Gary Suddath and His Family Continue Their Courageous Fight Against ALS


Dylan, Kenzie and Gary Suddath at the Charlotte Knights baseball field where Dylan threw out the first ball in recognition of his dad and the battle he and others wage against Lou Gehrig’s disease. Gary was diagnosed three years ago with the deadly disease, but continues to defy the odds and hopes for a cure.

By Anna J. Fortenberry
It was a fitting thing for young Dylan Suddath of Denver to stand on the pitcher’s mound to throw out the first pitch at a recent Charlotte Knights baseball game.
It was his seventh birthday. The tanned, blue-eyed blond was there in front of his family and a huge crowd of baseball fans, but all eyes were on Dylan’s dad.
Dylan was there to throw out that first pitch in honor of his dad, Gary, who was a guest of the team along with the rest of the family. It was part of the Minor League Baseball’s Charity Partners Program to promote ALS Awareness.
May is ALS, or amyotrophic lateral sclerosis, Awareness Month. ALS, commonly known as Lou Gehrig’s disease for the New York Yankee baseball legend, was named for the famous player who had the disease that eventually took his life. It is a progressive disease that affects all the muscles in the body. Yes, even down to muscles that help you breathe, swallow, and blink.
Those affected by the disease usually only survive two to five years. Locally, another resident Brenda Lowe, died just a few months ago from the disease. Gary has been battling the disease since his diagnosis in 2005.
Gary and his wife, Jan, began sharing their story of living with ALS shortly after Gary was diagnosed. Their candid interviews in news@norman give the good, the bad and the ugly of the disease. Gary’s life has gone from struggling to walk to now struggling just to breathe.
Celebrating a three-year anniversary is like a double-edged sword.
ease rarely make it through five years. With the third anniversary, Gary’s condition is significantly deteriorated since the last article.
What keeps this man going is probably the love from his family that surrounds him. As the anniversary of Gary’s diagnosis approaches, he has celebrated another birthday (46). But the disease has taken its toll on not only Gary, but also the family.
Dylan, who had just turned four when Gary found out he had ALS, is now seven. He and his nine-year-old sister, Kenzie, have gone through childhood adventures without their dad’s active participation, but you can be sure Gary is with them in spirit every step of the way. Both are doing well in school. Gary’s devoted wife Jan continues to care for Gary at home but the toll on her is obvious. The family lives with Jan’s dad so he can help with Gary and the kids. Jan also relies on some nursing assistants and has recently added a night nurse.
ALS...all you can call it is a cruel disease because it not only affects this man but it plays a role in everyone’s life around him.
The first story of Gary appeared in news@norman in September 2005 just a few months after the horrible diagnosis. Gary had continued to work at home doing his job on the computer but as of March, even that was taken away when the company “released him.” Three years is a long time for someone diagnosed with ALS.
Jan shared this story of what is now happening in their lives. As difficult as it is to write about, both Jan and Gary still hope for a cure that will save him. Jan knows a hope for a cure is what Gary lives for and keeps him from giving up or giving in to the disease. But both also feel it is important to share their story with others who may be diagnosed with ALS.

Jan Suddath:
May is National ALS Month. May is also Gary's three year anniversary of his diagnosis of ALS.
Brent, Scott, Brenda, Joe... names of friends we have buried this year...friends who have lost their battle with ALS. With each loss we can see the pain cross Gary's face - the emotions flooding over him. Then the resolve settles back in his eyes. The courage and fight.
Gary’s face and eyes are the only way he has left to communicate. In the past year his prediction of losing his speech has come true. What he did not expect was the loss of his neck muscles, making it exhausting to use the speech machine he'd been using to communicate. Now we use a letter board to spell out words one letter at the time.
Also, what did not come true was the prediction of his death.
Last summer he went into carbon dioxide poisoning twice. Everyone gathering around him to help him die in peace. Twice he pulled out of it and looked at everyone surrounding him, rolled his eyes and smiled, sending them home. This past winter he battled and overcame pneumonia twice.
Hanging in his room is a simple, but visually startling, picture. It is a gravestone. Gary found a program on the internet that allowed you to design and print out the message you want on your stone. The one hanging in his room say “F (forget I presume) You ALS, I Am Still Alive.”
In March Gary was released from him job and now focuses on friends and family. He enjoys the simple pleasures, taking each day at the time. When people come by to visit with him he will spell out words for hours, focusing not on his journey but on their families and news of their lives. When the children and their friends are around you can see the love in his smile and the joy at their play.
And before you leave there is one simple rule (men need not apply) you must participate in “The Gary Hug.” And as a warning, your hug can not be a simple lean in. You must hug with all your might and heart, taking his arms for him and wrapping them around your neck. And when you complete all that is necessary with the “Gary Hug” you will be rewarded with a hug back with more strength, love and heart than you could ever imagine someone in his condition possessing. If you do not complete the necessary steps you will be asked to repeat until the process until you get it right.
And I have to give kudos to the ladies who come through here and have 100% granted him his hugs. Gary told me once, “If I am going to have the worst disease in the world, I am going to use it to hug EVERY woman I can.” And you have all helped him in this goal.
I have to say again, the community of Denver, the congregation of Unity Presbyterian, the members of Lincoln Charter School not only have been supportive beyond belief; but also have a better sense of humor than most could have in this situation
Mackenzie and Dylan had their 7th and 9th birthday party last weekend. Gary sat by the pool watching the horseplay, enjoying the joy he could see on his children's face.
The children have learned to help in all aspects of their father's care. Mackenzie has the patience that even adults don't have to sit and “talk” to her father. Every morning and every night she gives and receives “kisses.” It is a process that can take up to thirty minutes for Gary but lets him know he is the most special person in the world.
On April 26, Dylan was asked to throw out the first pitch at the Charlotte Knights game in honor of his father and the ALSA. It was his birthday. The pride on his face and the face of his father told the whole story. Gary played baseball throughout his youth and was able to see his son pitch on a pro field in a pro game.
These are the moments that keep Gary alive.
The delegates are in (Washington) DC now (for the National ALS Conference) to lobby Congress for help with this disease. We regret we can not attend this year. The trip there would be too much for his compromised lungs and the exposure to other diseases is too much of a risk.
May 31st is the Walk to D’Feet ALS in Charlotte. (Please consider making a donation. See below.) We also regret we can not attend this important event.
It is the same day as Mackenzie's Spring Dance recital. Gary will be in the North Lincoln auditorium watching Mackenzie and all she has learned this year. And I know Mackenzie will be dancing just for Gary.
When Gary smiles you have earned the world.
What is late-stage ALS like? During the days are bath, shave and personal time. Evenings are family time and nights... are a nightmare. We have a wonderful nurse’s aide come by Monday through Friday to help with his care and have added another nurse to come a few nights a week so we can get some sleep. I have finally slept three nights in a row and it has been wonderful.
To this point all of the nursing is paid out of pocket as insurance does not cover it. With the loss of his job we do not know the future outlook but we still have the trust and faith that if we are doing our best it will work out.
I do not know what “typical” late-stage families do, but in this house there is laughter, and tears and sharing of emotions from the children. Faith. Trust. Anger. Fear. But all in balance. The two most abundant things in this late stage house are resolve and love. And the knowledge that each of us is doing our best, children included.
And with that we can do no more.
We know there is a possibility Gary may die this week or, in true Gary fashion, may live for more years of joys and pleasures. Day by day. Joy by joy. Blocking out the pain and sorrow and focusing on what truly matters.

Want to Help?
Walk to D’Feet ALS: Saturday, May 31 Registration: 9 a.m.
Opening Ceremony: 9:45 a.m.
Walk: 10 a.m.
Location: Ballanytne Corporate Park, Charlotte.

The walk site is wheelchair and stroller accessible. You don’t need to walk any or all of the route in order to participate. For more information call Candice Thompson at 877.568.4347 or email candice@catfishchapter.org

To Donate:
The ALS Association - Jim "Catfish" Hunter Chapter
Attn: Walk to D’Feet ALSTM
120-101 Penmarc Drive
Raleigh, NC 27603