The Keys to Safety

Regarding "The Keys to Safety" in the October/November 2014 issue, I can relate to finding alternative methods for transportation. I have multiple sclerosis (MS), and my favorite alternative to driving is my recumbent trike. Two of my main issues with MS have been balance and fatigue. Riding a tricycle with three wheels allows me to cycle without worrying much about either problem, because I can't tip over and I can go as slow as I want. Often I can ride my trike when I'm too tired to walk. It also helps me get physical exercise. - Mary Ann Baclawski, Salem, OR

Globe Trotters on Four Wheels

Regarding the October/November 2014 article, "Globe Trotters on Four Wheels," the people obviously had the means and resources and youth to accomplish those things. Many people who read your magazine do not have any of these things. They should be taken into consideration, too.

Off-road wheelchairs or scooters can be extremely expensive, and often the funds for such items are simply not available. Young, able-bodied men who can lift wheelchairs and occupants are frequently not available, either. Spouses may not have the necessary strength to help out, or they may be elderly or infirm themselves. And who is going to pay for accommodations and food for extra people? There are job commitments and families to be considered when looking for an assistant, too. I look forward to seeing more practical information for people with neurologic conditions. - Susan C. Saltzgiver, York, PA

THE EDITOR RESPONDS: Susan, we're sorry you were disappointed in this article. Our goal here was to show how people overcame their neurological disabilities to travel the world. We hear you, though, and will continue to report on cost-conscious lifestyle choices.

For the Caregiver: It Takes A Team

I appreciate your introduction of the new department, "For the Caregiver: It Takes a Team: How to coordinate your loved one's care—and take care of yourself in the process" in the August/September 2014 issue.

Please consider providing information on being your own caregiver in a future issue. Those of us who are single and contract a neurological illness or condition are our own caregivers for at least a little while, and sometimes for the duration of the illness. For me, living independently with multiple sclerosis is a full-time job. It is also true that some people with husbands, wives, or live-in partners still carry the lion's share of the load.

People like me are constantly in the process of deciding when to find caregiving from someone else, where to go for it, how to afford it, how to maintain our privacy, and figuring out what our next move should be. - Len Silvey, Sacramento, CA

Since subscribing to Neurology Now, your magazine has become an important member of my "caregiver network." Because of a recent article, I found the grit I needed to change my husband's primary physician to one who is willing to become Louis's "quarterback." Every caregiver of a stroke patient I have met (and I now know quite a few!) has undergone a seemingly endless search for the right doctor and has found themselves subject to a maze of specialties to negotiate with sometimes conflicting opinions among specialists.

It is so welcoming to find a resource that is willing to include the caregiver as someone worth listening to and advocating for within the same publication that addresses patients' neurological conditions. With all the resources there are for caregivers, there are still not nearly enough.- Joan Beauregard, Richmond, TX

I am an adult psychiatric mental health nurse practitioner working as a clinical interventionist with a group of cardiovascular nurse researchers at the University of Kentucky College of Nursing, currently involved with a study that is focused on the heart health of family caregivers of people with dementia. It is a randomized controlled study in which caregiver participants (in the intervention arm) receive information/education on topics relating to heart health (physical activity, stress management, medication adherence, nutrition, self-care, etc.).

It is my hope that the focus of the caregiver feature will at some point address the issue of physical health, particularly cardiovascular health, among caregivers. - Mary P. Schooler, APRN, Lexington, KY

We are nursing colleagues in neurology and are each part of teams caring for people with Alzheimer's and Parkinson's disease. We both feel strongly about the importance of family-centered care, team care, and team cohesion.

We believe it is vital to help patients and families identify the team members they will need early in the disease process and then bring them into an active role when the need arises. It is also helpful to families to help them realize that the people on a team are often dictated by need and availability. In addition to health care professionals, that team may also include other people such as exercise trainers, massage therapists, clerical leaders and so forth.

Second, we want to respond to the concept of the "head coach." In our experience, the leadership of the team may change as the symptoms and needs of the patient and family change. In addition, the boundaries between roles blur. One day, the neurologist may be the main team member caring for a person with a neurologic disease; the next, another team member may be the most important contact and take the lead on coordinating and facilitating care. It is very important for patients to understand that the most effective point of contact might not always be the same person.

Finally, we were concerned about the omission of nurses in this article. Nurses provide direct patient care, support, case management, and education. As pioneers in caregiver research, nurses are familiar with, and skilled at, helping families manage the challenges they face. In addition, nurses have a long history of being active participants in health care teams where they serve as collaborators, liaisons, facilitators, and clinicians. As your new department, "For the Caregiver," grows, please consider the central roles nurses have in neurologic care. - Allison Lindaur, NP, PhD, Professor of Neurology, Portland, OR and Julie H Carter, RN, MS, ANP, Assistant Professor of Neurology, Oregon Health & Science University, Portland, OR

I read with interest your article addressed to caregivers, "It Takes a Team," asserting that caregivers need information, support, and respite. Your article offered tools to enhance the caregiving role, emphasizing the importance of self-care. However, you missed mention of the most important and pivotal member of the caregiving team: the nurse.

The nurse serves as the team's offensive coordinator, calling the plays. He or she makes the initial assessment and is instrumental in referring the patient to support-team members. Nurses innately consider the needs of the patient and routinely include families and caregivers in the plan of care. Nurses are the most highly trusted members of the workforce, and no team is complete without this member.

While all of the positions outlined are important and play a role, the nursing position cannot be overlooked, as it is critical to ensuring the trust of the entire team. Like offensive coordinators in football, the nurse moves the whole team toward the goal line. - Heidi Maloni, PhD, Washington, DC

THE EDITOR RESPONDS: Thanks for your comments. Look for more coverage of the nurse's role in caregiving in a future issue of Neurology Now.

Medication for ADHD

Regarding "How Does a Neurologist Decide Whether to Give a Drug for ADHD to Children?" (August/September 2014). I believe that parents are too quick to medicate their children rather than taking the time to explore other ways to help them.

My son was diagnosed in 1980 as "neurologically impaired emotionally handicapped," which is now called ADHD. In those days, there were not many ways to treat this ailment except to medicate. I was advised by my son's doctor to put him on Ritalin. I refused to put my six-year-old son on medication and found alternate ways to help him focus and learn. This included implementing structure and routine.

Eventually, I was forced to put him on medication because his special education teachers—who told me my son would never go to college and never amount to anything—refused to use my suggestions. I insisted that my son only be put on a small and limited dose of medication, and only when he attended school. Eventually he was taken off of it.

After years of hard work, my son graduated college and earned a Master's degree in linguistics. He currently works at a junior high school as a linguistics teacher. He is happily married and has two children.

As parents, we must help our children to succeed in life. Their success is our reward. - Lillian Gallego, Delray Beach, FL