A Difficult Diagnosis

Thank you for the feature story, "A Leader Takes on Brain Disease" (April/May 2015), about Joan Mondale's struggle with Lewy body dementia (LBD). My husband passed away from this terrible disease about a year ago. Most of the doctors we encountered had not even heard of LBD. One doctor told me that all dementias were the same, while another told me that I was the expert. In the end, my husband was confined to a nursing home, where he was given medications to control his hallucinations. When those put him in a comatose state, they were discontinued and he was placed in a geriatric psychiatric ward. This experience was terrifying! Awareness is the first step in eradicating this disease, and I applaud you for publishing this information in your latest issue. - Pam Beiderhake, Lawrenceburg, IN

My husband was first diagnosed with Parkinson's with dementia in 2010, at age 78, but a brain autopsy showed that he in fact had LBD, as well as early-stage Alzheimer's and parkinsonism. Our experience confirms the difficulty of diagnosing this condition. I'm sure I overlooked some of his earlier LBD symptoms because of his severe hearing problems and his reserved personality. When we found out about research being done at the Mayo Clinic in Jacksonville, FL, we arranged for the brain autopsy. I felt this was important as it would provide my three children with information (because this disease may be genetic) and help with further research into LBD. - Nancy Starr, Longview, TX

Stress the Positive

I agree wholeheartedly with the message in "Calm Your Mind" (April/May 2015). As a Christian counselor, I often ask my clients to keep daily diaries of their positive experiences, so I was happy to learn about Dr. Andrew Steptoe's studies demonstrating that reporting more positive experiences and positive thinking lowers levels of the "stress hormone" cortisol. I was also pleased to learn that patients who carve out time for mindfulness practices (which may include prayer) protect their brains. In my practice, I find that when my clients begin to feel closer to God through prayer, their stress is reduced. - Gearline Young, Fairfax, VA

I had my first seizure while driving when I was 25 years old. Since then I've had the best medical care possible, but because of extreme stress in the last few years, my physical and mental health have suffered. I had three strokes between December 2013 and June 2014 and was completely paralyzed on my right side. After that, I focused on reducing my stress. I started praying a lot and meditating. Although a little slower at first, I'm now able to drive and work in the house and the yard. Whenever I feel stressed, I play the piano, sing, read, and pray. God has been good to me; I just celebrated my 73rd birthday last week, with a very good report from my doctors. - Sue Walden, Athens, GA

Straight Dope

I appreciate your continued fair coverage of medical marijuana in the April/May issue ("Weed Backers"). As a long-time advocate, I want to see rational and compassionate policies regarding marijuana and, of course, more research into its efficacy and safety. But we must also understand that almost every medicine has the potential for some level of harm. Many drugs are far more potentially harmful and addictive than marijuana, and yet they can be purchased legally. Medical marijuana should be held to the same standards as other legal medicines. When it becomes available at my local dispensary and I need to use it, I will appreciate knowing what I'm purchasing and what "dose" to use. - Paul E. Robinson, PhD, Mansfield, OH

Stop the Stares

I can relate to the letter writers in the Letters section of the April/May issue ("Stigma Hurts,"). After eight years with trigeminal neuralgia, which caused vertigo, double vision, uncontrollable eye movements, dryness, and optic nerve problems, I chose to have my left eye sewn closed instead of having it removed. I told my doctor, "I came with it, I would like to leave with it." People who don't know me react in such odd ways. Once, while standing in line, someone said, "Why don't you cover your eye?" I responded, "Why should I?" No matter where I go, I'm stared at. In response, I just smile and say something positive. I'm always tickled by how contagious a smile is. - Lynise Tarring, Hilo, HI

When I am out in public and have a seizure, I get stares like you wouldn't believe. Sometimes people say I am having a fit the way dogs have fits. I feel hurt by these comments and get very touchy. To be stared at by people is so hurtful. You can't help it when you have a neurologic condition like epilepsy.- Karen Stokes, Bessemer, AL

POTS in the Spotlight

I'm writing in response to the article on postural orthostatic tachycardia syndrome (POTS) ("Take a Stand," February/March 2015). Fourteen years ago, our daughter, then 17, was diagnosed with cardioinhibitory syncope (which is a feature of POTS). For many years she had frequent episodes of fainting—up to seven or eight times a day at home and school and in public. The daily challenges of short-term memory loss and fatigue seemed insurmountable; they interfered with her schoolwork, social life, and daily life. Our doctor said she might outgrow it by the time she turned 35. She earned a college degree and married someone who can deal with the day-to-day challenges. It has been a very long road, but she has learned to manage many aspects of the condition. Raising awareness is key to helping individuals with POTS or any associated condition. We encountered so much unwillingness by public institutions to recognize our daughter's illness, which has few visible symptoms. Thank you for providing a spotlight for this and other conditions.- Michelle Whitford, Reno, NV

Aneurysm Awareness

Thank you for your feature story on actress Tamala Jones, who had a brain aneurysm ("Brain Matters," October/November 2014). I certainly agree that aneurysm awareness is so important for families and the public. I had two aneurysms in 2011, one of which ruptured. Both were clipped, and I recovered quite well. The ruptured aneurysm came on suddenly with a horrible headache, worse than any pain I had ever experienced in my life.

On the advice of my doctor, I advised my children to get CT scans when they reached their 20s, to see if they were at risk. I had no other family members with a history of aneurysm.

Your magazine is the first I have seen that mentions cerebral aneurysm. Bravo on your work! - Kathleen Moro, Dunnellon, FL

CORRECTIONS: In "Defeating a Rare Disorder" (April/May 2015), riboflavin was administered orally, not intravenously, to the six-month-old patient in Amsterdam.

In "Readers Like Me" (April/May 2015), Sarah Kraker has four grandchildren, not three. Although she has a cane and a walker, she uses neither. Two years ago, she had a discectomy due to tingling in her hands, but she does not have a bulging disc.

We regret the errors and any inconvenience they may have caused.