“We are so VERY grateful for what you have done to give Debbie some recognition. She absolutely loved the prize package. The dinners too. They are delicious and great for a Caregiver. We had our 40th Wedding anniversary on Sunday so we had a friend take the picture. Please tell OJ we love his book. VERY inspiring. Please pray for continuing strength for my Caregiver Debbie as i can’t live without her.”
–Larry McCravy, husband of Debbie McCravy, winner of the ALS Champion Caregivers campaign
“Heather and I would like to express our sincere appreciation to you, OJ and Chanda for all the kindness and generosity you showed us on Saturday evening [Three Rings for O.J. event, 9/13/14]. The Eye Gaze device is a godsend. When Heather began losing her voice, we were panic stricken. She can now continue to communicate with her friends and family.
On behalf of every ALS patient whose life you have touched, we thank you . Words cannot express.”
– Heather and Bob Kuchta, received Eye-Gaze device
“I was diagnosed with ALS in March 2006 by John Hopkins Hospital. I was referred in 2012 to the Brigance Brigade Foundation. Since that time, I have appreciated the Foundation for helping me to have more mobility. Without their assistance I would not be able to leave the house, the Foundation has provided me with a wheelchair ramp which is truly a blessing.
I think the Foundation is wonderful and it should be supported so it can continue to benefit everyone with ALS disabilities.
I can truly say without the Foundation’s help I would not have the flexibility to leave my house without the ramp. I am thankful for the Foundation every day.”
–Effie Harris, received patient service support to build a ramp on her home
“The Brigance Brigade Foundation helped me by remodeling my bathroom. I’ve been very fortunate to live as long as I have, and have the help and support from the Brigance Brigade Foundation. It makes my everyday quality of life better because the Foundation has helped me. They are remarkable people. They don’t have a job, they are angels at work helping people like us.
Once you’re in this position, you want to give up. Not me. I’ve always had a goal and a dream. I won’t give up and it’s the reason why I know I can do this even though I can’t walk.”
– Anthony Gegor, received patient service support to remodel his bathroom
“In 2010, I was diagnosed with ALS (Lou Gehrig’s Disease) and am now living at home and living due to my ventilator. I have no use of my arms and legs and am dependent on my husband and an army of home health care workers, who are not inexpensive and not covered by Medicare or our secondary insurer.
I first encountered O.J. Brigance, an ex-NFL linebacker, who I learned was also a victim of ALS, in the post-game show after the last Super Bowl. In that short appearance I learned of his foundation, the Brigance Brigade Foundation, which assists persons with ALS. Most philanthropic organizations consider ALS as a hopeless cause, but not Mr. Brigance and his organization. He is sincere about helping a person with ALS and I am sincerely grateful to the Brigade for paying for three months of home health care for me.
Due to the Brigade’s generous gift to us, we were able to get caught up on bills and not have to worry for three months where the money was coming from to pay our very deserving and hard-working home health care workers. We are very grateful and have been blessed by the Brigade.”
–Annetta Kastner, received patient service support to have home health care services
“The Brigance Brigade has been there for me from the day I was diagnosed with ALS. During this difficult time it was good to know that there was an organization that offered support and help. Most recently, the Brigance Brigade provided me with a Dynavox machine so that even though my natural voice is getting weaker I can still talk with my children, family, and friends.
–Judy Herman, received augmentative communication device
“We were lucky that my father was in the military so his ALS was considered 100% service connected. Therefore, the VA paid for all his care, including his time in the nursing facility. I know how hard it must be for many families to not have this kind of support. I have seen how expensive simple things can be and how necessary they are. I first heard about the foundation on the Justin, Scott, and Spiegel morning show on 98 Rock.
I have participated in three races and my husband, Gary, participated in two…so we have five medals hanging in our kitchen. The first year, my husband gave his medal to my father, which he hung in his room at the nursing home. I made sure to get it back after his death. We also have a collection of the race shirts, hats, blankets, glasses, and towels. I enjoy using them when I am out and about so that I can use them to strike up a conversation with others about ALS and the foundation. We live in Hagerstown and I work in Rockville, so many people are not familiar with the foundation.
Like so many others, I participated in the ice bucket challenge (and donated to the BBF, the Philadelphia Chapter of the ALS Association, and directly to the clinic that treated my father) and wrangled many friends and family into participating as well. I am so pleased at the increased attention that this horrible disease has received over the past few years. It has been on the back burner for far too long.
I, myself, got genetic testing through a research grant at the University of Pennsylvania Hospital several years ago. It was a long and emotional process and I will never regret doing it. The day I received my negative results was the happiest day of my life (sorry Gary). But with those results came guilty feelings. Here I was so excited that I would probably not have to go through the agony that I witnessed my father go through. He knew that I was having the testing done but telling them that I would not suffer his fate was bittersweet. I tried not to act too elated because I didn’t want to throw it in his face but I know that he was happy for me.
My father, Fred, actually had frontotemporal dementia in addition to the ALS. This made the last few years especially difficult. There were times that he would stare at me with a blank expression. I didn’t know if he didn’t recognize me or if it was because his facial muscles were just too tired to make any type of expression. I am an only child and my parents divorced a few years prior to his diagnosis. It was my mother that suggested to him that he get tested. Apparently, my grandfather also died from ALS, as well as a few other family members. He was appalled at her suggestion but relented eventually. After his diagnosis, he had genetic testing done and it was determined that he had the C9ORF72 gene mutation.
It was very difficult at first because he lived alone and kept saying things like “when I get better.” How do you tell someone that they will never get better and that their body will continue to betray them until they finally die? At first it was little things. His leg would start aching. He would fall down the stairs. He would knock things over. His speech would get more and more garbled until it finally disappeared completely (I still have one his last voicemails saved on my phone). He started using a walker before transitioning to a traditional wheelchair (he would wheel himself around the home silently flirting with the nurses). He briefly had a reclining wheelchair when he could no longer hold his head up and refused to wear the (ineffectual) neck brace. The last month or two, he rarely got out of bed. Trips to and from the ALS clinic required a stretcher and ambulance. He had an advanced directive prohibiting the use of any life sustaining measures, other than palliative care.
I will never forget the phone call on Thursday, 09/17/15, around 10:00 am. The Hospice nurse would call at least once a week with updates (I live in Maryland and he refused to leave Pennsylvania). She said “I’m sorry to tell you that Fred died.” That was it. No warning. No softening the blow. No compassion. Just cut and dry. I was working from home that day and my husband was sitting in my office working on his computer. I immediately stood up and asked her to repeat herself. I felt so numb. They had told me that once he started receiving morphine, that I should expect the end within a few days. He never went on the morphine. They bathed him and put him back in bed to watch tv and he was just gone. Even when you know it is coming. Even when you know it is best for them to no longer suffer. Even when you think you are prepared. You are never really prepared. It doesn’t matter how old you are or how old they were, nothing really prepares you for that moment.
That is why I run. That is why I donate.”
“That horrible day in the fall of 2009 will always stay in my mind forever.
I was a junior at Oldfield’s Boarding School in Glencoe, MD. Since it was out in the country, the cell service was horrible and I remember having multiple missed calls from my dad. I had to use the day student locker room to use a landline.
When my dad picked up, I could hear the tears and the fear in his voice. He said, “Olivia I am so sorry to tell you this, but your mom has something called Multiple Sclerosis.”
We spoke on the phone for a long time as he explained the situation. I remember all the thoughts going through my head.
“My mom is sick, no she can’t be.”
I could not believe this was happening when it was supposed to be an exciting time in my life. I was looking forward to finding the perfect college and to finally leaving the house. I was supposed to be excited about living on my own and finding myself. Instead, I was terrified to leave my house and the unknown that came with it.
As junior year became senior year, my mom continued to get worse and the medicine was not working. My fear of leaving continued to heighten.
I played Varsity Lacrosse and Tennis, so sports were huge part of my life and my mom was my biggest supporter. As her conditioned worsened, she was able to come to less games.
I continuously thought, “Why me? What did I do to deserve this to happen?”
My mom traveled all over the country that year going to the NIH, Johns Hopkins and finally, Mayo Clinic. She got test after test because she was determined she did not have Multiple Sclerosis. No surprise for those who knew my mom, she was right. At this point, I got the second worst phone call of my life.
“Olivia I am sorry, but your mom has ALS.”
At the age of 18, I had never heard of these diseases. I had so many questions. With my entire family scared, I tried to not bother them and stay out of trouble. The whole time I kept asking what does this mean. Looking back now, I believe my dad was afraid to tell my sister and me what all of this meant for our future, trying to protect us.
While this was happening, it was time to choose where I wanted to go school. My mom and I both loved the warm weather, so I applied to all the schools in North Carolina and South Carolina, as well as two in Florida. Unlike most seniors, I chose the school that was easiest for me to get home, which was the University of Tampa. I had many opportunities to attend a school where I could play lacrosse, but at this point, that was not what was most important to me.
Now I am so grateful for this decision, even though seven years later it not as easy and cheap to travel to Baltimore. Throughout my years in undergrad, I would tell my teachers on the first day of classes that my mom had ALS. I would let them know while I did not predict anything happening throughout the semester, ALS is unpredictable and I might have to go back to Baltimore unexpectedly.
This was one of my best decisions. I learned being honest right away made going home okay. This only happened a few times, but having my teachers know my situation made things much easier.
Second semester freshman year, my mom noticeably got worst. She had broken her hip and became wheelchair bound. My dad started the process of finding aids and speaking with doctors about all the services our family needed.
At this point, I was barely making it through my freshman year. I wanted to move home, but my mom would not let me – she know I was where I needed to be.
With the help of many different people, we found an aid for my mom, a free wheelchair, and a handicapped accessible van. We also received other equipment to make sure my mom was as comfortable as possible.
When May approached, I was home for the summer and was on the hunt for a job. However, our current aid turned out to have some secrets of her own, so we dismissed her.
Instead of working the job at the local clothing store, I became my mom’s aid until we found a replacement. For three months, potential aids came to our house. Many of them were expecting to work for someone older, where they did not have to do much work. However, my mom was in her 50’s and she wanted to do things. It wasn’t until the end of the summer that we found three amazing individuals, who would become life-long friends.
As the years went on and the disease worsened, my mom became angry, frustrated and depressed. She lost the ability to communicate and as her friends slowly disappeared. These aids became her friends.
I also had friends who felt I was too dramatic for them and they are people who are no longer in my life. My mom could not even talk to the friends she once would dance, play tennis, and talk on the phone with. It was heart breaking to watch. My mom tried to keep control of her life, but there were so many areas she could not control.
Now in my senior year at Tampa, I would get crying phone calls from my sister, dad, and mom. So many times I felt I was everyone’s punching bag because we were all so frustrated. My fears turned to anger. I was so angry with who my family became and how hard it was for all of us to push forward together. I was also so frustrated that my mom was so focused on the past instead of trying to live every day to the fullest. We were fighting all the time. I privately texted her aid to see how she was doing to avoid taking to my mom.
As graduation approached, I had not talked to my mom in a month and did not know if she was going to attend my graduation. Of course, she did, and I am so thankful.
Around graduation I gained acceptance that I could not change my mom’s situation and started to understand my entire family was going through their own grieving process. At this point, I had my mom in my life for about another year. Although she could not talk much my mom’s aid Narrissa had come to know my mom so well that she gave advice or had the conversation my mom and I would have had, as my mom listened. Our relationship was better than ever.
On Sunday, May 3, 2015, I got a call from multiple family friends, Narrissa and my dad, all advising me to come home, saying the situation was really bad. Hospice had predicted my mom had about two weeks left.
Unable to get away from work right away, I stayed in Tampa until Thursday, May 7, 2015. I got into BWI around 5pm where a family friend got me and took me right home. On Friday, May 8, 2015, around 11am, I was lucky enough to be by my mom’s side when she took her last breath. She had not look that peaceful in years.
As hard as it was to say goodbye, everyone around her knew she was in a better place. My mom had planned everything to make the grieving process easier. When I say everything, I mean it; putting away money for birthday presents for my sister and me, as well as something as coordinating the direction of the stage in her favorite spot at our country club for her memorial service.
Now almost two years later I realize that acceptance of the disease is only the first step in grieving. Learning to move on without my hero has been so hard – accepting she will not be there for my graduation from graduate school, at my wedding, or for something as simple as a phone call on a stressful day has been very hard. I also must accept my dad might choose to move on eventually with some else.
The biggest struggle is learning to live again. Not being afraid of when that horrible phone call comes through saying something has happened. Learning to live not in fear of the unknown. ALS doesn’t just affect the patient, but everyone around them. I am choosing to work in either nonprofit development or school development because I want to help as many people as I can. I live every day to make mom proud and to let the memories and her spirit live on. Although it is not easy, I try to remember one sentence she told me, “Whenever you see a butterfly that will be me watching over you!”
-Olivia, daughter of PALS