it and not worry too much about the correctness of the movement. I think of it as breathing through the movements. —Shane Eversfield, Ithaca, NY

Requests for Info

Spinocerebellar ataxia is a rare condition that affects balance, coordination, eyes, and hearing. You published an article on ataxia some years ago but nothing since. You also used to include the National Ataxia Foundation in the Resources department. Please write more about this disorder. —Charles Naftal, Minneapolis, MN

Please consider including an article for folks who have more than one neurologic disorder. In my case, I have multiple sclerosis and Parkinson's disease. —Michael Purcell, Mundelein, IL

At age 6, my grandson began to develop what appeared to be a tic. When outside, he would turn to the sun and repeatedly swipe his hand over his eyes. When I first saw it, I thought he was swishing away an insect, but on further observation, it was repetitive. My daughter and her husband were mystified. Then one day while in a coffee shop, they were approached by a couple who asked if their son had “sunflower syndrome.” When my sister searched the internet, she discovered that the symptoms of sunflower syndrome were exactly what her son had been exhibiting. Each swipe of the hand is a seizure [with a brief lapse of awareness]. I was hoping you might do a story on this rare form of epilepsy. It is possible that some other parents, struggling to understand the sudden, strange behavior of their child, may benefit from your article and eventually get a diagnosis and treatment. —Laura McGraw, Topanga, CA

Your magazine has been a shining light in a tunnel of darkness since I sustained two concussions in the last three years. I now experience ophthalmoplegic migraine attacks about once a month. They're agonizing, and recovery takes time. I now have eye damage since the last bout, with blurriness and pupil enlargement in my left eye. I wonder if you could do a story on this type of migraine and cluster headaches. —Sean Patrick Malloy, Punta Gorda, FL

THE EDITOR RESPONDS: The preferred term for ophthalmoplegic migraine is recurrent painful ophthalmoplegic neuropathy, or RPON, and it is associated with migraine and pupil enlargement. For future issues, we will consider this topic and the others suggested. In the meantime, visit our Disorders pages for more information about cluster headaches and ataxia.

Driving Dilemmas

A letter in the June/July issue about helping a loved one stop driving caught my attention. I had the same problem with my cousin who refused to stop driving. Most hospitals have a rehabilitation facility with a driving center where they give driving tests to those with cognitive problems. The setup looks like the inside of a car. After my cousin failed the test and realized she was a danger to herself and others, we added incentives: She could call a loved one to take her where she needed to go, and she would no longer have the cost of insurance or gas. Plus, the police wouldn't ticket her or take away the keys. I hope these ideas will help the letter writer's loved one stop driving. —Carolyn Hopper, Conway, AR

After my father was diagnosed with Alzheimer's disease, he had several car accidents. Luckily no one was hurt. I wanted to talk him out of driving, but he and my mother were in denial about his declining abilities, so I decided to hide the keys from him instead. To this day, I'm glad I hid them. I didn't want an innocent bystander or my dad to get hurt. I believe in respecting my father, but I knew in my heart this needed to be done. —C.A., Roseville, CA

Drum Therapy

I survived herpes simplex virus encephalitis thanks to receiving antiviral treatment immediately. A surprising factor in my recovery was learning to play the drums. I felt my brain was healing as I learned to play. I felt pathways popping open when I finally used my right foot on the bass drum, opposite from my left hand on the snare. Thankfully I got started on drumming in those first two years while my brain was in healing mode. I would love for the word to get out that drums—and time—do heal. —Theresa Aitkenhead, Highlands Ranch, CO

A Timely Resource

Your publication helped me deal with my husband's Parkinson's disease and my mother's vascular dementia. I recently led a panel discussion about transitioning to assisted living and hospice and used the June/July 2024 issue as a resource, particularly the stories on hospice and caregiving. I believe more people can benefit from your supportive and informative articles. —Gayle Tomasini, Clermont, FL