ALS CONNECT

Morrie Schwartz, a professor emeritus of sociology at Brandeis University, was diagnosed with ALS in the summer of 1994 and passed away in November 1995. He devoted the last year of his life to using his illness to teach others about living and dying. He was an inspiration to friends, students and colleagues—young and old—on dying with dignity. He wrote 75 aphorisms that he called “Reflections on Maintaining One’s Composure While Living With a Fatal Illness”. These aphorisms are the basis of his book,  Letting Go (later republished as Morrie: In His Own Words).

• Be clear about what you need and want
• Ask for it
• Persist in trying to get it
• If you don’t get it, know when to give up trying and accept the loss
• Know you can experience more freedom to be who you really are and want to be because you now have nothing to lose
• Learn how to combine detachment with involvement, caring with disease, despair with hope, and life with death
• Let others’ affection, love, concern, interest, admiration, and respect be enough to keep you composed
• Be patient with and accept your and others’ shortcomings and limitations— again and again and again
• When you are utterly frustrated and angry, don’t be afraid to express anger or to curse silently, under your breath or out loud if the situation permits. You don’t have to be nice all the time and get people to like you and want to be with you—just most of the time
• If you need to rail against your fate, do so while you also try to use your situation to enhance and transcend yourself and achieve a higher level of functioning, whatever that may be
• If you can’t have large victories or achievements, be grateful and celebrate the small ones. Many small ones may add up to a large one
• Watch for and enhance that which motivates you to be composed and involved
• Reduce your fear of death
• Keep your heart open for as long as you can, as wide as you can, for others and especially for yourself. Be generous, decent, and welcoming
• Be kind and loving to yourself. Befriend yourself. Be compassionate to yourself. Be gentle towards yourself. Do not put others down or criticize yourself continuously
• Friends and family may see you as less incapacitated than you are because they want you to be “better”. They have this need because they care about you. Accept this, while trying to convey your reality without imposing it on them
• Whenever a lessening of a physical power occurs, it will always feel to soon. Expect this reaction, and perhaps by preparing for it mentally, you can soften its impact
• Resist the temptation to think of yourself as useless. It will only lead to depression. Find your own ways of being and feeling useful
• At some point, be prepared to deal with profound contradictory feeling—for example, wanting to live and wanting to die, loving others and hating them
• Watch out for emotional, spiritual, or behavioral regression when you are tired, sleepless, or anxious. Try to find ways to avoid that state or get yourself out of it
• Be aware that you are living in the shadow of increasing dysfunction, discomfort, dependency, and death. Come to terms with this shadow in whatever way you can
• Allow yourself to be admired— to be an inspiration to others for your behavior, attitudes, and spirit
• Find a time of the day to face fully your dread, horror, anxiety, fear, rage, and anguish in regard to past, current, and future losses and dysfunctions. Weep and grieve deeply at this time. Once you have honored these feelings, be done with them and go back to your involving life. You may find that you are strengthened by your tears
• Maintain necessary illusions, but not completely unrealistic ones. For example, to hope that my ALS will reach a plateau or move slowly is realistic, but to expect to be cured is not. Be hopeful, but not too foolishly hopeful

Want some “more-rie”? The New Jewish Theater is starting its 2017-2018 season with a production of “Tuesdays with Morrie”, which has been adapted from Mitch Albom’s best-selling book about his relationship with his professor and mentor, Morrie Schwartz, at the end of his life.  If you’re interested, you can buy tickets here or by calling 314-442-3283.

 

By Elissa Held Bradford, PT, PhD, NCS & Julia Henderson-Kalb, MS OTR/L

Staying active and staying safe are important goals to individuals and families living with an ALS diagnosis. As a person living with ALS you may wish to maintain your independence and participate in activities meaningful to you. This may be taking a trip, going to the park with your grand-kids or being able to go to the bathroom on your own. As a family member, you want to support your loved one’s independence but also his/her safety. As physical and occupational therapists, this goal is our priority too. A common challenge to achieving this goal is falls and concern about falling. This is often complicated by the fact that we may have different perspectives on what constitutes fall risk and independence. However, we can find a happy medium by communicating, planning, and making decisions together. In this short blog post we will discuss falls, fall risk, strategies to prevent falls, fall recovery, risk tolerance and even sense of self to help you stay active and stay safe.

Falls and fall risk

Falls are defined as an unexpected contact with any lower surface. Falls are common in ALS and may result in both minor and serious injury to both the physical and mental self. Physically, fall related deaths associated with head trauma in ALS have been reported at 1.7%.[1] Mentally, falls can decrease your self-confidence and cause you do curtail your daily activities because of concern of falling. Risk of falling in those with ALS has been reported for those who take longer (>14 seconds) to stand up from a chair and walk 3 meters (about 10 ft.) demonstrating weakness in the legs and impaired balance [2]. If you or your loved one has have fallen in the past 6 months, here are some strategies to consider implementing to stay active and stay safe.

Strategies to prevent falls

The Center for Disease Control and Prevention (CDC) recommends 4 key strategies to preventing falls and fall related injuries (https://www.cdc.gov/homeandrecreationalsafety/falls/adultfalls.html, Accessed 5.18.2017).

1. Talk to your doctor

Talking to your doctor about your falls is important. They can help determine if there are other risk factors besides ALS that may be contributing to your falls, such as medications you may be taking. They can also refer you to see a physical or occupational therapist who can help develop an individualized plan to help you prevent falls. This is important because often your needs are different than others at risk for falls because of the progressive nature of ALS.

2. Do strength and balance exercises

While strength and balance exercises may not be right for everyone with ALS depending on your fatigue and ability level, evidence in ALS shows moderate-intensity exercise is beneficial [3]. In the healthy older adult, strong evidence supports the role of exercise in fall prevention [4]. In ALS, proper exercise has a role to help you maintain your strength and be more effective in using the strength you do have.

3. Have your eyes checked

Poor vision can impair your ability to detect and avoid obstacles. While vision loss is not a symptom of ALS, you may have impaired vision for other reasons. Make sure your eyeglass prescription is current.

4. Make your home safer

This is important in ALS. Make sure your home is free of clutter, including the removal of throw rugs and pieces of furniture that might cause you to trip. Lighting should be bright enough to see your surroundings but not so bright that it impairs your vision. Items used frequently should be within reach. Rails on your steps or a ramp can make it easier to safely enter your home. Outside of the house, consider the environment: are there cracks in the sidewalk or roots/holes in the yard that could create a tripping hazard? Addressing these areas might be necessary.

These CDC strategies are important but for a person living with ALS there are few other key considerations.

1. Be aware of your environment and yourself

Being aware and mindful of your movements and surroundings is key to making the right choice in the moment to stay active and stay safe. If you are feeling weak, take a rest, and avoid the rocky path.

2. Trial use of equipment that helps you move

While using equipment can feel like giving in to ALS, it can also be liberating. Find the right fit of enough support when you need it to help balance and save energy, while at the same time building more activity into your day. We often say, ‘We care less if you walk there or roll there, we care more that you get there.’ Don’t let pride or uncertainty stop you from doing the things that bring your life meaning and joy. Equipment such as a walker or wheelchair can keep your world large.

3. Know what to do in case you fall – fall recovery

Practice getting off the floor with the use of a chair or person to help you, putting your strong leg up first (http://www.webmd.com/healthy-aging/tc/how-to-get-up-safely-after-a-fall-topic-overview#2 ) Remember to check for injuries and ensure it is safe to get up after a fall. If you and your loved one struggle with rising from the floor, call for help from your local fire department or get a lift (Hoyer lift) that can help raise you from the floor.

 Risk tolerance

As we stated in the beginning, we may have different views on fall risk and independence. This is part of our risk tolerance. Risk tolerance is associated with perceived control. Initially if you live with ALS your risk tolerance may be higher because you have greater control on the day to day decisions impacting risk and you experience a greater impact by modifying how or if you do an activity. This can change as mobility becomes more limited and you may rely more on others to help you move. Family members and healthcare providers often have lower risk tolerance because they have less direct control, less direct impact, and may have seen more fall related injuries.  Remember to consider the other perspective and talk out the pros and cons of each decision to maximize both staying active and staying safe.

 Self-identification/Sense of self

Finally, who are you really and what matters most? What is often expressed to us by individuals living with ALS is how hard the loss is – not just physically but psychologically. One of those ways is how the loss of physical abilities in ALS may rob you of the very roles and activities that you use to define yourself as a person – your role as a caretaker or provider for instance, the one who cleaned the gutters, the one who took care of everyone else – your purpose in life. Part of what is hard about making decisions to stay active and stay safe is often a re-examination of your sense of self [5] and purpose. This goes deeper than most conversations about fall prevention but it can be an important one. We encourage you to have these reflections and conversations with yourself and your loved ones. Don’t shy from reaching out to a counselor or your spiritual leader if you are struggling. Your mental self is just as important as your physical self.

Staying active and staying safe is possible in ALS. By knowing your risk for falls, what you can do to reduce your risk, how others may perceive your risk and decisions and finally what is important to you, you and your family can make an informed choice each day that is right for you. Live your life with intent in the ways that matter most to you.

If you want more resources for physical or psychological help, please talk to your healthcare team or visit http://www.alsa-stl.org.

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.

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References

[1] Gil J, Funalot B, Verschueren A, Danel-Brunaud V, Camu W, Vandenberghe N, Desnuelle C, Guy N, Camdessanche JP, Cintas P and others. Causes of death amongst French patients with amyotrophic lateral sclerosis: a prospective study. Eur J Neurol 2008;15:1245-51.

[2] Montes J, Cheng B, Diamond B, Doorish C, Mitsumoto H, Gordon PH. The Timed Up and Go test: predicting falls in ALS. Amyotroph Lateral Scler 2007;8:292-5.

[3] Lui AJ, Byl NN. A systematic review of the effect of moderate intensity exercise on function and disease progression in amyotrophic lateral sclerosis. Journal of neurologic physical therapy : JNPT 2009;33:68-87.

[4] Gillespie L, Handoll H. Prevention of falls and fall-related injuries in older people. Inj Prev 2009;15:354-5.

[5] Charmaz K. The self as habit: The reconstruction of self in chronic illness. The Occupational Therapy Journal of Research 2002;22:315-415.

Gina Baldwin is a licensed Speech Pathologist with over 30 years of experience in the field. She holds a Bachelor of Science degree in Speech Language Pathology and a Master of Science degree in Speech Language Pathology from Southern Illinois University at Edwardsville, IL. Strongly motivated to make a difference in people’s lives, she currently devotes the majority of her professional time to providing speech therapy services in healthcare facilities and in home health environments. We are excited to welcome her as a guest blogger to ALS Connect.

As a Speech Language Pathologist, I have experienced the joy of my patients’ successes as well as my share of frustration that I could not help them achieve more. I recognized a major gap in communication when I was providing speech therapy to a 68 year-old speech-impaired patient. She and her family became frustrated while trying to communicate using Skype. My patient tried to position her picture communication board toward the camera and pointed to pictures. Her family could not see what she was pointing to and there was silence. The picture communication board did not have speech output. I stood there and watched my patient become annoyed and I experienced it too.

Augmentative and Alternative Communication (AAC) is a solution to replace and/or assist in everyday communication situations. My patient and I discussed AAC, (also known as speech generating devices), but after many trials of different systems, we were back to square one; the picture communication board. We found that the AAC systems available did not meet her needs. They were too complicated for her to use and very expensive. In addition, she did not like the cartoon characters and stick figures that were used to depict a want, need or category.

 

Frustrated that there wasn’t anything currently available that was appropriate for her situation, I set out to create something myself. I designed and created APP2Speak™ (APP2Speak.com) an inexpensive, easy-to-use AAC software application for the iPad. Users can customize pages and personalize lifestyle information by using their own pictures, adding words, phrases and select text-to-speech or record their own voice.

Most people with ALS experience difficulty with speech and movement during the course of their illness. Some individuals will completely lose their ability to speak and to use their hands. The inability to speak is frustrating, emotionally devastating and one of the most challenging obstacles to manage successfully. Technology can be used to help a person with ALS to communicate so they can be an active participant in their family and community life, become more independent, and make medical decisions. These people must completely rely on another method to make all of their ideas, wants, or needs known.

Several months ago I had the privilege of meeting a gentleman who had a great sense of humor. His wife helped him set up the custom pages on APP2Speak™. They took a picture of his mustache and recorded speech output saying, “Can you help me shave?” Another custom picture was a personal mug filled with beer and recorded speech output saying, “beer me”.  Customization is a means to personalize your expression, to show your personality and to connect with family and friends. The gift of speech is worth millions of conversations.

A few weeks ago I had the pleasure of having lunch with a friend I met at the ALS walk last year. I wanted to experience her voiceless world with her! We communicated using my voice (at times) and 2 AAC systems: APP2Speak™ and Talk to Me Technologies device.

Talk to Me Technologies is a computer with Windows platform with speech output software. This AAC system allows my friend to accomplish many things, for example, email, Facebook, internet searches and communication. She also has an iPad with APP2Speak™ software application. She uses APP2Speak™ for communicating in situations when she doesn’t need to have a computer. It’s easy to use and she particularly likes the text-to- speech page. (She was the inspiration for me to add this feature).

Communication is a means to express what we know. It is integral in all facets of life, especially the enjoyment of our relationships with loved ones, our friends and in our participation in everyday activities within our home and community.

For more information on Assistive Technology and Augmentative/Alternative Communications Devices, please click here.  You can learn more about APP2Speak™ by visiting http://www.app2speak.com/index.html.

As we officially enter into September, we can’t help but look back at this month and compare it to August 2014.  This August was a busy month filled with events, not unlike past Augusts.  While our social media pages were less inundated with videos of people taking the challenge, many families are still feeling the impact of this viral sensation.  We continue to hear stories of what this means to people even three years later.  Sabrina Jones is one such person and here she reflects on where she was in August 2014 and the journey her family has been on since. 

Looking back at August 2014… One of my friends challenged me to do the Ice bucket Challenge.  I’m not sure if they’re really a friend, though, since I was about 36 weeks pregnant!  But, like a champ, I rocked the Challenge–not just once, but twice since my husband “forgot” to record the first bucket!  At that time, I had no real idea what ALS was or why it mattered.  “The Challenge” was something fun my friends challenged me to do, and I couldn’t wait to donate and challenge others!  To be honest, looking back on that time in life, it was nice having no clue of what ALS is and does.

This past September 2016, my mother, Pattie Hamlin, was diagnosed with ALS after having some symptoms for about a year.  This was a terrifying time for my family.  We were all now forced to learn and know what ALS is.

After about a month or so of living in what felt like a deep dark lonely hole, my mother decided to reach out and be an advocate for ALS.  Her first order of business was to help advocate for other ALS patients by encouraging others in our state to write to their congressman.  My mother went above and beyond and collected about 3,000 signed letters!!  She’s also helped get votes out so our Nokomis School District would win a Holiday Mannequin Challenge that got us $50,000 from GivIt that was split between ALS research and our hometown school district, Nokomis School District.  My dad, Lester Hamlin, and mother also went to Washington, DC to again advocate for ALS patients’ needs.  After that, they came home to lead about 150 family members, friends, and coworkers in the Walk to Defeat ALS in Springfield, IL.  Our amazing team, Pattie’s Posse, was able to raise and donate $39,735.  I’m sure I’ve left something out because it’s been a whirlwind!

Thanks to all the hard work of the many people who participated in the Ice Bucket Challenge and who also continue to advocate for ALS patients, a new drug is being released this month for ALS patients.  This isn’t a cure, but it’s giving us a small glimpse of light at the end of the tunnel–to someday conquer this disease!

The diagnosis of ALS isn’t something we’d ever imagined.  However, when life gave my mom lemons… she has turned around and made the best lemonade she knows how!