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Going Beyond the Extra Mile
Wednesday, September 19, 2012

Kayla with Aunt PamThe ALS Association Greater Philadelphia Chapter is able to cover all the bases to support people with Lou Gehrig’s Disease through Research, Advocacy, and Patient Services and we can do all of that only because we have thousands of generous supporters who help every year. That support comes through many campaigns and events, like the Walk to Defeat ALS®. While thousands of people participate in the Walk to Defeat ALS®, some go above and beyond, raising $1,000 or more to join our Extra Mile Club. We greatly appreciate every one of these individuals, but Kayla Wilson really stood out this year.

That’s because Kayla Wilson is 11 years old.

While most people will find Kayla’s story impressive, including everybody at the Greater Philadelphia Chapter, do not tell Kayla or her mom Missy that her age was any sort of barrier. Both Kayla and Missy said that “just because she is 11 years old, that does not mean she can’t do it. You can do anything as long as you don’t give up.”

We can all learn a lot from this young girl’s tenacity, and even more from her huge heart.

Kayla’s interest in ALS started when she came home from school one day with an assignment on Lou Gehrig from her social studies teacher. She asked her mom if she could use the computer, which she rarely did, and started to do her own research into ALS. She kept learning more and more about the man and the disease. Since Kayla plays softball, she felt that she could relate to Lou Gehrig.

Unbeknownst to Kayla, she had another connection to ALS. While she was doing her own research for school, her parents were trying to decide when and how to tell her that her Aunt Pam had recently been diagnosed with Lou Gehrig’s Disease. Pam is a very important part of the family. She is godmother to Kayla’s father and to her little brother Connor.

After learning about her aunt, Kayla’s reaction was the same as it has been many other times in her life. She thought “what can I do to help?” Very quickly, she found a way.

Kayla’s grandmother told the family that she was signing up a team for the Rehoboth Beach Walk to Defeat ALS® and right away, Kayla wanted to join. When Kayla puts her mind to a project, you can be sure she will give 100%.

At first, Kayla started out with $50. She kept upping her fundraising goal by $200, and was determined to go the Extra Mile. Kayla wrote her own piece on her walk page and also wrote her own thank you notes. She then printed the webpage that she wrote and had the stories of her aunt and Lou Gehrig with her as she talked to teachers, parents of her friends on the softball team, contacts on her mom’s cell phone, and door to door in her neighborhood. Every day, Kayla asked her mom to check her email to see if another donation came in to get her closer to her goal.

Raising money to defeat ALS became a real family affair. Missy took Kayla and 7 year old Connor door to door and while Kayla talked to neighbors, her brother would stand behind her holding the envelope for donations. They made a great team. The contributions came in bit by bit through her own hard work. One day somebody gave $50 and Kayla was amazed at the huge individual amount. What she didn’t know was that a whole community was amazed by her.

Even her  brother was impressed and wanted to live up to his sister’s example. Since he couldn’t really ask the same contacts, he went to his teachers and raised an additional $30. Some older siblings give their little brothers and sisters a hard time. Kayla gives her brother an example to be a giving person.

The entire family shared that spirit. Kayla’s uncle Eric became the highest individual fundraiser for the Rehoboth Beach Walk to Defeat ALS®, bringing in over $15,000. The family’s team, DeFEETing ALS for Pam, became one of the top teams, raising over $32,000 with 77 walkers proudly displaying their teal and brown shirts.

Before concluding this incredible walk story, you might think that the Walk to Defeat ALS® inspired a young girl to become a giving person. While it may have helped, the truth is, that is who Kayla Wilson has always been. When Kayla was turning 7, she told her mom that she didn’t need any birthday gifts. She had enough toys. So she told her mom that she wanted to donate all of the gifts she got to the local children’s hospital. Instead of just inviting her regular friends, Kayla insisted on inviting more because it would mean more gifts for other kids. In true Kayla Wilson fashion, the response was overwhelming and her mom ended up taking her out of school one day so that she could deliver a huge wagon full of presents and gift cards to kids who needed it more than she did. Kayla felt sad that kids would be there for birthday’s and on Christmas and would be too sick to be with friends and family.

Missy asked her daughter if she wanted to keep any of them. She said nobody would think badly if she wanted one for herself. After all, it was her birthday. But no, Kayla insisted that it all go to others.  Needless to say, her mother, father, and aunt she cares so much about were all very proud.

Pam White may be losing her voice to ALS, but she has a family that will use their voice to do all they can do defeat ALS. Kayla has proven, before even turning 12 years old, that actions speak louder than any words.

That is how Kayla was able to go the Extra Mile and raise over $1,100.  That is how she earned her plaque at the Rehoboth Beach Walk to Defeat ALS® as the Highest Youth Fundrasier.

And that is the example that we all need as we work, together, to create a world free of Lou Gehrig’s Disease.

 

 

You can follow Kayla's example and go the Extra Mile by clicking here to sign up for a Walk to Defeat ALS near you.

 

 

 

 

 

 

 


 

 

 

Shoprite and their Customers: Partners in Caring
Wednesday, September 19, 2012

Whether they are helping customers save on their groceries or working to end Lou Gehrig’s Disease, the employees of Shoprite care about helping others.   That care for others is shared not just with their         co-workers, but with the customers that walk through their doors every day.

As Harry Baumgartner calls it, they are partners in caring.

That partnership is important at all levels of Shoprite. About a year and a half ago, the patriarch of Shoprite held a corporate meeting to bring in people from all 29 of their family owned stores. Nobody knew what he would be saying. His message was simple: we care about helping families live better. The Shoprite owners, workers, and customers have together developed a culture of caring.

 

That was a little over one year ago. However, Shoprite has been helping in the fight against ALS for over ten years. Since 2001, the 8 Shoprite stores in the South Jersey area have sold paper feet at the registers to help raise money for the Ocean City Board…Walk to Defeat ALS®. Over those years, they have raised $155,000 to help families with Lou Gehrig’s Disease. This year though was their biggest yet as they raised $33,000 at the Shoprite stores.

 

The campaign started when Lisa Perry, daughter of Ocean City Board…Walk to Defeat ALS® chair Bob Goudie, promoted it in 2001. The team of people from the Shoprite family have seen ALS directly at each event and continue to renew their commitment to a world free of Lou Gehrig’s Disease. Each store has a customer advocate, and that person not only strives to make sure customers have a good experience, but also that the stores are doing all they can to raise money to help families throughout the area.

 

Needless to say, the stores are all very competitive. In addition to selling paper feet, they have had bake sales, car washes, and hot dog and pretzel sales to raise money to fight ALS. However, the customers are just as invested as the workers. Harry Baumgartner talks about the people who shop at his stores with the same pride as those who provide them with customer care. He sees it as a greater community partnership to do good by others. 

 

Thankfully, our families in New Jersey get to benefit from that commitment to care. That’s why, with the support of Shoprite and their customers, we know that one day, we really can defeat ALS.

 

 

 

Join us for another exciting Ocean City Board...Walk to Defeat ALS on Saturday, September 22nd at the 6th Street Athletic Complex in Ocean City, NJ, presented by Certainteed Corporation and Shoprite & Their Customers!

 

 

Thanks to the Phillies
Friday, September 07, 2012

 

 

By Nathan Seidel

 

Nathan with his mom Lynn and grandma Marilyn at the 2012 Phillies Phestival

On July 26th, 2012, I had the best day ever!  I got to go to the Phillies Phestival with my Nan, who has ALS, and my mom.  It was so awesome to meet by idols – Roy Halladay, Cole Hamels, Ryan Howard, Jonathon Papelbon, Michael Schwimmer & Eric Kratz.  They were so nice to us.  They signed stuff, talked to us, and took lots of pictures with us.  I know my Nan really liked doing this with me because she knows how much I love the Phillies.  We also played some games and did the grab bags.  We go some great Phillies stuff that I shared with my cousins.  We all had a really good time.  The ALS Association and the Phillies ROCK!!

 

Click here to see more of the Phillies Phestival pictures on our Facebook page.

Dignity
Thursday, September 06, 2012

 

 

By Chuck Malloy

I completed this essay about my father, Patrick, after hearing the poet Dr. Maya Angelou discuss the meaning and importance of dignity and respect.

HONK…HONK. The unmistakable sound of a tractor trailer air horn penetrated the quiet, Levittown neighborhood. HONK…HONK. “I wonder where that is coming from,” I said to my father.

“I don’t know,” he said. A lifelong truck driver, my father recognized the powerful sound, but it was unusual to hear it in our neighborhood. Honk…honk. The truck moved closer to our house. My father struggled to the window to see the excitement.

I was a student at Temple University in Philadelphia. Like on most days, I had awoken early for school and helped my father with his breakfast that consisted of pureed food, orange juice, and myriad vitamins and prescription drugs.

My father, though only 49, was battling a terminal illness, Amyotrophic Lateral Sclerosis, better known as Lou Gehrig’s disease, a progressive degenerative disease of the nerve cells in the brain and spinal cord that causes rapid muscle deterioration. Patients typically live between three and five years after diagnosis; my father was is in his fifth year.

Though predictable in medical circles, my father’s decline in health was shocking to everyone who knew him. He had been a paratrooper with the 82nd Airborne Division and served in the Korean War. Once a strapping 6-foot-2 and weighing 210 pounds, he was now a fraction of his former self. He was confined to a wheel chair and struggled to breath and talk. His food had to be pureed due to his inability to swallow.

It was an extremely difficult time for my family and me. We struggled to balance work, school and my father’s care. As his disease progressed, so did the emotional and financial toll on our family.  

Honk…honk. The truck slowed down, engaged its air brakes and pulled in front of our house. It was a large Mack truck, with the distinctive Mack bulldog displayed prominently on the hood. Two large men jumped out of the truck.  They opened the trailer doors, unloaded several boxes, and walked toward our front door. “Hello,” said one of the men.

“Is this the Malloy house?” the other asked.

“Yes, it is,” I said.

“Is Pat Malloy here? We are from the Philadelphia Teamsters Local 500.”

My father had been a lifelong truck driver and proud member of the International Brotherhood of Teamsters, and at one time served as a union shop steward. He had been forced to give up truck driving a few years earlier, physically unable to perform the job.

The men entered the house and greeted my father, who was sitting in his wheelchair near the front door. They introduced themselves. My father couldn’t raise his arms or hands, so they placed their hands on his shoulder. “Hi Pat, we are from the Teamsters. We want you to know that we are thinking about you and your family. We stopped at the Nu-Way Market on Haines Road and picked up some groceries for your family.”

My father became overwhelmed with emotion and began to cry. Tears streamed down his face. He struggled to find words. “It’s been hard...we have had a hard time...thank you,” he said.

My father wasn’t demonstrative. He was a tough man, born and raised in a working-class neighborhood in Philadelphia, yet there were times when he was open and friendly and warm, especially when neighbors or relatives visited or when we had a backyard cookout. Even at all the christenings, the confirmations and the graduations, I never saw my father cry.  

The men emptied the truck, carrying several boxes of groceries for our family. We stored the food in the pantry and refrigerator. After the food was safely put away, the Teamsters said their goodbyes and departed.

As they drove down the street, my father, still crying, turned to me and said, “They remembered me, Charlie. They remembered me.”

This is part two in Chuck Malloy's series on his father. Visit our donate or volunteer pages to see how you can get involved to support people with ALS.

 

 

The Billy Lake Basketball Marathon - 20 Years of Creating Hope
Wednesday, August 29, 2012

In 1992, George H.W. Bush was President, the Washington Redskins won the Super Bowl, and Johnny Carson was handing over control of The Tonight Show to Jay Leno. For The Greater Philadelphia Chapter, the untimely passing of Billy Lake to Lou Gehrig’s Disease made an impact that is still felt today. It was then that the Lake/McDonald/Quinn families began an incredible journey to defeat ALS through the Billy Lake ALS Basketball Marathon, and later the Beef and Beer that also bears his name.

Like the bouncing of a basketball, there have been many ups and downs in the fight against ALS in the past 20 years, but the commitment of this extended family has never wavered. Through their efforts to support ALS research, much has changed since 1992, but, like many things, much has also stayed the same.  We still do not have a cure for ALS.

At least, not yet.

ALS is a frustrating and terrible disease for any family to have to face, but it also brings families together. Like Michael Jordan in 1992 or LeBron James in 2012, the Lake/MacDonald/Quinn family’s goal is bigger than an NBA championship though. It is a world without ALS.

                                  

Since Kevin Cain came up with the idea of having a basketball fundraiser to raise money for ALS research 20 years ago, there have been many reasons to be hopeful. Researchers have located many of the genes believed to be responsible for the 5-10% of cases called familial ALS, meaning the disease occurs more than once in a family line. This knowledge helps researchers understand what to look for to solve the 90-95% of sporadic cases of ALS as well. Each new gene found is another launching point for greater research that could lead to a cure. In the past few years, scientists have discovered mutated genes SOD1 and TDP-43, plus a mutation on Chromosome 9. These aberrations are linked to a majority of the familial cases of ALS and have all been discovered since that first basketball marathon.

While we don’t have a cure for ALS yet, the FDA has approved the use of Rilutek, which extends the life of an ALS patient by approximately three months, while ongoing research aims to lengthen that span. While this may seem like a small amount of time, every day that a person with ALS gets to spend with their family is one worth cherishing.

That’s not all. Through the lobbying efforts of the family and others, and because the research has proven so promising, the federal government has approved the ALS Registry Act, bringing together a wealth of information on people with ALS so that scientists have even more starting points to learn about causes and potential treatments. Also, because research has shown that cases of ALS are significantly higher among military veterans, ALS has been deemed a service connected disease, which means that veterans with Lou Gehrig’s Disease are ensured the best in care.

 

                        

The speed of ALS research is actually increasing. Just within the past year, researchers have located potential biomarkers for disease onset and progression, currently an unmet need in ALS clinical studies.  This is a tremendous breakthrough that gives us all reason to be excited. Many patients are currently enrolled in clinical trials, including trials from companies like Biogen Idec, ISIS, Neuraltus, Neuralstem, and Cynokinetics. These companies have been very successful in finding treatments for other diseases and see much promise in current ALS research.

In 1992, scientists at NASA were busy fixing the Hubble Space Telescope, but when they did, we could see beautiful pictures of the universe. In 2012, NASA successfully landed the Curiosity rover on Mars in its most daring mission yet. Clearly, scientific research has come a long way in those 20 years. Errors have been fixed, goals set higher, and the possibilities are more exciting than ever before. What was true for space exploration is true for ALS. We all want a cure for Lou Gehrig’s Disease, but a lot of people also wanted astronauts to walk on Mars. However, just like the fix to the Hubble Telescope, our researchers can see a wonderful picture of a world without ALS somewhere in the distance.

 

                  

 

During these past 20 years, the Billy Lake Basketball Marathon has grown and grown, just like our understanding of Lou Gehrig’s Disease. The event began at Msgr. Bonner High School, where the Lake family started the Billy Lake Scholarship Fund, awarding over $120,000 in scholarship money to over 20 students. Now the response to the event and the cause has brought the event to Haverford College. People have noticed the gains by ALS researchers and they’ve also noticed how much the Lake/McDonald/Quinn family has done, all while having a lot of fun along the way.

 

                             

 

So much has been accomplished in the fight against ALS since 1992. Every month, we read research updates by some of the best minds in the field. When the Billy Lake Basketball Marathon first started, scientists did not even know where to look. So much has changed since that first event, but still, we do not have a cure.

But one day we will. And whether that day comes tomorrow, next month, or in 20 years, we’ll be able to say that this event made a direct impact. For the over 850 families in our area and the thousands across the world, that day will be better than any NBA championship or even landing on Mars. If the past two decades say anything though, it’s that we have every reason to hope.

Register today for the Billy Lake Basketball Marathon on September 22nd at Haverford College by visiting www.billylake.com/marathon.html

 

 

 

 

 

 

Patient Services Update: The Three-Minute Vacation You Carry With You
Tuesday, August 28, 2012

By Jen Klapper, RN, CNS-BC

 

Imagining vacation can create the same positive physical benefits as being on vacation.

 

            Stress may not only feel bad: it has real physical consequences! The good news is, bodies and minds are an interconnected unit, and your thoughts can powerfully affect how your body reacts to stress. For an example of how your thoughts can influence your physical body, have you ever gotten nervous just thinking about something, and noticed your stomach reacted with butterflies, or you got sweaty palms? What you’re nervously anticipating is not happening in the moment, but your body doesn’t know that: it’s reacting to your thoughts of it.

 

You have the power to create positive body and mind reactions as well!

 

To be realistic, most of us can’t devote big chunks of time to sitting, pretzel-style, while saying “om.” Or maybe you’ve tried, but your “monkey mind” (the natural way of thoughts jumping from one thing to another) make you think you’re not doing it right. We will expand on that later. But do you have one to three minutes? That’s all you need for a quick mental “vacation” that can make real, positive changes in your body and your mind.   

 

Things that improve with a simple one- to three- minute mental “vacation:”

 

  • Lowered adrenaline and other stress hormone levels
  • Reduced blood pressure and heart rate
  • Return to normal digestion (which slows down when you’re stressed)
  • Return of normal circulation (when stressed, your body moves more blood toward heart and lungs and away from arms and legs).

 

Over time, these mini-practices can also:

  • - Lower irritability
  • - Increase problem-solving ability

 

We all have times when the pressure of the moment carries us away. The trick is learning how to get back to shore in the midst of daily activity. The parts of the brain that create positive relaxation responses are dormant when you watch TV. Have you ever watched 30 minutes of TV and feel no more rested than when you first sat down? But these parts are free to go into action when we take different kinds of breaks, the kind where we set the scene for calm.

Here are a few examples of stress-busters you can do in one to three minutes: 

1)      Close your eyes and take five very slow, deep breaths. Allow yourself to rest at the end of the exhale as long or as short as you like. You may or may not sense your heart beating.

2)      Find a soothing sensation in your home (Warm, soapy water for dishwashing? Cuddling with a pet? Sinking into a comfy bed with the perfect, cool pillow?) Now, for just one to three minutes, try to focus entirely on one or two of your senses enjoyed in this experience, like the feel of your pet’s fur, or the weight of your body on the bed.

3)      Listen to a piece of music that makes your spirit expand. Have them ready! If you have an iPod, you can make a separate file called “When I need a lift,” or “When I need some calm!”

4)      Walk around the block. Take the dog only if that’s relaxing.

5)      Belly breathing: Breathe normally with one hand on your chest, one on your belly. Notice which hand rises and falls with your breaths. Try to make the hand on your chest as still as possible, with the hand on your belly doing all the rising and falling!

6)   Balanced breathing: Breathe in for a count of four, breathe out for a count of two. Rest at the end of the exhale as long or as short as you like.

7)   Deep breathing with guided imagery (The more senses you include as you imagine it, the more your body will benefit, such as sights, sounds and smells of the shore): Close your eyes and take in a slow, deep breath and hold it for a count of three. At the same time imagine seeing waves of water rushing onto a sandy beach. Exhale and see the waves leaving the shore. Inhale and hold the breath for a count of three and feel the waves coming into shore, perhaps wetting and soothing you. Exhale and feel the water roll off your body as the water leaves the beach.

 

Note to us humans:

 

With many of these exercises, you may notice “monkey mind” (remember him? jumping from thought to thought?) and find you’re thinking about something else. It’s okay. When you notice it, just calmly and without judgment, go back to what you were trying. This is like building any muscle: the more you practice, the stronger it gets!

 

For more examples or questions about creating calm, please contact your Philadelphia Chapter mental health nurse: Connie Eriksson, Judy Lyter, or myself, Jennifer Klapper. And now, here's one more exercise for the road. You can build your relaxation muscles!

Sensory Review (great for getting to sleep at night, too!)

 

  • Sit comfortably, feeling free to shift or move for greater comfort and relaxation.
  • Let your eyelids float down, without closing completely, allowing your vision to go to a soft-focus or blur.

Without the need to move your eyes or head:

 

Say (out loud or to yourself): five things you SEE. For instance:

  • “I see the black and white tile pattern on the floor.”
  • “I see the curtain hanging in front of the window.”
  • “I see my black shoe.”
  • “I see the silver shimmer of my wristwatch.”
  • “I see a wooden chair leg.”

 

Then say: five things you HEAR. For instance:

  • “I hear voices down the hall.”
  • “I hear a car radio on the street.”
  • “I hear the heating system blowing.”
  • “I hear the sound of my own voice.”
  • “I hear silence.”

 

Then say: five things you FEEL (physically). For instance:

  • “I feel the weight of my hand on my leg.”
  • “I feel the coolness of air in my nose.”
  • “I feel the sheets on my toes.”
  • “I feel tension in my neck.”
  • “I feel the warmth of the pillow against my cheek.”

 

Then say out loud four things you SEE, then four things you HEAR, then four things you FEEL.

 

Then say three things you SEE, HEAR, FEEL.

 

Then two things you SEE, HEAR, FEEL

 

Then one thing you SEE, HEAR, FEEL.

 

Repeat the whole process at least once!

 

 

 

Damon Kane Tribute Run Raises Spirits as well as Money
Friday, August 24, 2012

by Eileen Thomas

Damon Kane

The weather was dreary but spirits were bright on Sunday, July 29, for the Damon Royal Kane Tribute Run. Sunglasses were definitely not required.

We had on-again, off-again rain most of the morning, but as always, it’s not about the weather, it’s about the corners and the camaraderie. There were enough twisty-turny, up-down roads to put a smile on the face of any Miata owner. The route led us through beautiful Bucks County, PA, and highlighted six covered wooden bridges. We passed oodles of old stone houses and a variety of historic structures. There were also some nouveau riche “castles” (many for sale, in case you were wondering what to do with that all that extra money you have lying around).

Four car clubs took part in the event. Del-Val fielded 38 cars, as did Philly Mini. Fiat-Lancia Unlimited (FLU) was represented by 21 cars and Lehigh Valley Miata Owners Club (LVMOC) by 14. That’s 111 cars!

The run was well organized, with eight groups taking off at timed intervals from the Tohickon boat launch in Nockamixon State Park. The cars were grouped mostly by make, since the various clubs communicate differently (CB vs FRS).

Pictures from the DRK Run

The first group left shortly before 9:30 a.m. and arrived at Willow Grove Day Camp before noon. Included in this group were Damon and Michele, driving Ken and Joyce Croswell’s blue NC (their own Miata was down with a bad alternator), and two of Damon’s nephews driving his Fiat Bertone X1/9 and his Mini. CBs came in handy to relay information, especially when aliens impeded group cohesiveness, or when an unruly Canada goose insisted on having the right of way.

We also had to dodge debris from the previous night’s epic downpour and lightning storm.

Despite the less-than-ideal weather, there were quite a few motorcyclists on the road and lots of bicyclists, many of the latter taking part in a charity event of their own.

The sun finally made its appearance shortly before noon.

One car in John Ketwig's group had a radiator problem because of a loose cap. They had to stop before the break, go up to a house and beg water from a nice little old lady. Fortunately they were able to finish the run with their group. 

Mike Dewane showed up late and got the "highlights" tour on the way down. 

The last group rolled into Willow Grove Day Camp before 2 p.m.

Following a picnic lunch, Curt Springstead did a crackerjack job of emceeing the program.  After his opening remarks, members of the other car clubs spoke, as did as a representative of the ALS Association of Greater Philadelphia, who was impressed with the spirit of all those present.

There were moving tributes to Damon and Michele and some funny stories, too, from representatives of each club, all of whom have been touched by this wonderful couple.

More than $7,000 was raised for the ALS Association, Greater Philadelphia Chapter, through registration fees , individual donations, sales of merchandise and ALS bracelets, a couple of 50/50s, and a generous id="mce_marker",000 donation by Fiat of Maple Shade. It’s worth noting that, while the registration fee was $40 per car, more than half the entrants included additional donations amounting to nearly $2,500. Also, some who could not attend made contributions directly to the ALS Association.

An event this big requires a lot of effort from a lot of people. Among those helping to make it a success were Thad Kirk, Kevin Pound and Shaun Folkerts of FLU; Iva Ferris of LVMOC; and Joe Montante of Philly Mini.

Bob Green took on the job – with a little help from his friends – of redesigning the route, originally based on one of Damon’s favorite runs. The only changes were the beginning, middle and end. Thanks, Bob, John Hunt, Gabe Miller and Bill Pendlebury!

Denise Balsama handled registration. Gabe Miller took care of the arrangements with Willow Grove. Ken Croswell and Lauren Nash wrote pre-event articles and Ken handled the 50/50. (The winners, John and Lisa Grabowski from Philly Mini, graciously donated their share back to the cause.)

DRK check presentation

Bev Reno wrote a beautiful poem, “Damon’s Smile,” and Craig Burkett provided wonderful graphics for the cover of our run instructions and the poster presented to Damon. The text on the poster reads:

“Thank you, Damon, for the many years of camaraderie and devotion to the fun of driving the backroads of Pennsylvania with friends in cool cars!”

Amen, brother.

 

Third Party Events are a great way to help the fight against ALS while honoring a person living with Lou Gehrig's Disease. Click here to see how you can create a unique event of your own or email Ali Nielsen at Ali@alsphiladelphia.org

 

 

 

 

A Long Drive with ALS
Thursday, August 23, 2012

Jim at the Phillies Phestival in 2011

Dr. Jim Madden of Blue Bell, PA was diagnosed with ALS in August of 2009 by Dr. Leo McCluskey at the ALS Association Penn Clinic in Philadelphia.  Of course, this news was not taken with joy, nor was it entirely unexpected.  Jim had been limping with a drop foot for a few months, was using a brace, and there was noticeable weakness in his right leg for almost a year.  He originally thought he had a bad pair of shoes. 

After the shock of diagnosis wore off Jim received a book called Eric is Winning from a colleague, Sister Germaine Sunista at St. Basil Academy.  Reading this book, which describes the efforts of Eric Edney in his fight against ALS through nutrition and healthy living, inspired Jim to explore all the possible options for living with ALS and to learn all about the latest research.  As we all know, there is no known cure for ALS at this time, and each newly diagnosed person must decide his own course of action.  After diagnosis, Jim did everything in his power to stay healthy and fight back against his disease.

As the first year-after-diagnosis progressed, so did the symptoms.  Jim went from a leg brace to a walker to a scooter as the left leg became weak along with the right.  Eventually he acquired a chair lift for the stairs and a converted, hand-controlled van to get about on his own with the help of the Chapter patient services.  To drive the van, Jim took driver training and passed his driving test with hand controls.  He taught instrumental music two and a half days per week in schools and in the evenings he did limited private teaching at his home studio. 

The second year brought about better results as the ALS progression began to slow down according to clinic exams.  A power wheel chair was ordered through patient services and approved after much waiting and two denials from Medicare.  Jim’s physical condition improved gradually.  He lost excess weight, began to feel very energized, and received many compliments on his healthful appearance and vigor. 

Now ending his third year with ALS, Jim has received great assistance at the ALS Association Penn Clinic. At his most recent clinic visit, however, there were signs of weakness in the right arm and lower numbers in his breathing test.  Transfers have become more difficult and Jim and his family are accepting the progress with hope that future progress will be very slow.

As he begins his fourth year with ALS, Jim intends to continue his restricted teaching schedule for the 2012-13 school year and beyond for as long as his abilities permit. 

Throughout the journey, although nothing medical could be done to halt the progress of the disease, plenty of help adapting to the disease was available from the Greater Philadelphia Chapter and the professionals at the ALS Association Penn Clinic.  A compromised quality of life was constantly counteracted with equipment, advice, and encouragement.  At every point mentioned above there was someone to listen, respond, and guide this particular ALS patient along his way.  Stretching exercises were recommended to keep the body limber.  Braces, walkers, wheel chairs and the scooter provided mobility.  Periodic testing checked muscle strength, breathing ability, mental, and vital functions.  Chair lifts gave him the ability to go up the stairs.  Referrals to the Bryn Mawr Rehab Center facilitated his hand-controlled driving adventure.   Referrals of physical and occupational therapists provided helpful instruction on the use of all equipment.  The most amazing part of all of this help was that it was given with sincerity and dignity to not only Jim, but to Claire, his wife, and to several of his family members who had the opportunity to meet and interact with many of the ALS team. 

A highlight of Jim’s relationship with the ALS Association was attending the Phillies Phestival at Citizens Bank Park in 2011.  A big-time Phillies “phan”, Jim and his son, Greg, had the opportunity to meet all of the players, players’ wives, coaches, and management people, even the Phanatic!  Pictures were taken and autographs were signed as long conversations gave insight into the lives of these home town heroes.  Jim and other people with ALS and their guests were treated like royalty and guided through the evening by the ALS Association staff and countless volunteers who joined the Phillies organization in supporting our cause.  Several of Jim’s family members have participated in other ALS Association Young Friends functions over the past few years, and the students at Saint Basil Academy, where “Dr. Madden” has been band director for eleven years, honored him with an ALS Awareness Day during which they printed and wore ALS T shirts and made a contribution to the ALS Association.

Jim Madden is excited to speak on behalf of people with ALS in our area at the 2012 Greg Gross Golf Outing on August 27 at the Old York Road Country Club, where two of his sons will be participating in the events of that day.  The Greater Philadelphia Chapter is just as excited to have Jim share his story, which inspires all of us to work for a world free of ALS.

It's Good to be King...or is it?
Wednesday, August 22, 2012

 

 

By Darin Miller

Darin Miller and his family.

In case you always wonder what it's like to be a king, I can tell you:

I have not prepared a meal in years. In fact, if I want a snack I have someone get it for me. And like my meals, my snacks are fed to me. If I do not feel like it, I do not have to go to the kitchen or to the table. All food is brought to me. If I want more, I simply ask for it. I have not held a fork, spoon or knife for over a year. Likewise, it has been a year since I've had to drive myself anywhere. I am constantly chauffeured around. In fact, my feet hardly ever touch the ground. When not in a car, I use a blue "chariot" to whisk me around. While in my chariot, people will typically get out of my way, open doors for me and smile as I pass on by, apologetically excusing themselves for being in my way, whether they actually are or not.

I do not have to bathe my children, help them get dressed, or put them to bed.  I do not walk the dog or take out the garbage. When it snows, I do not shovel the driveway. I do not cut the lawn. In fact, I do not do any household chores, upkeep or repairs, inside or outside our home at all.  When they are being done, I am usually resting on my throne, a reclining chair in our living room, in front of a large screen TV. when I get up from my throne, the throne lifts up and tilts forward to make it easier for me to rise. Even then, my chariot is waiting for me close by. These are a few of the moments when my feet actually touch the floor. I do not have to tax myself by getting dressed. I am assisted with this task. I also have my hair combed and teeth brushed for me. I do not even have to wash myself. I am showered and scrubbed from head to toe. When necessary, my eyes, nose and mouth are wiped for me, as well as all points south. 

I rarely go to see family and friends, unless it is a special circumstance.  If people want to see me, they will usually come to me.  People appear to be overly concerned about my welfare and are always asking how I am feeling and how can they help me.  When I complete simple tasks, people are often amazed and will offer me congratulations and undue praise.

At nighttime, I do not have to prepare for bed. Again, my feet barely graze the floor as I transfer to my bed. I then have either the bottom and/or top of the bed raised or lowered until I'm comfortable. If I choose to watch TV, the TV is put on for me. Channels are changed by my request. If I so request, desert will be served to me in bed.  When it is time for sleep, my face and hands are again washed for me. Things like blankets and pillows are brought to me to make me comfortable. I go to sleep when I want. It does not matter if the kids are already in bed, the dishes are done, or if any other chores are unfinished.  If the kids should awake in the middle of the night, I always remain in bed. I do not awake to an alarm clock. I am usually awoken at a specified time that I have designated. Some days, when I feel like it, I sleep as late as I want, sometimes as much as 10 or 12 hours and it is my choice if and when I want to get out of bed.

Although this sounds like a wonderful life, there are some downsides to being King within my kingdom.  In most kingdoms, the Queen will sit beside the King and reap the benefits.  Unfortunately, in my kingdom, the Queen is on call 24/7 and is responsible for making sure 100% of the tasks outlined above are completed almost each and every day.  My Queen is assisted, at times, by two princesses who also reside in the castle. Although the princesses are only 6 and 4 years old, they do not escape service to me, their King. They will often assist the King by operating the television, fetching food or water and serving it to the King, typing on the computer, as well as other tasks they are capable of completing. On occasion, the task required is more than to be expected from a 6 or 4 year old, or they may not always fully comprehend the task they are being asked to complete, but they will always try their best to assist the Queen in service to their King. They will sometimes tell the King that they wish that he could do for himself. Their wish is genuine, with no malice, and I, the King would like nothing more than to fulfill their wish, but right now, I cannot. I tell them that that I will try my hardest to fulfill their wish someday. The eldest princess has vague memories of the King serving his own needs and doing for himself, but the youngest princess has no memory of that all. The youngest princess will sometimes look at pictures of the King without his chariot, and looks perplexed, as if she does not recognize the King at all. Still, they do not complain, at least not as much as you would expect of princesses so young. This is one of the most difficult parts of being King but that is the way of life in this castle.

So what is it like to live like a King... it truly, truly sucks!

P.S.- I would like to thank my Queen, and she is truly a Queen, for the happiest nine years of my life.  Although I sometimes try with this blog, words cannot express how I feel about her.  She amazes me more and more each day, and each day, I realize how lucky I am to have her.
Happy 9th anniversary Tracey.  I love you!
 
Thanks to Darin for letting us share his writing from his blog at http://50000to1.blogspot.com/
 
 
One Year, One Cause: A World Without ALS
Tuesday, August 14, 2012

 

"I can imagine no more rewarding a career. And any man who may be asked in this century what he did to make his life worthwhile, I think can respond with a good deal of pride and satisfaction: 'I served in the United States Navy.'" – President John F. Kennedy, August 1, 1963

 

Leo James’ service to his country began as a Navy seaman during Vietnam. President Kennedy’s words ring true for Leo - he is proud of his service in the United States Navy. Little did he realize, but nearly 50 years after President Kennedy spoke with pride of his own time in the Navy, Leo, would be facing a different kind of battle – a battle with ALS. Military veterans are twice as likely to be diagnosed with Lou Gehrig’s Disease.

Leo’s journey with ALS began when he was diagnosed on August 4th, 2011. In that one year since diagnosis, Leo has found a new way to serve, committing himself to doing everything in his power to defeat Lou Gehrig’s Disease, both for himself and everyone else who is affected by it.

After Leo’s Navy service ended in 1973, he worked in many different jobs around Pottsville, Pennsylvania, mostly in the textile industry. He started to notice things were not right while at work, but he did not have any idea what to think of it. People around him noticed that he was walking with a limp, but Leo didn’t listen to them because he could not imagine why he would be limping. His health was fine and he had not been in any accidents, so he did not think it could be a big deal.

Ten months after his coworkers noticed how he was walking, Leo started to trip over his feet. That is when he knew he should get a better look. Leo went through three weeks of therapy and a lot of blood tests and MRI’s before he was sent to Hershey Medical Center. That is where, on August 4th, Leo was diagnosed with ALS.

The words “you have ALS” are life changing. Thinking like a true veteran, Leo knew there was only one option: do everything in his power to fight and defeat ALS. Since that day, Leo James has used every opportunity to advocate both for himself and for every other person and family touched by this disease.

Before August 4, Leo would support friends in other charity walks with donations here and there. This was the first time he became seriously involved.

Almost right away, Leo became a monthly donor to the Greater Philadelphia Chapter. “I do what I can,” Leo says. “Who I’m helping is not just everyone else, it’s me too. Every bit gets us closer to that day.”

When Leo says “I do what I can,” he really means that he does everything he can. In addition to being a monthly donor, Leo became an advocate. He met with his State Senator Dave Argall to tell him to support state funding for ALS patient services. Then he saw that he could do more and travelled from Pottsville to Harrisburg, where he went on the House floor and then met with additional legislators to ask their support for people with ALS, especially veterans.

 

After a great day in Harrisburg, Leo inquired about going to Washington for the annual Advocacy Day and Public Policy Conference. He was told that he could still go, but early registration had passed and travel from Pottsville was not easy. Leo’s response? “I don’t care, I’m going.”

In Washington, Leo did not just talk to Congressmen, he learned how to be a stronger advocate. He soaked in information about the ALS Registry, the ALS Research Project at the Department of Defense, and the MODDERN Cures Act.

When he returned to Pottsville, Leo spread the word in his community about supporting research in Washington and supporting patient services here in Pennsylvania. He personally went through town gathering petitions for support in Harrisburg and then talked with a local reporter about legislation in Washington. After his profile ran in the local paper, more people pledged to help, including his friend at Goodfellas Lounge, who immediately set out to help. Goodfellas will be holding an event to support Leo and others with ALS in Schuylkill County on August 25th with a wide variety of bands playing, including acts like Hooligan and Adrenalyn.

Because he shared his story, an entire community wants to support Leo, but he gets the most support from his family. He lives with his brother who is always helping at home and willing to do anything that is needed. His sisters Cathy and Bonnie go to events and Bonnie regularly takes him to the Hershey ALS Association Clinic. This year Cathy took Leo to Washington for Advocacy Day, but Bonnie has already asked to take him next year.

That support that Leo receives motivates him to give back to others. “Without the ALS Association Clinic at Hershey Medical Center, I don’t know what I would do,” says Leo. “They have the answer to any question I have and connected me to the appropriate veterans’ organizations. Shelley Hill and Dr. Simmons are great and always give me a heads up on what I need to do next.”

That is why Leo says it is so important to attend whatever events he can, including this past May’s Hershey Walk to Defeat ALS®. Meeting others with ALS reminds him why this fight is so important.

“I see a lot of people at various stages of this disease,” Leo said. “It’s a little scary to be honest. It’s amazing what some people had to go through and still come to advocacy or the Walk to Defeat ALS®. There really are a lot of dedicated people and that’s why we are going to make something good happen.”

With Leo’s dedication in particular, we are going to make something good happen for everyone touched by ALS. And that will give us all a good deal of pride and satisfaction.

 

Sharing Your Story
Friday, August 10, 2012

 

 

By Frank Gabrielli

When I was diagnosed with ALS in 2011, it didn’t just affect me, it affected my entire family. The same is true for everyone who is touched by this disease. That is why my wife Mary and I promised to do whatever we could to help defeat ALS, not just for those who have been diagnosed, but for their spouses, their children, and their grandchildren who also want to see a cure.

When we went to Washington, D.C. for the first time as ALS Advocates, I found that our members of Congress already knew a lot about Lou Gehrig’s Disease. The ALS Advocates who had met with their legislators over the years had made tremendous impacts, winning funding for the ALS Registry and the ALS Research Project at the Department of Defense. They also were successful in helping veterans like myself get the absolute best in care.

Frank recently shared his ALS story on WPHL-17's Eye Opener and talked about the great work of the Philadelphia Phillies.  

I may not walk like I used to, but I can still use my voice as an ALS Advocate to make sure that every family has hope for a future without ALS. Your personal stories make a big difference, so join me and tell yours too!

Join Frank for our August Third Party Event of the Month, Cut-a-Thon to fight ALS on Sunday, August 26.

 

Patient Services Update: What is PLS?
Tuesday, July 31, 2012

By Maureen Reid, RN, BSN

PRIMARY LATERAL SCLEROSIS (PLS)

PATIENT INFORMATION

 

What is Primary Lateral Sclerosis?

 

Primary Lateral Sclerosis (PLS) is a rare neuromuscular disease characterized by progressive stiffness, poor coordination and eventually weakness in the voluntary muscles, such as those you use to control your legs, arms, tongue and swallowing muscles. PLS belongs to a group of disorders known as motor neuron diseases. Motor neuron diseases develop when the nerve cells that control voluntary muscle movement degenerate and die.

PLS only affects upper motor neurons. This is a somewhat confusing term, because it does not mean only the motor neurons controlling the upper portion of your body, but rather the motor neurons in your brain, in contrast to the lower motor neurons (spinal motor neurons) in your spinal cord.  PLS is often mistaken for another, more common, motor neuron disease called Amyotrophic Lateral Sclerosis (ALS). However, Primary Lateral Sclerosis usually progresses much more slowly than ALS and is more likely to cause muscle stiffness (spasticity) and poor coordination initially, in contrast to the rapidly progressive muscle weakness and wasting seen in ALS. 

 

Symptoms and Progression

 

PLS can begin at any age, but it's more common after age 40. Signs and symptoms typically take years to progress, and most commonly being in the legs, progressing as follows:

  • Stiffness, weakness and spasticity (tightness and exaggerated reflexes) in your legs
  • Tripping, difficulty with balance and clumsiness as the leg muscles weaken
  • Weakness and stiffness progressing to your trunk, then your arms, hands, tongue and jaw
  • Hoarseness, reduced rate of speaking, slurred speech and drooling as the facial muscles weaken
  • Difficulties with swallowing and breathing may occur late in the disease
  • Less commonly, PLS begins in the tongue or hands, and then progresses down to the legs.
  • Some people develop emotional lability (crying and laughing inappropriately, involuntarily, and uncontrollably).  This is also called pseudobulbar affect.
  • Bladder urgency may occur.

Causes

As is the case with ALS, the cause in most individuals is not known, although very rarely it is seen in more than one generation of a family.  Scientists have searched for specific factors in the environment that may trigger PLS, but none have been clearly identified so far.

Diagnosis

There is no single test that confirms a diagnosis of PLS. In fact, because the disease can mimic signs and symptoms of other neurological diseases such as multiple sclerosis and ALS, several tests are done to rule out other diseases. After taking a careful record of your medical history and performing a complete neurological examination, your doctor may order the following tests: 1) Electromyography (EMG) and nerve conduction studies, which test the electrical activity of your nerves and of your muscles when they contract and when they're at rest.  This test can measure the involvement of lower motor neurons, which can help to differentiate between PLS and ALS. 2) Blood work to rule out vitamin deficiencies, autoimmune disorders, enzyme deficiencies, infections and a variety of other disorders.  3) MRI of brain and spine to rule out other causes of muscle weakness.  4)Cerebrospinal fluid analysis from a lumbar puncture (spinal tap) to help to rule out multiple sclerosis and other causes of spasticity.

 

Treatment

 

The treatments for primary lateral sclerosis focus on relieving symptoms and preserving function. There are no treatments to prevent, stop or reverse PLS. Treatments include:

  • Medication. Drugs are available to relieve muscle stiffness (spasticity), including baclofen, tizanidine (Zanaflex), diazepam (Valium) or dantrolene sodium (Dantrium).  These medications are taken orally. If your spasticity isn't controlled with oral medication, your doctor may recommend surgically implanting a medication pump to deliver baclofen directly to your spinal fluid (intrathecal pump). Other medications may be prescribed to treat cramps or pain related to spasticity, including gabapentin (Neurontin), or analgesics (pain medications).
  • Physical therapy. Stretching and strengthening exercises will help to maintain muscle strength, flexibility and range of motion, and to prevent joint immobility.
  • Speech therapy. If your face, tongue, or swallowing muscles are affected by PLS, speech therapy can help you compensate and adapt.
  • Assistive devices. Physical or occupational therapists can determine whether you need assistive devices for getting around, such as a cane, walker or wheelchair, or whether you require other equipment to help with tasks such as bathing, dressing, eating, and washing, as PLS progresses.
  • Multidisciplinary clinic.  Patients with PLS may find it beneficial to receive care in a multidisciplinary clinic, similar to those available for people with ALS. These multidisciplinary clinics may provide patients with the necessary treatments that they require by having an occupational therapist, physical therapist, speech language pathologist, nutritionist, counselor, nurse, and physician all in one site.

Prognosis

Patients can often live with PLS for many years and very often outlive their neurological disease and succumb to some unrelated condition. The progression of symptoms varies greatly between individuals, and there is no way that a physician can predict the rate of progression and degree of limitation that PLS will cause in you. 

 

Some Sources of Additional Information:

  • Spastic Paraplegia Foundation:

http://www.sp-foundation.org/

  • National Institute of Neurological Disorders and Stroke:

http://www.ninds.nih.gov/disorders/primary_lateral_sclerosis/primary_lateral_sclerosis.htm

  • eMedicine-Medscape

http://emedicine.medscape.com/article/1171782-overview

  • Mayo Clinic

http://www.mayoclinic.com/health/primary-lateral-sclerosis/DS01115

Holiday Lake
Tuesday, July 24, 2012

By Chuck Malloy

(This is the first part in a series of posts by Chuck Malloy)

Patrick J. Malloy Jr.My family enjoyed visiting the myriad of New Jersey lakes that were tucked between the Jersey Shore and Philadelphia. I remember visiting Cedar Lake and Olympia Lakes during the summer months, but a family favorite was Holiday Lake. It was always a fun trip. 

 

My mother would cook the night before and prepare mountains of food. Chicken, hamburgers, hot dogs, potato salad, macaroni salad.  All the things to feed a family of six, plus three or four neighborhood friends. The day of the trip, my father would load up the station wagon: ten kids, several containers of food, baseball bats and gloves, soccer balls, a badminton set, volleyballs, and beach chairs. I don’t know how everything fit in the car, but it did.   

 

We would make camp just near the lake, close to the grills and recreational fields, where we could swim, play, and picnic.      

 

In the deepest part the lake, close to the middle, was a large diving dock. One of the highlights of the day was when my father let us swim out to the dock with him. It was pretty far away.  “Let’s go boys,” he would say. He’d wave to the life guard, and we would proudly swim out with him. He swam behind us, encouraging us to kick and to keep moving.  

 

Once on the board, my dad would do a few dives and cannon balls.  Then he would grab us by our arms or legs and toss us into the water.  He was very strong.  It was so much fun. Our friends would get in line eagerly awaiting their toss.   

 

This time was different, however.  About a year earlier, my father had been diagnosed with Lou Gehrig’s disease, a neurological disorder. Lou Gehrig’s disease causes rapid and pronounced deterioration of the muscles. It is terminal.

 

I remember the day my father learned of the diagnosis. I was watching television with my brothers and sisters.  My parents walked in and told us that they needed to talk with us.   This must be serious, I thought.  They had been to the doctor and dad was sick.  He had ALS, named after Lou Gehrig, the famous baseball player. Terminal. What does that mean? I knew about Lou Gehrig because I loved baseball, but I didn’t know a disease was named after him. And I didn’t notice anything different about my father. He seemed healthy to me. He was always working around the house, and he was driving a truck for a living.  He was still hard to bring down playing football, and he could hit a baseball a country mile.

 

My father climbed onto the diving platform then ran to dive into the water, but it looked clumsy, not like he used to dive.  He swam back to the ladder to try again.  He landed on his belly, and he had a hard time catching his breath.  I heard my mother yell, “Pat, what are you doing! Boys, go help your father.”  My brothers and I swam over to my father to help him. He tried again, a little better this time, but it was clear that something was wrong.      

 

We swam back to the shore; though this time we swam behind my father.  It was time to eat lunch.  My father fired up the grill and cooked, while my mother served the food.  When we finished, my father turned to us and said, “how about I hit some baseballs.”

 

My father loved to hit baseballs to us, and boy could he hit.  He used a large Louisville Slugger 42 ounce wooden bat.  He could hit a baseball a country mile; you had to run a long way to catch it.  It was one of the highlights of our trip to the lake. 

 

 “Yea that sounds great, dad.” We grabbed our gloves.  We took our places on the field, far away from my father.  He took his large bat and tossed the ball into the air.  Whoosh.  The ball fell to the ground. Again, he tossed the ball. Whoosh.  “Nice try dad. Try it again,” my brother John yelled.  Crack. A grounder to Tim.  “At a boy, Tim. Nice grab,” I yelled.  Whoosh.  Whoosh.  Whoosh.  Something was wrong. My friend John yelled to me, “hey Charlie, “what’s wrong with your dad?”  Like me, John didn’t know the seriousness of my father’s illness.  “I don’t know, John. Maybe he is tired.”   I was scared.  The moment seemed surreal. Time and space slowed. My father struggled to lift the bat and regain his balance.  I could hear his heavy breathing and see the sweat pooling on his brow.  The bat seemed bigger than usual; he seemed smaller. 

 

Regaining myself, I yelled, “come on, dad, you can do it!” “Yea, come on, Mr. Malloy,” my friend John yelled.  Crack. That’s a deep one. “Way to go, dad!”

 

I would later learn the seriousness of my father’s illness through research, talks with doctors, counselors and other caregivers, but mostly through brutal experience.    

 

That day, though, I saw my father differently. He was always the tough one, the paratrooper with the 82nd airborne, the Teamsters truck driver.   His strong arms tossing us into the lake so easily. The baseballs that he hit a country mile. 

 

I saw my father trying to grasp the athleticism that was eluding him; trying to keep his family together; trying to protect us from an unwanted intruder. He was brave. He was determined.  I realized that things would never be the same.  

 

But, I also saw myself differently.  I came to realize my compassion, and the compassion of my family and friends. Our roles were changing. We were cheering my father on; we were helping him; we were becoming the strong ones.   

 

Afterward, we walked back to camp and my father started up the grill again.  

 

"Charlie, want a hot dog?”

 

“Yea, dad,” I said.

 

“Hey dad, let me help you.”

One more reason why you should never give up
Thursday, June 21, 2012

 

By Kathryn Brower

 

Kathryn Brower and her mother.I've always had a very close relationship with both of my parents, and although my father served more as a guardian, provider, and overseer, my mother was more of my emotional supporter. My mother was not only my parent but also, more importantly, my best friend. She was the most important force in my life for the first 26 years of it. When my mother lost her battle with ALS in December of 2005 it left a giant, unfillable hole in my life. I didn't know what to do, or how to continue on living in a world where she didn't exist.

There are a lot of things that you can do to help to heal yourself after the loss of a loved one.  One thing that became increasingly important for me was to stay connected with The ALS Association.  During my mom’s courageous battle with ALS, the amazing people at the Arizona Chapter (where she lived) and the Greater Philadelphia Chapter (where I live) were pivotal in making life easier for our whole family.  I am so grateful to the wonderful employees and volunteers that work for The ALS Association, for giving me and my family a community of people who understand our unique situation. 

It has not been easy to stay connected with ALS, but it is something that I feel I must do.  It is a delicate balance to find the right amount of advocacy; you don’t necessarily want to devote every waking moment to the fight, but you need to stay as involved as you can.  For me, May is the toughest month of the year.  Although my mom died in December, May was her birthday month, and it also is host to the dreaded Mother’s Day.  Luckily, May redeemed itself to me by being ALS Awareness Month.  One of the greatest lessons I learned from my mom was to try to make a good situation out of a bad one, and being able to focus on advocacy in the month of May is the greatest way to honor her memory. 

Going to Advocacy Days every year is something that I have committed to and will continue to attend until a cure for ALS is found.  Every year I meet more wonderful family members who are all in the same boat. Every year I meet more amazing people who work tirelessly as caregivers.  Every year I meet more of the incredibly giving people who work behind the scenes for The ALS Association.

When I look back on the last eight years (since my mom was first diagnosed), it seems almost miraculous how much of a difference we, the ALS Community, have made in such a short time. The first time I went to ALS Advocacy Days was in 2005 and most of the talks that we had with our Senators and Representatives were to introduce them to a disease that they had never heard of. There were tears, hugs, and lots of pictures of family members being passed around. There was, at the time, a lot less funding for ALS research and basically a general lack of information for everyone. For three years, I lived in Cambridge, UK, and flew back to attend the conference.  No distance, nor impediment will keep me from attending and advocating.  Now, seven years later, we can proudly say that we have accomplished A LOT. There is a completely overwhelming feeling of hope at the conference each year, and people are extremely optimistic that a cause, a drug, or a cure could be just around the corner.

Now when we meet with our members of Congress, they remember us and remember what we are fighting for. They know why we come to Washington each year and they can see on our faces that we mean to keep coming back every year until ALS is eradicated.  We have to remain hopeful that our country is on our side and will help us continue to find funding, even in times of economic insecurity. 

Stay in touch with The ALS Association, keep advocating, and continue to create relationships with other patients, family members, and caregivers.  The people you meet through The ALS Association are invaluable to the process of healing and holding on to hope for a treatment and a cure.

 

Recently, Kathryn took a new step in advocacy by joining The ALS Patient Advocacy Coalition (ALS PAC). Click here to see how you can join Kathryn and others like her in spreading awareness all year.

 

 

Patient Services Update: Considering Home Care
Monday, June 18, 2012

 

By Wendy Barnes, MSW, LSW

One of the most common concerns we hear from people with ALS is that they want to be able to remain at home during their illness.  They want the comforts of home and to be surrounded by family and friends. As the symptoms of ALS progress though, this can become quite a challenge for both the PALS and their caregivers.  One option that can enable them to remain at home is In Home Care. 


In Home Care is a service that can provide non-medical or non-skilled assistance, such as bathing, dressing, grooming, toileting and feeding and can be obtained through homecare agencies in your immediate area. These services would be performed by a home health aide and visits can range from as little as 1 hour per day to several hours per day.  In Home Care can be funded privately by families, insurance, or families or through county or state programs.( For more information on these programs and to find out if you may be eligible, please see Shelley Hill's post from May 2012)

Knowing when to set up in home care services is a difficult question. It is recommended that families sit down and discuss the option openly with each other at periodic intervals throughout your illness. 

Some questions for patients to consider are: 

  • Am I exhausted after I perform my personal care?
  • Is my personal care taking longer and longer as time goes on?
  • Am I at risk for falling during my personal care routine?
  • Am I now in need of another person to assist?

Some questions for CAREGIVERS to consider: 

  • Am I physically able to assist?
  • Do I have health problems that would prevent me from assisting?
  • Am I exhausted after assisting in the personal care?
  • Am I spending a significant amount of time performing personal care?
  • Do I no longer have time to do the things I enjoy?
  • Am I more easily angry, frustrated or stressed after providing care? 

If you answered “yes” to any of the above questions, you may be ready to start thinking about setting up in home care.  Consider contacting a local agency and having them come out to evaluate your needs. If you are uncertain of who to contact, ask your friends and neighbors for referrals. There are social workers at the chapter and at the clinics you attend that can give you recommendations as well. Please also take a moment to see if you qualify for the Howard I. Abrams In-Home Care Program and if it meets your needs. 

If you would like more specific details on In Home Care, including how to hire an agency, please join us on July 17th, 2012 at 11:00AM for The Homecare Decision, a Managing ALS Teleconference. 

The Greater Philadelphia Chapter provides knowledge and guidance all along your journey with ALS and can assist you with your home care questions. Contact me at Wendy@ALSPhiladelphia.org to start the discussion.


Gordie Speaks at the Hershey Walk to Defeat ALS
Monday, June 04, 2012


Hi, my name is Gordie Miller. on April 6th, 2006 I received the dreaded diagnosis of ALS. At that time, I thought my life was over, it would just be a matter of time. Usually you are given 3 to 5 years to live after you are diagnosed. Thanks to Dr Simmons and Susan Walsh, I never heard those words. In fact, I remember Susan telling me that they are going to do everything they can to help me live 10 years or more. At the time, those were just hollow words to my ears. but here I am 6 years later, alive and well. Not in the same condition I was before, but doing fairly well never the less.

After the usual feelings of why me, bitterness, anger, and depression, I gradually came to terms with my diagnosis, I decided I was going to make the best of it knowing all to well, what this disease will eventually do to my body. I have a wonderful family, friends, church, and co- workers that I used to work with, that love me and support me. Every Tuesday evening, 3 or 4 guys come to the house to hang out with me for a few hours. We laugh, have some heart to heart conversations, and they do some work around the house as needed. Oh, and we eat. Well, I don't eat, I just sit there and drool watching them eat.

When I was diagnosed, I could walk with a cane, eat solid foods, and speak. A few months later, I graduated to a walker due to falling a lot. By Christmas of that year, I was in my wheelchair. That was a devastating moment in my life. Gradually I noticed my speech begin to slur and eating solid food was becoming difficult. Now I can't speak or eat. I can no longer move my legs on my own, have limited use of my arm and hands, and my fingers don't work. There is very little I can do on my own. I use my iPad for communicating using an app called prologue 2 go.

I now require help with every aspect of my care. I need help with bathing, dressing, and personal hygiene. I get my nutrition through a tube connected to my stomach. I'm fortunate to have great caregivers that provide and understand the kind of care I need. I'm blessed to have so much support from family, friends, caregivers, and a church, which make this life with ALS bearable.

I'm living life one day at a time and trying to enjoy each new day I'm blessed with. Thanks to everyone that came out today to show your support. God bless you all!


Gordie

Want to blog because you can?

Contact Tony Heyl at
(215) 643-5434 or tony@alsphiladelphia.org


 

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