Category Archives: PALS

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.

Thanksgiving Care

As in every year, the end of November is highlighted by Thanksgiving and the start of the Holiday Season. November is also National Caregivers Month.

A tradition at the Greater New York Chapter is to provide Thanksgiving meals to people living with ALS and their family and caregivers. This year nine families received a traditional Thanksgiving meal with a turkey, delicious sides, and dessert. Additionally, family and caregivers receive a basket with plates, napkins, cups, and some delectable treats to complement the holiday and to ease some of the added stress that comes with the season.

Special thanks to the dedicated volunteers and members of the Chapter’s Young Professionals Group (YPG) for delivering these baskets and bringing families impacted by ALS a bit of cheer during the holidays.

To volunteer with the ALS research or for more information about The ALS Association, please click here.

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Saluting Our Veterans

Every November 11th our nation commemorates Veterans Day, honoring those have served in our country’s armed forces. This is especially meaningful to the ALS community, as those who’ve worn a military uniform are twice more likely to develop ALS than civilians.While the exact cause remains unknown, the U.S. Department of Veterans Affairs offers an array of benefits those living with ALS who’ve fought for our country.

To honor those veterans with ALS, living and departed, The ALS Association created the Wall of Honor as a tribute. If you are a veteran, please join other area veterans and tell your story.

If you are a loved one of a veteran, please share their story on the Wall of Honor. Here are just some of the outstanding veterans of New York and New Jersey on the Wall of Honor:

Carol Costanza-Edwards — Teaneck, NJ
Women’s Army Corp (WAC), 1959-1961

Served at Fort Carson, just outside Colorado Springs, Colorado. She died of ALS just this past July, survived by four children and several grandchildren.

Leonard Gagliardi — Brooklyn,
NY Navy, 1942-1945

Served as a Naval Medic during World War II in North Africa. After returning stateside he got married, moved to Freeport, NY and raised six children. He worked at the Daily News. His brother also died of ALS.

Luis Journett — Union City, NJ
Army, 1963-1965

Stationed in Vietnam, he was a decorated sharpshooter in the Airbourne Division. After his tour of duty he returned to New Jersey and was married for 43 years, raising five children and having 16 grandchildren. He died in the Fall of 2011 after a brief battle with ALS.

Fred Ruprecht — Wantagh, NY
Navy, 1951-1955

Served as an Engineman on the USS Purdy during the Korean War. Upon returning to civilian life he became a New York City Fire Fighter and raised four children with his childhood sweetheart. He was diagnosed with ALS just before Christmas 2006 at the age of 74, but continued to care for his wife who was suffering with Alzheimers. He died less than a year following diagnosis.

Andre Williams — Far Rockaway, NY
Army, 1980-1986

Enlisted and was subsequently deployed to a field artillery unit in Germany testing tanks and cannons. Following his service, he worked for over 20 years as a plumber and plumbing instructor. Andre is an ALS Advocate, particularly on issues related to veterans.

To learn more about Veterans’ benefits for those living with ALS or to tell your ALS story as a veteran (or posthumously by a loved one) on the Wall of Honor, please visit www.alsa.org/veterans.

The Greater New York Chapter salutes our troops and thanks them for their service to our country.

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Ask Ben: Does A Raised Toilet Seat Help?

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It is becoming increasingly difficult to stand up after using the toilet. Would a raised toilet seat be a good option and make it easier for me to stand?

– Terry S., Nassau County, NY
A raised toilet seat is a sturdy plastic cylinder placed on the toilet bowl to enable one to sit higher than the standard 15” toilet. They generally add 2” – 6” of height. This is an important consideration when standing up becomes difficult. Standing from a higher seated position, requires less effort than from a lower position. For a raised toilet seat to be safe, it must be ‘secured’ (A bracket tightened under the lip of the toilet). Without this bracket, a raised toilet seat can easily tilt or tip when uneven pressure is placed on it.
Another idea for sitting higher on a toilet is a standing or rolling commode. These provide a separate layer to sit on above the toilet and without the pail. Look for models that allow you to adjust the height. There are ‘up-lift’ commodes as well. These have seats with a mechanism that actually rise to assist you in getting to a standing position.
Another option would be to add grab bars. There are a couple of different kinds of grab bars which, if you have sufficient arm strength, can further help to lift yourself off the toilet. There are easy to install grab bars that attach to the back of the toilet seat itself, as well as rest on both sides of the toilet. There are also grab bars that secure directly to the studs in a wall, which can be placed next to and behind a toilet. These come in varying lengths to accommodate the space available. These options are specific for such use and provide needed safety. No matter how handy and convenient, please do not use a towel rack that happens to be in close proximity. It is not designed to accommodate the grip or pressure when standing up.
Any of these options can be helpful for both the person with ALS, as well as his/her caregiver. Because everyone has different dexterity and strength, and bathroom designs vary widely, it is best to have a conversation with your physical or occupational therapist to determine what would work best for you.

– Ben

To ask Ben a question, simply email him at blieman@als-ny.org or call at (212) 720-3057. Ben will answer all questions directly as usual, but not all questions will appear in the Monthly Update.
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Yankees Magazine: PALS Adrian Dessi at Yankee Stadium with Greater New York Chapter

Yankees Magazine wrote about local ALS patient Adrian Dessi as he took to the field at Yankee stadium on July 9th accompanied by his family and ALS Association Greater New York Chapter President and CEO Dorine Gordon to accept a generous donation from the Yankee organization along with a commemorative home plate presented by Manager Joe Girardi. Dessi had the honor of throwing out the first pitch of the game and later witnessed history as Derek Jeter made his 3,000th career hit. What a great day for baseball and for those touched by ALS!

Click on this link to read the article as it appeared in the August 2011 edition of Yankee Magazine.

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Enjoying the Summer Bar-B-Que!

Summer 2010 is upon us and the smell of steaks on the grill and the sound of water splashing in the pool is all around us. Invitations to join friends and family for shish-kabob and s’mores may start coming in. How should a PALS or their CALS handle these invites? Well, if you want to go, by all means, go. Here are a few hints to help everyone enjoy the backyard festivities this summer.

First, call ahead and see what is being served. If there are dietary considerations to observe, offer to bring a dish or 2 that the patient can eat safely, and that others might want to taste and enjoy. How about a Humus with a soft bread (the crust can easily be removed for the PALS) for an appetizer? Why not try a cold gazpacho soup with a mild summer chilli and maybe some Mac and Cheese for the main course? Who could resist a chilled plain vanilla yogurt (or pudding) parfait with pureed berries blended in and topped with chocolate syrup and whipped cream? Don’t forget the drinks, a nice smoothie, an ice cream shake on a hot day, various nectars or even a pina colada can be a pleasant addition to the party.

Now, you have the food and drinks out of the way, what else? Be sure your host/hostess has a safe place for the PALS to get on and off the deck or patio, and a shady area so the PALS is comfortable. Check your surroundings and plan an out if the weather should change suddenly. Be sure any equipment can be accommodated, like outlets for respiratory or communication devices and wheelchairs or walkers will have enough room for movement.

How about those personal needs, does the host have toileting facilities that would be easily accessed by the PALS and would it accommodate the caregiver, if needed? Prepare for this, as you would a long car ride – you might want to mind your intake.

Discuss the timetable between CALS and PALS so that neither one of you “spoils” the other’s good time. Don’t hesitate to meet up with friends and family this summer or anytime. Enjoy the sights and sounds and smells and tastes of the next gathering.

Below are recipes you can print out to enjoy this summer from the High Calorie and Easy to Chew Cookbook that we share with PALS at the Stony Brook ALS Center.

Veggie Mac & Cheese: Click to Download (PDF)

Quick Chili: Click to Download (PDF)

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The "Elfing" Ceremony

by Ruth Louison

As a Jewish child growing up in a predominantly Jewish neighborhood, most of my friends celebrated Chanukah. I always thought it was kind of boring not having a cool dude like Santa leaving presents under the menorah. Christmas trees always took my breath away; even the ones that closely resembled Charlie Brown’s scrawny little shrub. Every year my parents would leave one gift “from Santa” at the foot of our beds for my younger sister and me to find on Christmas morning. The two that stand out in my mind are a tin dollhouse when I was four, and a very tall rag doll that, when attached to your shoes with elastic bands, would dance with you. I have no recollection of precisely when I finally gave in and accepted the fact that the parents were Santa and it was all a charade. I probably told my sister as soon as I found out. Any opportunity to make her unhappy was a gift in itself.

Fast forward to my daughter and Santa. My father told me that if I was not married to a man who wasn’t Jewish and I put up a Christmas tree, he would disown me. Since a Christmas tree was out of the question I did the same thing my parents used to do. I left her present at the foot of the bed along with a little note from Santa. She was thrilled. I remember her arriving home from school one day very disgruntled, having been told by her classmates that Santa was a fraud. I gave her a hug and asked if she wanted to return her presents. That was the last time she complained.

Years flew by. My daughter married and was the mother of three beautiful children. There were no restrictions placed on anything, so we did the whole deal for Christmas. Heather, the oldest, came home one day shortly before her 8th Christmas and announced to her parents, “I know that you guys are Santa, AND the Tooth Fairy, AND the Easter Bunny.” Boy, were we busted. Knowing full well that Heather would not hesitate to break this news to her younger siblings, we had to think fast. I suggested that it would be fun to make her a part of the festivities. We told her not to say anything to the others and that she would find out why on Christmas Eve.

I created a certificate trimmed with holly and Santas that read as follows: “Welcome to Santahood, Heather Lynn. Your parents, and Grandma and Ernie, who love you dearly, wish to take this opportunity to welcome you to the adult festivities of the Christmas season. This year, on Christmas Eve 2004, you will join us in stuffing stockings, wrapping packages, and setting out “Santa gifts” under the tree. We are proud and happy to have you be part of this wonderful time, but you must understand that being “Santa” brings with it many responsibilities. It is a sacred trust. We have kept that trust for you, so that you could enjoy waking up on Christmas morning to the wonderful gifts that “Santa” brought while you were sleeping. We wish to preserve that magical time for your sister and brother, who have many Christmas mornings to look forward to. We must have your solemn oath that under no circumstances will you tell them that we are “Santa.” If they ask, you are to send them to your parents or your grandmother. Please do not disappoint us, because this is very important to us, and to your brother and sister, who still believe. We want you always to remember that Santa is in your heart. The spirit of Santa and of Christmas is one of love and giving, not only of receiving presents. We are certain that you will not appreciate this until you are older, but please keep this certificate among your most treasured possessions to be shown to your children when they are your age. We love you more than anything in the world.”

We bought her a Santa hat and a bag of stick-on gift bows. We sent her to bed with her siblings, where she waited patiently for them to (finally!) fall asleep. She joined us in the living room where we solemnly placed the hat upon her head, handed her the bag of ribbons and read the certificate to her. We then declared her an official Elf. You have never seen a child so excited. She helped us finish stuffing stockings, put the bows on all the presents and carefully inspected the tree for any irregularities. Satisfied that all was in order, Elf Heather marched happily to bed to await Christmas morning.

Her brother and sister both were “elfed” – Amanda at age 8, and Christopher, who held on to Santa until he was almost 9. Several years later, another sister (Megan, now 7 years of age) came into our lives. She has now declared that she knows we are Santa. We will have a ceremony for her this year but it will be a bit different. She does not have younger siblings who believe in Santa (the dogs don’t count). She does, however, have many friends with younger family members, so we have amended the certificate to reflect the current circumstances.

I am very proud of my grandchildren and of the way they have grown, and joined in our Christmas celebrations. I must confess, however, that I really do miss Santa.

You can visit Ruth at www.oldcarmama.com

Ruth Louison, 63, used to work as a Human Resource Generalist at a local City hospital. Ruth is married with one daughter, two stepchildren and five grandchildren. She’s addicted to writing short fiction, baseball (sorry, but she’s not a Yankee fan), street rods and drag racing. Ruth was diagnosed with Progressive Muscular Atrophy, which is the fraternal twin of ALS, in March of 2009.

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New York Chapter Thanksgiving Program

As part of The ALS Association Greater New York Chapter’s annual Thanksgiving Program seen here is volunteer Christian Hespe delivering a Holiday basket to caregiver Susan Turin from New Hyde Park, LI. The program is offered to help ease some of the stress that comes with the holidays for PALS and their families. This year we are happy to say we were able to donate a family meal and a gift basket to 8 families.

Robert(PALS)and son Daniel happily share the visit
as volunteer, Christian Hespe, delivers a holiday basket.
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