Nine Questions with Dr. Ghazala Hayat

Dr. Ghazala Hayat is board certified by the American Board of Psychiatry and Neurology and the American Board of Electrodiagnostic Medicine and has clinical neurophysiology certification by the American Board of Psychiatry and Neurology.  She is the director of Neuromuscular Services, Clinical Neurophysiology Fellowship and Clinical Neurophysiology Laboratory and the ALS Certified Center of Excellence at Saint Louis University.

Can you tell us a little about yourself?

I graduated from King Edward Medical College in Pakistan. I did my neurology residency and Neuromuscular Disorders Fellowship at Medical College of Virginia. I have been at St. Louis University since 1986. I am Professor of Neurology, Director Neuromuscular Services, Clinical Neurophysiology Services; Director Clinical Neurophysiology Fellowship and Director of ALS Certified Center Of Excellence.

I was recently appointed as Director of CQI for education and research.

Why did you decide to become a neurologist?

I have loved math and physics since high school. Neurology “makes sense to me” as there are tracts, pathways which will correctly predict where the lesion is. Over years many breakthrough discoveries are making Neurology even more interesting.
How long have you been treating people with ALS?

I was involved in ALS care/therapy since my fellowship in Neuromuscular Disorders at Medical College of Virginia. I continued taking care of ALS patients at the neuromuscular clinic since 1886. About 22 years ago the ALS Certified Center of Excellence was established.

How is ALS diagnosed?

The diagnosis of ALS is clinical with laboratory tests ruling out other causes. Patients usually present with progressive weakness of arms, legs, difficulty speaking, swallowing, breathing and walking. The examination shows weakness of muscles, loss of muscle mass, tightness of muscles, hyperactive reflexes, muscle twitches, speech difficulties and gait imbalance. Not every patient will have the same symptoms and may develop some of these symptoms over time. Blood tests are performed to rule out any ALS “mimickers” or other causes of weakness. Imaging of the spine and brain is done to look for any compression, stroke or other causes for weakness. Nerve conduction studies and electromyography can help to confirm the diagnosis if there are wide spread changes in the body.
CarmenandDr.Hayat

How is the ALS clinic at Saint Louis University different from a typical clinic?

The ALS clinic is a multidisciplinary clinic. When the patient is seen at the ALS clinic, he/she is evaluated by a neuromuscular specialist, resident/fellow, ALS nurse coordinator, ALSA representative, Physical therapist, Occupational therapist, Respiratory therapist, Speech therapist, Dietician, and Social worker. If needed, we have personnel to provide different equipment evaluation. We have core group of gastroenterologists, pulmonologist, psychiatrists and psychologists for further evaluation and therapy. At the end of the clinic we have round table discussion about each patient and the decisions about different disciplines are made with consultation. This coordinated care provides the best possible treatment to the ALS patients.

Patients can contact the ALS nurse and the physician in between visits for any issues.

What do you love about working at SLU?

Commitment to patient care, education and clinical research.

What are some of the exciting developments in research in ALS?

Stem cell, gene therapies, learning more about different genes.

What are the most common misconceptions about ALS?

“There is a cure available in many parts of the world.”  Sadly I have seen patients and families spending their life savings on these therapies, which have not proven to be helpful at all.

“Feeding tubes are not helpful.” Feeding tubes improve quality of life and patients can conserve “energy” for other important functions.

“Once the diagnosis is made, go home and take care of your business.” We can offer many services to the patient and many studies have shown quality of life and may be length of survival to be better for the patients followed in multidisciplinary clinics.

What would you tell someone who has just been diagnosed with ALS?
  1. We do not have the cure for ALS but we have therapies. Now we have 2 FDA approved medications.
  2. Follow in a multidisciplinary clinic to get the best possible care.
  3. We will be with them at every step to help and guide.
  4. Take your time, but discuss with your loved ones to decide about feeding tube and respirator.
  5. Have an advanced directive.
  6. Read about research studies and see if he/she is interested in any.
  7. Take one day at a time.
  8. Progression of weakness will be challenging but we will be able to help with assistance from different disciplines.
What is the most rewarding thing about working with people who have ALS?

I am amazed by the courage of the ALS patients, their caregiver. How they adapt to changes, have smiles on their faces with all the challenges and are willing to try new treatment for research studies, even if they will not see the benefit.


For more information on multidisciplinary care for ALS and the ALS Certified Center of Excellence at Saint Louis University, visit our website.

 

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.

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”.

Caregiver Confidential: It Takes a Village

While reading online the other day, I came across a popular saying that I hadn’t seen in a while: “It takes a village.” Although familiar with its general meaning, which refers to the communal raising of children, in a broader context, can’t the concept of a “village” also apply to caregiving for a loved one with a terminal illness? Doesn’t it take many individuals—caregivers, medical and social services professionals, friends, and family members, all working together—to provide the best possible care for an ALS patient?

As a caregiver for a loved one with ALS, you constantly interact with a myriad of individuals at various times during the course of the disease. A single caregiver, no matter how dedicated, cannot provide all the requisite care. While acknowledging that you cannot go it alone, it can also be difficult accepting that you need help. After all, who can you trust to perform the vital functions that impact the health and well-being of your loved one? And who wants a parade of strangers coming into one’s home constantly, creating even more stress?

Reflecting on my own experience, I was fortunate that my husband Brian was highly functional for the first 3 years of his disease. During that time, I increasingly helped him with activities of daily living as his ALS progressed, but solo caregiving was manageable. However, I was totally unprepared for what lay ahead when Brian’s breathing and mobility status suddenly changed in October 2008.

As I related in an earlier post, Brian collapsed at home in October 2008 and was rushed to the hospital, spending almost 2 weeks in the ICU. During that time, I had a crash course in use of the BiPAP, along with other caregiving functions. Simultaneously, I was arranging for agency help (4 hours of morning caregiving each day) to start when Brian was discharged. It was a time of tremendous change and transition for Brian, our daughter Leah, and me.

I vividly recall feeling overwhelmed by all the changes that were swirling around me. I felt that my home was turned into a mini-hospital. There was the constant stream of people invading our space: PT, OT, nurses, vendors, a physician who made house calls, and a variety of caregivers, some of whom were not competent or caring. Luckily after some initial missteps, our home care agency sent Michelle and Christina. They were compassionate, patient, and knowledgeable. Michelle took care of another ALS patient in the afternoons, so she was well versed with the unique needs and challenges of the disease. Both caregivers contributed to the quality of Brian’s life and were supportive of both Brian and me. We became a team. Eventually, Christina found another job, but our agency sent another wonderful caregiver, Lilly.

Our village was small. We did not have any family in St. Louis. My brother, who was close with Brian, drove down from Chicago every 3 weeks or so, and Brian’s sister Joyce came every 6 weeks. Our daughter Leah moved home after college graduation to help care for her dad. Many of Brian’s colleagues visited regularly while he could still speak and go without the BiPAP for short periods, and friends and other out-of-town family members came when Brian was feeling well enough. At the end, Michelle and Lilly were there for us, even on the morning of Brian’s passing. They stayed and cared for him until the funeral home arrived.

Michelle, Christina, and Lilly saved my life. They made the unbearable more bearable, the impossible a little easier. They were my village—my rock, my foundation, my family. They treated Brian with dignity and respect, and I am profoundly grateful to them.

Who is or was in your village? What were the biggest challenges you faced as your loved one needed more caregiving assistance? Please share your experiences and thoughts on any aspect of caregiving, current or previous, 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.

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.