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Jorge's Story Inspires a Community
Wednesday, February 22, 2012

Hello my name is Rosalba Snyder.  My family and friends are supporting team “Jorge’s Orange Tree” which represents my dad’s orange tree that would spend the summer months outside his home, and then be taken in when the weather turned cold. It became a ritual that was repeated for many years until he decided to take it with him to Florida and plant it beside his home there. The following year it produced fruit for the first time.

Jorge, the inspiration for the Bloomsburg, Jorge's Walk to Defeat ALS  Jorge Climbing

My dad lived a wonderful life, as he would say.  He loved telling the same stories over & over again.  But, every time he told one of his stories, it was like the first time.  He would make us laugh every time especially when the story was about his heavy Spanish accent.  He was born and raised in Argentina.  He loved his summer home in Tioga County & his winter home in Davenport, Florida.  He loved playing shuffle board, camping, walking the Disney parks & enjoying life with my mom.

In 2008 he started experiencing atrophy on his left hand. He had several tests done including a nerve test that showed no abnormalities.   He started sweating a lot which was very unusual.  He fell a couple of times & started losing a lot of weight.  He continued to have tests done until he was diagnosed with ALS in April 2009.  This was devastating news.  Feeling desperate, I immediately spent many hours’ day in and day out searching for the impossible.  Helping my dad through the process of this terrible disease was all we could do.  He passed away nine months later at the age of 65, as a result of ALS.  Jorge Alejandro Rodriguez, Sr. (1944–2010)

It is very hard for us to know that there is no cure, no known reason as to why or how anyone can get this terrible disease.  It doesn’t just affect Americans but anyone from anywhere.  My dad’s life was cut too short because of ALS.  I decided to do a walk for The ALS Association because of the support we received.  In our first year, the annual Bloomsburg, Jorge’s Walk to Defeat ALS® brought over 375 walkers and it was amazing.  We were all there for the same reason, to raise awareness and help find a cure.  But, it was also the one day we were able to tell our stories, share our pain and know that we are not alone.  

From that walk, we all realized that there were so many people eager to tell their stories. The walk may take place on one day, but people spend months planning, preparing, and fundraising to make it a success.  Every time someone takes the time to tell their ALS story, it helps increase awareness and get us one step closer to a cure.

Just as important as who tells their story is who we tell them to, as we found out by becoming ALS Advocates.  This February, along with my allies and friends Florence Brady, Mandy Podehl and Jen LaRegina, I visited State Representative Dave Millard.  He took the time to listen to how ALS has affected our lives and promised to take our stories to Harrisburg, where more and more legislators are learning about this disease, and even said he would give his support to our Walk. We have a new friend in the fight against ALS because we told our stories. 

Representative David Millard met with Rosa Snyder, Jen LaRegina, Mandy Podehl, and Florence Brady

Every dollar raised, every step walked, every story told gets us one step closer to defeating ALS. If you are in Northeast Pennsylvania, I hope you will join us on May 19th. If you are not, I hope you sign up for a Walk to Defeat ALS® near you. Then take the next step and become an ALS Advocate where you can take part in national and state Advocacy Days in May. Trust me, your effort makes a tremendous difference. Make your voice heard today!


I can't walk, but I'm still kicking.
Wednesday, February 15, 2012

By Paul Wensel, a person with ALS

Paul Wensel, a person with ALS and a life long Philadelphia sports fan.

I was born and raised in North Wales PA, in the northwestern suburbs of Philadelphia.  I went to college in PA and spent the next 30 years managing restaurants in the Philly area.  I married the girl of my dreams when I was 29, and we eventually became proud parents of 2 healthy sons.  As the years passed, we bought a house in my hometown, on the same street that my Mom and my Grand Dad were raised.  Life went on, the boys were growing up, and all was right with the world.

In November, 2010, the restaurant that I was managing abruptly closed.  I had turned 50 years old three months earlier, and I had no job for the first time since I was 13.  We had a son in Community College, hoping to go culinary school. Our other son was a junior in high school, and was hoping to go to college, too. 

Five weeks after being laid off, I was diagnosed with ALS. 

I had heard of ALS before.  I was a 1st baseman, who wore #4 when I was younger, so I knew Lou Gehrig's story.  What I didn't know was that in the nearly 3/4 of a century since Gehrig's diagnosis, medical science had no cure for the disease.  Only small strides in delaying the effects of ALS had been made, and researchers still didn't even know what caused it.  One thing that they had found is that military personnel have a higher incidence of ALS, but that didn't include me.  

I had no job, no retirement funds set aside, and limited health insurance coverage.  Nobody plans to be unable to work at the age of 50, especially if they had no health issues before.  Hell, I still have a full head of hair, with only my beard showing signs of gray!  I can't be dying.  My doctor sent in a social worker to explain some options, but Disability/Social Security doesn't amount to much when you start collecting it 17 years early.

That was 2 weeks before Christmas last year.  I felt perfectly fine, except I was walking with a slight limp and I had little twitches in my legs. 

By Easter, I was laboring to get up stairs and I could no longer take evening walks with my wife, without taking a break.   

By Memorial Day, I needed a cane to get around.  Getting up our stairs, inside our house, was becoming increasingly difficult.  Our neighbor's father passed away and they generously donated his stair-glide to me.  To get up the 4 steps to our front porch, I had to take one step at a time, and that was getting shaky.  Evening walks were no longer possible with my wife. 

Two weeks later, I went to my first ALS Clinic at Pennsylvania Hospital, which is supported by The ALS Association Greater Philadelphia Chapter.  Without their help, I don't know how I would have dealt with my situation.  Through their loaner program, they lent me a travel wheelchair.  That allowed my wife and I to take our evening walks again.  They also took care of ramping, from our front door to the sidewalk, which allowed me to leave my house safely.  There was no way that I could've afforded these things, and still paid my monthly mortgage.  

By Labor Day, I was having increasing difficulties getting around in the bathroom.  I had a small shower stool to sit on while taking a shower, but I had fallen twice getting out of our combination bathtub/shower.  During my next quarterly visit to the ALS Clinic, that disturbed them greatly.  They immediately arranged to lend me a transfer bench, to make showering safer.  They also lent me a more permanent type of wheelchair, to make our evening walks safer, too. 

At Thanksgiving, friends and family got together to retro-fit our shower.  They eliminated the tub, but I still couldn't transfer to the shower bench without someone else's help. During my recent quarterly visit to the ALS Clinic, they arranged to lend me a shower wheelchair.  I can now shower by myself again.  I've been able to retain a bit of my dignity and independence, at least for a little while longer. 

Christmas this year was spent in a wheelchair.  ONE YEAR. 12 MONTHS.  Perfectly healthy to wheelchair bound.  Walking is not an option anymore and standing up is becoming more and more difficult.  The twitches have moved from my legs to my right hand.  It's getting harder for me to propel myself in my wheelchair and signing my name is becoming problematic.

Paul using his power wheelchair.

The ALS Association Greater Philadelphia Chapter, and the ALS Clinic which they support, have made a huge impact in the quality of my life.  In addition to their loaner program, they have helped me navigate my insurance benefits. They have made sure that I won't be denied things that I'm eligible for, or pay for things I shouldn't.  They've connected me with government agencies that can assist me, which I wouldn't have known existed.  My wife has attended a few seminars that they conduct for ALS caregivers, which she says have been very helpful.  These services are not what is normally available from regular doctor offices and unfortunately it costs money. 

It's also comforting for me to know that someone is just a phone call away, who can help me through this trying times. They have experience from dealing with other ALS sufferers in similar situations.  Because there is no treatment or cure for ALS, the only thing to do for us is to make us as comfortable as possible, for as long as possible.  Groups like The Greater Philadelphia Chapter are vital in retaining a quality of life for someone like myself, who is diagnosed with this debilitating disease. 

I understand that there won't be any golden years for my wife of 21 years & I.  We won't be growing old together.  I'm resigned to the fact that I will never meet the grandchildren that my 18 & 21 year old boys, might someday have.  I realize that I won't be able to assist my children in paying for a college education or purchasing their first home.  I also understand that I'm going to be totally reliant on other people, throughout the rest of my abbreviated life.  What I don't want to accept, is that other people will have to suffer the same trials and tribulations that I've been facing, because science hasn't found a treatment for ALS. 

Celebrities and musicians have galvanized support and raised funds for AIDS research, over the past two decades.  Many of them had friends who had suffered through that newly-found disease.  Consequently, great strides have been made towards curing the once-thought incurable AIDS, in a relatively short period of time.  A cure hasn't been found yet, but treatments have extended the life expectancy of HIV-diagnosed patients. 

Athletes and celebs have raised awareness of various cancers, through the pink-ribbon and LIVESTRONG campaigns, among others.  They've succeeded at increasing funding for a cure for cancer.  Medical research has made great strides in cancer treatment and some cancers are now curable.  A diagnosis of cancer is no longer necessarily a death sentence.  Cancer advocates are able to get testimonials from cancer survivors and recovering patients, as evidence of the progress being made. 

ALS advocates can't show recovering ALS patients or survivors, because there are none.  There is no treatment.  There is no recovery.  There is no cure.  The cause of the disease has never even been identified.  ALS was one of the first diseases associated with a famous person, yet life expectancy has not  expanded from the 2-5 years that it was nearly 3/4 of a century ago, when Lou Gehrig was first diagnosed.  Recent discoveries have increased hope that the cause of the disease can be identified, which could make it easier to discover a treatment or possibly find a cure someday.  We need you to be an advocate.  

Funding for ALS research and patient services is essential at this critical juncture to assist current and future ALS sufferers, to live their lives as comfortably as possible.  

Monies given to The ALS Association Greater Philadelphia Chapter have made a direct impact on the quality of my life. Without the funding or their dedicated, caring staff, I would have been bedroom-riddened or even homeless.  I cannot express my appreciation enough, to all the people involved with The ALS Association Greater Philadelphia Chapter.  Through covering all the bases with critical patient services, research for a cause and a cure, and national and state advocacy, these people are making a difference in people's lives.  Any assistance will be greatly appreciated.

Now it's time to make your voice heard. Please join me in being an ALS Advocate.

Battling ALS Every Day.  I can't walk, but I'm still kicking!

Paul Wensel    


My Mom Could Give up On ALS Anytime, Luckily She Won’t
Monday, February 13, 2012

My Name is Jennifer LaRegina, and I am blessed to be a nurse in Northeastern, Central Pennsylvania area for The ALS Association, Greater Philadelphia Chapter.  Over the past few years I have had the honor to meet many amazing people, have heard many amazing stories.   These families deal with situations no one ever expects they will even need to think about in their whole lifetime.  They handle things with so much love and strength, it is absolutely  beyond words.   I have so much respect for each and every family living with ALS.

We have worked closely with a particular family in Pleasant Mount, PA.  For those of you who aren’t familiar with that area, as the family states, it is definitely in the “Boonies.”  They are a beautiful family of 6; mom Roseanne, dad William and 4 kids-Nicole 17, Billy 15, Vincent  13 and Angelina 8.  They do the things that most families do every day, including work, school, activities, life.  There is one big difference for Roseanne and her family though-Roseanne, at age 40, is living with ALS.

Nicole's mom Roseanne is living with ALS with the help of her family and community.

I  have had the pleasure of getting to spend a little time with Nicole, Roseanne’s oldest daughter.  Truly  an inspiration!  Nicole noted that her Mom Roseanne “is the strongest person I know.  She is loving and happy even though she has lived with ALS since September 2009. She uses a feeding tube and cannot speak or walk– but, is still upbeat- thanks, I am sure, to The ALS Association Greater Philadelphia Chapter!” 

Nicole explained how her dad needed to continue to work as a plumber and electrician, and how Nicole and her siblings continued to go to school, while her mom was home alone.  Unfortunately, with ALS, Roseanne started to need more help, and got to a place where she could no longer be home alone.  You see, this family has already been through ALS once, as their Grandfather, Roseanne’s dad, passed away from ALS before Roseanne was diagnosed.

Nicole expressed how they applied to the state waiver program to get someone to come in to help Roseanne, but the approval process takes months.  The family could not afford to hire any private help on their own.  We talked to the Mattiello’s regarding the Howard I Abrams In-Home Care Program through our Chapter. This program, through the very generous donations of people like you, along with Jeff Abrams and Margaret Barry who match every dollar donated to the program,  pays  for private help in the home for families just like the Mattiello’s.  Nicole says this program was the “best thing that happened” since her mom was diagnosed with ALS.  She calls their aide provided by this program an “angel!” 

Nicole goes on to say, “I am scared. I am afraid of what’s going to become of my family. But through my mom’s courage, love, and support our family has found its own courage. It means the world to us to have my mom, Roseanne, live in our house because we all love her so much. She is beautiful, kind, smart, outgoing and her personality is awesome.”  Nicole and her family feels without the Chapter’s support with this and many other programs, they would not be able to have their mom at home, right where she belongs!!!!!!

Nicole and her family are a beautiful inspiration to us all!

Nicole now wants to finish school and go into Nursing to give back!


Putting ALS on Ice
Wednesday, February 08, 2012

Carlsons' Rough Riders at the 2011 Seaside Walk to Defeat ALS(R) 

Our walk teams are always looking for cool and creative ways to raise money to fight ALS.  For the Carlson family, there is no cooler way to promote the cause than through ice hockey.

Robert Carlson was diagnosed with ALS in 2003 and passed away in 2004.  Since he was diagnosed, his wife Fran, daughter Michelle, and son Mark have dedicated themselves to finding a cure.  Fran Carlson has led Carlson’s Rough Riders for nine years in the Seaside Board…Walk to Defeat ALS® and she serves on the walk committee, making sure that the Seaside walk improves each and every year.

The sandy beaches of New Jersey are connected to a cold ice rink in Iowa through Robert and Fran’s son Mark, who coaches the Cedar Rapids Rough Riders hockey team.  Since 2008, the Carlson’s have held a jersey auction to raise money for the Seaside walk and to create awareness of Lou Gehrig’s Disease.  The Rough Riders wear special jerseys that are later auctioned off, in addition to a growing number of jerseys from NHL teams. 

The jersey worn by the Cedar Rapids Rough Riders to help fight ALS.

In 2009, Fran designed a jersey with Yankee pin stripes in honor of Lou Gehrig, which the players wore proudly to bring attention to the disease.  Each jersey has Robert Carlson’s initials and the ALS logo on it as a reminder of how personal this fight is for Fran, Michelle, Mark, and their growing community of family and friends.

With their first walk in 2003, the Carlson’s just did donations.  Then they started doing an open house.  Each year, they found new, creative, and unique ways to raise money while showing the personal impact of ALS.  They have become more and more effective at fundraising and creating awareness through their commitment and their ability to extend their message of hope to wider audiences.

Through the work of Fran, Michelle, Mark, and so many others who make the Seaside Walk and all of every Walk to Defeat ALS® such a success, we hope that someday soon we can really put Lou Gehrig’s Disease on ice for good.

To sign up for a Walk to Defeat ALS(R), click here to visit our walk page today! 


ALS Hot Chocolate Frenzy: Calling All Chocolate Lovers!
Monday, February 06, 2012

by Nina Fazenbaker

If you’re a chocolate lover like me, then the ALS Hot Chocolate Event at the Adventure Aquarium in Camden New Jersey is an event for you. Nothing soothes your sweet tooth and demonstrates your sweet side like enjoying a plethora of your favorite chocolate desserts that benefit the ALS Association. The variety of desserts include anywhere from the Gooey Butter Cake from Addie’ Cakes to my personal favorite the Delicious Cookies from Crazy Susan’s Cookies. The Hot Chocolate event not only consists of delicious desserts but also includes live music, massages and mouth-watering hors d'oeuvres that would encompass a relaxing atmosphere. The event even had a silent auction that gave away vast prizes from trips to gift basket giveaways. The ballroom of the event included one of the most popular exhibits in the Adventure Aquarium, the 40 feet shark tunnel.  It was such a surreal experience enjoying my chocolate martini while having a starring contest with the sharks just inches away from me. I was very impressed with the live music, flow of the atmosphere and had a great time with my coworkers and friends. I felt like the four hours spent at this event really made a difference in the fight against this devastating disease, ALS . Visit the event webpage to find out more about the Hot Chocolate event at http://www.alsphiladelphia.org/page.aspx?pid=887. Join The ALS association and me on March 8th at the Adventure Aquarium for a fun meet and greet event supporting a good cause.


A Voice for ALS Patients Everywhere
Thursday, January 26, 2012

Mary's family has always been a source of love and support.

Mary McConaghy can’t speak but what she has to say about living with ALS sure makes you pay attention.

The 66-year-old is quite adept at using the Internet and maximizing communication technologies to ensure that her voice continues to be heard. Mary relies on an electronic voice to speak; her IPad or laptop are never far from her side.

Mary refuses to be defined by ALS. “I’m so grateful for people who support me now, but also still see ME, not just an ALS patient, who still regard me as a contributing member of society and who still value me for what I can give and share with them. I‘m also a determined champion of helping others see ALS patients as real people; my iPad helps -- if I’m ‘with it’ enough to use an iPad, I must be defined by  more than this disease. The iPad has helped so many people see ME, not just ALS.” 

A historian, Mary retired last June from her full-time job creating the website for the University of Pennsylvania’s University Archives, making history and historical documents available online. Since then, she has volunteered to build a web presence for her college class and a group at her church. She also created the ALS Women’s Voice on the ALS Association of Greater Philadelphia’s website. Mary invites women with ALS to read and contribute their own experiences to this continuing series of reflections. The ALS Women’s Voice was inspired in part by Mary’s involvement with the Association’s women's support group. “I have consistently attended this group and find it very helpful. All of us have ALS, so none of us seem odd; and when I see women who are calmly dealing with the ups and downs of ALS much longer than I have, it gives me strength. We listen to each other and laugh together.”

She also counts on the support of other ALS Association services, including the Care Connection program. “My coordinators have done a great job of setting up and maintaining the on-line calendar of tasks and messages,” Mary explains. “So far, the team is providing one meal a week, helping me make phone appointments, and arranging monthly movie and museum outings. My Care Connection friends are helping me plus giving my family a break, and they are committed to being here for us in the long haul.”

Agreeing to be profiled for The Greater Philadelphia Chapter, Mary said, is another way for her to help others. “I want to share my story to help demystify ALS for the world in general, and to connect more with other ALS patients so we can walk this hard journey more together and less alone.” 

Mary is originally from Wisconsin, and came to Philadelphia to attend college -- where she met her husband Richard. They have two sons, Ned, 27, an artist; and Alex, 22, a senior at the University of Vermont Business School. The family has lived in Chestnut Hill since the mid 1970s. 

Mary was diagnosed with the bulbar onset type of ALS in December 2009, after experiencing slurring of speech in the summer of 2008. While she can’t speak, eat or drink, and is gradually feeling weaker and more short of breath, Mary can still walk and use her arms and legs. 

The first months of diagnosis, she said, was the hardest for her and her family. Her message of support for newly diagnosed ALS patients: “It’s a huge shock and it takes a while to find a new equilibrium. I focus on living in the moment, enjoying, doing and giving what I can. I believe each person has different strengths and ways of dealing with crisis. The trick is identifying your strengths and using them to help you in this hard time.”

Humor also helps Mary cope with ALS. She shares a story that happened while she was still working. “A woman called to schedule a termite inspection at our house. When she couldn’t understand me, she became worried and kept asking if I was OK, if there was someone with me, if there was something she could do to help. I was worried that she would call 911, and have the rescue squad show up where I work, but I was also laughing so hard I couldn’t breathe. Thank heavens the woman managed to reach my husband, and was reassured there was no need for alarm. Once she knew why I couldn’t speak, but that I could still laugh, she felt better about dealing with me.” 

ALS isn’t the first disease to impact Mary’s family – her older son had leukemia as a child and went through more than 7 years of treatment. “I learned to accept that I could not fix things, and that the most important thing was for none of us to walk the hard journey alone, to be there for each other, to be thankful for friends and family, and the medical staff who walked along with us,” Mary explained. “I reassessed what was really important and learned to live day by day, finding good wherever it appeared. I learned that the essential parts of us would survive, that it would be OK even though I could not grasp how or why.”

Mary hasn’t let ALS slow down her zest for life and giving to others. She is definitely a “glass is half full” type of person – Mary continues to count the blessings that she still has. “It is disconcerting to know how you are likely to die,” she says, “but I’m not dead yet. I made a choice that during the time left, I don’t want to waste time on wishful thinking or bitterness. Instead, I want to be honest about what’s happening physically and then move on to what I can still do. The blessing, ‘Life is short, and we have so little time to gladden the hearts of those who journey along with us’ has a whole new meaning to me.”
 

Mary created a fundraising page for her team’s efforts as part of the Walk to Defeat ALS. She was amazed that friends donated over $11,000 -- more than twice what she had initially hoped.

Mary created a fundraising page for her team’s efforts as part of the Walk to Defeat ALS. She was amazed that friends donated over $11,000 -- more than twice what she had initially hoped. 

Perhaps the statement that best sums of Mary’s determination to enjoy life can be found on a Fall 2010 posting on the ALS Women’s Voice site: “I will not let the diagnosis of ALS prevent me from living; on the contrary, because of the diagnosis, each day I want to recognize life as it is for me and to make the most of what I have. I want to fully live each moment, contributing as much as possible and savoring each moment.”

Thank you to Miryam S. Roddy for contributing this profile of Mary. Miryam lost her father Jay Strassberg to ALS at age 60 and she continues to give back by volunteering for The ALS Association Greater Philadelphia Chapter.


Keep Your Face to the Sun
Tuesday, December 06, 2011

Guest Blog by Jen Dungee

Keep your face to the sun and you will not see the shadow.  It’s what sunflowers do.  My mom was diagnosed with ALS about 4 years ago.  I remember when the doctors first told us the news.  That day everything changed, not just for my mom, but for my entire family and many beloved friends.  Our lives were all changed that day.  We felt hopeless.  We melted into sadness together and looked at each other with disbelief.  The doctors explained that they were going to give my mom six months to a year to survive, but a year came and went and she was still there.  The next year came and my mom was still fighting to be with us.  That’s when we all started to realize that we still had a chance and that maybe there was something that could be done.  We became hopeful. 

Jen Dungee with friends and family helping to support her mom Sharon Vanderslice, who is living with ALS.

As time went by our family was grateful to receive assistance from The ALS Association Greater Philadelphia Chapter, which allowed us to provide my mom with the equipment she needed to be taken care of safely.  My mom was also lucky enough to have insurance which helped us to get her most of the other things she needed, like a hospital bed.  There came a time when there were other things that were needed for safety that couldn’t be covered by insurance.  Our family needed to have a ramp installed in our house to allow for the safest transport into our house.  The Greater Philadelphia Chapter was always there to lend a helping hand, but we still had expenses to cover some additional costs for the ramp as well as a pool chair that we could use to allow my mom to continue to go in the pool as she used to enjoy for many years before.

 My family eventually decided to have a benefit to raise the $6000 we needed to cover expenses for my mom.  At first it seemed that $6000 was a high goal to set, but if our mother wasn’t going to give up on this fight then neither would we.  We put our heads together and came up with an idea of having a basket raffle as the main fundraiser for this event.  We sent out letters to the community and also to the school district where our mother worked for over 25 years.  One day I sat down to write the invitation to the benefit and I saw on the ALS website that the new official symbol of ALS was the sunflower.  The sunflower is coincidently my mom’s favorite flower.  So we centered the decorations on a sunflower theme.  We built a committee to organize the event which included a few close friends and family members.  On the day of the event, no one could have ever imagined the love that would be felt that day.  We were overwhelmed with 24 beautiful baskets for the raffles and many donations just from friends who could not attend.  My family and I wore t-shirts that we made to honor my mom and we each had jobs that we carried out throughout the night.  It ended like a dream with a total of $6000 raised to help my mom to pay for what she needs.  And I don’t think I’ve ever been more inspired in my entire life.  And to think, it all started with just a thought of a sunflower on a beautiful summer day.  From now on, whenever I see a sunflower, I’ll think of strength, I’ll think of hope, and my mom’s fight. 

Organizing an event can seem so daunting, but in the end, it is more rewarding than words can say.  The Greater Philadelphia Chapter helps people organize third party events year-round, with money directed towards patient services, research, and assistive technology that helps people living with ALS.  I hope others will sign up to host events as well.  You’ll be so happy you did. 

If you want to know how you can put together an event, email Rebecca Telthorster at Rebecca@alsphiladelphia.org today.  I hope I can read your story soon!


Want to blog because you can?

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


 
 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.