A Day in the Life at the ALS Clinic – The Berkley Family

Last week, our national organization featured our friend, Carmen Berkley, on their blog. Carmen shared her morning attending the ALS Certified Center of Excellence at Saint Louis University — the only one in our region. We’d like to share it here with you.

The Official Blog of The ALS Association

Your life can change in an instant. Carmen Berkley’s life did in 2015. She is one of the 6,000 people diagnosed with ALS each year. In the video below, Carmen shares with us what a visit to an ALS clinic is like for someone living with the disease.

Before diagnosis, Carmen kept busy as a unit secretary on the oncology floor at Barnes-Jewish Hospital in St. Louis and took care of her elderly father. Now, her husband Charles and two daughters, Jamia and Camille, take care of her.

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Behind the Ice Bucket Challenge: How My Own Fight Against ALS Helped Fuel a Phenomenon

Powerful blog post from our friend Pat Quinn, courtesy of WebMD.

By Pat Quinn

When you’re diagnosed with a disease that has a life expectancy of 2-5 years, you will do anything to change that. Almost 5 years ago, I was stunned as I heard my doctor say, “It’s conclusive, we can confidently diagnose you with ALS.” It was the most surreal moment of my life. Sure, I had had some crazy twitching in my arms. Yes, my hands had become weak. But, 2-5 years to live? No, that was unacceptable to me. I was only 30 years old! So, after the initial shock wore off, I decided that I was going to fight.

The disease that was supposed to take my strength started turning me into a pit bull. I became obsessed with bringing attention to ALS – local events, community outreach, speaking, networking – I did everything I could think of to make people aware. I can’t lie – I had selfish motives. I wanted to live. I was entering what should have been the prime of my life – I should have been focusing on the joys of finding love and starting a family, not fighting a terminal disease! My fight to add years to my life grew into a passion to fight not just for myself, but for everyone with ALS. That passion got stronger every time I met a new ALS patient. One of those patients was Pete Frates in Boston, whose website I happened to come across in my online searches. Pete was young, a stellar athlete, and diagnosed with ALS a year before me. I emailed, he answered, and soon we formed a special bond that would eventually play a major role in the biggest movement in the history of philanthropy: the ALS Ice Bucket Challenge.

You may not know it, but the Ice Bucket Challenge wasn’t originally created specifically for ALS. It was going around for a number of different causes until one golfer in Florida took the challenge for his cousin’s husband who had ALS. It caught on in that patient’s town, and the power of social media brought it to my attention. (Thank you Facebook!) I will never forget the day I saw a friend from grade school take the challenge and said he was doing it in my honor. I was blown away, but more importantly, it clicked: If this can connect so easily from one individual to another, we might have something here. Excited about the possibilities, I got my closest friends to dump buckets of ice water over their heads and it spread throughout my network – the one I had so worked so hard to build after diagnosis. Pete took the challenge, too, and shared it to his huge network. No one could have imagined what would unfold next. Soon we were right in the middle of a social media phenomenon! Hundreds of likes on every Facebook post. New videos were being uploaded every couple seconds – literally, seconds! It’s one thing to see your family and friends take the challenge. But somehow, every day it got bigger and bigger! The support for ALS I was hoping to create was taking place right before my eyes. As it happened, my head was spinning. It was surreal. Within a week, while you were probably filming your Ice Bucket Challenge in the backyard, so were the biggest athletes, famous celebrities, and even world leaders.

pat-quinn
Taking the ALS Ice Bucket Challenge in 2015

A worldwide movement like the Ice Bucket Challenge doesn’t just happen. It’s not like any of us were sitting in a dark room drawing up blueprints to orchestrate a massive social media movement. I believe that certain things in your life happen for a reason. Not everything, of course (I’m not crazy), but I truly believe parts of your time here on earth happen for a reason. Life presents us with opportunities, and then it’s up to us to make something happen.

Do I believe I was diagnosed with ALS for a reason? YES. Without getting too spiritual, I know God chose me to take on ALS. I have to believe this. It keeps me going. I was young. I was strong. The people I’ve met throughout my life would do anything for me. That kind of network would have the ability to create necessary awareness.

Do I think the Ice Bucket Challenge started in a town 10 to 15 minutes away from where I lived for a reason? YES.

Do I think I reached out to Pete Frates after diagnosis, became friends, eventually leading us to catapult the Ice Bucket Challenge for a reason? YES. There is no doubt in my mind that we met each other to change the course of ALS. It was our job to recognize its potential and make something happen…that’s exactly what we did!

These days, there’s no awkward pause after I tell someone I have ALS. I no longer have to follow up with “you know, Lou Gehrig’s disease,” because people are aware – and that was the reason for it all. The Ice Bucket Challenge allowed me to accomplish what I set out to do: create unparalleled awareness leading to research that will one day make ALS treatable and, God-willing, cured.

I would do anything to go back to being my normal, pre-ALS self. Anything. But I can’t dwell on that. I am facing an undefeated opponent, and I’m going to do everything I can to beat it. I know that ALS may one day take my physical life, but my fight will last forever.

PQPat Quinn was diagnosed with ALS (Amyotrophic Lateral Sclerosis) in 2013, a month after his 30th birthday. Since then, Pat has become a strong advocate, explaining to others that having no effective treatments or a cure is not acceptable Pat was at the forefront of the ALS Ice Bucket Challenge, which raised over $ 220,000,000 globally. He has spoken before Congress, at companies like Google and Facebook, and at universities across the country. Pat has received many accolades for his advocacy including a nomination for TIME Magazine Person of the Year. To learn more, please visit www.q4tw.com.

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.

Caregiver Confidential will run the first Friday of every month. Subscribe now, so you don’t miss a post!

How Can I Help?

More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one. (Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP; November 2009)

Caregiving for someone with ALS – while done with a great deal of love and devotion – often times exacts a great emotional and physical toll for the caregiver. Caregivers are often employed outside the home and may be the primary source of household income, which adds even more demands, responsibilities and stress.

Human nature drives us to offer a helping hand to those that we love when they are faced with a terminal illness. Ironically, also just as human, is the tendency for the caregiver to push that hand away because they view this responsibility as MY job and MY job alone or I SHOULD be able to do this by myself.   However, Caregiver Burnout Research tells us that all caregivers, especially those caring for someone with ALS, need help.

During the holidays, the demands on families are greater, and so too is the demand on the caregiver’s time.  So how can you help a friend or loved one who is a caregiver?  What is the real answer to “How can I help?”

Don’t get discouraged when an immediate need or way to help can’t be identified. The answer to how can I help  can easily become one more task to complete ~ oftentimes, the caregiver, struggles with identifying what help is needed to manage the changing roles in their family life – juggling, health, home, work, relationships, kids ~ that they just do it and not realize other people could help too.

  • Be Proactive: Think about your loved ones life and daily routine and volunteer with a suggestion on how you can help – don’t ask how; tell how. Needs will change periodically, so evaluate your suggestions and make adjustments overtime.
  • Be Consistent and Patient: Many people offer help just after a diagnosis, but just as time fades, so do intentions, especially if your own need to help is met quickly. It may take time for the caregiver to admit and accept help.
  •  Be Reliable: If you say you are going to do it, Do it!  Caregivers need to trust that the task is handled so their focus can be on the relationship and emotional support with their loved one who has an illness.
  • Be the Leader: Start a care connection team to recruit/manage other volunteers to help create schedules so that the caregiver knows who and what to expect when.  Click here for a great online tool to help!

What are some things you might volunteer to do for your friend or loved one who is a caregiver?  Here’s just an example:

Do the laundry
Take out the garbage
Give a pedicure/manicure
Cook dinner
Take the patient for a drive
Feed the cat/dog
Change the sheets
Give a massage
Bring some videos
Write a holiday letter, photocopy, and mail it with the patient’s holiday cards
Bring some fresh flowers
Write a poem
Transport children to or from school
Water the plants
Rake the lawn
Buy a cheery new bedspread

You can find an entire list of tasks you might be able to tackle for a caregiver on our website.

Remember,  the most important thing you can do for your friend or loved one who is a caregiver is to be present, listen, and remain connected. For more information on caregiving and preventing burnout, visit www.alsa-stl.org.

Resources for Caregivers

During National Family Caregivers Month, we recognize and thank the everyday heroes who devote their time and energy to taking care of a loved one.  Millions of people around the country take on the role of caregiver for friends and family members; providing care day and night, on the weekends and even on demand.  Many people, especially those that need long-term care, rely on family and friends as their only source of help.  While many take this on out of love and receive satisfaction from caregiving, it can take a toll over time and even cause detrimental effects to the caregiver’s health and well-being.  It is important for caregivers to make sure they are taking care of themselves, even as they are taking care of others.  Below we have compiled a list of resources to help those in our community navigate the world of caregiving:

Websites

ALS Association St. Louis Regional Chapter

ALS/MND Support Group Forums

ALS Association Support Community- Inspire

Voyce

National Alliance for Caregiving

Family Caregiver Alliance

Caregiver Action Network

AARP

Books

Caregiving: The Spiritual Journey of Love, Loss and Renewal by Beth Witrogen McLeod

Put Your Mask On First: The Caregiver’s Guide to Self-Care by Dr. Gary Bradt and Scott Silknitter

Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill by Cappy Capossela and Sheila Warnock

Transcending Loss by Ashley Davis Bush

 

Veterans Face Higher Risk of ALS

Existing evidence supports the conclusion that people who have served in the military are at a greater risk of developing ALS and dying from the disease than those with no history of military service. Study after study continues to demonstrate this to be true: If you serve in the military, regardless of the branch of service, regardless of whether you served in the Persian Gulf War, Vietnam, Korea, or World War II, and regardless of whether you served during a time of peace or a time of war, you are at a greater risk of dying from ALS than if you had not served in the military. In fact, a Harvard University research study tracked ex-service members back to 1910 and found that U.S. veterans carry a nearly 60 percent greater risk of contracting ALS than civilians.

Joe Zappa
Joe Zappa, of Collinsville, Illinois, holds a photo of his father.  Joe, also a military veteran, was diagnosed with ALS in 2015.

With your help, our Association has been able to assist military veterans who are fighting ALS.  Some of the efforts your support has made possible:

RESEARCH:
The Association has worked with Congress to establish the ALS Research Program (ALSRP) at the Department of Defense in 2007. The ALSRP is the only ALS research program at the DOD and is focused on translational research, with the specific goal of finding new treatments for the disease. Congress appropriated $7.5 million for the program in 2016, bringing total funding for the program to more than $60 million. This funding has supported 44 ALS research studies which have resulted in 25 peer reviewed publications and, most importantly, the discovery of four potential treatments for ALS.

ADVOCACY:
Thanks to the efforts of The ALS Advocates, key members of Congress, advocates and the Department of Veterans Affairs, ALS has been listed as a disease entitled to presumptive service connection. This means that if a service member is diagnosed with ALS his or her condition will be presumed to have occurred during or been aggravated by military service and as such be entitled to service connection and full benefits. These benefits are described briefly below. An overview of benefits available to veterans, survivors and dependents is available from the VA here.

CASE MANAGEMENT:
In-home consultations by an ALS case manager to help assess, plan and facilitate care, and evaluate and advocate for options and services to meet the individual with ALS’s health needs through available resources.

ALS-SPECIFIC HEALTHCARE:
The VA St. Louis John Cochran Division, in partnership with The ALS Association St. Louis Regional Chapter opened the doors to a multidisciplinary ALS clinic this past May.  It offers local veterans multidisciplinary clinical services under the expertise of a team of staff who are dedicated to the care, understanding and treatment of ALS.  Under the direction of Dr. Brian Sommerville, the clinic is held on a bi-monthly basis on the 1st and 3rd Fridays of each month. The Veterans Administration has the ability to provide comprehensive interdisciplinary ALS care that includes not only essential disciplines but also VA-specific programs such as Home Based Primary Care and integrated hospice and palliative care services.

COLLABORATION:
The ALS Association works directly with the Paralyzed Veterans Association to advocate for Veterans living with ALS. The Paralyzed Veterans of America is a congressionally chartered veterans service organization founded in 1946 that has developed a unique expertise on a wide variety of issues for veterans with spinal cord injuries, including ALS.   Benefits Advocates are available to help ensure that you receive all service connected benefits.

Thank you for your support of our nation’s military heroes as they fight yet another battle – ALS. For more information on the link between ALS and the military, and the programs and services available to veterans with ALS, please visit our website.