The very day about a year and seven months or so ago that I allowed my mind to think ALS and actually Google the words to find their true meaning was the day that ALS became part of me. It was January and it was right after my husband Bert had come home from a business trip and we had been sitting in our family room around ten at night after the kids were in bed. He was sitting on the floor Indian style and I was sitting on the couch and he said to me "I think something is wrong with my back". I remember it so clearly because when he said it his lip quivered and he seemed like he was going to get upset or maybe cry, and that was so unlike him. I knew this man so well, I mean we were best friends since I was seventeen years old and he had only one time been upset in all the years...he never even got sentimental, not even when the kids were born. And I remember it being different, like he wasn't really upset, but rather he couldn't control that lip quivering. He followed his statement with "my legs feel stiff, like they are heavy, they feel like they stick when I walk". I literally knew right then that something was wrong, and it wasn't his back and I just felt like this wave of something really aweful...that was the first night of so so many that I lost sleep. I of course didn't immediately think ALS, even as a nurse I had only known of one other person who even had the disease. The next day I began what would be the next six months of my life researching and that research started with Google, I typed in the symptoms he described, and the word spasticity popped up, then the causes of spasticity, an imbalnace of signals from the central nervous system brain and spinal cord to the muscles. Caused from cerebral palsy, traumatic brain injury, stroke, multiple sclerosis and spinal cord injury. The research took me to overactive reflexes and increased muscle tone, clonus, and so on...I was scared but not ready to admit what my gut instinct was saying. In retrospect I wish I wasn't so scared and he probably would have been diagnosed sooner. I was too afraid to even say ALS out loud, I didn't want to consider it, I went along with the doctors saying it could be a pinched nerve or a compressed disc, I wanted it to be that, I just kept thinking it had to be something that could be fixed easily even though I knew in my heart that it could be ALS. When the muscle twitching started in late spring I was literally in a panic but still trying to not over react, Bert and I both were panicked and pretty sure this was not a back injury. Finally in early summer we had the EMG and Nerve conduction study and began the road to an official diagnosis of ALS. So, imagine your body starting to spin out of your control. It is very strange because it is slow but yet fast one day your legs feel stiff in a few months you can't run or jump or step off a curb. Life is moving right along during this time period of diagnosis, it is hard to talk about what is going on because you don't really know yourselves. Fear is the best way to decribe ALS and the process from the first symptom to diagnosis to what lies ahead. Bert and I decided to write this blog together, we have committed to facing this disease, ALS, Amyotrophic Lateral Sclerosis as a team, as athletes; we decided from the beginning we will do what we always have done, problem solve and make things work! You either crawl in a hole and feel sorry for yourselves or you face this bitch head on spread awareness, raise money, participate in clinic and trials and learn from everyone else going through this how to come out on top. We are full of positive, we believe that we will come out on top of this whole thing...we don't know what on top means but we plan to win nonetheless. This journey has been a wild one so far, harder than any race either of use has ever done, but with a positive attitude and team work anything is possible. This brings us to the Ice Bucket Challenge.
All the families out there that we have either met personally or virtually living with ALS are amazing sources of inspiration. All the physicians, nurses, therapists, people involved in fundraising, research and really anyone dealing with this disease inspires us and gives us hope. The human race is strong, people can overcome, the possibilities are endless. Bert is strong, he inspires me; makes me feel like anything is possible. Bert gives me energy and confidence, he makes me feel like I can do anything...that's why I married him in the first place. He makes me smile, my kids make me smile. The support we receive daily from friends and family make me smile. The Ice Bucket Challenge makes us feel happy, hopeful, and supported! We already believe but this outpouring of awareness screams hope and possibility! We know there are critics, and hey we live in America and you are entitled to your opinion; but I hope the people out there with the opinions have met a family like us and know the fear of this disease. Bert had a hard time when these videos started. He is living with ALS, he is the one who is dealing with the failing body, adjusting to the losses of function. He had only just reluctantly started using the power wheelchair at soccer practice, he felt like there was ALS all the time. He still has strength in his legs, but they don't work to walk very well, they are stiff and spastic and not coordinated. I talked him into using the power chair at soccer practice so he could have more freedom and move around the field easier. He uses a walker at home and sometimes takes it out of the house, but he was not fully ready to give up his walking stick and my hand. I don't know that I was either, but rule number three safety won out. So, when I began talking about this Ice Bucket Challenge and showing him videos he was quiet. One day I actually texted him and asked him what was wrong...I could sense his quiet and was worried. He texted back, that he felt like this disease was in his face all the time, all the videos and events, and he felt annoyed, he said he knew he should feel happy but he felt at that moment that any sense of normalcy had been taken away. Then a few minutes later I got another text it said...The dinners are fine though. That text made me giggle.
My co-workers have been making us dinners and it has really been the best. The food has been delish, but even more than that we have been eating together at the table and talking about how yummy our dinner is and stuff other than ALS. It not only has brought us great food and some real nutrition but it has brought normalcy, something that is super hard to come by with this disease. Bert was letting me know that he was just fine with that support:)
I understood his feelings and I gave him time and space from the Ice Bucket Challenge, and then a couple of the soccer boys wanted to do it, and that was the turning point for Bert to open up to the support that was being shown. Soccer and our soccer team is Bert's only other sense of normalcy, he loves the sport of soccer and when we are at practice it's about the only time I can think of where we almost forget about ALS. If the boys were doing the Ice Bucket Challenge then Bert was on board. This lead to so many videos of support, and we are having so much fun watching them...I literally giggled at every video like it was the first one I saw. The kids were excited, Sophia wanted to take the challenge, my parents were in and their video was funny! My co-workers were all on board, high school friends, family from afar, our nieces and nephews, so many people bringing awareness to this awful disease. Then came the celebrities and every channel and news article had someone talking about ALS and this Ice Bucket Challenge. Two young men were brave enough to put themselves and their diagnosis of ALS out there and it validated what all the people living with ALS wanted...people to pay attention to what they are going through, to take a minute and ask what is this disease, what does ALS stand for, what does it do and hey maybe some of those people and celebrities are asking themselves what they can do to stop this disease. It may have started out as awareness but it has evolved into so much more, there were donations to go along with the Ice, a lot of donations! Money needed for research for equipment, resources to find a cure, a treatment and to help the people living with this disease LIVE. Bert was seeing all the support and awareness and money being brought by this Ice Bucket Challenge and he felt validated, he felt supported, we both felt possibility. Bert named our blog webelievefightals, because he believes that we will navigate on this journey with belief, trust, and support...he believes that we will win no matter what. Steve Gleason took the Ice Bucket Challenge naked, he upped the ante, the Kenndy's dumped ice on their heads, Jimmy Fallon, Justin Timberlake, football players, hockey players, athletes of all sports, politicians, Bill Gates, musicians, actors and actresses, people from all over the world dumping ice on theirs heads, talking about ALS and donating. And most of all friends and family dumping ice on themselves talking about Bert and challenging others to find out about this disease ALS and donate.
I have glanced at some of the negative articles, Bert and I don't care what people think. We are sure that there are some out there who don't understand what is happening here with this viral Ice Bucket Challenge, but we understand, we know who loves us, we feel the support, we see the many people around the world talking about ALS and we see the stats on the donations, the millions raised and we are happy and hopeful! Bert and I will remain steadfast, we will always find the positive, we will always believe, and hope. We don't care what people think or if they doubt. We are athletes at heart and we will never give up. Bert is going to take the Ice Bucket Challenge on Monday, he has something to say about ALS and he has nominees to call out. As for me I already dumped my Ice and I will continue to raise money for ALS, I will continue to raise awareness and I will continue to stand by my husband's side and fight so that he can live with ALS and enjoy life, laugh, love and believe that anything is possible no matter what. God gave us this life and we plan to live it and be thankful for every minute of it. There is always, always something to be thankful for...find it.
xoxo Jennifer and Bert
All the families out there that we have either met personally or virtually living with ALS are amazing sources of inspiration. All the physicians, nurses, therapists, people involved in fundraising, research and really anyone dealing with this disease inspires us and gives us hope. The human race is strong, people can overcome, the possibilities are endless. Bert is strong, he inspires me; makes me feel like anything is possible. Bert gives me energy and confidence, he makes me feel like I can do anything...that's why I married him in the first place. He makes me smile, my kids make me smile. The support we receive daily from friends and family make me smile. The Ice Bucket Challenge makes us feel happy, hopeful, and supported! We already believe but this outpouring of awareness screams hope and possibility! We know there are critics, and hey we live in America and you are entitled to your opinion; but I hope the people out there with the opinions have met a family like us and know the fear of this disease. Bert had a hard time when these videos started. He is living with ALS, he is the one who is dealing with the failing body, adjusting to the losses of function. He had only just reluctantly started using the power wheelchair at soccer practice, he felt like there was ALS all the time. He still has strength in his legs, but they don't work to walk very well, they are stiff and spastic and not coordinated. I talked him into using the power chair at soccer practice so he could have more freedom and move around the field easier. He uses a walker at home and sometimes takes it out of the house, but he was not fully ready to give up his walking stick and my hand. I don't know that I was either, but rule number three safety won out. So, when I began talking about this Ice Bucket Challenge and showing him videos he was quiet. One day I actually texted him and asked him what was wrong...I could sense his quiet and was worried. He texted back, that he felt like this disease was in his face all the time, all the videos and events, and he felt annoyed, he said he knew he should feel happy but he felt at that moment that any sense of normalcy had been taken away. Then a few minutes later I got another text it said...The dinners are fine though. That text made me giggle.
My co-workers have been making us dinners and it has really been the best. The food has been delish, but even more than that we have been eating together at the table and talking about how yummy our dinner is and stuff other than ALS. It not only has brought us great food and some real nutrition but it has brought normalcy, something that is super hard to come by with this disease. Bert was letting me know that he was just fine with that support:)
I understood his feelings and I gave him time and space from the Ice Bucket Challenge, and then a couple of the soccer boys wanted to do it, and that was the turning point for Bert to open up to the support that was being shown. Soccer and our soccer team is Bert's only other sense of normalcy, he loves the sport of soccer and when we are at practice it's about the only time I can think of where we almost forget about ALS. If the boys were doing the Ice Bucket Challenge then Bert was on board. This lead to so many videos of support, and we are having so much fun watching them...I literally giggled at every video like it was the first one I saw. The kids were excited, Sophia wanted to take the challenge, my parents were in and their video was funny! My co-workers were all on board, high school friends, family from afar, our nieces and nephews, so many people bringing awareness to this awful disease. Then came the celebrities and every channel and news article had someone talking about ALS and this Ice Bucket Challenge. Two young men were brave enough to put themselves and their diagnosis of ALS out there and it validated what all the people living with ALS wanted...people to pay attention to what they are going through, to take a minute and ask what is this disease, what does ALS stand for, what does it do and hey maybe some of those people and celebrities are asking themselves what they can do to stop this disease. It may have started out as awareness but it has evolved into so much more, there were donations to go along with the Ice, a lot of donations! Money needed for research for equipment, resources to find a cure, a treatment and to help the people living with this disease LIVE. Bert was seeing all the support and awareness and money being brought by this Ice Bucket Challenge and he felt validated, he felt supported, we both felt possibility. Bert named our blog webelievefightals, because he believes that we will navigate on this journey with belief, trust, and support...he believes that we will win no matter what. Steve Gleason took the Ice Bucket Challenge naked, he upped the ante, the Kenndy's dumped ice on their heads, Jimmy Fallon, Justin Timberlake, football players, hockey players, athletes of all sports, politicians, Bill Gates, musicians, actors and actresses, people from all over the world dumping ice on theirs heads, talking about ALS and donating. And most of all friends and family dumping ice on themselves talking about Bert and challenging others to find out about this disease ALS and donate.
I have glanced at some of the negative articles, Bert and I don't care what people think. We are sure that there are some out there who don't understand what is happening here with this viral Ice Bucket Challenge, but we understand, we know who loves us, we feel the support, we see the many people around the world talking about ALS and we see the stats on the donations, the millions raised and we are happy and hopeful! Bert and I will remain steadfast, we will always find the positive, we will always believe, and hope. We don't care what people think or if they doubt. We are athletes at heart and we will never give up. Bert is going to take the Ice Bucket Challenge on Monday, he has something to say about ALS and he has nominees to call out. As for me I already dumped my Ice and I will continue to raise money for ALS, I will continue to raise awareness and I will continue to stand by my husband's side and fight so that he can live with ALS and enjoy life, laugh, love and believe that anything is possible no matter what. God gave us this life and we plan to live it and be thankful for every minute of it. There is always, always something to be thankful for...find it.
xoxo Jennifer and Bert
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