Gerald: No. Love is what life is about. It was there before my diagnoses......BUT it sure focused me on being sure every person knew I loved them!! My "Wink!" is getting tired!!
Fenton: Has the ALS Association and its services made an impact on you?
Gerald: Yes, very much so - from the second day and to this day. My family is my first priority. We are very involved with the ALSA of GA team. My family has obtained much peace with this "doing", "knowing" and "hugging!" Thank you!!
Fenton: How has healthcare changed through the course of your battle with ALS?
Gerald: I'm not in a battle. I'm in a "change." Every life has changes. God as well as my professional, organizational and family caregivers are assisting with each "change." I am confident that this will continue. I am in peace.
My wishes are:
1. That every PALS and CALS has the knowledge and the choice to "Make It SO!"
2. Doctors that diagnose ALS provide information of compassionate care and support to the ALS patient and their family at diagnosis or refer them to an ALS Center for diagnosis.
Fenton: What brings you the most joy?
Gerald: Seeing my family moving on! And at peace....
Fenton: What brings you discomfort?
Gerald: Seeing doctors that are not compassionate and PALS and CALS that "don't know." Also, seeing parents that do not understand the values and benefits of their son and being involved in Scouting. Finally, indecision on opportunity.
Fenton: How has Gerald’s diagnosis of ALS changed your life?
JoAnn: I don't take a single day for granted. I don't miss an opportunity to say I love you not only to Gerald but to everyone I love. You appreciate life and your family and friends to a new level. I thank God everyday for Gerald and the life we have together.
Fenton: What does the word "Caregiver" mean to you?
JoAnn: Love. When you love someone there is nothing you won't do for that person. You "Care" about his needs and his wants and you "Give" him the best of care that you possibly can. You do your best to try and understand what he is going through and you want to make that person as happy and as comfortable as possible. You do what has to be done, no matter what.
Fenton: As a primary caregiver, it is often a challenge to maintain facets of your own personal life. How do you maintain a sense of balance in your life?
JoAnn: At the stage we are at with ALS, no. Gerald insists that I continue to do the things I have always done. I still get my nails done on the same day I always have, my hair appointments, doctor appointments, I just make them for the afternoon instead of the morning because I want to be there for him to get his day started. My sense of balance is our family. When you have a great, loving, caring family you can face difficult times.
Fenton: Gerald has demonstrated great courage and dignity throughout the progression of his illness. Where do you think he pulls that strength from?
JoAnn: God and his love for his family and friends. Gerald is one of the most loving and thoughtful persons I know. He has always said he wants to leave the world better than he found it. And he will just because of who he is and what he believes. He is truly a remarkable man.
Fenton: You and Gerald continue to enjoy vacations. What kind of preparation is needed before, during and after travel with your husband?
JoAnn: When making reservation at a hotel you need to make sure that you ask for a handicap room. The bathroom for us has to have a shower, not a tub, because it is now hard for Gerald to try and step into the tub even if it has hand rails. Safety Issue.
Gerald can still travel by plane but we consider the time in the air and we are sure to tell them in the air and we are sure to tell them his diagnosis and that we need a wheelchair for him when we get to the airport and we are first on the plane and the last off. We also allow extra time so if we get delayed for whatever reason it is not as stressful. So far our experience has been good.
Now that Gerald has a PEG I have to pack his carnation instant breakfast that he gets everyday to supplement his calorie intake and of course all of his meds. I also carry this on the plane. When we return from a trip, Gerald just likes to have his "quite" time and rest.
Fenton: Describe your initial reaction to Gerald’s diagnosis:
Leslie: Well, definitely my feelings were wide ranging; shock, fear, sadness, anger, disbelief and them determination.
Fenton: In conversations I have had with Gerald, it is rare that a sentence goes by that he does not talk about his wonderful family. How does that make you feel?
Leslie: We all agree that we have a wonderful family and we know that “challenges” like this can not be fought alone. It takes a support team of friends and family to help anyone get through a health crisis. I know I am glad and THANKFUL to have such a supportive family.
Fenton: How has Gerald’s diagnosis positively enhanced your family?
Leslie: I think a diagnosis of ALS (or any serious illness) gives a “wake up call” to those being affected. I have evaluated my life more closely lately and try not to “sweat the small stuff” as much. We all hear the saying regarding “live each day to its fullest” and most people say “Yeah I should do that!” but when you experience ALS you REALLY GET IT!!! Never postpone the future!
Fenton: Of all of Gerald’s many accomplishments, what stands out most in your mind?
Leslie: Well, he is MY dad!! He has accomplished so many things in his life from the business world to his work with the Boy Scouts of America but I would say that, most of all, the love for his family and friends is the most admirable. He loves them all deeply.
Fenton: What words of advice do you have for people (and their loved ones) coping with ALS - perhaps those who have been recently diagnosed?
Leslie: For our family the first couple of months were the most difficult. We were wading through all the tough emotions as well as trying to figure out the whole “ALS thing”- all the health care issues and new physical challenges. So I think telling newly diagnosed patients that they will get through all the overwhelming feelings and try to stay focused on the quality time with their family and friends. Live in the day and live it to its fullest!
