Tag Archives: PALS

Traveling the Globe for The Walk to Defeat ALS

Cathy Standish Travels the Globe for The Walk To Defeat ALS, in honor of her husband Fred.
Cathy Standish Travels the Globe for The Walk To Defeat ALS, in honor of her husband Fred.
Cathy Standish was reading through her husband Fred’s travelogue when she came up with an idea to honor her late husband. Fred was diagnosed with ALS in December of 2015 and unfortunately lost his battle last month. He left behind a wonderful travelogue documenting all the places he lived and worked throughout his career as a reporter for the Associated Press.

“Fred would take pictures of himself in the homes where he lived and at local landmarks.  It’s a log of every small bureau and town or city he worked,” Cathy said.

Since Fred’s diagnosis the travelogue has taken on new meaning. Cathy is determined to be a part of The ALS Association’s Walk to Defeat ALS in every city her husband has lived and worked. This includes more than 20 cities across the US.  They will then travel Greece, where Fred worked, for their own honorary “walk.”

“I think he would be really happy with my plan, he would feel the travel log meant something and there was a reason for it. Through the travelogue we are bringing awareness and hope to the ALS community,” Cathy said.

She said the decision to tackle nearly 2 dozen Walks to Defeat ALS was an easy one.

“I have a neighbor a couple doors down who also just lost a family member in NJ from ALS. ALS touches so many more people than we think. I think it touches everybody, it may be 6 degrees of separation, but I believe it affects everyone in some way,” Cathy says.

Cathy says her motivation to keep going stems from the strong bond, love and respect she shared with Fred. She said even at the very end she did what she needed to help keep Fred’s spirits up. “I would do silly little things like disco lunch time when it was time for his tube feeding. I would play a horrible disco song because Fred hated disco. And certain things like that would make him laugh and I always tried the best I could to keep him up,” Cathy said.

She admits it wasn’t always easy helping Fred keep his fight, while also taking care of herself. Cathy says it’s important to remember your own needs as well as your loved ones.

“Be kind to yourself, and have self-compassion. If you get in a fight it’s ok. My husband and I had arguments over silly things like where to hang a picture. Just because you’re a caretaker doesn’t mean you’re not their spouse anymore. Take time for yourself; every minute you can take time for yourself,” Cathy said.

Fred spent time working for the Associated Press in New York so on her walk list is the New York City Walk to Defeat ALS on May 6th.

“I’m really looking forward to coming to NYC and feeling the energy of the city. I know amongst all the people there will be so much hope, and I will be so excited,” Cathy said.

Registration is now open for all 7 of the Chapter’s Walks to Defeat ALS. We look forward to seeing all of our amazing PALS, families, and supporters on walk day!

TEAM Ramon’s Kickers

TEAM Ramon’s Kickers

Ramon Lopez Walks to Defeat ALS in memory of his father Ramon Lopez C.
Ramon Lopez Walks to Defeat ALS in memory of his father, PALS Ramon Lopez Carrllio

High school student Ramon Lopez Florez was eager to sign up for the Long Island Walk to Defeat ALS.  In fact, at the early hour of 5:45am on the day registration launched, Ramon became the first person this year to sign up a LI Walk Team!

Ramon and his family walk in memory of his father Ramon Lopez Carrllio. Ramon’s father was diagnosed with ALS in 2010, at the age of 40. Three years later, he lost his fight to the disease.

“He was told that he couldn’t work anymore, but my dad continued to work and decided not to give up.  He said he wasn’t going to just sit around. Even with the disease, he managed to go to work for a full year after his diagnosis,” Ramon said.

Ramon was forced to grow up quickly becoming one of his father’s primary caretakers. “When we found out it was ALS, we had never heard of this, it was hard to understand. What was going to happen in the future? We had to find a way to help him. It was hard,” Ramon said.

Ramon decided last year he wanted to honor his father’s memory by joining the Walk to Defeat ALS. He formed Team Ramon’s Kickers.

“It’s good to get involved. It allows you to see you are not the only one going through tough times and there are other people looking for a cure and fighting. You are not alone in this,” Ramon said. “If we rally up into one team to find a cure, we will be one step closer to reaching our destination.”

Ramon says he will continue the fight, so no other family has to go through losing someone to ALS.

“I have so much support from my high school and my church. So many people have stepped up to either walk or donate,” Ramon said. “And I really think my dad would be very proud of me.”

Registration is now open for all 7 Walks to Defeat ALS. We look forward to kicking off walk season with all of our PALS, families, and supporters.

PALS Love Stories: David and Bonita Loomer

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Our 50 Year Journey with ALS, Our Love Story

I opened my email inbox the other day and saw an email from a man living in California, it was titled ‘Our 50 year journey with ALS, our love story.’ Not knowing what to expect I opened it and downloaded a 50 page file.

As I started reading, I realized as the Communications Manager for the ALS Association Greater New York Chapter, this was a love story I needed to share with all of you.

David Loomer met his wife Bonita in high school. Their love story started on the dance floor when she had the courage to ask him to dance.

“One might say not we were what you would call a perfect match as she was pretty formal and goal driven, where as I was more interested in experiencing life’s many wonders,” David said.

But despite their differences their relationship quickly progressed into something more serious. Serious enough for Bonita to introduce David to her mother. Bonita at the time was caring for her mother, who was diagnosed with ALS and could no longer walk or verbally communicate.

David and Bonita LoomerDavid said when it came time to propose to Bonita, she hesitated before responding.

“I vividly remember her saying, “are you sure you want to marry me knowing ALS can be familial”. I responded saying dear, we are all going to die from something, nobody will live forever, remember I’m in the business of dealing with death. I Love you, I want to spend the rest of my life with you, for better or worse, in sickness or in heath for all eternity,” David said.

David and Bonita, married had two daughters, and later two grandchildren. David said his priority was living each moment to its fullest and always putting family first.

David and Bonita Loomer with Children and Grandchildren

“Always having the thoughts of ALS in the back of our minds, never knowing if or when, caused us to do and experience things most wait until retirement years to enjoy. So looking back dealing with ALS at a young age instilled valuable lessons in both of us as to what is really important,” David said.

Unfortunately their fears became a reality when Bonita started showing signs of muscle weakness. She was diagnosed with ALS in March of 2014, at the age of 65. David said as the disease progressed Bonita never lost her will to keep fighting. He became her full time caretaker tackling it head on.

“Regardless of being imprisoned within her body, unable to do even the simplest task, she always managed to smile, that quirky little smile I fell in love with 50 years ago,” David said. “Her smile reinforced her love for me. Her body had failed but not her mind, so I became her arms and legs, we became one in each other.”

And you may wonder how after 50 years together and now taking on the role of caretaker David managed to keep the love alive. He said it’s about remembering what made them fall in love in the first place, a dance.

“Having to carry her everywhere, meant I was blessed with holding her in my arms at least a dozen times a day. She always loved to dance so I would lift her up and briefly sway, trying to sing “Can I have this dance for the rest of my life”, before placing her in a new spot,” David said.

In June of 2016 Bonita passed away with her soul mate of 50 years by her side. David said saying goodbye wasn’t easy but he knows she is now watching over the family.

“Our Granddaughter wanted to see Grammy, to say Good-bye. Not sure what the reaction would be we agreed. After seeing her she quickly responded, She is OK now, she can use her hands and feet again in Heaven. How profound was that?” David said.

In honor of Valentine’s Day the ALS Association Greater New York Chapter salutes all of the beautiful loves stories we witness each and every day working with all of you. Thank you for your continued love and support.

PALS Love Stories: Ed and Maria Sconzo

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PALS Love Story: Ed and Maria Sconzo

Love at First Dance

For Ed Sconzo it was love at first sight.

“I went home from a Sweet 16 party, my mother and aunts were at the table having coffee, and I said to them I think I met the girl I’m going to marry, and they just laughed at me” Ed said.

He was talking about Maria, who he met November of 1955 at a friend’s party.

“When I looked across the room I saw this beautiful girl, in a beautiful dress and shoes, and I went over to her and asked her if I could have this dance, she said yes and we started to dance,” Ed said. “We danced all night, and talked, and I asked for her number.”

So how exactly did Ed know that Maria was the one after a single dance?

“You know it is true love when you want to be with that person all the time. I remember we were both always late to class, because we would meet in the stairwell to steal a kiss between classes.” Ed said. “I just couldn’t wait to get over to her house to be with her, I was always so excited to spend time with her.”

Valentine’s Day 1959 Ed officially asked for Maria’s hand in marriage and the two have been inseparable ever since. They have been married for 57 years and have 3 children and 9 grandchildren.

“I love her as much as I did on the day I married her, maybe I even love her more because I appreciate her more. The sacrament of marriage is for better or worse, and in sickness and in health and I take that vow very seriously,” Ed said.

It is a vow that took on new meaning in 2010 when Maria was diagnosed with ALS.

“The dynamics of our relationship have changed a lot. It’s very hard for her to eat so I have to feed her, I brush her teeth, I bathe her, I dress her, and I do everything for her. I don’t mind because when you love someone you would do anything for them,” Ed said. “That’s what the sacrament of marriage is truly all about.”

When the times get tough Ed says he just remembers how truly lucky he is to be surrounded each day by such a loving family.

“I feel like I’ve been blessed. I’ve been blessed with a wonderful wife all my life and beautiful children and grandchildren. I have no regrets, and I’m just happy that we are still together,” Ed said.

Ed said keeping a marriage alive for 57 years isn’t always easy. It takes work and compromise.

“My advice to any couple is to never go to bed angry, and be like a sapling and bend a little. Nobody is perfect – you have to understand the other person,” Ed said. “I would tell them just to love each other. If that spark isn’t there between the two of you then it’s not going to work.”

For Ed and Maria that spark has never dulled. It shines as bright as it did that day in 1955, when he asked Maria, for what would be the first of a lifetime of dances.

In honor of Valentine’s Day the ALS Association Greater New York Chapter salutes all of the beautiful loves stories we witness each and every day working with all of you. Thank you for your continued love and support.

For PALS, Communication is Key When Teaching About Patient Needs

IMG_5336Social Worker Lois Lipper was recently invited to join Helen Mayer, RN, and Nancy Brenner, LCSW, Greater New York Chapter Patient Services Coordinators in conducting an in-service training for the staff of Victoria Home, a nursing home in Hudson Valley, NY. The goal was for Lois, who was diagnosed with ALS in 2012, to help those health care professionals caring for people with ALS to understand first-hand what it’s like to live with Lou Gehrig’s Disease.

Victoria Home nursing home is a private home-like environment built over 100 years ago. Through a grant from the New York State Department of Health, the facility was able to take on the challenge of building a special unit to provide care for people with neurodegenerative diseases such as ALS and Huntington’s Disease.

Once committed, the staff was determined to learn everything they could about caring for ALS patients and contacted The ALS Association Greater New York Chapter for assistance. In-service training is a service provided to health care facilities at no cost as part of the Chapter’s patient service programs.

Victoria Home Assistant Administrator Biljana Stojadinovic, MSPT, LNHA, said it was a valuable experience to have Lois present to them. “It’s one thing to talk about ALS patients but it’s different to have an ALS patient in front of you telling you what it’s like,” she said. As a health care professional herself, Lois wanted to ensure people who care for PALS understand them physically and psychologically. “I wanted them to know the internal experience of the disease and the things that they never have thought about before,” she said.

Victoria Home hopes to provide care for as many as 25 people with ALS. That comes with a different set of skills that they are developing with the help of the Greater New York Chapter through in-services on several topics including equipment, speech, swallowing, and nutrition. “They’re a very devoted group who want to do their best in implementing what they have learned,” said Nancy.

The biggest impact was having an ALS patient speak with them. “It gave our staff a different perspective,” Biljana said. “The care level for an ALS patient is going to be different than what we are dealing with now.”

Lois said one of the most important things about working with ALS patients is the value of communication. “It’s not just that you can’t move; it’s not being able to be understood and how disconnected that makes you feel,” she said. Lois is committed to education. She finds it gratifying to teach those who will care for PALS. “I think the more we reach out and are understood the more support we’ll have from the community.”

Would she do it again? “Absolutely,” Lois said. “I think it’s important. It felt good to know I was helping ALS patients to be understood in some small way.”

If you would like more information about our in-service program or would like to request an in-service training, please click here or call the Patient Services Department at (212) 619-1400.