More Resources for People with ALS

The toll that ALS takes on a family is devastating – and can strain a family emotionally, physically and financially.   The ALS Association helps ease the physical, emotional and financial burdens that often accompany an ALS diagnosis by providing free programs and services to help people with ALS and their loved ones manage this journey. We also have an extensive referral network and can help identify additional support within the community.

The following organizations may be able to provide additional resources to families in need of assistance and guidance:

App2Speak
Easy to use speech and communication application for the iPad.  Offers a 30 day trial.

Friends of Pam Scholarship Fund
The Friends of Pam Scholarship Fund provides up to $5,000 in awards/scholarships for children of people with ALS.

Family Hire
Family Hire provides a safe and efficient way for families to interview, choose and employ caregivers directly for their loved one. This innovative approach to in-home care empowers families to make the choices that best fit their needs, preferences and budget.

Association for Fronto Temporal Degeneration
Offering support programs for patients and caregivers of those living with FTD as well as research opportunities.

International Ventilator Users Network
Dedicated to enhancing the lives and independence of users of home mechanical ventilation.

The Dream Foundation
Grants wishes to terminally ill adults with a life expectancy of one year or less and whose limited resources leave them unable to realize such dreams for themselves on their own.

Hope Loves Company Kid’s Camp
Hope Loves Company sponsors free three-day overnight retreats for children and young adults affected by ALS.

National Education for Service Assistance Dogs
Provides detailed information on how dogs are being trained to assist individuals with all activities of daily living.

Team Gleason
Helps individuals with neuromuscular diseases or injuries receive leading edge technology and equipment.

The Message Bank
A joint project between Boston Children’s Hospital and Tobii Dynavox with a goal of providing a free and open message bank resource for people at risk of losing their voice.

Ramp Up
The UCP Ramp Up Foundation provides grants to low income individuals with disabilities living in a single family home in the state of Illinois. Income limits apply. Funds are used to build ramps, lifts accessible bathrooms and kitchens, door widening, elevators, stair

United Special Sportsman Alliance
An all-volunteer 501(c)(3) non-profit wish granting charity that specializes in sending critically ill and disabled youth and disabled veterans on a free outdoor adventure of their dreams.

United Way 211
A nationwide information and referral line, offering access to over 40,000 resources.

Voice Banking
A free online tool to help people through every step of the message banking process to record their voice, which can then be transferred to speech generating devices or to a text to speech app that plays audio files.

Visit www.alsa-stl.org for more information and resources on ALS.

Understanding Insurance and Benefits When You Have ALS

Navigating the maze of health insurance is challenging for anyone and can be particularly overwhelming for people with ALS.  We’ve compiled some tips and information that may help save you time and energy spent figuring out the complicated web of insurance benefits.

Questions to Ask Your Health Insurance Provider

A diagnosis of ALS can certainly be overwhelming and many ask, “where do I begin?” What will I need? What does my insurance cover? Below is a list of questions you should ask your insurer:

  • Is there an annual deductible?
  • Is there an annual out-of-pocket expense limit or maximum? If I meet my limit, does my coverage increase and to what extent?
  • Do I have a major medical plan? Is there an annual or lifetime maximum?
  • Do I need to complete any claim forms?
  • Am I subject to pre-existing condition regulations?
  • What does insurance cover/not cover for a person with ALS?
  • Does my plan cover durable medical equipment?
  • Does my plan cover prescription drugs?
  • Does my plan cover home health coverage? Is there a preferred home healthcare agency I must use?

Social Security Disability Insurance (SSDI)

When you are diagnosed with ALS, making a decision to stop working and apply for SSDI may be difficult, but the process for applying for it and Medicare should be relatively easy.  You can file for benefits once you are no longer able to work, or if your current Substantial Gainful Activity (SGA) is below the allotted amount.  The easiest way to file for SSDI is to do so online at http://socialsecurity.gov.  You will need the names and addresses of your doctors, as well as a very brief outline of the work you have done in the last 15 years.  If you are unable to apply online, you can call the Social Security Administration at 1-800-722-1213 or you can apply in person at your local social security office.  Because ALS is on the Social Security Administration’s list of Compassionate Allowances, Social Security will grant you disability status immediately once an application is filed.  There is a full five-month waiting period, so even though Social Security will award disability status immediately, no monetary benefits are paid until after there has been no work for five full months.  Once you are approved for benefits and the full five month waiting period has passed, you will receive monthly monetary payments for you, and in most cases, your minor children and a spouse who cares for your children under age 16.  Your Social Security statement and an on-line benefits estimator can be obtained at http://ssa.gov/myaccount.

Supplemental Security Income (SSI)

Supplemental Security Income provides cash to meet basic needs for food, clothing and shelter to those age 65 and older, blind, or disable who have little or no income.  Individuals and their children may be eligible for SSI even if they have never worked or have an insufficient insured status for SSDI.  SSI is a Federal income supplement program funded by general tax revenues, not Social Security taxes.  Each individual who applies for SSDI is also screened for SSI benefits.  SSI payments may be available during the usual 5-month waiting period before SSDI cash benefits begin. Those eligible for SSI may be automatically eligible for Medicaid benefits.

Medicare and Medicaid

Medicare is a federal health insurance program administered by the Centers for Medicare and Medicaid Services (CMS).  Medicare is available to persons of age 65 and older (and their spouses) and persons eligible for SSDI.  Medicare Part A (hospital insurance) helps pay for care in hospitals as an inpatient, skilled nursing facilities, hospice care, and some home healthcare. This coverage is free to SSDI recipients.  Part B (medical insurance) helps pay for doctors’ services, outpatient hospital care, and some other medical services that Part A does not cover, such as physical and occupational therapy, and some home healthcare. Part B helps pay for these services and supplies when they are medically necessary.  There is a monthly premium for this coverage.  If an individual is also a Medicaid recipient, their monthly premium for Medicare may be paid by their Medicaid benefits.  Please refer to the official Medicare website for the most up-to-date information at http://medicare.gov/Coverage/Home.asp or call 1-800-MEDICARE.  Medicaid provides health coverage for low-income people, families and children, pregnant women, the elderly and people with disabilities.  Federal and state governments jointly fund Medicaid.  For more information on Medicaid contact your state’s Medicaid program.   If you live in Missouri visit https://mydds.mo.gov and if you live in Illinois visit http://illinois.gov/hfs.

For a person with ALS, the most important part of healthcare planning is selecting the best health insurance for their needs.  Discussing health options with an insurance counselor is a great way to think through and plan for your needs to find the most appropriate coverage when you need it.  Your State Health Insurance Counseling Program has expert volunteers who can assist you free of charge.  Go to https://www.medicare.gov/contacts/#resources/ships for more information and as always you can contact The ALS Association St. Louis Regional Chapter through our website or by calling us at 314-432-7257.

The information from this blog post was excerpted from Living with ALS Resource Guide 5: Understanding Insurance and Benefits When You Have ALS.

 

Diagnosing ALS

ALS is very difficult to diagnose — often taking up to a year from when the first symptoms appear until a definitive diagnosis is reached.  Why is diagnosing a person with ALS such a challenging and long process?  Here are a few reasons that can contribute to the delay:

1. There is no clear cause of ALS.

Because there is no clear cause or trigger for ALS, and in most cases, no specific genes, it is diagnosed by asking disease-related questions and taking a history of the patient’s symptoms.  It is very important that a doctor with knowledge of ALS — such as a neurologist or a specialist with experience with ALS — conducts this examination to see the symptoms and clues that need to be observed together to confirm the diagnosis, as well as to rule out other possible conditions.

2. ALS is usually thought of as something else at first.

People with ALS experience a wide variety of symptoms, especially early on in the progression of the disease.  One person may experience muscle twitches or weakness and think at first that they just overexerted themselves at the gym, and another may experience slurred speech and think they may have had a stroke.  The way symptoms present can lead to many areas or specialists before being referred to a neurologist. It’s  typically only when more symptoms appear that ALS is thought of as a possibility.

3. There is no specific diagnostic test for ALS.

An ALS diagnosis is a process of exclusion, which means that doctors have to test for other possible explanations to rule out other diagnoses.  A comprehensive diagnostic workup includes most, if not all, of these procedures:

  • blood and urine studies
  • x-rays, including MRI
  • electrodiagnostic tests including electomyography (EMG) and nerve conduction velocity (NCV)
  • spinal tap
  • muscle and/or nerve biopsy
  • myelogram of cervical spine

When physical and laboratory examinations indicate that a person has weakness caused by the loss of motor neurons, worsening over time and spreading to different parts of the body, along with test results showing a decrease in muscle and nerve function, a diagnosis can be confirmed.  It is always important to get a second opinion, especially when given an ALS diagnosis, because of the wide variety of symptoms and different tests that can be done.

For more information on diagnosing ALS, please see the ALS Association St. Louis Regional Chapter’s website.

Currently, promising research is being done to diagnose ALS earlier and faster with the help of biomarkers. Biomarkers are biological measures that help identify the presence or rate of progression of a disease or the effectiveness of a therapeutic intervention.  Biomarkers can be molecules derived from bodily fluids (blood and cerebrospinal fluid), an image of the brain or spinal cord, or a measure of the ability of a nerve or muscle to process electrical signals.  This research could identify a test that could be done to find an ALS diagnosis earlier in someone’s disease progression, enabling them to start drugs and therapy faster. 

For more information on biomarker research, see The ALS Association’s Research page.

 

Caregiver Confidential: “Who Lives, Who Dies, Who Tells Your Story?”

But when you’re gone, who remembers your name?

Who keeps your flame?

Hamilton, “Who Lives, Who Dies, Who Tells Your Story?”

I was fortunate to see Hamilton in Chicago in December. (I highly recommend going when it comes to St. Louis this spring.) One of the most moving musical numbers and a personal favorite of mine was the finale, “Who Lives, Who Dies, Who Tells Your Story?” In fact, I become teary-eyed every time I listen to the lyrics, because they are so on-point. I thought I finished telling my family’s journey with ALS, but after watching Hamilton, I realized that I had one final point to make.

In earlier posts, I related how my husband Brian learned that he had ALS and our family’s 5-year journey with the disease. What I failed to adequately convey, however, was that your loved one’s legacy should not be defined by ALS. It is easy for this to happen, because of the dramatic and heart-wrenching nature of the illness, and because for many of us, ALS leaves a searing and indelible memory. One must always remember that ALS is what your loved one unfortunately had and does not reflect or represent who he or she was. With that backdrop, I hope you will indulge me in telling you just a little more about Brian, unrelated to ALS:

I first met Brian in October 1967 on the last day of a high school youth group convention. I was from Joliet, and Brian was from Elgin, Illinois. A childhood friend originally from Joliet but living in Elgin said she knew this really cute, shy guy and wanted to introduce us. Brian and his best friend walked into the gym on the last day of the convention, and my friend Barb introduced us. Our conversation lasted only an hour or two before I boarded the bus to return to Joliet, but we clicked immediately. When I got home, I called my best friend and told her that I met the guy I was going to marry. It took almost 7 years for that to happen, but Brian and I were married on June 2, 1974. We were married for 36 years.

Brian and Idelle
Brian and Idelle, December 1970

Who was Brian? Brian loved sports and was a defensive lineman on his high school football team. His favorite baseball team was always the NY Yankees (Brian was born on Staten Island, NY), and he followed Ohio State football from his days growing up in Painesville, Ohio. His favorite college basketball team was the Kentucky Wildcats, which is the one sports team he followed religiously throughout his life. Brian shared his passion for the Wildcats first with his dad, who was a Kentucky alum, and later with our daughter Leah. His adopted St. Louis teams were the Cardinals and Rams, of which he enjoyed attending the occasional game.

Brian loved food, reading, music, travel (we took many wonderful vacations), and gardening, which he found relaxing and meditative. Every morning before work during the growing season, Brian would go outside to contemplate the plants in our front garden bed. Brian always loved nature and the outdoors. Growing up, Brian’s parents thought he would become a forest ranger, but instead he received bachelor’s degrees in environmental science and zoology.

Brian was a very thoughtful, introspective, and intellectual person. He was an extremely hard-working and meticulous medical malpractice defense attorney, who was dedicated to his clients. Brian was a good listener and nonjudgmental person, who cared deeply about people. Above all, Brian was a devoted father and husband to me and our daughter Leah.

This is my last post on our family’s experience (I promise!), and I will be blogging about other caregiving topics going forward. As a survivor, I feel it is incumbent on each of us to give voice to the voiceless, to tell our loved one’s story, and to keep the flame alive. I invite you to share your stories or experiences, anything you feel comfortable relating, 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.

What Is FTD and How Is It Connected to ALS?

FTD (frontotemporal degeneration or frontotemporal dementia) refers to a group of disorders that causes progressive damage to the temporal and frontal lobes of the brain associated with personality, behavior and language.  Loss of function in this area of the brain can lead to impulsive behavior and speech difficulties.  Usually FTD does not affect the parts of the nervous system that control muscle movement, but about 10-15% of people with FTD also experience motor neuron degeneration called FTD with motor neuron disease (FTD/MND) or FTD with ALS.  Over the past 15 years, doctors and scientists’ knowledge of the connection of these diseases has rapidly grown through genetic discovery, brain imaging studies and biomarker studies.  Specifically, researchers were able to confirm the connection between FTD and ALS when the TAR DNA-binding protein 43 (TDP-43) was identified as the central protein in both ALS and the most common type of FTD.  Additionally, up to 40% of FTD cases have been found to carry a C9orf72 gene mutation, which is most common in genetic causes of ALS.

Lobes of Brain
In many cases, FTD symptoms are noted prior to the diagnosis of ALS.  FTD symptoms include:

  • increase in inappropriate actions
  • loss of empathy and other interpersonal skills
  • lack of judgment and inhibition
  • apathy
  • repetitive compulsive behavior
  • decline in personal hygiene
  • changes in eating habits
  • lack of awareness of thinking or behavioral problems
  • difficulty in using and understanding written and spoken language
  • loss of knowledge of word meaning

Paula Richard describes what it is like to experience a loved one living with the symptoms of FTD/ALS:

In 2015 my husband was finally given a diagnosis of ALS/FTD . ALS alone is a terrible disease, but to have FTD with it is awful. Seeing my loved one go through the everyday struggles is heartbreaking. The cognitive issues outweigh the ALS part sometimes. He has bad comprehension and doesn’t know right from wrong. His behavior is like taking care of a little kid. I’m always getting onto him to not do something or to do something. I know none of this is his fault, but dealing with it is very stressful and overwhelming. I get angry with him and then I feel guilty. In addition to having FTD , he has also has PBA ( excessive laughing). When he laughs it’s like a kid laughing at you. He can embarrass you. My loved one is slowly having his life taken away from him. Not being able to do the things he loved to do and just everyday things. Having a support system is very important, having patience and understanding is a must, but very challenging. Life is so very different now, but having God in our lives helps. We just try and take one day at a time.

As Paula mentions, FTD with ALS creates additional challenges for caregivers and it is important to have a strong support system and for caregivers to be able to acknowledge the changes in the behavior and thinking of their loved one.

Some helpful recommendations for caregivers include:

  • Simplify communication with the affected person. Break up sentences into short phrases.  Ask yes/no questions. Slow down when speaking.
  • Provide supervision and accompany the person to all appointments to make sure information is accurately relayed and retained.
  • Set realistic expectations for the person with ALS and set realistic expectations for yourself. If your requests introduce frustration, irritability or withdrawal for either you or the person with ALS, your expectations need to be modified and most likely simplifed to meet the needs of your loved one’s current thinking abilities.  Also, if you are feeling overwhelmed do not wait until you are feeling underwater.  Think ahead to what options you have for help or time away, if needed.
  • Educate providers and caregivers about where to set expectations for your loved one.  In an ideal world, all healthcare providers would be on the same page about what to do and how to accomplish it.  But many healthcare provides outside of dedicated ALS clinics may not have much experience with ALS/FTD and how it affects people.
  • Continue to enjoy activities that bring joy and can be conducted safely, while refraining from activities the result in stress or risk of safety or liability.

While FTD with ALS is rare, current research suggests that up to 50% of people with ALS might experience some degree in change in thinking and behavior.  It is important for all who are impacted by ALS to know that cognitive impairment is possible and how to help those affected adjust to the changes.  For more information on FTD visit The Association for Frontotemporal Degeneration.

For more information on ALS, visit The ALS Association St. Louis Regional Chapter’s website.

Thank You for Sharing Your Journey with Me

By Heather Burns, MSW, LMSW, ALS Association Care Services Coordinator

Today, I received two phone calls. I had that familiar gut wrenching feeling when the names of the patient’s loved one’s flashed across the giant iPhone screen. I hesitated when answering, as if maybe that could change what the caller was about to say…

“My loved one has passed away.” I knew it was coming before today. I knew it was coming before they picked up the phone to call me. I knew it the moment I walked in to meet the family for the initial home visit, but with ALS, I never truly know when I may actually get that call. Everyone’s progression, while always devastating, is always different.

During both of these calls, the loved one on the other end thanked me for the support I provided them and their family member. After almost four years, I still find myself a bit tongue tied when someone thanks me for what I did for their family. Yes, it is my “job”, but it is a job that I have chosen. I take pride in my work and in helping others. But honestly, I think I struggle with what to say back because how do I appropriately and genuinely express my gratitude towards THEM? My appreciation for having just had the privilege of MEETING them and their beloved? The gratefulness of being welcomed into their home during one of the most vulnerable times of their lives? Learning some of the struggles they faced as a family before this disease even became a factor within an hour of meeting? How do I tell the patients and families that I meet how thankful I am that they have given me perspective on what it means to live? Or what it means to die? Is it even appropriate for me to do so? Would they be taken aback when I say it?

How do I adequately and appropriately express to the men and women that I am meeting in my work, that they are the ones providing me with a service? That they are giving me a gift? It’s not wrapped neatly in Tiffany Blue. I cannot hold it or exchange it for a different size. It is a rare gift with no price tag that money could never buy. It is perspective, it is life lessons, it is sorrow, and it is beautiful.

So, from this point forward, I am making a commitment to those I serve to do better at expressing my thankfulness. To the family’s I have worked with in the past, present, and future I want you to know this: While you are facing one of the most difficult times of your life, a time when you may feel like you have lost a sense of who you are, lost the connection to who you were, or a time when you may have no idea who you will be…thank you. Thank you for giving me the privilege of meeting you and for walking alongside you during this journey.

Lighting the memorial candle at the Springfield Walk to Defeat ALS
Heather Burns lighting the memorial candle at the Walk to Defeat ALS.

Heather Burns began working with the St. Louis Regional Chapter as a care services coordinator in 2013. She assists families by educating them on ALS and symptom management, helping to reduce their financial burden by presenting community resources, and offering emotional support for both patients and caregivers.  She received her Masters of Social Work in 2017 from the University of Missouri, St. Louis.

5 Myths about ALS

In these times we live in — the information age — we have access to more facts and data than ever before, but not everything we read or watch is correct.  The Ice Bucket Challenge brought unprecedented awareness to the general public about ALS, but with more exposure also came more misinformation.  Below we break down 5 of the most common misunderstood “facts” about ALS.

  1. ALS is a hereditary disease only.

dna-strands

There has been a lot of media coverage recently about the amazing breakthroughs that have happened identifying mutations in genes that cause familial ALS.  Familial ALS accounts for about 5-10% of people diagnosed with ALS.  In those families, there is a 50% chance that each offspring will inherit the gene mutation and may develop the disease. The majority of people diagnosed with ALS have no family history of the disease.

  1. Only older people are affected by ALS.

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Most people who develop ALS are between the ages of 40 and 70, with an average of 55 years old.  But there are many cases of people in their twenties and thirties diagnosed with ALS.  This “Young-onset” ALS typically refers to patients younger than 45 years old and accounts for about 10% of all cases.  The disease has even struck people in their teens.

  1. Brain function in not affected in people with ALS

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While it is common for brain function to NOT be affected in people with ALS, approximately 20% of individuals with ALS also develop frontotemporal degeneration (FTD) which is characterized by changes in personality, behavior and speech.  Another rare form of ALS, known as ALS-parkinsonism-dementia complex (ALS-PDC) is characterized by signs and symptoms of ALS in addition to movement abnormalities (slow movements, stiffness and tremors) and loss of intellectual function.

  1. If you’re paralyzed with ALS you can’t feel your body.

3D male figure with joints highlighted
The latter stage of ALS is commonly described as someone being completely paralyzed.  The definition of paralysis is a loss or impairment of voluntary movement, but many people also associate paralysis with a loss of feeling as well as function.  This belief may be because many people with many people with brain or spinal cord injuries that are paralyzed also have lost feeling in the part of their body that is affected.  People with ALS can still feel their body, even though they can’t control its movement.

  1. ALS affects everyone the same way.

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From the initial symptoms to how the disease progresses, ALS can affect people very differently.  The first symptoms of ALS can vary widely depending on the type of onset, bulbar or limb.  People with limb onset usually notice a weakness in their hands or feet and people with bulbar onset might notice a change in their voice first.  The rate at which ALS progresses is also quite different person to person.  While, most people with ALS live with the disease for 2 to 5 years, some people may live 10 or more years with the disease.

You can find out more about ALS by visiting our website: www.alsa-stl.org.