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.

Tough Times, Tougher People by Jerry Dawson, President

When I watch the news these days it seems that the stories are all the same, doom and gloom everywhere.  Whether it is the economy, a hurricane, wild fires, global warming, earthquakes, tornadoes, kidnappings, bombings, murder, the list goes on and on.  It is not surprising that anti-depressant use has nearly doubled in the U.S. over the past decade.

I often wonder what would happen if the media suddenly changed the way they present the news.  What if instead of presenting nine negative stories and one positive story, they presented nine positive stories with just one negative story?  The news can’t always be sunshine and rainbows but it doesn’t always have to be about a “potential” pandemic or the food that everyone must stop eating now.  If I hear one more story about Michael Jackson, I think I might end up on the evening news!

Sure times are tough, we get that.  But there are plenty of great things in this world to celebrate.  Every day I witness the amazing resilience of people living with Lou Gehrig’s disease.  I see their families and friends rallying around them.  I am surrounded by an awesome team of dedicated people who are always ready and willing to go the extra mile.  I see the incredible staff of our ALS clinics working hard to provide the best possible care.  The wonderful services that we offer would not be possible without the unwavering support from our volunteers and donors.  They know how important our programs, clinics and services are to ALS families and they do their best to continue their service and giving even in these tough economic times.  So the next time you hear your favorite news outlet peddling their version of “tough times” I hope you will remember that we are all surrounded by scores of “tougher people” with big soft hearts.

Together for a treatment, cure and improved care,

Jerry Dawson, President

The ALS Association – Jim “Catfish” Hunter Chapter

-PS.  Here’s a little good news from the Chapter…

Angela delivered a healthy baby girl and Megan delivered a healthy baby boy just a few weeks ago.  Also, my wife is due any day now with our baby girl.  Be sure to visit our website for more information about our Chapter programs and events www.CatfishChapter.org.

Lunch with the Catfish Classic Committee by Jennifer Oliver, Administrative Manager

This week, I attended an exciting Catfish Classic ALS Golf Tournament planning meeting.  The committee is really energized about the upcoming event.  I am really elated at that despite the current economy; companies are continuing to participate in the event which is evident of their loyalty to our cause.  However, we still need more sponsors and have plenty of golf ball drop tickets to sale.  I can’t believe we are less than 60 days out from the event!  I have my work cut out for me the next few weeks.

~Jennifer Oliver, Administrative Manager

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

My Wish for ALS by Claudia Winkler, Care Services Program Manager

As the care services program manager for the Jim “Catfish” Hunter Chapter, it is my job to administer our bereavement program.  I am notified each time a PALS loses their battle with ALS.  I then send mailings to the surviving family members in the hope that this expression of support will ease the pain they are feeling.  It breaks my heart each time I add a name to this list.  It truly makes me realize with each passing just how important it is to continue our work.   We must find a cure for ALS so that the number of names in this program becomes less and less until there are no more.   There is nothing I would love more than to be able to send get well cards to all these PALS instead of a sympathy card to their grieving families.

Claudia Winkler, Care Services Program Manager

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