Dealing with Dementia
As both the widow of someone with Lewy body dementia and a therapist for families facing dementia, I commend you on your feature on dementia ("Dementia 101," December 2015/January 2016). It's almost impossible to make people aware that Alzheimer's is not dementia, it's one of the dementias, and they all have different presentations. I especially thank you for mentioning Lewy body dementia. My late wife was misdiagnosed by five neurologists, put through electroconvulsive therapy, prescribed drugs that are contraindicated for Lewy body dementia, and told she needed to "get up and try harder." The brain scans that I now know showed Lewy bodies in her brainstem were diagnosed as multiple transient ischemic attacks (or "silent strokes").
If even one doctor or one family can read this article and recognize some of the symptoms, it will save years of heartache. If someone had taken the time to ask about my wife's gastrointestinal problems, sleep, swallowing, changes in sense of taste and smell, and many other symptoms, I believe she would have been diagnosed much quicker. Every family I see is told to report every symptom, even if it doesn't seem to be related to cognition. The result is a better diagnosis, an explanation for the family, and time to get things done. - Jill A. Johnson-Young, LCSW, Riverside, CA
My husband died a few months ago from Lewy body dementia. Prior to losing his abilities, he was a brilliant artist and jazz musician. He always thought differently and expressed himself visually and musically. Our relationship was centered on creativity and humor. The disease eventually took both. The progression was rapid and disorienting to me, his wife of 30 years.
Articles about dementia always describe the progressive cognitive and physical effects of the disease on the patient, but the psychological toll it takes on significant relationships and marriages needs to be included, too. I never knew from one minute to the next what my husband would not be able to do or what he would insist he could still do. The person who never lost his temper was suddenly angry at me much of the time. He thought I was not helping him, even though I was doing everything I could to keep his life comfortable and "normal."
This side of dementia is not described in scientific articles, even those written for the general public. The disease is exhausting and chronically challenging to the loving caretaker, who has no perspective and no time to reflect on the tragic, confusing, unpredictable, and complex undoing of the marriage, until death provides that time. There is no way to prepare for the loss of a spouse's mind. - Ruth Joray, Philadelphia, PA
Thank you for your informative article about different types of dementia. My husband has vascular dementia and I am a caregiver. I have noticed that there is a lack of material about dementia, and many people do not understand that not all dementia is Alzheimer's disease. - Marjorie Soffer Wood, St. Louis, MO
Denial and Dementia
In "Raising Hope" (December 2015/January 2016), the author writes that "people with dementia and Alzheimer's disease are also vulnerable to denial because symptoms develop slowly." Anosognosia, a condition which affects many people with dementia, can cause a lack of insight about some or even all of their deficits. Many caregivers become frustrated or angry with their loved ones who have dementia because they believe they are "in denial." This is certainly true in some cases, but not all of them. People with anosognosia aren't denying their symptoms; they are unaware of them. Understanding that fact can make a huge difference in the quality of care that people with dementia receive.
My 61-year-old husband has early-onset Alzheimer's and anosognosia. I have never been able to discuss his illness with him or plan for his future because he insists there is nothing wrong with him. He doesn't believe me or the doctors who have tried to explain his diagnosis. Please consider publishing an article about anosognosia to inform your readers about this condition. - Elaine Chemistruck, Albuquerque, NM
Managing Migraine During the Holidays
I appreciate the advice you gave about how to handle the holidays with a neurologic illness ("Holiday Gifts," December 2015/January 2016), but I wish you had included migraines. Having an unexpected flare-up on the big day can be devastating emotionally, causing a lot of self-imposed guilt and disappointment among loved ones. Thank you for an always informative publication. - Terah Kuykendall, Converse, Texas
Chiari Connection
The article about Chiari malformation and syringomyelia ("Conquering Chiari," December 2015/January 2016) resonated with me because I had surgery last October for a syrinx. Prior to a diagnosis, I was told I had idiopathic peripheral neuropathy because my symptoms included numbness on the bottom of my feet, poor balance, and a failing left leg. Doctors always asked me whether I was a diabetic or had had chemotherapy. Finally, a neurosurgeon took an MRI in the right place and found the syrinx. I think an article about syringomyelia would be very helpful. Not one of my family members or friends had ever heard of this. Even my neurosurgeon had only done 12 surgeries for syringomyelia because it's so rare. I was number 13. - Shelly Eisenhart, Brooklyn, NY
It has been a pleasure to read this past year's issues of Neurology Now from cover to cover. However, your December/January issue-well, this was absolutely the best ever. Thank you for including the information regarding Chiari malformation, as I have this disease, and not much is known about it. Also the article on how to deal with the holidays was superb. Great job! - Mariella Casinelli, Grosse Pointe Woods, MI
Finding Support for MS
Regarding "Brave New World," (Speak Up, December 2015/January 2016), I can totally relate to the author's journey from able-bodied to disabled. When I first began to struggle with balance, I would use any nearby stationary object to steady myself. I am fiercely independent and refused to seek medical attention for years, even though I experienced pain in my feet and legs, loss of balance, and occasional falls. My multiple sclerosis (MS) symptoms began in 2007, but I didn't seek treatment until 2009, and wasn't officially diagnosed until 2010.
Like the author, I am apprehensive about being seen in public with my walker or scooter. I have obtained a wheelchair through Veterans Affairs, but I only use it at home. My pain is often debilitating, and I feel vulnerable. Being a single senior, I tend to stay isolated at home, venturing out only to attend doctors' appointments, shop for groceries, or pay bills. I have no social contacts, but as my symptoms worsen, I feel the need to reach out to others with MS. I hope to find support groups in my area so that I feel less alone. - Greg White, Los Angeles, CA
I just wanted to say a huge thank you for keeping Neurology Now free to subscribers. My husband has multiple sclerosis and I discovered your publication at his doctor's office. I pore over every issue, and it has become an invaluable source of information for us. I even discovered a medication for MS patients that we never would have known about without your magazine. Thank you again, and please keep up the wonderful work. - Joanna L. Brandon, Toledo, OH
Legal Terms to Know
I found the August/September 2015 issue of Neurology Now at my health club last week, and I read through the articles with interest, especially the feature on end-of-life care ("Can We Talk?"). As part of my job as a registered nurse, I emphasize the importance of honoring my elderly patients' wishes. In the sidebar "Terms You Should Know," it says a person who has "power of attorney" may be able to make financial decisions for another person, but not health care decisions. Only someone who has "health care power of attorney" can make health care decisions for another person. In Oregon, where I live and work, we teach people to use the term "health care representative" instead of "health care power of attorney," to avoid confusion. - Laurie Barrett, RN, Portland, OR
Romney's Life with MS Is Not Mine
I was disappointed to see an article about Ann Romney and her experience with MS ("Sharing Her Story," October/November 2015). Of all the challenges a person with MS faces, the financial challenge is one of the worst, especially when you have no husband, siblings, parents, or children who can provide support when you become so ill that you can no longer work.
When I was diagnosed in 2006, I worked for as long as possible. After my health insurance ran out, I obtained another health insurance policy that cost $800 a month. I lived off a small disability stipend I received through my former employer. That was before the Affordable Care Act, when you had to pay a premium for health care if you had a pre-existing condition. Even with help from Medicare, I still have substantial medical costs and unpaid bills and very little money left to live on.
With her resources and wealth, Romney lives in a different world than someone like me. - Barbara Christy, Palm Beach Gardens, FL
