“1/20/12 Attend a Support Group in 2012!” by Lisa Hoskins, Care Services Social Worker

With a brand new year and January underway, perhaps a new year’s goal to consider would be to attend one of The Jim “Catfish” Hunter Chapter’s Support Groups.  You’ve probably heard about them at clinic or read about them in the newsletters.  Hopefully you’re receiving emails or notecards informing you of the most convenient support group’s meeting date, time and topic.  While I realize that support groups are not for everyone I do believe they can be extremely beneficial in alleviating isolation and providing useful information about ALS and what is happening in your ALS community. 

For those who have not attended one I think there is some apprehension about what this experience will be like.  Going anywhere for the first time can be daunting.  You might be concerned about where others are in their disease process and how this looks.  You might think that it’s going to be a “downer”.

What I’ve noticed and appreciate about support groups is the relationship building and meaningful connections that are being made.  PALS and CALS sharing; tips on what has worked for them or questions to ask at clinic.  There is a lot of laughing.  Going to clinic is vastly important because you are seeing specialists in a multidisciplinary setting to address a variety of needs.  Going to a support group you are getting hands on information and understanding from your peers who are also living with the reality of having ALS.  It offers a very valuable piece of the puzzle to those navigating through the layers of ALS.

We offer two kinds of groups; a Resource or Educational group as well as a Caregiver Support group.  We have in person groups as well as options to call in from home.  Currently we offer in person Resource Support groups in the Hickory/ Unifour, Raleigh/ Triangle, and the Greensboro/ Triad areas.  In person Caregiver Support groups are in Hickory/ Unifour, Charlotte, Raleigh/ Triangle, and the Wilmington areas.  There is also a Telephone Resource Support group and a Caregiver Support group offered.  As well as the new Telephone Caregiver Ventilator Support Group starting on February 23^rd from 3-4pm.

I’ll end with a PALS perspective on support groups.

When I was first diagnosed with ALS, I didn’t know anything about the disease or anyone living with it. I felt very alone. At support group, we come together, share ideas, coping tips, experiences and most importantly, to exchange emotional support. There is an educational speaker at every meeting as well as open discussion and refreshments. No where is there a more patient, understanding or helpful group for people with ALS. I have never met a PALS I didn’t like. There is an instant connection among members by just showing up. – Nancy Clements

Be sure to visit our website for more information about our current support group schedule, Chapter programs and events at  www.CatfishChapter.org.

 Lisa Hoskins, Care Services Social Worker

Announcing a Caregivers of the Invasively Ventilated Telephone Support Group February 23 at 3PM!! By Sue Humphries,LMSW, Director of Care Services

The decision to choose invasive ventilation is a difficult one for many families dealing with ALS and a no-brainer for others. Sometimes the decision isn’t really made. It just happens in the emergency room.

However carefully considered the decision may or may not be, the challenges can be overwhelming to caregivers facing the addition of the many tasks that are required in addition to caregiving responsibilities they have already accepted.

In truth, because historically a relatively small number of people with ALS have traditionally chosen this option, services from our Association and Chapter have been limited. However, as ventilation equipment becomes more portable, we think the numbers of those choosing invasive ventilation are growing. The Care Services staff is beginning an effort to learn more about the number of persons in North Carolina with ALS who are invasively vented and we are considering ways to better support those families.

One of the first steps we are taking is to create a Caregiver Telephone Support Group for Invasively Vented people with ALS. We are doing it by telephone so that caregivers don’t have to leave their homes. I am the facilitator and the first group meeting is February 23. All a caregiver needs to do is go to a quiet place where they can hopefully be alone, pour themselves a cup of tea or coffee, dial a toll free number and I will be on the other end of the line to provide support, answer questions, sometimes introduce a speaker but always to connect those of you with this important caregiving responsibility to each other. We draw strength from numbers! Let’s talk!

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

A Visit to Duke (with apologies to Clement C. Moore) by Brian Nikolich

‘Twas the day after Memorial and a long one in Durham;

Starting at eight it was exam after exam.

It started out early with a fun EMG,

Something I wouldn’t wish on my worst enemy.

I was shocked by a taser and stuck with a pin

Over and over, ag’in and ag’in.

But it was over by ten and on to the next one

Which was, thankfully, a whole lot more fun.

After a snack, we went ‘cross the way

To a really fun clinic where we got to play.

It’s called Assistive Technologies, and it was chock full of toys

To help PALS communicate, and make all kinds of noise.

Voices and microphones, all kinds of devices,

Software and hardware and computer mices.

I brought home a project to teach me morse code

That the computer can translate to normal text mode.

We stopped for some lunch, and then it was time

To see the good doc and confirm it’s not Lyme.

Just as last time, we saw the whole team,

PT, OT, Nutrition, once again all were supreme.

PT was first; my strength hasn’t changed,

Save for my right thumb, which is feeling estranged.

Then came Nutrition, my weight’s in the clear.

In fact, up two pounds, must be the beer.

Following that, we saw the OT,

Not much changed there, I still can dress me.

We saw Speech earlier at the time of Technologies

Things were OK with her, which put us at ease.

So after OT it was social work’s turn.

We enjoy time with Stacey upon each return.

Once they all finished, in came the doc

By that time we were looking at four o’clock.

He gave me a once over, another test of strength

And we talked about research for quite a great length.

But first came the results of the morning’s EMG

Which were as expected and what he thought we’d see.

There’s damage to muscles all over the place

Arms, legs and back, but not really the face.

Concerning the research, the trial we’d hoped for

Has been put on hold as it may speed symptoms some more.

But there’s one on the horizon, later this year,

If all goes as planned, the beginning’s quite near.

It involves a drug that’s already been tested

But higher doses, they’re hoping, will get this thing bested.

So all and all we’re in a place that’s OK.

We’re going to deal with it on a basis day by day.

Thanks to everyone there, it’s not hard to agree

If you’re facing ALS, Duke’s a great place to be.

The next visit comes the day after Labor

When we meet once again to talk and confer.

~Brian Nikolich, May 2007

 

“12/19/11, Holiday Mental Health for All by Lisa Hoskins, Care Services Social Worker”

This month I’d like to continue to focus on the caregivers.  The holiday season is almost here for many of us and, unfortunately for some, additional stressors and longer to-do lists.  Caregivers can be especially overwhelmed.  This list was found online on “My CRC Connections” website.  It was posted by a caregiver for caregivers.  While this group is related to Cancer it is a great reminder for all of us.

1. Do what you can ahead of time and take shortcuts.  (For example, make and freeze meals.  Do online shopping.  Get free gift wrapping where you can.)

2. Let go.  You don’t have to do everything the way you used to.  What traditions are the most important to you and your family?  Concentrate on those and let go of the rest.  It’s okay.
3. Simplify your decorating.  Put out only the items that are most important to you and your loved ones.  Perhaps keep it to one room.
4. Say “No.”  Whereas you don’t want to socially isolate yourself, you don’t have to accept every invitation.  Center the holidays around just a few meaningful activities.
5. Accept offers of help.  You don’t have to do it on your own.
6. Stay healthy:  Eat well, get a good night’s sleep and try to exercise a little each day.
7. Take a break.  Take a bubble bath, get a massage or go out with a friend.
8. Maintain a sense of humor.  Watch a funny holiday movie.
9. If you have a faith belief, practice it.  Lean on it for support and encouragement.  Your spiritual health is important, too!
10. Accept your emotions.  It’s okay to feel sad, scared or angry.
11. Lean on people who understand.
12. Lower your expectations for the holidays, and just enjoy them!

Lisa Hoskins, MSW, Care Services Social Worker

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

 

 

 

 

 

Thankful for our Board of Directors By Kelsey Hamilton, Special Events Coordinator

We could not culminate our “Thankful Series” without mentioning a very important group. Our Chapter services and programs would not be where they are today without the leadership, dedication and guidance from our Catfish Chapter Board of Directors. Our Board is influential to the success of our fundraising efforts, and many of our sponsorships and corporate contacts stem from relationships that they have built. The Special Events Department is thankful for our dedicated Board of Directors and look forward to continuing to work together to develop a strong corporate component for the Walk to Defeat ALS® and other Chapter programs.

Personally, I have had the honor of working closely with Mark Anthony, one of our Board of Directors here in Raleigh. Mark and Capstone Bank are leading the Triangle Walk to Defeat ALS® Corporate Effort this year, and we are off to an amazing start. The Corporate Effort is designed to engage corporate leaders in the community by getting involved with the Walk to Defeat ALS® in various ways (i.e. sponsorship, corporate teams, and personal fundraising). Mark is serving as our leader in forming partnerships with companies not only in Raleigh but across the state of North Carolina. The passion and determination he brings to building awareness to the fight against ALS is unparalleled, and our Chapter is sincerely thankful for all he is doing in opening doors to major corporate leaders in our community. I am thankful for Mark Anthony and all of our Board of Directors for the work that they do to further our mission.

 

Kelsey Hamilton
Special Events Coordinator
KHamilton@CatfishChapter.org
919.755.9001 ext 234

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

We are Thankful for Year-Round Fundraising: by Savannah Smith, Special Events Coordinator

The day after Thanksgiving may be known to some people as Black Friday.  However, in Pineville Park in Charlotte, NC the day after Thanksgiving included a turkey-burning workout!  The Fight for ALS Fitness Boot Camp was co-hosted by Colleen Fadel and Charlotte Adventure Boot Camp.  This event posed a fitness challenge for the 30 participants that morning.  Challenges included team competitions, exercise stations, and an obstacle course.  Prizes were awarded to the top finishing teams and individuals for that morning.  Did I mention this event raised nearly $10,000 for the Catfish Chapter!?

So, how is it done?  The organizers of the event decided around the beginning of November that this was a third party event that they were going to host.  They quickly got to work to make this event such a success. Colleen Fadel told us that prior to the event, she went to local businesses for donations such as breakfast items, water, coffee, and prizes.  From there, she emailed her friends and family – even the out of town relatives – and let them know she was hosting an event and donations began to pour in!  Those friends and family forwarded the message to THEIR friends and family members.  While people started to hear about the event, the word started to spread in the Charlotte community about the event. Thank you to Colleen and Charlotte Adventure Boot Camp for all of the hard work you put into this event!

On Being Thankful for Walk Committees, By Kara Strang, Special Events Coordinator

Our walk committee members are groups of people, working in eight different cities across North Carolina, comprised of a single goal – to end ALS.

To accomplish this task, they sacrifice their personal time, their family time, and sometimes, their work time.  They spend hours cultivating leads in their community, looking for potential new sponsors and informing friends and family of their mission.  They come up with fresh ideas to tackle the same old problems.  Their internal motivations give life to the committee, and help it to flourish and grow even when undertakings seem at their most daunting.

In my three months at the Catfish Chapter, I have had many opportunities to be thankful for my committees.  I have appreciated their experience, their guidance, and their excitement over our plans.  I have also heard my co-workers express similar offerings of gratitude as we discuss our plans for the upcoming 2012 season. 

We are all so thankful to have people in our communities who care so much about this cause, and who work so hard for the change they wish to see in the world.  Because, bottom line, we know that our efforts would not mean as much without yours.  So, to our committee members, please enjoy this time of thanks, and know that whatever you may be thankful for this holiday season, you are already at the top of our list.

On Being Thankful for Year-Round Fundraisers By Kara Strang, Special Events Coordinator

One of the joys of being a special events coordinator is to witness and revel in the creativity of teams and their fundraisers in the height of walk season.  In the days and weeks leading up to the walk, we watch as team members hold bake sales, knit beautiful homemade items for raffle, plan golf tournaments and spirit nights at restaurants and so much more – they come up with such fresh and creative ideas each year!

Some teams choose to hold their fundraisers outside the normal spectrum of the January through April whirlwind.  These events, hosted in the months when most participants have not yet started thinking about the April walk, serve to raise money and awareness for ALS all year long, and to keep the forefront and focus of the community on the fight to defeat this disease.

One such event was recently held in Wilmington on October 15. Sam Foy, a senior at New Hanover High School, organized a baseball tournament fundraiser as his senior project.  All proceeds from the fundraiser were donated to Team Talbert for the 2012 Wilmington Walk.  Team Talbert is led by Cindy Talbert, Sam’s former 4^th and 5^th grade principal, in honor of her mother Shirlee Wiseman.

Sam, a ballplayer himself, was interested in raising money for ALS because of its connection to the game, and because the disease has no cure.  “[ALS] needs more support and more awareness because of how little is known right now about it,” he said.

About 20 of Sam’s baseball teammates showed up to participate in the tournament and another 30 people came to watch.  The tournament was planned as marathon.  Instead of the normal 7 inning game Sam plays at school, he and his teammates planned a 15 inning game, and then went out to find sponsors to fund every inning they played.  The tournament lasted between three and four hours and raised over $1,000 for Team Talbert.

Sam, who is planning on participating in the Walk at UNCW on April 14, said that he and his father have spoken with his English teacher to make sure the tournament happens again next year.  “We’ve had a million ideas as to how to make it bigger and better,” he said.  “I can’t wait to see the event ten years from now.”

 

               

               

 

               

               

November is National Family Caregivers Month by Lisa Hoskins, Care Services Social Worker

This is to all the caregivers out there….  Who cares for you?  I hope that many of you can answer that question.  November is National Family Caregivers Month.  It seems an appropriate month since we honor our Veterans for their service, courage and dedication to this country. It is also a month to focus on our thankfulness.  Know that your efforts and caring are appreciated and acknowledged especially here at the ALS Association, Jim “Catfish” Hunter Chapter.  We offer Caregiver Support Groups currently in Charlotte, Hickory (Unifour area), Raleigh (Triangle area), and Wilmington as well as a telephone call in support group once a month.  Let this be a gentle reminder to you to allow yourself that same level of care you are providing your loved one.  

  10 tips for Family Caregivers by the National Family Caregivers Association:

1. Caregiving is a job and respite is your earned right.  Reward yourself with respite breaks often.

2. Watch out for signs of depression, and don’t delay in getting professional help when you need it.

3. When people offer to help, accept the offer and suggest specific things that they can do.

4. Educate yourself about your loved one’s condition and how to communicate effectively with doctors.

5. There’s a difference between caring and doing.  Be open to technologies and ideas that promote your loved one’s independence.

6. Trust your instincts.  Most of the time you’ll lead in the right direction.

7. Caregivers often do a lot of lifting, pushing, and pulling.  Be good to your back.

8. Grieve for your losses, and then allow yourself to dream new dreams.

9. Seek support from other caregivers.  There is great strength in knowing you are not alone.

10. Stand up for your rights as a caregiver and a citizen.

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

by Lisa Hoskins, Care Services Social Worker

Giving Thanks: Corporate Support for the Walk to Defeat ALS by Kelsey Hamilton, Special Events Coordinator

Corporate Support is vital for the success of the Walk to Defeat ALS®. The importance of Corporate Sponsors and Corporate Walk Teams is immeasurable. For the past few months, the Special Events Team of the Catfish Chapter have been busy securing  sponsors, engaging new and returning corporate teams, and hosting corporate events.

Across our state, Corporate Effort Events are being held to drive the corporate component of the Walk to Defeat ALS®. It is an honor to work with passionate and dedicated individuals who will bring our Walks to a new level in corporate giving. We are building corporate communities who will not only bring needed funds to help enhance our care services programs and provide additional funding for cutting-edge research, but they are bringing a sense of awareness and urgency in the fight against ALS.

This is why we give thanks to our Corporate Communities – to all who have, who are, and who will provide corporate support for the Walk to Defeat ALS®. We thank you for your commitment, time and generosity.

If you are interested in learning more about Corporate Sponsorship and other opportunities to get involved with our Chapter, we would love to hear from you! Please contact the Catfish Chapter at 1.877.568.4347 or by email at Walk@CatfishChapter.org.

Kelsey Hamilton
Special Events Coordinator
KHamilton@CatfishChapter.org
919.755.9001 ext 234

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