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Wednesday, July 19, 2017

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From left: Miles for Migraine Executive Director Shirley Kessel and volunteers Eric Mankin and Lisa Goldstein. Credit: property of Leigha Cohen photography.​

BY NOAH GLENN

In the fall of 2007, the Alliance for Headache Disorders Advocacy, a group of researchers and clinicians in migraine and headache disorders, visited Congress to discuss increasing the spending allowance for research grants but were told that nothing was likely to change unless they built public support. In response, Eileen Jones, RN, PHN, a member of the group, decided to start a competitive race. Almost a year later, with approximately 200 participants, Miles for Migraine held its first 5K and 10K run and 2-mile walk in San Francisco's Golden Gate Park. Today, the group hosts five races around the country and continues to expand, attracting more participants and raising awareness and research funds.

We spoke with Executive Director Shirley Kessel, who is based in Philadelphia, about the group's mission and ambitions.

What is your connection to migraine?

I have chronic migraine and two of my three daughters also have it. In fact, that's kind of how we started Miles for Migraine here in Philadelphia.

How did your daughter's diagnosis lead to Miles for Migraine?

My youngest daughter, Sydney, was diagnosed when she was 16. When we were at the doctor's office, the doctor suggested the exact same medication I had taken when I was in my 20s, more than 30 years ago. The doctor mentioned several other medications, which, again, were all the same medications I had taken when I was first diagnosed. When I asked why there wasn't anything new, she laughed and said, "This is the world of migraine. There's a minimal amount of research being done and the disease is underfunded." My daughter looked at me and said, "Mom this is ridiculous! We have to do something about this!"

Then what happened?

We went online and discovered Miles for Migraine. We contacted the founder, Eileen Jones, and asked if she would bring the race to Philadelphia and she agreed. And that's how we got started.

How has Miles for Migraine expanded?

We started in 2008 in San Francisco and brought the race to Philadelphia in 2013. It's expanded in Philadelphia from 40 people the first year to 500 people in 2016. As an all-volunteer organization (up until January 1, when I became the executive director), it was difficult to organize the events since it takes so many people hours. In San Francisco, we've been pretty much steady over the past seven to nine years. Now that we have a two-person staff in Philadelphia, we've been able to expand from two races to five races this year. In 2018, we hope to have nine races.  

How has Miles for Migraine affected the migraine community?

Migraine needs to be reframed as a neurologic condition and not just a headache, and also as a disease that needs more funding for research. Historically, this type of reframing happens through participatory events. Diseases like breast cancer and AIDS, for example, were destigmatized after patients got together and advocated for themselves. A live event creates a community for people with the disorder and allows the public to see that this is a serious condition.

Is stigma associated with migraine?

Most people think migraine is a bad headache and may tell someone with a migraine, "You know, I just take Advil for my headaches and I'm fine. Why can't you take that?" Or "What do you mean you have to cancel our plans again because you have a headache?" The general population doesn't understand the many symptoms that come along with migraine. If people want to really understand the issue they should read Not Tonight: Migraine and the Politics of Gender and Health by Joanna Kempner, a sociologist at Rutgers University, who examines the stigma around migraine.

How is gender related to stigma?

Migraine is a disease that affects mostly women and they've been told over time not to talk about it. They're often made to feel ashamed about it.

Who participates in Miles for Migraine?

We have people of every age because migraine also affects children. At our Philadelphia event we have a kids' scavenger hunt because sometimes children can't participate in a walk or run. We also have a youth camp for kids and their parents at the Children's Hospital of Philadelphia and also at the University of California San Francisco. So we get everybody who has migraine from as little as 4 years old up to people in their eighties at our events.

How do you encourage people to participate?

We have a patient letter we distribute in doctors' offices. Doctors typically don't have time to explain to patients why they should participate so the letter does the job for them.

How else do you encourage participation?

We may explain, for example, that new FDA-approved drugs due out next year are going to be very expensive and one way to be sure these drugs are covered by insurance is to start making some noise. The more people we have the more likely the event will be covered by the news media and create some publicity around migraine and the drugs used to treat the condition.

How do you hope these events will affect migraine awareness?

My number one hope is that our events will help to eliminate the stigma and encourage people to talk more about their disease.

How do running/walking events help foster community?

People interact very differently when they are face-to-face versus online. I've seen parents of young children with migraine brought to tears because they're so grateful for an event where they can interact with other parents. The same is true for teens. At their last educational day, when we asked them back for a closing ceremony, they asked to skip it, saying, "We all want to hang out together and just talk."

How far ahead should people commit to participating?

We like them to plan at least two months before the event because we rely on their fundraising to fund research fellowship programs. In this past year, for example, of the 30 fellowship programs that encourage doctors to specialize in headache less than 20 were filled. Doctors are not choosing to go into the field. That's a real concern for patient care.

How are Miles for Migraine's fundraising efforts?

In Philadelphia, we've been very successful. We've had the good fortune of having almost every pharmaceutical company in the migraine space sponsor us, which enables us to put on these races. We also give a significant amount of our profit to the Alliance for Headache Disorders Advocacy. Last year, the alliance brought people from more than 30 states to Capitol Hill to advocate for more migraine research and funding.

To sign up for a race, go to milesformigraine.org and see if there's a walk/run where you live. If not, look for the group's virtual event and plan to participate.

 

 

 

 

 

 

 


Wednesday, July 19, 2017

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BY NOAH GLENN

People with migraine avoid intense light mostly because it can exacerbate their headaches. But a new study published online on June 26 in Proceedings of the National Academy of Sciences says it may also trigger negative emotions as well as the perception of shortness of breath, light-headedness, irritability, and sadness. 

The Methodology

Researchers at Beth Israel Deaconess Medical Center (BIDMC) in Boston examined 81 patients diagnosed with migraine and photophobia, a condition in which headaches are made worse by bright lights, and no documented eye diseases, and 17 healthy subjects. Qualifying participants were between the ages of 15 and 85 years old.

For the clinical study, the researchers assessed patients' responses to different colors of light both during and between migraine attack (for those with migraine) and at any time (for the healthy controls).

The patients sat in a dimly lit room for 20 minutes before testing. Then a light was turned off for three minutes and patients described their symptoms to form a baseline. The patients were then exposed to light at a series of increasing intensities and multiple colors. Finally, the patients were asked to describe symptoms they experienced while looking into the light.

For the pre-clinical study, researchers examined 45 male rats to understand what photophobia looks like anatomically. They learned that cells in the eye send electrical signals generated by light to the hypothalamus, which projects them to neurons that regulate involuntary functions and emotions.

The Results

The researchers concluded that for patients with migraine photophobia, the problem most likely lies in the abnormal way the hypothalamus regulates the autonomic nervous system, not the autonomic nervous system itself. They also noted that symptoms of photophobia extend beyond just a worsening of the headache to include perceptions of chest-tightness, shortness of breath, light-headedness, irritability, sadness, and fear.


Monday, July 10, 2017

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BY SARAH OWENS

Adults who have type 1 diabetes and pain due to nerve damage may be able to reverse that damage by taking omega-3 supplements. That's the preliminary finding of a new study published online on May 17 in Neurology.

Nerve Pain Is Common

Neuropathy, or nerve pain, affects more than half of people who have type 1 diabetes, a chronic condition for which there is no cure. Although controlling blood sugars through medication, diet, and exercise can help slow the progression of nerve damage, it cannot be reversed.

Omega-3 polyunsaturated acids (omega-3s), which are found in fish, nuts, and seeds, help the body to grow and maintain the health of nerve cells. They also offer big health benefits, from boosting heart health by reducing triglyceride levels to potentially alleviating depression.

Preliminary studies have shown that animals that consume higher amounts of omega-3s have longer nerve fibers, indicating that omega-3s may help slow or stop the progression of nerve pain. Researchers decided to see if they could observe the same effect in humans.

Testing a Hypothesis

Researchers at the University of Toronto enrolled 40 patients who had been diagnosed with type 1 diabetes; 23 had varying levels of nerve pain (mild, moderate, or severe), and 17 had no pain.

From June 2015 to June 2016, participants supplemented their diets with twice daily 5 mL doses of omega-3 fatty acids derived from seal oil, which researchers believed would be absorbed more easily.

To determine nerve damage, the researchers measured the length of the nerve fibers in participants' eyes at the beginning and the end of the study. (Nerve fibers in the eye commonly deteriorate in diabetes.)

Omega-3s Improve Nerve Fiber Length

Thirty-two of the participants adhered to the 12-month supplementation plan; four completed at least four months; the remaining four did not complete four months.

The nerve fibers in the 36 patients who completed at least four months of daily supplementation increased an average of 29.2 percent, far above the 5 percent the researchers had hoped for. The 32 patients who completed all 12 months increased the length of their nerve fibers by 30.4 percent.

The results, the study authors say, appear to show that adding omega-3s to a healthy diet may reverse damage to nerve fibers caused by type 1 diabetes. The findings are preliminary, however, because the participants were not randomly assigned supplementation nor was there a control group that took a placebo. The results will have to be confirmed in future randomized, placebo-controlled studies.

Still, they say, the findings suggest that omega-3s may help boost nerve regeneration. An added bonus: increasing omega-3s, through supplements or by eating more foods that contain them, can be beneficial for brain health.

For more on the benefits of different diets for neurolgic conditions, read our story "Brain Food": bit.ly/NN-BrainFood​.


Friday, July 7, 2017

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BY SARAH OWENS

Caregivers take heed: If you experience depression, anxiety, obsessive-compulsive behavior, and other indicators of worsening mental health, you may be putting the person you're caring for at risk. A new study published in Proceedings of the National Academy of Sciences found that patients with dementia are more likely to die if their caregivers have poor mental health.

Testing Brain Health

To examine the effect of caregivers' mental health on patients' health, including their risk of dying earlier from the disease, researchers at universities in California and Canada recruited 176 pairs of patients with dementia who were treated at the University of California San Francisco Memory and Aging Center between 2007 and 2012, and their caregivers.

As part of their treatment at the center, patients completed several neurologic and psychological tests and were evaluated for cognitive and behavioral symptoms of dementia. They also had MRI brain scans. In addition, their caregivers took two sets of tests of social and emotional well-being at the UC Berkeley Psychophysiology Laboratory. One was a 36-item questionnaire that assessed the caregivers' levels of energy/fatigue, pain, emotional well-being, and social functioning. The other was a 90-item questionnaire that measured symptoms of mental health in nine areas, including depression, anxiety, hostility, obsessive-compulsive behavior, phobias, and paranoia.

Caregiver Mental Health Crucial to Patient Health

After combining the test findings and comparing the patients' cognitive health with the caregivers' mental health, the researchers found that patients were one-and-a-half times more likely to die during the five-year study period if their caregivers reported having worse mental health. In addition, the association was linear; the worse the caregivers' mental health, the more likely their patients were to die during the five-year study period.

Poor Mental Health May Weaken Social Bonds

The researchers aren't exactly sure why caregiver mental health appears to have such a pronounced effect on patient mortality, but they suspect that poor mental health may damage social bonds between patients and caregivers, which are known to lead to worse health outcomes.

The findings, the researchers conclude, demonstrate that caregiver health—and mental health in particular—should be taken very seriously by doctors treating patients with dementia. Thankfully, medications are available for depression, anxiety, obsessive-compulsive behavior, and other mental health disorders, and physicians should not hesitate to treat them.​

For ideas on how caregivers can recharge, read our article, "9 Ways Caregivers Can Recharge": bit.ly/NN-CaregiverRecharge.


Thursday, July 6, 2017

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From left: Dr. James Pacala, past president of the American Geriatrics Society (AGS), fellow AGS member Dr. David Reuben of UCLA, and AGS President Dr. Debra Saliba at the AGS 2017 Annual Scientific Meeting in May in San Antonio, TX, where Dr. Pacala and Dr. Reuben were recognized for their work on the 75th anniversary commemoration of the Society.​ Credit: © 2017, American Geriatrics Society​

​BY NOAH GLENN

In this wide-ranging interview, James Pacala, MD, MS, AGSF, past president of the American Geriatrics Society, talks about important advancements in our understanding of the aging brain and related neurologic disorders. He also shares valuable advice for caregivers.

How has the understanding of Alzheimer's disease changed over the course of your career?

One of the biggest changes is increased awareness of Alzheimer's disease and related dementias. And while meaningful treatments to alter the course of the illness have been stubbornly unresponsive, I do think there has been a big change in the number and quality of support systems for caregivers, as well as interventions that allow people to stay in their homes rather than be institutionalized, or to delay institutionalization. Everybody's still holding out hope for some type of biologic or pharmacologic treatment that will fundamentally alter the course of the disease; that just hasn't happened yet.

How has the impact of stroke changed over the years?

The decline in stroke over my 30 years of practice has been precipitous and profound, and has really changed the landscape. Stroke is still a huge problem and still devastating, but it is not as prominent in full-scope adult practice as it was 30 years ago.

Why do you think that is?

It's a real credit to preventive medicine and paying attention to vascular risk factors, and in some cases, earlier and better treatment of acute stroke. There have also been great advances in rehabilitation and the treatment of stroke survivors, but it's been the decline in the occurrence of stroke that has really changed. You just don't see as many older people who've had prior strokes as you used to.

What other changes have you seen?

In Parkinson's disease, new treatments, both pharmacologic and surgical, have emerged or been developed over the past 30 years. There is also a greater understanding of the accompanying health problems associated with the disease and how those can be treated and managed.

What are some significant advancements you foresee in relation to brain health?

I'm guardedly optimistic about genomics and genetic personalized medicine. When scientists decoded the human genome more than 10 years ago, there was great optimism that finding these genetic markers would dramatically individualize and change treatments. That has really only been borne out in a significant way in the treatment of cancer. In all other areas of medicine, that potential has not yet been realized. We've found out that markers are much more complicated than we thought. Even with the ones we understand, the genetic makeup explains only a small amount of the variation between individuals and populations. Of course, that can only get better. I think with supercomputers, computer algorithms, and artificial intelligence, sorting out really complex genetic markers and other types of personal characteristics will incrementally move us toward individualized treatment and risk assessment, but I think we're a fairly long way off. [For more about precision medicine, go to bit.ly/NN-PrecisionMedicine.]

Are there any specific mental or physical activities that you recommend to address age-related mental decline?

Everybody's doing Sudoku and crossword puzzles and stuff like that, and the data on that—I'm not an expert—but the evidence I have seen on that is pretty mixed. I think the pattern that emerges is you need to stay active mentally, physically, and socially. And as you get older, you need to become more proactive in ensuring that you engage in all three of those areas.

How can people be more proactive with exercise?

As you get older, you may get arthritis and your muscle mass may not be what it used to be, and you begin to slow down. Then you have to take a more proactive approach. It doesn't mean you have to go out and run marathons, but you have to actually schedule physical activity. You can't just rely on going out and exercising when you feel like it.

How about socially?

We all can get set in our ways. You have your group of friends, you get your routine down, and after a while you're staying at home more. You're not going out and meeting new people or exploring new social avenues. I think that can be limiting. So you have to be aware of that, and you have to push yourself to say: "I should go and learn a new thing. I should explore a new hobby or meet new people."

What other factors should people keep in mind as they age?

You want to pay attention to your health. It's beginning to emerge that paying attention to and controlling your blood pressure, for example, is probably even more important than we thought. We're understanding that uncontrolled high blood pressure may be as significant a risk factor for developing Alzheimer's disease or related dementias as some of the other traditional risk factors. You've got to try to keep yourself as finely tuned as you can.

How can diet help maintain brain health?

Heart-healthy diets or diets that help control high blood pressure are good examples of eating plans that can help you. For any other diets people are trying, just make sure your health care provider knows about them and says they're okay before you start making any changes. [For more about brain-healthy diets, go to bit.ly/NN-BrainDiets.]

What signs of dementia should people look for as they age?

That's a good question, because everybody experiences a mild diminution and slowing of some cognitive processes as they age—that's normal. And the fact that we don't have any effective treatments for pre-symptomatic cognitive disorders makes it a little bit more difficult. I would say that you need to be aware of your own functioning and when that's declining. Then you need to be in touch often with the people around you—your family members, your spouse, and friends. If they see a decline, if they're doing things for you that you used to do yourself, that's a sign that might point to the need for a broader conversation with your health care provider.

What advice do you have for the caregivers of people with Alzheimer's disease or similar illnesses?

I think it's one of the hardest jobs on the planet. Caregivers do amazingly difficult and challenging work. They probably already know this, but they have to recognize that things are going to change constantly. In the course of an illness that impacts mental health, impairment can fluctuate markedly day to day, week to week. And there can be periods when people do relatively well and periods when they really struggle or when new problems seem to crop up every day. That's hard, and that makes it qualitatively different from most other illnesses where there's a more expected trajectory. In Alzheimer's disease and related dementias, it's a jagged, variable course. Sometimes I see caregivers getting frustrated by that. And I tell them that's what they need to expect but it doesn't mean they're doing anything wrong. Simply pay attention to it and try not to get frustrated by it.

What else should caregivers be mindful of?

If you're a caregiver, you need to take care of yourself. Caregiving is a risk factor for all kinds of problems, and it is very easy to lose yourself and forget about your own needs. Caregivers need to be proactive about staying physically fit and socially active. That can be very difficult with the burdens of caring for somebody. But it's also extremely important, and resources are available to help people do that. To determine how well you're taking care of yourself, go to bit.ly/HealthInAging-Assessment.

To learn more about keeping your brain healthy throughout your life, go to bit.ly/NN-BrainHealthforLife, and listen to our podcast at bit.ly/NN-BrainHealthPodcast.