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.

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.

parentwhitelies10

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.

Remembering and Reflecting: Creating a Keepsake for your Family

As one faces a terminal illness, such as ALS, it can be rewarding and fulfilling to review one’s life journey and reminisce about favorite people, experiences, and events, for remembering and reflecting on your life, in order to help you celebrate your successes, cherish your loved ones, and honor your journey.  It is also important to reconcile or accommodate difficult or painful memories or events, providing an opportunity to forgive yourself and others if appropriate.  Especially during this time of year when we are celebrating holidays and are with family and friends, projects such as the ones below can make very meaningful gifts, not only to those you love, but also as a gift to yourself.

Life Review Timeline:  Place the major events of your life on a timeline. You may need several pieces of paper taped together or a large poster board to accommodate the length of your timeline. Include your successes, special dates, important events, and favorite memories. If you are willing, allow other family members and friends to contribute their memories of you, too. This activity allows you to acknowledge your accomplishments, reflect on troublesome or painful events, and recognize special people or times throughout your life. This timeline, created by you, will also serve as a wonderful keepsake for your family.

Count Your Blessings:  Make a list of all the things you are thankful for. such as loved ones, friends, possessions, special events, honors, successes, and abilities. Whenever you need a “pick me up,” read through your list and reflect on all the things that you are thankful for. Another option is to keep a “Blessings Journal” by writing five things you are thankful for at the end of each day. Some days your lists may look the same; other days you may find new treasures to be thankful for. By focusing and considering all these positive influences, you are celebrating the life you have created and honoring the blessings that have been given to you.

Messages to Loved Ones:  This activity can take several forms, all of which provide your loved ones with tangible messages from you for the future.

  • Video taped messages: Have someone video tape you as you record messages to your loved ones, to be viewed at a later date. These messages could be your thoughts and wishes on special occasions, such as birthdays, graduations, or weddings, or they could be general communications that you would like your loved ones to be able to replay and share in the future.
  • Voice recorded messages: You can also record a verbal message, without the visuals of the video, for your loved ones under the same guidelines as above.
  • Written letters: Write or type letters to loved ones expressing your thoughts and wishes. You can also dictate your letter to a trusted friend or family member, if you are unable to write. These letters can be sealed and dated to be opened at a time of your designation.

All About Me:  Record answers to questions. That can be used as queries or for a starting point for discussing your life, your dreams, your ambitions, and your reflections with your loved ones. Have someone record or write down your responses to create a treasured collection of your responses.

  • Who was your best friend in childhood?
  • Where did you live when you first moved out of your parents’ house on your own?
  • Of all the cars you have owned, which was your favorite and why?
  • What is your favorite book?
  • What is your favorite song?
  • What is your favorite movie?
  • What is your favorite food?
  • How did you meet your spouse/partner
    • Talk about your dating/courtship.
    • Who proposed to whom and how?
  • What was your first job
  • If you could have been in any occupation, what would it have been and why?
  • When you were a child, what did you want to be when you grew up?
  • What quality do you think is most important in a friend?
  • What is your favorite attribute or ability in yourself?
  • What was the scariest moment in your life?
  • What was the funniest thing to ever happen to you?
  • What was the saddest moment or event in your life?
  • What was the most unusual thing that ever happened to you?
  • If you were stranded on a desert island, which three things or people would you want to have with you?
  • If you could change one thing that you did in your life, what would it be?
  • What are you proudest of?
  • What is your favorite hobby and why?
  • What was your favorite subject in school and why?
  • Name three people who influenced your life the most
  • Which teacher had the biggest impact on you and why?
  • If your life story was made into a movie, who would portray you?
  • If a genie could grant you three wishes, what would they be?
  • What is your lucky number?
  • Describe your greatest adventure
  • Talk about a time when you were awestruck
  • What was your favorite thing about your mother?
  • What was your favorite thing about your father?
  • What was the nicest thing someone ever did for you?
  • What makes you laugh?
  • Name three people who you admire and why

Journaling:  Keep a journal of your thoughts, concerns, wishes, and feelings. Journaling can be a cathartic way of expressing emotions and releasing pent-up feelings. It can also serve as a process of self-reflection, soul-searching, and life celebration. Don’t over think what you are writing; allow your thoughts to flow onto the paper without editing or critiquing yourself. This process will allow you to address issues that are concerning you and work through difficult or unknown problems. It will also allow you to document what is important and meaningful to you.

We want to know what has helped you.  Please let us know in the comments if you have tried any of these ideas for reflecting or if you have found something else that helps you.

Caregiver Confidential Goes Monthly

In my first 3 posts, I related my family’s journey with ALS, hoping that other caregivers would connect with some aspects of my experience. Going forward, Caregiver Confidential will be a monthly forum for caregivers to share ideas and the unique experiences and perspectives of caring for a loved one with ALS.

But first, let me describe how my daughter Leah and I coped after my husband Brian passed away in 2010. Although the first year as a widow was a huge life adjustment, I still had a semblance of my pre-ALS life. Leah was living at home, working, and applying to medical school. I enjoyed being part of her journey into medicine, and it kept me mentally occupied. Then the bottom fell out—Leah left to attend medical school in Philadelphia in July 2011, which was a painfully difficult adjustment and the point at which I was forced to confront that I was now alone, as a single person, after a 36-year marriage. Slowly, I have regained my footing, but I also have had considerable time to ruminate about my experience as a caregiver.

So, what did I learn from being a caregiver to a loved one with ALS? Here’s a brief partial list (I will go into greater length on some of these topics in future posts):

  1. Adopt the sentiment, “Today is the best day of your life.” While there is always hope even in terminal illness, try to live with your loved one in the moment, because you do not know what tomorrow will bring. (This mindset runs counter-intuitive to the saying, “Tomorrow will be a better day.”) Maybe go on that once-in-a-lifetime vacation, for example, to create memories.
  2. Be flexible in your approach to caregiving and do not have any expectations. So much about ALS is out of your control.
  3. As the primary caregiver, take care of your own health and needs. Do not be afraid to ask for help or think it reflects poorly on you if you cannot manage all of the caregiving duties. A break from caregiving will make you a better, more patient caregiver.
  4. Forgive yourself for having bad moments with your loved one. It is okay to feel angry, overwhelmed, and resentful at times. Being a caregiver to a loved one with ALS may be the most challenging job you will ever have.
  5. Seek out professional help, be it a counselor, clergy, and/or social worker. Getting another perspective or talking to a professional can be very therapeutic.
  6. Remember that the ALS Association is a wonderful resource and partner for dealing with many aspects of ALS. I can attest from personal experience that Beth Barrett of the St. Louis office was key to many of our family’s caregiving decisions.

What lessons have you learned as a caregiver? What suggestions would you pass along to other caregivers? Please share your experiences in the comments section. Let’s continue the conversation.

Idelle Winer

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.

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