Get Involved in the Fight Against ALS

May is ALS Awareness Month, a great time to get involved in the fight against ALS.  In an earlier blog post, we told you a little about how you can be a voice for families living with an ALS diagnosis by becoming an ALS Advocate.  This week, we want to introduce you to some other ways you can have some fun and make a difference!

FUNDRAISING EVENTS

Are you an outdoor enthusiast? Prefer a party? Whatever your interest is, we have an event for you! The Chapter hosts four major events a year – The Walk to Defeat ALS®, the Swing for a Cure Golf Tournament, the 5Kimmswick Run, and the Ice Bucket Bash. Additionally, there are numerous Community Partner events – fundraisers organized by friends and family members – that take place throughout the year. Participation in any of these meaningful activities means more support and awareness for local people and families battling ALS.

WALK TO DEFEAT ALS®
The St. Louis and Springfield, IL Walks are our largest events.  Most people who attend a Walk to Defeat ALS® tell us it’s like no other walk they’ve been to.  There are smiles, tears and most of all an overwhelming sense of hope and community.  Bring your family, your friends and your co-workers and Walk to Defeat ALS!  Sign up as a walk team, an individual walker, or simply come out to support and be supported by hundreds of new friends who are determined to find a cure for ALS. Learn more about the Walks in June.

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Walkers cross the finish line at the 2017 Walk to Defeat ALS.

SWING FOR A CURE GOLF TOURNAMENT AND DINNER AUCTION
Enjoy golf or know someone that does?  Then come out to our annual golf tournament and dinner auction!  This event gives golfers the opportunity to support people with ALS and their families in a fun and engaging day on the greens.  Both golfers and non-golfers alike are invited to enjoy the evening happy hour and dinner auction.  Click here to learn more about this event coming up on Monday, August 20.

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We always have fun on the greens at the Swing for a Cure golf tournament!

5KIMMSWICK KEEP YOUR EYES ON THE PIES
The Blue Owl Restaurant and Bakery and the ALS Association present the ever-popular, 5Kimmswick Keep Your Eyes on the Pies! This 5k race and 1-mile walk or fun run is held in historic Kimmswick, MO and comes complete with lunch, beer and yes, the chance for race winners to take-home a mile-high apple pie.  Registration is open now for the 2018 5Kimmswick on Saturday, August 18, 2018!

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Come for the run and stay for the pie – all while you support the search for a cure for ALS!

ICE BUCKET BASH
The Ice Bucket Bash is a fun, energetic dinner party that puts St. Louis celebrities on the hot seat…err the cold seat!  Guests enjoy a three-course meal while five notable St. Louisans take the stage.  Guests then pledge donations to see the celebs take the Ice Bucket Challenge right before their eyes.  Save the date for November 16 at the Four Seasons Hotel St. Louis!

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At the Ice Bucket Bash, Keeley Companies CEO Rusty Keeley takes the Ice Bucket Challenge to support of families living with ALS.

COMMUNITY PARTNER EVENTS
Put your own creativity to work and engage the support of family and friends by planning your own community partner event!  We’ll give you tips and supportive materials to help you create an event that showcases your idea of fun.  Events can take a number of forms, including but not limited to, golf outings, bike rides, auctions, trivia nights, raffles, walks or runs.  The options are endless!  Click here for more information about hosting your own event.

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From trivia nights to ice bucket challenges, lemonade stands or car washes, become a community partner and plan your own event to help support the search for a cure!

VOLUNTEER

Care to put your talents to work and donate your time instead?  We’ve got a number of volunteer roles that help you make a difference and fit your schedule. There are one-time as well as long-term opportunities for individuals, groups and organizations.

COMMUNITY LINK
Help reduce stress on a family battling ALS by helping them with errands and other non-medical needs. As a Community Link volunteer, you’ll be matched with a family for weekly, bi-weekly or monthly visits.

PROJECT DAYS
Grab your friends, family or co-workers and plan a day of service for families with ALS. You can help with yard work, help with simple projects around the house, or get your team together and build a wheelchair ramp!

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Employees from Swank Motion Pictures installed a wheelchair ramp for the Evans family.

OFFICE SUPPORT
Help us in the office with mailings, data entry, filing and other administrative tasks. We have numerous ongoing and on-call projects available.

SPECIAL EVENT VOLUNTEERS
The St. Louis Regional Chapter holds several fundraising events throughout the year (see above!), including the Walks to Defeat ALS in June and the Swing for a Cure Golf Tournament and Dinner Auction in August.

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ALS Association volunteers make each one of our events run smoothly!

 

CHAPTER BOARD AND COMMITTEES
Board and Committee volunteers serve an important role in the day to day long term direction of the organization.

Choose the way that’s most convenient for you to get involved in the fight against ALS – attend an event, volunteer, donate –  whatever you decide, you’ll be helping people with ALS live life to the fullest while we search for treatments and a cure.  Visit our website for more information!

 

 

ALS Advocates Will Make Their Voices Heard

Tomorrow, more than five hundred advocates will gather on Capitol Hill in Washington, D.C. for National ALS Advocacy Day.  ALS advocates from all around the country will meet with members of Congress to share their stories and educate legislators about the importance of continued funding for ALS research and patient care.

Through the efforts of ALS Advocates,  more than $1 billion in federal funding has been generated for ALS-specific research since 1998. In fact, ALS Advocacy efforts have been responsible for many legislative victories, including securing veterans benefits, enacting the ALS Registry Act, appropriating funding for caregiver relief and the ALS Research Program at the Dept. of Defense, and passing the Medicare waiver.

One of those advocates who will be making her voice heard is Pattie Hamlin of Nokomis, Illinois. Pattie, who was diagnosed with ALS two years ago, and her husband Lester, will be participating in ALS Advocacy Day for the second year in a row.   She shared with us her thoughts on her role as an advocate for people with ALS:

“When I was diagnosed with ALS September 2016, the only experience my family and I had had with ALS was participating in the ALS Ice Bucket Challenge. To learn that I had a disease that would slowly lock me into my own body, was devastating. Depression hit hard. An ALS Association care services coordinator came to visit. She explained some of their services and asked what I needed. I told her many of my friends wanted to help me, but there was really nothing that they could do to help me at this point. She suggested that I ask them to sign letters to the congressman requesting continued funding for ALS research.

Somehow over the next week this just got me out of my funk. I started asking everybody I knew to sign the letters, I asked my friends to ask their friends to sign the letters. We ended up with about 3000 letters for each of my congressmen. A side benefit to this effort was that I was able to teach many people about the effects of ALS and the fact that there is no cure.

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Pattie with the more than 3,000 letters of support she collected to deliver to her legislators.

The ALS Association of St. Louis asked me later if I’d like to go with them to Washington DC to advocate directly to my legislators.  My husband and I went to Washington, D.C. that May, we were able to meet many people with ALS and their caregivers. It was a great experience to know others that were dealing with the same things that I was. In Washington we learned a lot more about what’s going on in the area of research for ALS.

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ALS Advocates visit Capitol Hill in 2017.

We spent one whole day on the Hill meeting with legislators or their representatives and explaining the importance of continued research. Many people don’t realize it but if you were in the military you’re twice as likely to be diagnosed with ALS as other people; this makes it even more important that we find a cure. My husband and I look forward to going back this year to meet up with the friends we made last year and to advocate for continued research in finding a cure.”

Even if you can’t be in Washington DC tomorrow, you can make your voice heard.  Help us send Congress a unified message that we will not stop until we have a cure for ALS – post, tweet, email or call your legislator and tell them to support people with ALS and their families! And visit our ALS Advocacy Action Center to learn more about our legislative priorities and how you can become a virtual advocate in support of legislation that advances the search for treatments and a cure.

Caregiver Confidential: Say What?

During your loved one’s journey with ALS, did friends, coworkers, or medical professionals make well-meaning but insensitive comments? Even the most well-intentioned person can utter inappropriate “words of encouragement” and behave in a hurtful manner. Being around terminal illness can make people uncomfortable, and as a result, they unintentionally say the exact wrong thing. As a caregiver, it’s not uncommon to hear, “It’s God’s will,” “Things happen for a reason,” “I don’t know how you do it,” “I know how you feel,” and “Aren’t you relieved that it is all over?”, among others. Isn’t it preferable to be a good listener, do a helpful chore for the family, or give a hug, which are true expressions of kindness and compassion?

Like many of you, I heard some questionable comments during my husband Brian’s 5-year battle with ALS. Let me relate two instances:

  1. After a hospice visit one afternoon, our visiting nurse told me that it would be better if Brian passed away. I was taken back and did not know how to respond to this unsolicited remark. Was she offering her personal opinion, or was there a medical basis for her comment? (I believe it was the former.)
  2. We had some friends over at a time when Brian was losing his ability to talk and be understood. One person commented (in Brian’s presence) that he must have lost some of his mental faculties. Nothing could have been further from the truth, at least in Brian’s case. Sadly, this friend conflated slurred speech from ALS with dementia or diminished mental capacity.

Fortunately, for every awkward, misguided comment, there are wonderful supportive friends, colleagues, and family who stand with you and your loved one and want to help. Actions speak louder than words, and you quickly learn who is and isn’t there for you and your family.

While doing research on what not to say to a caregiver, I came across a 2009 blog post by Fern Cohen, a writer and ALS patient, who addressed this topic from the perspective of an ALS patient. In her post entitled, “What Do I Do? What Do I Say?” (http://alsny.blogspot.com/2009/05/what-do-i-do-what-do-i-say.html), Fern discussed how people’s own attitudes toward serious illness may shape their interactions with an ALS patient, and she shared her coping mechanisms in these situations. Fern’s post helped put some of my experiences with awkward verbal exchanges into perspective in ways that I had not contemplated previously. For example, maybe I misread a well-intentioned but misplaced comment because of the stress I was experiencing that particular day. I now think that the interpretation of these comments may be partly influenced by the stress level in the household and on the caregiver.

Have you or your loved one been surprised by comments from friends or family? How did you respond? Please share your experiences and thoughts on this or any aspect of caregiving, current or past, in the comments section. Let’s continue the conversation.

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Idelle Winer was primary caregiver to her husband Brian, who passed away in 2010 after a 5-year battle with ALS. A retired medical publishing professional, Idelle offers her unique perspective on a variety of caregiving topics in our feature Caregiver Confidential.

 

 

Visit www.alsa-stl.org for more information and resources for caregivers of people with ALS.

The ALS Association’s Research Program

The ALS Association’s global research program, TREAT ALS (Translational Research Advancing Therapies for ALS), has remained at the forefront of ALS research since its inception in 1985.  We are the largest private funder of ALS research worldwide, and our efforts have led to some of the most promising and significant advances in ALS research.  Our approach is global – the world is our lab – enabling us to fund the top ALS researchers worldwide and ensure that the most promising research continues to be supported.  We fund projects across the research pipeline, from basic research through clinical trials, and our support has led to several potential treatments currently in clinical trials.  Since the ALS Ice Bucket Challenge in 2014, we have tripled the amount we spend in research every year- from $6 million to over $18 million – and we are committed to maintaining – and even increasing – this level.

2017 Research

The ALS Association supports a wide breadth of specific fields of study that are critical to advancing ALS research.  We are always on the lookout for the next cutting-edge field to invest in.  Below is a breakdown of some of the fields of study we are focused on:

Biomarkers The ALS Association is committed to biomarker discover, as their potential is immense.  Identifying biomarkers is vital to improving diagnosis, following disease progression, tracking response to therapy, and make clinical trials more efficient.  Our support of the TDP-43 Biomarkers Grand Challenge Program is just one example.  Dr. Timothy Miller and his team at Washington University in St. Louis won this challenge and are working to develop a biomarker to track TDP-43, a protein found in almost all cases of ALS.  Learn more about the project here.

Assistive Technology The ALS Association is working to develop accessible, portable devices for people living with ALS, in order to help them maintain a high quality of life.  The ALS Assistive Technology Challenge winners we announced in December 2016 are dedicated to achieving this! Learn more about the challenge.  Read about the winners here.

Environmental Factors Multiple factors in one’s lifestyle and surroundings, such as smoking and military service, are the only known ALS risk factors.  The ALS Association champions multiple efforts to better understand these risk factors to better understand these risk factors and drive discovery of other factors that may contribute to ALS.  Learn more about environmental factors.

Natural History Studies These studies are important to understanding the natural disease course of familial (inherited) ALS.  The ALS Association is supporting several natural history studies of SOD1 and C9orf72 ALS, which are critical to helping inform patient care and clinical testing of new treatment approaches.  Learn more about current natural history studies here.

Clinical Studies The ALS Association supports clinical management grants to improve the lives of people living with ALS and their caregivers, along with clinical trials to accelerate treatments through the drug development pipeline.  Find more information on clinical studies and current studies in clinical trials here.

Cognitive Studies There is a great deal of evidence that cognitive impairment is connected to ALS, such as overlap with frontotemporal dementia (FTD).  The ALS Association is committed to improving understanding of why and how this connection takes place.  For more information on FTD, see our past blog post.

Drug Development The ALS Association is supporting development of several different treatment approaches, including small molecules, stem cells, and gene therapy.  Our early support of antisense drugs in 2004 has paid off!  Antisense therapies have already proven effective in spiral muscular atrophy (SMA), are in trial for SOD1 and are starting in the near future targeting C9orf72.  Learn more about drug development here.

View all of the ALS Association’s scientific focus areas and even more information about current research at http://alsa.org/research.

Coping with the “New Normal” after an ALS Diagnosis

Everyone responds differently when life throws him or her a curve ball, and an ALS diagnosis might be the fastest curve ball life has to offer.  Some respond by “hitting that ball back” and go on with life fairly quickly, while others may need more time to adjust to the news and come up with a plan.  There is no right or wrong way to feel when faced with this diagnosis.

Most of us have heard about the stages of acceptance, grief and loss.  These stages describe different reactions one might have, including denial, anger, bargaining, depression, and ending with acceptance.  Acceptance does not mean giving up on hopes or dreams.  It should be the first step in making the most of life with ALS.  There is much to be done to help someone live a fuller and enjoyable life.

The following tips, adapted from Neurology Reviews: October 2010, may help someone cope with ALS:

  • Take Time to Adjust. Being diagnosed with ALS is nothing less than shocking.  Take time to absorb the information and understand what to expect.  Allow yourself time to work through emotional reactions, such as denial, anger, sadness and grief.
  • Be Hopeful. Attitude is everything.  Try to remain hopeful. Be positive. Don’t let ALS take away your spirit. Don’t let your illness define who you are.  Try to think of ALS as only one part of your life, not your entire identity.
  • Think Beyond Physical Changes. You can look at ALS as a slow death or as an opportunity to enrich your life and make the most of the time you have: time to foster deeper connections with family and friends and broaden your spiritual awareness.
  • Seek Early Treatment.  Many symptoms can be reduced with simple treatment.  Often these treatments can ease the effects of disease progression.  Ignoring manageable problems can make a difficult situation worse.
  • Take Charge of Your Care. Physicians, other professionals on your healthcare team, and family can help with healthcare decisions, but remember that you are in charge throughout your illness.  Don’t let others dictate your care. If you healthcare provider hasn’t already done so, request that he or she refer you to the nearest ALS clinic.  Your providers will also be able to help you in other ways in the future, such as signing your application for disability and social security benefits.
  • Engage Family and Friends.  Life with ALS can trigger overwhelming emotional reactions.  Keep lines of communication open, so that you are comfortable expressing your feelings. Encourage your family and friends to express their feelings as well.
  • Join a Resource/Support Group. You don’t have to face this alone. You can get a lot of support and useful information from others who have faced this disease. Your family and friends may also benefit from a support group devoted to caregivers.
  • Plan Ahead. Planning for the future allows you to be in control of decisions about your life and your care. Work with your healthcare team and family to formulate plans for life-extending treatments and end-of-life care. Make a living will and discuss it with your family.  See Aging with Dignity for more details on living wills and Five Wishes.  You may also want to consider formalizing advance directives and assigning power of attorney.

The information from this blog post was excerpted from the Living with ALS Resource Guide: After the Diagnosis: Coping with the “New Normal”.

The National ALS Registry

The National ALS Registry is the single largest ALS research project ever created and the only population-based registry in the U.S.  The registry collects information and demographics on people with ALS, connects patients to clinical trials, and funds ALS research.  The purpose of the registry is to learn more about who gets ALS and what causes ALS.  This will hopefully give scientists a more complete understanding of the disease and enable them to find a cure.

Get the Facts- ALS registry

The National ALS Registry also includes a Biorepository that stores samples for future research.

Biorepository

Recently, the Registry was used for the first time to recruit patients and caregivers into a landmark patient-focused drug development survey that captured important information on the burden of ALS across multiple dimensions, including: symptom experience, quality of life, health care resource utilization, and emotional well-being.  Other important advances made possible by the ALS Registry include attaining a 96 percent enrollment rate for registrants to be notified about ALS research opportunities (more than 100,000 such notifications being sent for over 30 clinical trials) and research funding for 13 institutions to examine what factors may contribute to ALS.  ATSDR recently released the third report on the results of the data gathered by the National ALS Registry.  You can read the report here.

If you are interested in joining the National ALS Registry or learning more about the latest news from the Registry, please visit https://www.cdc.gov/als/.

It is vital that the National ALS Registry continues to be fully funded.  Congress has started work on the Fiscal Year (FY) 2019 appropriations process and Representatives Eliot Engel (D-NY) and Peter King (R-NY) are circulating a bipartisan Dear Colleague letter in the House of Representatives (see it here), urging their colleagues to support $10 million in funding for the Registry.  The deadline for this letter has passed, but there is still more you can do to help make sure your Representatives are aware of the importance of issues affecting people with ALS.

Visit the ALS Association’s Advocacy Action Center to learn about the latest updates and news about legislative and regulatory issues being addressed by The ALS Association and to sign up to receive alerts when your action is needed to support people living with ALS.

Living with ALS: Keep Your World Large

By Julia Henderson-Kalb, OTD OTR/L and Elissa Held Bradford, PT, PhD, NCS

What do you want to be able to do in a day? What activities are important to you? Everyone craves activity. It is part of our human experience (1). However, oftentimes when people are diagnosed with a disease like ALS, their world tends to shrink. They might isolate themselves, stay at home the majority of the time, and stop doing the things they love to do in exchange for activities that aren’t very meaningful to them, like watching TV for hours on end. As part of the therapy team at Saint Louis University’s ALS Certified Center of Excellence, one of our priorities is to help people diagnosed with ALS understand how to keep their world LARGE so that they can enjoy meaningful activity for as long as possible.

What causes the world to shrink for someone living with ALS? It might be physical. The loss of mobility due to muscle weakness, balance issues, or low endurance can make it more difficult to get from point A to point B. Getting into and out of a car or using public transportation can be a problem. Once you arrive at your destination, maneuvering around might be challenging for many reasons-if there is a great distance to cover, the terrain isn’t smooth, or there isn’t enough space to move comfortably, to name a few. Loss of fine motor coordination and gross motor coordination can make completing daily activities more complicated.

Other causes of isolation from the world might not be as physically obvious but are no less influential. People living with ALS often experience feelings of depression, loss of control, and loss of “sense of self” when they are having difficulty or no longer able to complete daily activities in the way they once did (2). A common example is no longer going out to eat with family and friends, despite enjoying and participating in this activity frequently previously. When searching out the reason for this change, it is often embarrassment related to challenges with eating such as dropping utensils or coughing a lot. Furthermore, the loss of ability to verbally communicate with others has been found to be linked to a decrease in quality of life (3).

So what can be done to overcome these barriers and keep your world LARGE for as long as possible? There are several strategies to be considered to stay engaged in meaningful activities.

1.    Exercise/Physical Activity

While it might not be right for everyone with ALS, studies have shown that moderate-intensity exercise helps to maintain the strength you already have. If a person with ALS is not active, greater weakness can occur on top of the weakness caused by the disease itself (4). Prior to starting an exercise program, it’s important to talk with your doctor. Referral to a physical therapist or occupational therapist (either at an outpatient clinic or through home health) will ensure that the exercise program is appropriate for your needs and will avoid further damage to your muscles.

2.    Activity/Environmental Analysis

Sometimes the difference between being able to complete a beloved activity or not is simply a matter of changing the approach to how you do it. Sitting rather than standing while cooking can reduce the amount of energy it takes. Moving gardening items to easily accessible locations and creating a raised garden bed can allow you to garden with decreased risk of falling or using too much energy on the task.  An environmental assessment by an occupational or physical therapist can make your home or office safer and more manageable. An occupational therapist can observe you completing a specific task and give you recommendations on how to make the task completion easier.

3.    Equipment

There is a piece of medical equipment for just about every issue you can think of, and that includes helping you complete your desired activities despite most physical limitations. Adaptive equipment can be used to help you do anything from brush your teeth to drive a car. Insurance covers a few items, but many have to be paid for out-of-pocket. It is recommended that you discuss equipment options with an occupational or physical therapist so that you get the items that best fit your needs. The therapist might have an idea of how to contain cost by equipment by using something you already have or can put together at home. If you do need to purchase equipment, it is a good idea to search the internet for best pricing options. The ALS Association also has a loan closet that might have the piece of equipment you want, which can reduce cost.

When walking becomes difficult due to decreased strength, balance, or endurance, mobility devices offer options for moving around the home or in the community in a safe and effective manner. Devices from straight canes to power wheelchairs can make it possible for you to get to where you need to go with a reduced risk of falls and decreased expenditure of energy. It is recommended that you see a physical therapist or occupational therapist in order to determine what type of device is best for your particular need.

4.    Delegation

When in doubt, delegate it out! ALS is a disease that allows you to only have so much energy in your energy bank every day, and once it is gone, it’s gone. Choose the activities that are most important to you and then ask other people to help you with the other tasks. If you really want to go to your grandson’s baseball game but know that you only have so much energy in the day, someone else might need to fold the laundry. If you want to go to lunch with friends, you might need help getting dressed and ready for the day. Consider your body and your energy level. In most cases, your friends and family want to help in any way they can. Use that help as it is offered so that you can do the things that matter most to you. Remember it takes a village. We all have different roles to play at different times in our lives.

5.    Focus on What Matters Most

ALS is a chronic, progressive disease. It changes the way a person is able to move, talk, eat, and even breathe. But it cannot take away who you are as a person and what you mean to those who love you. What matters most is different for every individual. But knowing what that is and really focusing on it can free person from worrying about other things. For example, if time spent with friends and family is what matters most to you, slurring your speech in front of them might seem less important than not seeing them at all. If being out in nature is most important to you, then does it really matter if you walk or ride in a power chair to get there? Letting go of what you can’t do and allowing yourself to focus on doing what you love regardless of your limitations can create a greater sense of control, identity, and appreciation of life (5).

Elissa Held Bradford, and Julia Henderson-Kalb are part of the multidisciplinary care team at the ALS Certified Center of Excellence at Saint Louis University Hospital.


References:

(1) Boyt Schell, B.A., Gillen, G., & Scaffa, M.E. (2014). Willard and Spackman’s occupational therapy (12th ed) Lippincott, Williams, & Wilkins: Philadelphia, PA.

(2) Radomski, M.V. & Trombly Latham, C.A. (2014). Occupational therapy for physical dysfunction (7th ed). Lippincott, Williams, & Wilkins: Philadelphia, PA.

(3) Felgoise, S.H., Zaccheo, V., Duff, J., & Simmons, Z. (2016). Verbal communication impacts quality of life in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17, 179–183.

(4) Bello-Haas, V.D. & Florence, J.M. (2013). Therapeutic exercise for people with amyotrophic lateral sclerosis or motor neuron disease (review). The Cochrane Collaboration: Johne Wiley & Sons, Ltd. doi: 10.1002/14651858

(5) Foley, G., O’Mahony, P., & Hardiman, O. (2007). Perceptions of quality of life in people with ALS: Effects of coping and health care. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 8(3), 164-169.