John "Jackie" Buzby
I was born Valentines Day, 1953, and have five siblings, two brothers and three sisters. As a youth, I participated in baseball and ice hockey, and as a young man, I continued playing ice and roller hockey. I married my wife Sandy in 1972, and we have two wonderful sons, Paul and Kevin, as well as a wonderful daughter-in-law, Michelle, and a grandson, David. When I was diagnosed in October 2014, it was the most devastating day of my life. First, I had no idea what ALS was, and having to break this news to my family was gut-wrenching. Then, I was referred to ALS Hope, Dr. Patterson and her team. That was the best thing that could have happened. Seeing the team every three months gives me peace of mind, as I've told the Doctor in the past. Though ALS takes my physical abilities away, the emotional part is just about as bad as the disease itself. Though I am having difficulties doing what most people take as normal, I have a great support team in my friends and the ALS Hope team, and especially my family. I am hoping that the cure for ALS is found sometime in the near future.
Life's happiness, no matter what your journey is carved out to be, relies on a good attitude, faith in God and a desire to make the most out of every day. Desire becomes more difficult as the disease progresses. But like everything in life, the things worth fighting for are usually the most difficult. For me, I have always had a great desire to set an example to the people around me. I grew up in foster care and my entire journey has been tough. I can make the most sense out of my life if I think that God is using me as an example to others. I believe that all of us with this terrible disease can turn it into a thing of beauty by affecting the people around us in a positive way. See, when people are going through things and see us still plowing through life in a meaningful way, it helps them to realize they can do it too. There are days I wish I was not chosen for this. I can wallow and feel sorry for myself or I can take it for what it is and make the most out of it.
For me, that way is by living my life everyday to the fullest. Cynthia and I have always tried to do this. When we were raising our kids (6 of them) we did not have much money. We use to put a popup tent in the backyard and have date nights. The kids knew when we were in the tent unless someone was dying, do not bother us. We are fortunate today that this disease struck me at a point in our lives where our children are grown. Because we were always careful with our money we have the means to travel in our RV and enjoy the sites and our time together. But I know even if we did not have a nickel, we would find a way to still do things and enjoy life in ways that we had to in the past.
Not only is enjoying life and doing fun things keeping me going (I am three years into symptoms with this disease), but I am still setting an example especially to our grown children, that life no matter the circumstances is purely what you make it.
I have always been a person that likes it straight up. Once I know what is ahead, I can make a plan and take it on. Taking life on with my terms means appreciating all I have and all I can still do, not what I can't do. My inspiration to all of you is, try it. I promise you will be happy you did.
God Bless all of you! We have been given a great mission to show others that greatness is in every part of the journey.
Love to all,
Your Partner Bill Snyder
Where do I begin about what Hope means to me? The Center of Hope is truly a gift from God for me. From the first visit, I knew it was a very special place with staff that really cared about the patients from their hearts. During every visit, each team member listens to my concerns and does whatever they can to provide the support I need. Dr. Patterson never gives up trying to find out answers. I look forward to the ALS Hope walk every fall so I can give back just a small portion of all they have done for me. I feel so blessed to have the Center of Hope caring for me and I thank them all from the bottom of my heart.
ALS! What can we say about ALS? It is a somewhat mysterious disease in that like a snowflake, it seems to affect everyone differently. It can affect our bodies in so many ways and can devastate our families and all our plans for the future. It can rob us of our joy and happiness if we succumb to its devastation, and life will never be the same again for our families after the diagnosis. There is no cure yet, and we are fighting hard and holding on for the day when there is finally a breakthrough/cure - or at least a halt to the progression of its afflictions. Many of us will not live to see that day, but we continue to rally for our comrades and those who can help make a difference.
I have learned even more through my disease that life is about relationships. My relationship to my Lord, my relationship to my wife; my relationship to my family; my relationship to my ALS Hope Family; and friends and co-workers who are there to support me. Sure, there are difficult days when I feel trapped inside a body that will not cooperate with my desires. I feel normal inside but my outside fights me at every turn. When drool suddenly falls out of my mouth, a bite of pureed food unexpectedly escapes, unpredictably I start laughing or crying in public or make strange noises - during those times, these are the people who love and value me, and I desperately need their support. My beloved wife who wears the burden of being my diligent caregiver and deals with my frustration on a daily basis is so much appreciated.
After many years of separation from family, the ALS disease has brought us back together again. This is encouraging to me and my wife. Every day we make choices on how we deal with ALS. We can give up and whine in self-pity and make everyone miserable or we can accept, be strong, persevere, and remain positive. ALS disease is not a surprise to the Lord! I sincerely believe that He allowed me to have this disease for His glory. He tells us in 2 Corinthians 12:9 “And He said to me, 'My grace is sufficient for you, for My strength is made perfect in weakness.' Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.” At this point in my life, I feel very blessed in that I still have use of most of my motor functions and I do so look forward to that day when I will have a brand new resurrected life in Heaven with My Lord.
1 Corinthians 15:42-44: "So also is the resurrection of the dead. The body is sown in corruption, it is raised in incorruption. It is sown in dishonor, it is raised in glory. It is sown in weakness, it is raised in power. It is sown a natural body, it is raised a spiritual body."
When I was diagnosed in November of 2012 with PLS (Primary Lateral Sclerosis), a variant of ALS, at age 56, my world did a 180-degree turn and literally fell apart. I met Dr. Patterson and her team soon after that, and together, we became a team fighting my disease. I’ve had successes, setbacks, and so many times when I’ve wanted to give up, but I’ve held onto something that kept me going.
The one thing that keeps me going is Hope. Hope is always having a light at the end of my tunnel. Hope is a goal. Hope is a dream. Hope is faith that someone or something out there is fighting for me to come out on top. Hope is the positive feeling that everything will, in time, be alright. My team continues to be like family. We laugh, we cry, and we keep on discussing the best course of action for me to continue living as normal a life as possible. Finally, Hope is a belief in a positive outcome related to events and circumstances in one’s life totally beyond one’s control. I feel very blessed to have Dr. Patterson and thank her and my team for caring.
I’m not always sure how courageous my heart is, but I am sure there’s always Hope in it.
When I was diagnosed in March of 2013, I knew practically nothing about ALS. I felt alone, filled with dread and despair. Thankfully, I was quickly connected with the ALS Hope Foundation. Their amazing staff helped to treat, encourage, and educate me. Most importantly, my spirit of hope was revived. Now I have rediscovered my loving family, caring community, and the unwavering commitment of the MDA/ ALS Center of Hope. My family and I know we are not alone and can rely on the Center’s sincere dedication and support as we continue on this (hopefully) long journey.
Gerald "Jerry" DeStefano
Jerry DeStefano has many monikers: Husband, Dad, Poppy, Son, Brother, Uncle Big Jerry. Other hats her wears are Master Plumber, Boss, Coach, Friend. He is the patriarch of our family, opening his heart and home to celebrate each occasion whole heartedly and always bringing his family together. In times of hardship, he is always the one to step up to the plate and let us know we are not alone because he is here for us. He is our foundation, our roots, our legacy. He worked diligently to become a master plumber and built a successful business. He worked night and day to provide for his family and shared his knowledge with not only his two sons, who became professional plumbers as well, but with everyone who wanted to learn.
He is a pillar of our community and has earned the respect of many young boys by volunteering to coach baseball for over 20 years, even when his sons were not eligible to play, because yes he loves baseball, but more importantly, he loves the youth of our community and wanted to teach them positive morals.
The courage and strength he has proven in his fight with this God forsaken disease is not surprising to any of us. He still goes to work everyday and tries his best to make everything seem normal. Not for him-but for us.
This may be his greatest challenge, but he is a warrior who refused to lay down his sword. He is our favorite person in the whole wide world, loved so deeply by so many, and we all his soldiers in this battle. Not only for his strength and courage in battling ALS, but for a lifetime of achievements and selflessness and being our “Big Jerry”- Congratulations-we love you!
Rita Fezzuoglio and her loving family have lived with ALS since August 2015, when she first came to the MDA/ALS Center of Hope, where she brightens everyone's’ day. From the beginning, she and her family have embraced the ALS Hope Foundation and supported our work by not only participating in our events, but hosting an ice cream social at Countryside Elementary School.