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If we can't use our legs, we'll use our voice
Thursday, May 24, 2012

With Pam Learned and Steve West

Steve West and Pam Learned at the 2011 Greater Philadelphia Walk to Defeat ALS. 

I'm writing to say that I'm interested in helping with Advocacy Days, but am unsure how.

We are not able to travel to DC. However, we can share our story.

To share the story of ALS and my husband, Steve West, who was diagnosed in March 2009, means so many things, that I'm not sure how to focus in a way that helps ALS patients get the help they need from government. 

For example, I could talk about the economic impact on the 5 people my small business employed when I had to close the business to care for Steve fulltime (see more below). 

I could write about our frustrations with our private Aetna Insurance, which will not cover adequate medical equipment to assure Steve's mobility while he was still working. 

  • Even when he fell out of the "approved" mechanical lift weekly for 5-6 months under trained transfer home health aides, they would not pay even the difference in price between a hand Hoyer patient lift and an electric lift. I could not speak with an informed representative despite weekly attempts for 6 weeks in 2011. 
  • When Steve submitted for a power wheelchair, our share through Aetna was going to be $22,000 (after Aetna paid its approved portion of its approved price), but if we paid out  of pocket and didn't have to wait the months for approval from Aetna, our price was $16,800. No, I did not reverse those numbers. The price without insurance was $4,000 LESS. 
  • A rolling shower chair, essential for his skin health, is also not covered--at all. Apparently sponge baths would be ok for how many months/years? 

At issue here was that, while Steve was still covered under his work insurance plan, the incentive for him to quit work and quit paying insurance premiums was very high because of the poor level of coverage for this disease. I believe a similar story can be put together on what Medicare covers, particularly on the patient lift expenses. However, medically, he was able to work nearly 3 years from diagnosis, contributing to our government's economy, in numerous ways. 

There are many frustrations like this living with ALS, however, I can't close this note without saying that The ALS Association Greater Philadelphia Chapter has been essential to our otherwise positive outlook and Steve's lack of pain despite being mostly paralyzed at this point. 

We have enjoyed social events, counseling, a volunteer, a respite retreat for me, the Howard I. Abrams In-Home Care Program, loaner closet items, and fast response to virtually any type of question we've had. The integration with the ALS Clinic is so seamless, that I'm just now learning who works for whom! I'm  stunned by how much The ALS Association does for us and others. I'm certain no other big-name organization does all this in such an effective way. 

We may not be able to help with legs in Harrisburg or Washington, but we can still use our voices as advocates for patients and families in Pennsylvania and across the country. We can, however, use our legs, and the legs of so many friends, to raise money and awareness through the Greater Philadelphia Walk to Defeat ALS.

Every story makes a difference. Every dollar helps another family facing this disease. Every voice makes more people aware of how important it is to bring help for today and hope for tomorrow for every family touched by ALS.

Join us in making your voice heard.

Sincerely, Pam Learned 




Patient Services Update: In Home Care
Thursday, May 10, 2012

 

By Shelley Hill, MSW, LCSW

At some point in your journey with ALS, you may require additional help with bathing and dressing beyond what your caregiver can provide. There are a variety of state and federally funded in home care programs in PA that can provide this type of care depending on your age and care needs. This type of care is not covered by Medicare, Medical Assistance or private medical insurance. These insurances may cover short term home health aide services when a skilled service such as nursing or physical therapy is provided and when medically appropriate and considered to be home bound. So it is best to pursue options that will serve your long term needs. In home care services usually include bathing, mobility, dressing, grooming, toileting, feeding, meal preparation, range of motion exercises and light housekeeping. It is important to explore options for in home care as early as possible given that the referral process may take several weeks or months and may also have a waiting list. Begin talking honestly about the help you as the patient need and you as the caregiver can realistically provide.

In home care options for those under 60 

PA Attendant Care Waiver/Act 150 Program- helps PA residents with a permanent physical disability between the ages of 18 and 59, continue to live in their home and community with support and services. Those applying must be able to direct their own care.

To qualify for the Attendant care waiver program, one must meet the requirements for nursing home level of care and the financial requirements as determined by your local county assistance office.

If these requirements aren’t met, then the applicant is determined eligible for the Act 150 attendant care program and is placed on a waiting list. This is a slow process that is taking many months.  A minimal co-payment may be assessed for services. This is based on your income and will not be more than the total costs of services.

Both programs offer in home care services based on the level of care needed and a personal emergency response system.

Independence Waiver- helps PA residents with a severe physical disability between the ages of 18 and 59, live or remain in the community with the goal of being as independent as possible. This includes those who are ventilator dependent or in the community but who have been assessed to require services at the nursing home level of care.

To begin the eligibility/enrollment process for the attendant care or independence waiver programs, please contact the PA Independent Enrollment Broker @ Toll free helpline: 877-550-4227.

In Home Care For Those Over 60 

PA Area Agency on Aging Services- offer Home and Community based servicessuch as home health care; personal care (help with bathing and dressing); respite care; household chores and home-delivered meals. Program options include the Options program, attendant care, family caregiver support program which is a reimbursement program and the PDA waiver program. The PDA waiver program provides in-home services to those who have increased medical needs but would like to be cared for at home. Adult day care centers can also provide a supportive care environment for caregivers who are unable to provide day time care.  All programs have varying eligibility criteria. Referrals should be made to your county Area Agency of Aging. To find your local office, go to: http://www.aging.state.pa.us/portal/server.pt/community/your_local_resources/17952.  It can take several weeks to several months to determine financial eligibility and to begin services depending on the program.

For Veterans

VA Home Health Aide Program

This program offers veterans assistance with activities of daily living such as bathing and dressing or instrumental activities of daily living such as meal preparation and taking medicines.  Care is provided in the veteran’s home by a Homemaker or Home Health Aide and is monitored by a registered nurse who helps assess the Veteran’s daily living needs. Each VA Medical Center determines the amount of care available to each veteran ranging from 2 to 12 hours/wk. These services can be used to help veterans remain at home by offering ongoing personal and respite care. Eligibility is based on clinical need and service availability. Certain VA Medical centers are now providing a 24/7 care program to qualified veterans receiving home health aide services which can provide a live in caregiver or up to 24 hrs/dy of care in the home.

These are the programs provided through government assistance in the state of Pennsylvania, but The ALS Association Greater Philadelphia Chapter is committed to doing all we can to assist patients and families with the Howard Abrams In-Home Care Program. This program, based on generous support from the Abrams family, is an example of our associations efforts to cover all the bases in attending to patient needs.

Click here to learn more about the Howard I. Abrams In-Home Care Program. Your support helps many families in Pennsylvania, New Jersey and Delaware.


Be Loud, Be Heard, Be an ALS Advocate
Wednesday, April 25, 2012

 

By Jodi O'Donnell-Ames

Kevin O'Donnell and his familyKevin and Alina

ALS can take away many things- the ability to walk, the ability to eat, and sometimes the ability to talk. But ALS cannot take away the power of VOICE. May means another National ALS Advocacy Day in Washington, D.C. and the opportunity to voice concerns as advocates for ALS patients. It’s a time to maintain years of progress, to evaluate how the government can further help patients battling ALS and to hopefully, ask and receive. Since there is currently no cure for ALS, patients are demanding, at the very least, early access to drug treatments and additional funding for ALS research. Doesn’t sound like a monumental request when facing a terminal illness and time is of essence!

If you have never participated in such an event, I implore you to take a stand and take action.

I have advocated in Washington before and I’m doing it again this May.

My personal concerns brought me to D.C. (for the first time as an advocate) on two occasions in 1995. The first time was for National ALS Advocacy Day. The second time was to attend the F.D.A Rilutek hearing. Both times, I was present as a wife, mother and concerned citizen. At the time, my young husband Kevin was battling ALS. He was diagnosed at the age of thirty. We, and our toddler daughter Alina, attended the Rilutek hearing as a young family united in hope. At the time, there were no drugs approved specifically for ALS.

All five feet of me addressed the panel:

“Rilutek was proven to extend the life expectancy in patients for three months, but those three months might mean the world to a patient. Perhaps they allow the attendance of a special wedding, the witness of a new birth, or the celebration of a silver anniversary. Whatever they grant, they were well earned and needed.”

I stood in front of scientists and professionals, armed only with my love for my husband and the desire to keep him in my life as long as possible. So, I continued.

“As patient as we may be, ALS waits for nothing. It is relentless; it rapes its victims of their physical capabilities yet leaves the intellect fully conscious to observe the body’s decline. And sometimes, it does that as rapidly as one year. I understand it is the FDA’s responsibility to fully test experimental drugs, however, the present system in not working quickly enough. The clinical drug trials available are wonderful, but leave those who do not quality despondent.”

The use of Riluzole for ALS patients passed that day, 4 to 3 at the FDA hearing. It just passed, but it PASSED. Today it is still the only FDA approved drug specifically for ALS. Never underestimate your power to create change by using your voice and exercising Democracy.

Kevin holding his daughter


You are your best advocate, so be loud and be heard.

If you can’t make it to D.C this year, you can advocate from afar. Start writing! Write to your state’s Congressional leaders and legislators and ask for their support of the MODDERN CURES ACT: (http://www.puttingpatientsfirst.net/moddern)

“More than 133 million Americans – over 40% of the U.S. population – live with a long-term disease or disability. But for some people there are no treatments and there are no cures. Most treatments that do exist work only for 50 to 75 percent of the patients who currently use them. Only 1% of marketed drugs have a companion diagnostic test to determine which patients would benefit from a specific treatment.”

Request additional funding for the National ALS Registry as well! The registry is pertinent to understanding all aspects of ALS and what connects patients with ALS (PALS) across the country. This collection of patient data could be instrumental in solving the mystery of ALS and securing a cure.

Another important objective in the road to a cure is the ALS Research Program (ALSRP) at the Department of Defense. However, that funding is being threatened and the government is proposing to reduce that budget by millions of dollars.

Please write to save ALSRP!

The ALS Association has provided a sample letter, which can be personalized and send directly to elected officials in Washington. Go to the Advocacy Action Center of their website, http://capwiz.com/alsa/home and start the writing process today!

Although advocating can be intimidating at first, know that it’s your right in the fight against ALS and that if we don’t ask for change, we’ll never receive it!




Patient Services Resource: Secretion Management in ALS
Friday, April 20, 2012

 

Our Patient Services staff help us Cover All the Bases by providing compassionate care and support to people with ALS. Every day they interact with ALS patients and families to help them live with Lou Gehrig's Disease.

Secretion Management in ALS

By Sue Walsh, RN, MSN, CS

Definition of Problem and symptoms

Some patients with ALS experience problems with excessive oral secretions or experience thick phlegm that they cannot cough up.  Excessive secretions are experienced when the weakened muscles of the mouth, tongue and throat are not able to swallow the normal oral secretions.  Secretions may pool in the mouth and cause drooling, or may collect in the back of the throat where they may cause choking or aspiration into the lungs, increasing the risk of pneumonia.  Controlling the secretions is important to decrease the chance of respiratory complications.  

Drying Secretions

Medications commonly prescribed to decrease saliva production include amitriptyline (Elavil®) and other tricyclic antidepressants, glycopyrrolate (Robinul®), and scopolamine (Transderm Scop®) patches. Possible side effects of these medications include dry mouth, constipation, and urinary hesitancy.  Less common side effects are sedation and confusion.  Atropine drop in the mouth may be helpful in some cases.  Botulinum toxin (Botox®) is often prescribed if the medications noted above are ineffective. Botulinum toxin is injected by a physician directly into the parotid and submandibular glands, where the saliva is made, causing a decrease in saliva production. It often takes 1-2 weeks for maximum effectiveness, and if it is successful, the effects usually last up to 12 weeks. For sleeping difficulties due to the build-up of saliva, try elevating the head of the bed with pillows or by placing a bed wedge under the mattress.

There are times when a person with ALS may develop excessive nasal secretions that drip and cause build up in the back of the throat. You can first try over the counter anti-histamines such as Claritin® or Allegra®. If these don’t work, then we advise that you contact your primary care physician for a prescription form of an antihistamine. There are some that are available in liquid form, such as levocetirizine (Xyzal®) which may be effective for nasal congestion.

Thinning Secretions

Thick secretions are caused by several factors 1) drying of secretions with medications; 2) low airflow as a person’s breathing capacity declines 3) loss of diaphragm muscle strength which diminishes the ability to cough.  Management of these “thick secretions caught in the back of the throat” often requires several approaches in combination:

  • Make sure you are adequately hydrated
  • Guaifenesin (which is contained in Robitussin Chest Congestion® or Mucinex®) can be taken orally or (if in liquid form) given through a feeding tube. Robitussin is taken as 1-2 teaspoons every 4 hours.  Mucinex is a 600 mg pill, taken twice a day.  You can check with your pharmacist to see if he can order large quantities of Guaifenesin that may be less expensive than smaller purchases.  The recommended dose is 400mg every four hours.  If prescribed as liquid, this usually is 4 teaspoons every 4 hours.
  • Other medications that break up thick secretions are Albuterol, Mucomyst or DuoNeb. These medications are administered via a nebulizer, a machine that changes the liquid medication into a mist, which is then inhaled via a mask. These nebulized treatments can be taken up to four times a day and should be performed on a routine basis to prevent build up of secretions in the back of the throat or lungs. The nebulizer machine will be provided by a respiratory therapy company. Some of the companies supply the medicine that is added to the machine or it may need to be prescribed by your doctor to the pharmacy of your choice.. 
  • A suction machine is used to remove secretions by inserting the catheter into the mouth.

Mobilizing Secretions

The respiratory therapist or nurses can help you and your family learn how to perform an augmented manual cough with a bag or with abdominal pressure.  Following a nebulizer treatment, a mechanical insufflator-exsufflator (CoughAssist®) device can help the person cough up the secretions. The insufflator-exsufflator machine produces a pressure that helps the person with weakened muscles produce a stronger, more effective cough. 

If you still have problems with thick secretions after combining all these approaches a high-frequency chest wall oscillation (VEST®) device may be considered.

To learn more about our ALS clinics and how we help ALS patients, visit our Patient Services page. 

For more questions on this topic, you can email Sue Walsh at Sue@alsphiladelphia.org


A Life That Touches So Many
Tuesday, April 17, 2012

 

Nancy Trembley and her daughters

Our mother has always been one to lead by example.  She took on the role of raising three daughters with the vigor and dedication with which she has faced every important challenge.  She taught us the values of independence and education when she returned to college to earn her Bachelor’s Degree in Biology while her three children were in high school, junior high and elementary school, respectively.  She went on to earn two Master’s degrees, one in Biology and one in School Counseling, while working full-time and being a mom.  Never complaining that she was too busy to come to a lacrosse game or listen to a heart-broken teenager, she was recognized as the mom in our neighborhood that our friends could come to for questions about anything from boyfriends to biology. 

From her days as an anti-war Navy wife (!), to her stint on the Jenkintown School Board, she has always gotten involved in issues that she felt were important.  She is strong-willed and quite eloquent, so arguing with her is usually a worthless endeavor. Her career as a scientist helping to develop and test pharmaceuticals allowed her to help others live longer. Later, in her ‘retirement,’ she took on a new job helping women who had been victims of domestic violence find safe and affordable housing. Always an advocate, always touching the hearts of others. 

Her strong will is certainly going to be important in this next stage of her life.  Being diagnosed with ALS in September 2011 was devastating to the entire family and to everyone who knows our mother.  Her bulbar-onset ALS affects the muscles that control breathing, swallowing and speaking.  The care that she has received since her diagnosis has been stellar. Her entire medical team at the Pennsylvania Hospital ALS clinic has helped our family to navigate a journey that is completely new and scary for all of us.  From building ramps to providing a motorized wheelchair to helping to navigate the health insurance maze, our entire family has benefitted from the knowledge and care that The ALS Association Greater Philadelphia Chapter and the ALS Clinic have shown us. 

Though our mother may lose her speech, she will not lose her voice. Our entire family will dedicate ourselves to advocating for families who have been affected by this devastating disease.  Our advocacy efforts will include petitioning to increase support for research efforts, lowering the cost of pharmaceuticals and supporting organizations like The ALS Association Greater Philadelphia Chapter so that they may continue to support those living with this disease.  If our mother has taught us anything, it is the idea that a few small voices can become heard when they join with others.  We hope that our support of The ALS Association will help others become aware of the this disease and help join in the advocacy that will eventually bring less expensive medical costs and increased support.

Sincerely Yours,

Kathryn Smith, Kristie Crumley, Amanda Strine & Families - Collegeville


A Sister's Love
Tuesday, April 10, 2012

 

By Mandy Podehl

Mandy and her brother Dustin at his college graduation. Dustin would pass away from ALS just a few years later at the age of 26.

In the spring of 2007, my younger brother Dustin proudly graduated from Bloomsburg University with a Bachelors in Communications.  He was the first member of our family of seven to graduate from college.  It was one of the proudest moments in all of our lives.  He was going to conquer to world after that day.   Sadly we lost Dustin three years later to the horrific disease of ALS.  He was 26.

My brother was a star in our family.  He was athletic and was named MVP of his high school football team.  He was an excellent baseball player and enjoyed playing almost any sport.  Dustin was also very musical.  He played guitar and sang in a praise band.  He was very active in our church.  He lead worship services with his music and was the youngest person to ever be nominated as Deacon.

In 2008 Dustin was truly starting his adult life.  He was living in his first apartment, thriving in his new job and overall enjoying his life.  That fall he noticed at the gym that his left arm would drag behind the right while lifting above his head.  He shrugged it off as an injury and decided to let it rest.  A few months later the problem was getting worse and he consulted his primary care doctor who referred him to a neurologist.  His neurologist referred him to University of Pennsylvania Hospital in Philadelphia and told him there was a possibility this was ALS. 

At this point Dustin had lost almost complete function of his left arm.  It hung at his side as if dead from the rest of his body.  The muscles had completely atrophied to nothing.  He could no longer play sports, strum his guitar, or use it in any meaningful way.  Because of his age and that the disease seemed to only be in his one arm, the doctors at University of Pennsylvania were hesitant to diagnosis him with anything.  At that time they referred us to Johns Hopkins in Baltimore, Maryland.  During the time we were waiting to go to Hopkins, Dustin’s condition started to worsen.  He was limping and struggling to breathe.  He was put on a bi-pap and could no longer physically go to work.   In December of 2009 it was no surprise when the doctors at Hopkins gave us the devastating diagnosis of ALS.  My 26 year old brother was told he was going to die.

Many people hearing that news would crumble under the gravity of it, but not Dustin.  He stared it down and was determined to fight it.   His intensely strong relationship with God gave him this strength.  We talked often about his faith and how he felt that what was happening to him was not a punishment but rather his journey with God.  He felt this was his “cross to bear” and he had made up his mind to carry it with courage, strength, faith and humility.  Later a friend of his told us about a conversation he’d had with Dustin.  The friend asked Dustin if he was mad at God and ever questioned “Why Me?”  Dustin’s response was “Why not me?”   

Less then five months after receiving his diagnosis, Dustin passed away on May 1, 2010.  Hundreds of people came to remember my brother at his funeral and memorial service.  He touched and inspired so many people in his short twenty six years.  I miss him every day. 

The most frustrating part of losing my brother to ALS is how many people know nothing about it.  They have heard of it as Lou Gehrig’s disease but few know what it truly means.  I want to help change that.  I want everyone to know about this disease like they know about cancer.  I want research to give me the answers to why does this particular disease strike down anyone at almost any age,   There are no racial, ethnic, or socioeconomic boundaries to this disease.  Mostly, I want hope for all those suffering right now.  Hope for a real treatment that will give people years not months and hope for a cure.  These are the reasons I have become involved in The Walk to Defeat ALS in Bloomsburg.  I hope that you can join me in my fight.

Dustin Julian Myers 1983-2010

Join Mandy and others from the ALS Community for Pennsylvania ALS Advocacy Day in Harrisburg on May 1. For more details, visit our advocacy page or contact Tony Heyl at Tony@alsphiladelphia.org

The Bloomsburg Walk to Defeat ALS is on May 19. If you are in Northeast PA, please join us. And if not, find a Walk near you and register today!


It Began Like Any Other Day
Monday, March 26, 2012

 

By Mary Ann Wollter

Mary Ann and Gene Wollter. Gene passed away from ALS in 2006.

September 17th 2002 began just like any other day, getting ready for work when our dog Sheba decided to take off and run across a major highway and go into a soybean field after some deer she saw.  My husband Gene of course went after her.  He had recently had back surgery and didn’t move too fast, but said he could do it. 

However, I had to go across the highway to get him because he didn’t seem like he could walk very well and was short of breath.  He had Sheba and he said that he would be OK, but I called my daughter and asked if she could come to the house because I thought something was wrong with her Dad.  She insisted on calling the surgeon who had done Gene's back surgery, but Gene did not want her to call. She did anyway and the doctor said that we should come right away to his office. 

Gene said he would go, but we needed to sit down first as he had something to tell us.  He told us then that he had been diagnosed with ALS in May but did not want to tell us until he took care of some things and also did not want me to know since I was having chemo for Breast Cancer.  Needless to say, this was the worst day of my life and led to be the worst day of our family’s life.  We went to the surgeon's office and he explained to us what to expect and told us that Gene had up to four more years to live since his doctors felt that he had ALS one year prior to the diagnosis.

We were lost, we just did not know what to do, but we did go to Johns Hopkins for another opinion and the diagnosis was the same.   Every six weeks, we went to Johns Hopkins clinic until it was too tiring for Gene to make the trip.  They did put him in one clinical trial, which they finally pulled because there was no indication of the medication helping. At the time and up until one month before Gene passed we were never told of The ALS Association Greater Philadelphia Chapter by the hospitals or doctors.  It was in the end when Gene’s sister learned of The Greater Philadelphia Chapter and by then it was too late. 

We had to get hospice about 2 years into his illness.  He had to fight to get disability SS even though he was terminal, in a wheel chair and had little use of his arms and hands.  They always insisted that he could do something.  Our insurance company was helpful with a wheelchair and bipap machine, but other necessities they refused.  This had to come out of our pocket.  We had been told at a session at Johns Hopkins that a large percentage of familes who had an ALS patient went bankrupt.  This was scary.   We reached out to anything that we thought might help, including a doctor in Pennsylvania who we went to and he diagnosed Gene with Lyme Disease.  These were all cash visits and he was untruthful.  Our hopes went out the window.

Gene started his journey with ALS having to use a BiPap Machine, then the cane, next a walker and finally a wheelchair.

We had a walk in shower installed, a ramp was built, a nebulizer for breathing treatments, hoyer lift, hospital bed, special eating utensils, braces  for his arms and legs, a monitor so I could hear him at night and many many other items.   It seemed like everyday we had to add something.

The ALS Association Greater Philadelphia Chapter provides resources like these for patients living with ALS through the Lea R. Powell ALS Patient Services Program.

Gene wanted to be able to stay home during his illness and thanks to all of the help he and I received from his sisters and their spouses and our two children, their spouses and fantastic friends he stayed in his home.  Gene was a man who prior to his illness was known as the Man with The Christmas Lights.  Each year he worked for a couple of months prior to Dec. 1st  to get thousands of lights up for people to enjoy.  His enjoyment was seeing people stop and look at the lights and take pictures.  He was disappointed when he couldn’t do it anymore, but we still had a few lights up that our grandson put up for his PopPop.  Gene was always working on something, painting saws, repairing things and taking care of the household.  

Gene had a lot of faith and always knew that he would go to Heaven and would see those who had passed before him.  He never asked "Why Me?"  He told me once, that only the good Lord knew that and so be it.  He always had a smile and never ever complained.  He had a great sense of humor and kept it until the end.  Gene was my Hero and the Love of My Life.   I, along with my children, grandchildren, his siblings and friends were very fortunate to have had Gene with us.  We only wish it could have been for longer. 

Gene had a wish that his entire family and friends are trying to help fulfill.   He wanted to find the cause of ALS and a Cure to be found.  He said he knew it would not be in his lifetime, but it would help someone.   As long as there is breath in us we will continue down the road to finding a Cure.   This is the main reason we started the Rehoboth Beach, Delaware Walk to Defeat ALS.  We do this in his memory and in the memory of others who have passed and in honor of those who are still with us. 

WE WALK BECAUSE THEY CANNOT. 

Mary Ann Wollter

Widow of R. Gene Wollter who passed on April 20, 2006


Gary's ALS Story
Tuesday, March 20, 2012

 

I would like to tell you a little bit about myself. My name is Gary Beech. I am 42 years old. I was diagnosed with ALS, also known as Lou Gehrig's disease, three years ago, on Feb 27, 2009. I have 2 children. My son,
Drew, is 21 and my daughter, Breanna, is 16. I have a great support group that includes my family, friends and my best friend and girlfriend, Kim.

Gary Beech and his girlfriend Kim Gallagher at the 2012 Hot Chocolate

When I was diagnosed, I was shocked and very upset. I did not know much about thedisease and my doctor provided me with an overwhelming amount of information. I became a patient at the ALS clinic in Pennsylvania Hospital under the care of Dr. Leo F. McCluskey. I got to know the staff at the ALS clinic very quickly. They are all now very special to me.

In the early stages of my diagnosis, my body was feeling weak but I was able to carry on as usual in all aspects of my life. At first, it wasn’t too bad and I could handle things without relying on others. I was in complete denial in the beginning. I put myself through the rigorous testing of ALS three times, each test more painful and tedious than the last. Each time I would not accept the diagnosis. After three years of denial, I finally came to terms with my illness.

My ALS is progressing very slowly. I feel very lucky since ALS advances quickly with some people and slowly in others. Recently, I have dealt with significant weakening of my muscles. My arms, legs, and face muscles continue to deteriorate. I now have difficulties eating and speaking. There have been many times I have almost choked. Chewing and swallowing has been an issue. While speaking I have noticed pronouncing words is a bit harder and I am more difficult to understand, especially at night when I am tired.

The recent changes with my body have taken a toll on me both mentally and emotionally. Again, I thought I could cope with my disease without bothering anyone or bringing them down with me. I eventually learned, and accepted, I needed help. My emotions were overwhelming and I could no longer handle it alone. I had to find someone to help me sort out the guilt, loneliness, fear and sadness.

I now get through the mental pressures and hard times thanks to my family, friends and assistance I get from the ALS clinic. I also find comfort through the various events put together by the ALS Association. Myself, family and friends have attended the Greater Philadelphia and Ocean City Board...Walk to Defeat ALS. We have also attended two Hot Chocolate events. Attending ALS fundraisers and social gatherings helps me get to know other patients and their families who are in my situation.

Team Beech at the 2011 Ocean City Board...Walk to Defeat ALS

I will continue to fight against this disease with positive and hopeful thoughts. Giving up is not an option. I will never give into this horrific disease with the continuing assistance, support and love from my family and friends. Never give in. Never give up!!!!


The Power of Advocacy
Thursday, March 15, 2012

By Susan Schwartz, ACSW, LSW

Susan Schwartz

The ALS Association’s National Advocacy Day and Public Policy Conference takes place this year Sunday, May 13 through Tuesday May 15 in Washington DC.

PALS, their families and friends as well as ALSA staff from all 50 states attend this three day Conference .  They learn about the goals and process of advocacy, what has been accomplished and what the current and future goals are.  They attend workshops that allow them to better understand the dynamics of funding and research as well as identifying the attributes of a successful meeting “on the Hill.”  Some of the sessions include: Government ALS Research, Congressional Meetings 101 for first timers, Veterans benefits as well as specific sessions on genetics.

As a social worker with the Greater Philadelphia Chapter of the ALS Association I have participated in the National Advocacy events since 1999.  I feel passionately about the power of the collective voices of the PALS and their supporters and have had the enormous pleasure of seeing the concrete results of changes that truly make a difference in the lives of everyone affected by ALS.

The list of specific successes achieved through advocacy include the waiver of the 24 month Medicare waiting period, the service connection classification for veterans with ALS, the increase of ALS research funding from a variety of government source and the creation of a National Registry, but additionally, the benefits of attending and participating in National Advocacy Day provide a personal satisfaction that PALS and families have expressed to me over the yearsWhy should you go?  Here are some thoughts of patients and family members who have attended to consider:

Arlene Gordon writes: “I have gone to DC as an advocate for those PALS who are not able to make the trip.  It is an empowering experience to be there with other PALS and their families and to know that your actions can have a positive impact on finding a cure.”

Mary McConaghy said: “I was empowered by the experience of going with others to the congressional offices to advocate for ALS.  It was fascinating to learn so much about how government works and gratifying to realize that I was having an impact on getting research money for ALS.  And throughout all these activities, I was moved by the kindness and solidarity of the ALS community – patients and their families, medical caregivers and researchers; I heard so many stories and made so many friends.”

Steve Potter shared: “Spending a day moving between the offices on Capitol Hill is an excellent way to get to know more people involved with the fight against ALS.  It is good to know that we are not alone and there are so many people working every day in the effort to find a cure and to treat ALS patients.”

Charlotte and Steve Potter at Advocacy Day

Jayne Cawthern:  “Advocacy doesn’t require skill or a huge time commitment. The only knowledge you need is the personal experience you have had living with the disease.  Advocacy may seem intimidating at first, but once you have faced the diagnosis of ALS, nothing can ever truly frighten you again.”

These Advocates say it best.  The amazing power of seeing representatives from all the chapters across the country and the generous spirit of sharing is ever present.  There is “business” to be done, but there is time made for the informal opportunities to get to know people, share stories and problem solving strategies.  The meetings with congressional staffers are really about your stories…it is the real experiences of PALS and their loved ones that create the support for funding and legislation.  The ALS community welcomes each one of you and hopes you will consider participating in any way you can for National Advocacy Day and the Public Policy Conference.  We are united in our efforts to advocate, find effective treatments and a cure. 

To find out how you can help continue funding for the ALS Registry and the ALS Research Project at the Department of Defense, as well as to enact the MODDERN Cures Act, register online or email Tony Heyl at Tony@alsphiladelphia.org.


Surrounded by Love and Support
Wednesday, March 14, 2012

Many people describe having ALS as being trapped in your own body. While limbs and muscles fail, your mind and spirit are still the same, stuck in a body that will not work.  For Jovita Claudio, her ALS may be attacking her body, but nothing can trap her spirit.

Jovita Claudio

Jovita was born in Delaware, moved to Puerto Rico with her family at the age of three, and then moved back when she was ten and has lived there ever since. She met her husband when they were both kids and have been married for over 18 years. They are blessed with three beautiful children, 17 year old Jose, 14 year old Jonathan, and 12 year old Joshua.

From childhood, Jovita and her husband knew that they would end up together.  Call it fate or God’s plan, but they never had to look far for love. It is a love that Jovita appreciates every day.  Jovita used to go power walking with her husband at dusk. They would spend that time together sharing their dreams and enjoying the world around them.

No doubt, those dreams never included ALS, but they always included each other.

Jovita lives her days with a smile because, even though ALS traps her in her body, she is surrounded by love and support. She credits not only the services of The ALS Association, but also the warmth of Maranatha Church in Newark, Delaware, who provide spiritual coverage and also a caring community that is always available to help.  She is grateful for the women ministry who come to her house to assist with cleaning and cooking and delivering groceries. A sister comes to Jovita’s house to color and cut her hair. Jovita’s church gives her comforting faith and treats her with dignity and respect as a human being so that she can focus on life instead of ALS.

Two years ago, Jovita was diagnosed with ALS. She explains that people don’t understand how hard it is to not have full control of your body. She has had to learn to adjust, physically, emotionally, and spiritually. Now she moves at a much slower pace and she knows that it is hard not just for herself, but also for her caregivers.

Over these two years, Jovita’s family, friends, and church community have done everything they can to better understand her disease so that they can be there for her. Jovita hopes to spread awareness and understanding of ALS to help patients, families and caregivers. She is glad to see so much money and effort going into research and hopes her story will bring more attention to critical patient services in Delaware and beyond.

Jovita and her family, who are always there to support her.

With a smile on her face, Jovita has faith that we can defeat ALS.

When you are surrounded by a loving husband and children and a church community that is there for you, it is impossible to not have faith that a brighter future is possible.

To help people like Jovita and her family, you can donate online or go the extra mile and join a Walk to Defeat ALS near you.


Paula's Story
Wednesday, March 07, 2012

My name is Paula Goldstein and I live in Chester Springs, Pennsylvania. I am 58 years old, married and have three children, Tom, 25, Steve, 24 and Tash, 23.

Paula Goldstein at her home in Pennsylvania

I was officially diagnosed with familial ALS on March 16th, 2010.  I believe I've had it since April of 2008.  For those two years, I was being misdiagnosed with everything from fibromyalgia to Lyme's Disease to rheumatoid arthritis.

My father had ALS in the early 1980's.  It took forever for him to receive a diagnosis.  When he finally did, he lived for only another four months.  At the time, I remembered asking his doctors if the disease was hereditary.  They told me no.  I asked if it was painful.  They told me no.  I asked if it was common in women.  They told me no.

Well, they were wrong.  Having been my father's caregiver, I saw the ALS progress and I have a pretty good idea of what I'll be going through.   ALS doesn't just affect the patient, but everyone around me - my family and my friends.  They see what I go through and how difficult it can be to do simple things.  Of course they help me, but I have to add time to everything I do.  When I was diagnosed I was working at Wyeth Pharmaceuticals.  I continued to work until it became too difficult.  I hadn't planned on leaving my job at the age of 58.  I went on short term disability and then onto Social Security.

Suddenly, our family salary was cut in half.  And because I'm under 65, my Social Security is lower at my age.  We still have a daughter in college, so needless to say, we had to change our life style very quickly.  We had reached the point in our life where my husband and I could travel and enjoy being a couple again, as everyone was out of the house.  ALS has ruined that for us. 

If I would have been diagnosed properly in 2008 we would have done things differently, more traveling, time with the kids and work through my bucket list.  At that time I wasn't suffering as I am now.  I blame the doctors for this.  I knew what I had, because of my father and they kept saying no, it wasn’t ALS.  They actually said I was crazy.

Many people don't understand this disease. Clearly, it can be difficult to diagnose. If medical professionals are challenged by ALS, then it should be no surprise that legislators don't fully understand it yet either. That's why it is so important for people with ALS and their families to be advocates on a state and national level to fund patient services and research for a cure. 

As mentioned earlier, our life style has changed.  For example, we had to put in a gliding chair for our curved staircase so that I could go upstairs.  This is not covered by some insurances or Medicare, so the price tag was $12,000 dollars, out of our pocket.  I have started accumulating a collection of necessary medical equipment - a bipap machine, a nebulizer and a cough assist machine.  Very soon, I am going to need an electric wheelchair and a van to accommodate the wheelchair, just to get around.  There is my medicine, Rilutek, which sells for $1,000 per month.  Luckily, my insurance covers all but a $50.00 copayment each month.  I also have splints for my hands and braces for my ankles.  I had to buy a new wardrobe because my hands no longer work well enough to dress myself.  So now I have a wardrobe that does not include buttons, zippers or snaps.  I cannot wear shoes with any size heel or with laces.  All of these things adds up quickly and can deplete a family's savings for life.  I don't want to do this to my family.

When I was diagnosed in 2010, I became a member of The ALS Association Greater Philadelphia Chapter.   I joined the clinic at the Pennsylvania Hospital.  It was the best decision I made.  The folks in the clinic are wonderful.  They understand the needs of an ALS patient.  As a patient, it is wonderful to come to clinic and see all of the specialists in one day.  I see my doctor, my nurse, a physical therapist, an occupational therapist, a speech therapist, a nutritionist, a research nurse, a social worker and a nurse for the clinical trial I am on.  It makes for a long day, but it is well worth it. They really cover all the bases in caring for the patient.

The ALS Association has provided so many benefits, from eating utensils to home improvements and I am very grateful that they are there to alleviate the financial, physical, and emotional burdens of this disease.

As a PALS, I feel that I should do everything I can to help.  Part of it is selfish because I have three children who have a 50 percent chance of getting ALS, but in reality I don't want anyone to ever experience ALS.  I help where I can.  My family has seen the incredible work of The ALS Association and we want to give back to help all of the other families facing these challenges. My daughter built a team of 100 people for the Walk to Defeat ALS®. She has done this for the past two years.  My friend runs a Chilly Chili for Paula fundraiser contest.  Last year we raised five thousand dollars.  I hope you can join us on March 24. This year my cousin, who recently married, asked for no gifts, but contributions to ALS.  I know this helps, but we need this disease eliminated and we need help to do that.  This is one of the most devastating diseases we have, and we need a cure now.

Team Paula at the Lehigh Valley Walk to Defeat ALS


We Could Do This
Thursday, March 01, 2012



Nothing stops Barry Schultz. Not rain, not bumps and bruises, and certainly not ALS. That may be why he makes The ALS Express so successful.

In March of 2006, Barry was diagnosed with ALS. It is news that nobody wants to hear, but with the support of his wife Sue, who he is now celebrating 35 years of marriage, and his three daughters, Barry became motivated to do whatever he could to raise awareness and money to fight and defeat Lou Gehrig’s disease.

Like so many people affected with ALS, Barry was always very active.  He always loved to ride his bike on trips short and long. His family also shares his active spirit, which has been a great connection his entire life, and even more so during these past six years. 

So when Barry heard about ALS Express, he knew it was the perfect way for him to get involved in fighting this disease. At first he heard that the annual bike ride was in May, but when he found out it was in June, three months after his diagnosis, he and his wife both thought “We could do this.”

Now, when you tell Barry that research into ALS is complex, that raising the necessary money is a challenge, and that we need to get all of our elected officials as well as friends and families to join our cause, he answers the same way: “We could do this.”

In his first race in 2006, Barry’s team had 24 riders. Now, in his seventh year doing ALS Express, Barry’s team averages close to 60 riders.  His wife and all three of his daughters join him, including one daughter who flies in from California.  Barry’s personal story of living with ALS is a big reason why people participate, but it is also his infectious attitude that makes everyone else think “we can do this.”

Barry is defined by much more than his disease.  He works as a maintenance planner and also referees Division II and III college basketball in New Jersey, Pennsylvania, and Delaware. Barry has been a Philadelphia 76ers fan all of his life, and his involvement in basketball has helped him gain an incredible amount of friends and allies in his fight to defeat ALS.

Through his refereeing, he even has a connection to the New Orleans Saints and finds further inspiration through the efforts of Steve Gleason, the former teammate of Drew Brees who is fighting his own battle with ALS.

In fact, his fellow referees, as well as his friends, family and co-workers have raised nearly $100,000 over the past six years through The ALS Express. As Barry says “I feel very lucky to have such support. I even had a teacher from back in high school that sent me money. It is amazing how people have come out to help.”

As if the ALS Express weren't enough, Barry Shultz also has a team in the Greater Philadelphia Walk to Defeat ALS.

As if the ALS Express weren't enough, Barry Shultz also has a team in the Greater Philadelphia Walk to Defeat ALS.

With the Shultz family’s efforts, everybody in the community knows about the ride. That may be because everybody in his community knows Barry! Every year, Barry finds more and more people who have a connection to ALS and he uses their stories as further motivation to work towards a cure.

“I feel very lucky,” says Barry. “I know how many people can’t ride, so I ride for all those people with ALS that cannot.”

Maybe luck has little to do with it. It may be that people join Barry’s ride because when they hear his story, they think, just like him, “We could do this.”

To sign up for The ALS Express, which ends at Morey's Piers in Wildwood, New Jersey on June 16, visit http://www.als-express.org/

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.