It’s OK to laugh by Louise Frumkin, Care Services Coordinator

There certainly is nothing funny about living with ALS, but there are times when an opportunity for a good laugh should be enjoyed and cherished.  Families often tell us about predicaments they find themselves in which are so unexpected and challenging that their first response is to think they’ll never find a way out.  After thinking things through for a few minutes and perhaps seeing some humor in the situation, they are able to recover.  Sometimes the PALS is comforted by laughing their way through, other times the caregiver sees the humor as they later tell others about the situation.

Although ALS is a very sad disease, there is nothing to be gained by feeling sad all the time.  As physician and author Rachel Naomi  Remen reminds us, we cannot choose many of the things that happen to us in life, but we can choose how we respond to them.  Even when facing a terminal illness, it is important to create good memories, and to find happiness wherever possible.  Laughter provides a great release of tension and antidote to depression.

 Caregivers often talk about the tension they feel in knowing they must carry on with “normal” things in life, while their PALS faces so many limitations and losses.  This phenomenon is known as “survivor guilt”, an expression first used following WWII to describe the commonly reported feelings of Holocaust Survivors.  While it is a huge challenge to find and maintain happiness in the face of a life limiting illness, one thing is for sure.  It is OK to feel happy, to laugh, to enjoy moments in life no matter how dire the circumstances.  A recently widowed caregiver confessed in a Support Group that she had opened her refrigerator one day and found her shampoo inside.  We all laughed with her as she said she had NO idea how that shampoo made its way into her refrigerator!! 

Allow yourself a little levity whenever possible.  I’m sure it will help you get through the day and through your journey with ALS.  I wish everyone a very Happy Thanksgiving!

A Time for Thanks by Jerry Dawson, President

We are reminded each year around this time to be thankful.  Sometimes it is easy to be thankful.  I was reminded of this recently as my wife and I experienced the incredible joy of the birth of our firstborn baby Samantha.  She arrived on 09-09-09 and has been such a blessing in our lives.  I never realized what I was missing out on.  When she is a teenager I may not be quite so thankful, but I doubt it.

Ironically Sam was born ten years to the day after “Catfish” Hunter succumbed to complications of Lou Gehrig’s disease.  I know that September 9th will always hold sadness for everyone who loved and cared about Mr. Hunter.  Another tragedy recently hit very close to home when my brother-in-law was killed by a single wasp sting just three weeks after Samantha was born.  He was only 38 years old and left behind his wife and 10 year old daughter.  They are now living with us as they try to cope with this deep void in their lives.

I do not pretend to have the answers.  I know life brings both joy and pain and we should not take a moment for granted.  Accidents happen all the time and none of us are promised another breath.  I do not agree with everything Oprah Winfrey says but I think she got it right when she said this, “Breathe.  Let go.  And remind yourself that this very moment is the only one you know you have for sure.”

Embracing My Passion to Help Others by Jennifer Oliver, Administrative Manager

One day working at my desk at the American Red Cross in Middletown, Connecticut, I realized my passion for working in non-profit. Upon my relocation back home to North Carolina, I saw a job posting for an administrative assistant for a local non-profit. I was elated at the thought of being able to work for another charitable organization. I knew this position would be unique working with a different population of people. I would be working with persons living with ALS and their families. I had heard of Lou Gehrig’s disease before, but I didn’t know a lot about it. Therefore, this would be a golden opportunity to learn more about an illness that has had a huge impact on my home state. From the former Governor Jim Martin’s brother to the famous baseball pitcher born and raised here, Jim “Catfish” Hunter. When I decided to accept the position with the ALS Association, it allowed me the opportunity to share in the compassion, education, and support that PALS and their family members receive from our Chapter. I am a strong believer that knowledge and a strong support system are the greatest weapons against any illness. Therefore, I come to work with a smile on my face, because I know that I am helping to make a difference in a PALS life, everyday.

Jennifer Oliver,  Administrative Manager

P.S.  Be sure to visit our website for more information about our Chapter programs and events www.CatfishChapter.org

Not Just a Job by Claudia Winkler,Care Services Program Manager

My job as Care Services Program Manager at the Jim “Catfish” Hunter Chapter is definitely the most fulfilling position I’ve ever had the pleasure of having.  It is an honor to be able to locate that right piece of equipment that will make the life of someone with ALS a little easier.  Hearing the gratitude in the voice of a person who I tell that their reimbursement check has been mailed out is special.  Even doing something as small as helping someone fill out a grant application, helps me to know that my role here is important.  I’m often told thank you for all I do to help and how much it’s appreciated, but I would like to take this opportunity to thank all of you who allow me to help in any way possible.  I’m the one that is grateful to you for making my day so worthwhile.  Just knowing that each day I come to work I am in some way making a difference in someone’s life is all the thanks I need.

P.S. Be sure to visit our website for more information about our Chapter programs and events www.CatfishChapter.org”

Catfish Classic Preparations by Angela Murphy, Special Events Coordinator

 

The Catfish Classic Planning Committee and Chapter staff has been working feverishly to put on our 5th annual Catfish Classic Golf Tournament.  We are very excited for a cool, but sunny day on Monday, October 19th.  I have only been to one golf tournament so having the opportunity to see everyone pulling together to help me get up to speed has been amazing.  I have learned more about golf in the past three weeks than I have in my lifetime!

I continue to appreciate the teamwork approach from the committees I work with and the Chapter staff I work beside every day.  It is nice to know that there are people to support you, especially when you are feeling a little lost.  My hope is that one day I can repay the favor.

I am off now to complete the last minute preparations – should anyone be interested in any last minute information or golf ball drop tickets ($10), don’t hesitate to call the Chapter office!

Angela Murphy, Special Events Coordinator

P.S.  Be sure to visit our website for more information about our Chapter programs and events www.CatfishChapter.org

A Special Thank You by Amy Sullivan, Special Events Coordinator

I want to take some time to thank some special people involved with all of our Walks. Those people I would like to send an extra special thank you to is the Walk Planning Committees! Our walks wouldn’t be possible without all the hard work and dedication these people show.

So much works goes into planning these walks and we rely heavily on our committee members to help us plan all the logistics to ensure everyone has a great time at the walk. I enjoy getting to know each one of the committee members.  Our committee meetings can be such a blast and I’m glad that I am able to work with such great people.  Although, we do have fun, being part of the committee can be a time consuming commitment, however, these people are ready to use their talents the best way they can to help in the fight against ALS! Not only do I thank these committee members, I admire their selflessness and determination.  THANK YOU!

Amy Sullivan

Special Events Coordinator

P.S.  Be sure to visit our website for more information about our Chapter programs and events www.CatfishChapter.org

You’re Still You by Suzanne Gilroy, MSW – Care Services Coordinator

“You’re still you.”  Sometimes I use this phrase in my work as a Care Services Coordinator for the Catfish Chapter.  It’s just three small words, but the impact and meaning is certainly not trivial.   When acknowledging the diagnosis of ALS, there may be a tendency to feel that you are now a one-dimensional being – a PALS (Person with ALS).  I believe that though you are impacted by the presence of ALS in your life, you are still you.

All of the rich history of your life to this point is still intact.  Your thoughts, opinions and feelings still belong only to you.  The way in which you express these feelings may change depending on how you are affected by ALS.  Perhaps you have bulbar onset ALS and your verbal communication is affected.  You communicate differently, but you are still you.  Your mobility may be affected and you may get from place to place utilizing a power wheelchair, a cane or rollator walker, but you’re still you.

You are still you, though ALS has brought about an unplanned dimension to your life.   I am meeting you after ALS has become a part of your experience, but I appreciate getting to know so many aspects of the person that you are; past, present and future.  I want you all to know that I am enriched because you allow me to know you.  Thank you.

Suzanne Gilroy, MSW

Care Services Coordinator

P.S.  Be sure to visit our website for more information about our Chapter programs and events www.CatfishChapter.org

Different Strokes by Sue Humphries, LMSW, Director of Care Services

Over the years I have worked with hundreds of people dealing with ALS in their lives. As I look back on the experiences of those families, I am constantly reminded of how unique we all are in how we deal with adversity.  While my training as a Social Worker certainly addresses this “truth”, there is nothing like the challenges faced by those dealing with ALS to underline coping differences that exist within families.

Persons with ALS (PALS) are like everyone; some choose to look to the future to prepare for what may come and some decide they can best cope by taking it as it comes with little preplanning. After all, the second group may argue, some of what we worry about may never happen, so why deal with it now?

There is a natural tension that exists between family members who are in the two different camps. The “learners” are sometimes viewed as pushy and confrontive. The “day at a time” folks are sometimes viewed by the learners as “in denial” or “passive”. So, what’s a family to do? Is there a “best way” to cope?

To complicate this issue is the push by our multidisciplinary ALS Clinics to urge PALS to be proactive and “ahead of the game”. At the same time, our community also urges PALS and family members to appreciate each moment in order to maximize and emphasize quality of life over quantity.  Mixed messages, perhaps? Balancing act, for sure!

My experience leads me to believe that both approaches can be emotionally healthy approaches, if not taken to extreme. The key is for family members to make room for the differences among themselves. PALS that are cognizant of the pressures on those who care for them to “be prepared” so these caring family members can continue to juggle many balls in the air, do make it easier for those “planners” who care about them.  By the same token, those who care about someone with ALS and who recognize the reluctance of some PALS to spend time and energy focusing on “what might be”, a state of mind that may interfere with hope and a positive outlook, may find that regularly spending a little time “in the moment” will take some of the pressure off themselves and the ALS person for whom they care.

Sometimes, it is the PALS who is the “planner”, and other family members are “in the moment” kind of people. Making room for differences in coping styles is a real challenge. So we are left with a cliché that rings true: Different strokes for different folks.

Sue Humphries, LMSW

Director of Care Services

P.S.  Be sure to visit our website for more information about our Chapter programs and events www.CatfishChapter.org

Unsung Informal Sponsors by Melissa Cormican, Special Events Assistant

In this economy, it may be difficult for companies to commit to formal corporate sponsorships.  Some have found other ways to help our PALS.  One family recently needed to replace flooring to accommodate their PALS.  They could only afford to do so in the living room.  The company she hired replaced the flooring in the bathroom at no charge because they knew the family needed it.  While the renovations were occurring, the family had to leave their pet at the Vet.  When they went to pick up the pet, the Vet did not charge them for the stay because he knew doing so would be a financial strain.  These informal sponsors don’t get official recognition from the Chapter, nonetheless we and the families are extremely grateful for their generosity. 

Melissa Cormican, Special Events Assistant

A glimmer of light by Louise Frumkin

Caregivers of ALS (CALS) are always faced with tough decisions about how to spend their time.  Is it time to help my husband, wife, mother, father, brother, sister, daughter, son, cousin or friend with their physical needs?  Does the dog need to be walked?  Is my PALS safe home alone?  Can I get my child to his soccer game this week-end?  What will we eat?  Is the house in desperate need of cleaning?  I know my children need counseling to help them cope with their mom’s illness, but how will I find time to include trips to a therapist when I already cannot keep up with our day to day needs?  Given all of the demands placed on caregivers, it’s a wonder that they also find time to participate in the monthly Caregiver Support Groups which occur around the state. Yet somehow they not only find the time to see what the groups are like, but keep coming back month after month.  The pull to participate in these groups can probably be understood in many different ways.  I hope to accurately describe a couple of the more obvious reasons that people keep coming back.  Please send us your thoughts as well.

Less than 10% of families dealing with ALS have ever had any experience with it prior to their family member’s diagnosis.  The diagnosis, symptoms and disease progression are all new, mostly scary and always unwanted.  Yet day by day, our families become experts on ALS.  Their expertise develops through practical experience, through reading, and through talking with others who also have firsthand knowledge.  Support Groups provide a wealth of factual information about ALS.  Conversations are personal, honest and informative.  There’s no need to dance around the truth.  All of us sitting in the group understand the impact of ALS.  We get it.

Most caregivers admit to feeling that their world has been turned upside down as a result of their loved one being diagnosed with ALS.  No matter how productive, content or competent they felt prior to ALS, suddenly they are in unchartered territory.  Nothing can be taken for granted and “normal” is no more.  In fact, normal changes with every new symptom, and life becomes an ever changing journey.  Tomorrow is unpredictable, and next month completely unknown.  It is no wonder that caregivers are comforted by talking with other caregivers about their feelings of anxiety, anger, depression and fear.  All of us sitting in the group understand the wide range of emotions associated with ALS.  We get it.

But wait, don’t assume our meetings are all doom and gloom.  In fact, we are masters at laughing through our tears!  Humor is often our greatest ally in seeing our way through difficult times.  Many people ask if it’s OK to laugh when they know their loved one is suffering.  Humor allows caregivers to deal with some of their most genuine pain, which in turn allows them to keep providing the incredible care they offer their PALS.  While it may be true that your neighbor or co-worker may not see the humor in the situation, all of us sitting in the group understand that laughter can be the best medicine.  We get it.

In addition to the humor, understanding and safety of our support groups, perhaps most amazing of all is the generosity and warmth that occurs between group members.  As a group facilitator, I have witnessed people already consumed with the challenges of their own lives offer to build ramps or cook meals for fellow group members.  I have watched as the mother of a newly diagnosed grown man offers a handmade item to help the daughter of an elderly woman.  I have watched as phone numbers and email addresses have been exchanged, and listened to the appreciation of being included in each other’s family activities.  And I have experienced firsthand the hugs and acknowledgement of new found friends who have an undeniable common bond as a result of being impacted by ALS.

Whether you have just recently been introduced to ALS or have acquired considerable knowledge during years of care giving, please join us at one of the Caregiver Support Groups.  I know your questions, knowledge and perspective will help others, and I am confident that you will feel comforted by sitting in a room with others who get it.

Louise Frumkin, MSW, LCSW

Care Services Coordinator, Charlotte area office

 

P.S. Be sure to visit our website for more information about our Chapter programs and events www.CatfishChapter.org.