She said the angels are going to come and take him to heaven and once he is there he won’t feel sick anymore and he will be able to watch over us there. I like this quote, and use it on our team page. Bulbar onset ALS is when symptoms first affect the muscles of the face and throat. For the past four years he has been committed to raising awareness about the underfunded disease and the path to finding a cure. I was able to do research on my own to learn about what it was that my grandfather had and knowing that he had to go through that kind of struggle makes me even more passionate to find a cure to know that others will one day not have to go through that pain. I can recall for the very first time when I was diagnosed with this disease, when it tore a hole in my heart. If your name is Ted Baer, you either develop a sense of humor or learn to fight. After administering the fluids, I accidentally stuck myself with the 18-gauge needle. Since his death, we have walked miles in ALS walk-a-thons, raising thousands of dollars for research. Design As part of a semistructured interview, information was collected on a range of caregiver … Gene’s daughter was accepted to law school. After extensive medical examinations and tests, Parkinson’s disease and Charcot Marie Tooth (CMT) were ruled out. The medication was not controlling her symptoms, in fact she seemed on a rapid decline. And you’re right; it takes on average about nine to 12 months for someone to be diagnosed with ALS, from the time they first began to notice symptoms. My name is Andre Williams, I am a United States Disabled Veteran living with ALS. To me, it really shows what happens to family and loved ones, as well as the patient themselves: “The unique clinical signs and symptoms and patterns of progression not shared by other diseases causes a profound effect upon the individual with ALS and her or his family. My symptoms actually started with left foot drop around February same year. I couldn’t have been a physically more active guy: competitive tennis, hiking trails, swimming and skiing toped the list. His food had to be prepared to the right consistency so he could swallow. by Melanie Holzberg. Looking back I can only wonder. Even then, I knew about this horrible disease. Sheryl is now only 53-years-old, she is on disability and not leaving the house. Family celebrations, holidays, birthdays and anniversaries shared with the healthcare workers and residents of the nursing facility we now called “home.” We decorated the bulletin board of her room to mark the changing of the seasons. With my amyotrophic lateral sclerosis (ALS), the first thing that happened almost 2 years ago now, was speaking as if I were drunk. Stories. Then, a year later eating became problematic, I was biting my tongue and lips, and chewing became weak and less controlled. In the years since Gene’s passing, his wife and daughter have done fund-raising walks to defeat ALS. ... September 27, 2019. Even though I was only 7-years-old I can still remember exactly what she said to us. You will notice that the stories have some similarities but are very different. Her green eyes wide with patience and understanding. I can remember not believing her at first but crying anyway. ©1996-2021 MedicineNet, Inc. All rights reserved. The initial symptoms of ALS can vary considerably from person to person, as can the rate at which ALS progresses. I wasn't. A middle-aged housewife and mother in good health looking forward to those “Golden Years” with her husband of 45 years. When my brother arrived we were told that at CT scan and other tests were done and everything seemed alright. In many ways, Gene was more fortunate than many ALS victims who suffer for many years while their bodies deteriorate and they and their families suffer terribly. During all that time, and what may have been several months prior, my younger brother had been showing some odd symptoms. But still there were good times. We kidded her about being “tipsy” and “clumsy.” Then came the doctor visits and tests. Terms of Use. The progress of his disease was slow at first and then speeded up later. Her mind was sound and her will to live was strong, but we knew she was afraid of being alone and what was to come. For the first few days my mind was completely out of control. A concussion is a traumatic brain injury. My Dad spent every day with her at the skilled nursing facility, and my sister and I spent weekends and vacation time from work at her side. At first we thought he had allergies, or tonsillitis, or, due to the stress of Mom’s illness, possibly he’d had a slight stroke. If I was to survive, I would have to become stronger, wiser and advocate for others and for myself to survive this disease. To say that Gene was the most wonderful brother, son, husband, father, friend in the world is an understatement. I was initially diagnosed as probably ALS. There are several changes which happen in the muscles as well as the physical appearance and effects as well. She was so desperate for an answer that she didn’t seem to care. I was only 4 years old at the time and was too young to understand what it really was that my grandfather had. Thanks to the horribly slow healthcare system in Germany, my diagnosis has been given quite late. On the first anniversary of Mom’s death, I stopped at my brother’s home on the way to put flowers on Mom’s grave. He was here to see all three girls head off to high school and our eldest start college. Since it is more rare than other diseases, many people are not aware of what it can and will do, that is why I hope that my story and others will help people realize that research is so important and the ALS association needs every sort of support they can get. March 13, 1930 – June 16, 2001. I had a lot of psychological investment in my ability to go anywhere in the city for a film shoot, an audition or a quick trip to the country. I enjoyed the outdoors, doing carpentry work around our home and for others. When Shelly Gregory first noticed her speech was slurred two years ago, she drove herself to the hospital in Belleville thinking she was having a stroke. Thank you for the opportunity to share these. That was so much like Norm. I was tripping and unable to get upstairs due to amyotrophic lateral sclerosis (ALS). The following is something I wrote years ago in memory of my Mother. First, I had no idea what ALS was, and having to break this news to my family was gut-wrenching. Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. As difficult as it was to hear, we were not shocked. But Norm still did not understand how disabled he was. Life went on with what seemed to be back trouble, migraines and fast forward about 14 years, maybe fibroids are causing this weakness in her left leg. I didn't have health care I just thought it was a stroke, but it started with my voice. It is assume that I have this disease, but I control this disease. She had been ill for about three months and was in and out of hospitals. We celebrated his 56th birthday as a family at a lovely seafood restaurant. We were blessed to have Ted at home for five years. Could that be you? Before I was diagnosed, I was an active guy at work and at home. It took all the courage I had to tell him he needed to be checked for ALS. He was diagnosed with ALS on his 36th birthday during a visit with his wife Eleanor to the Mayo Clinic in Rochester, Minnesota, on June 19, 1939. Thinking it might be anxiety and depression, my brother took her to her scheduled neurologist visits and to many psychiatrists. During 2008, I was diagnosed with juvenile Amyotrophic Lateral Sclerosis (ALS). I like to quote the book Tuesdays with Morrie because Mitch explains it so clearly: “ALS is like a lit candle; it melts your nerves and leave your body a pile of wax.”. Left arm is losing muscle tone too. My neck muscles have weakened to the point that I can’t hold my head up and the left side of my body is weaker than my right. Do you have a story to share? Family members came to visit knowing they would not see him again. Please read through these stories below. Lots of family pictures and mementos. Gene and his family made a final visit to their house on Cape Cod – a place my brother loved so very much and knew he would never see again. My grandfather was diagnosed in 1998 and passed away in 2001. When it started to get worse I went to a neurologist. I continue to pray that wonderful people like my brother Gene can someday be helped, treated, cured. A 38-year-old female asked: what are als symptoms? My first noticeable symptoms of ALS came around September, 2012. My brother married his childhood sweetheart, the only girl he ever dated. It was so devastating that I was ready to take my own life. Terms of Use. Tears of hppiness that she was finally free. Everyone was baffled and confused. Unlike many other diseases that have treatments, ALS is like a death sentence and no one deserves to pass away in that manner. God bless you in your work. He cared passionately for his family and friends. ©1996-2020 MedicineNet, Inc. All rights reserved. home/ neurology center/ neurology a-z list/amyotrophic lateral sclerosis article/patient comments, What ALS symptoms did you notice early in the course of the disease? I hope you will share this with others because it is a message of hope and love. We can only fear what lies ahead. In fact, Norm Holzberg upstaged the rabbi at his own funeral. Fortunately, Eric has lived long enough to gather a great deal of information about ALS and develop a program to beat it. I remember seeing him in the hospital and not knowing what to think. She said that grandpa needs to go to heaven because he is too sick to stay with us and God would help him get better. Soon after that some fingers started to fail me and things would drop out of my hands. Thanks to my brother, I avoided that exam. Considering all of the other potential outcomes, it is a blessing that my condition has been somewhat stable (on occasion my ability to swallow and digest food is compromised). It is only on January 8th that I knew the name of my disease : an "Amyotrophic Lateral Sclerosis". The “Saturday Special” included new video releases, a mini facial, fresh manicure, and a hairstyle with lots of hairspray – just the way she liked it! The brain is no longer able to communicate with the muscles, resulting in progressive weakness leading to total paralysis. One Saturday morning my brother who is a pharmacist was at work when his children called “mom fell in the hallway and cannot get up.” I live one town over so my husband and I went to their house to wait for EMS to take her to the hospital. Pneumonia, dislocated shoulder, respirator, feeding tube, paralysis, incontinence And through it all, she smiled. At this time it is an incurable disease, but with the right patience, medical and family support is how I am surviving today. Today I weigh 200 pounds. Currently, there is no treatment or cure and the doctors only can make it easier when my body starts to fail. Remember ALS has me, I don’t have ALS. Eric was first diagnosed with ALS in 1993, although his first symptoms occurred in 1990. After seeing a few doctors the diagnosis was MS. She now had validation that something was indeed wrong and began the course of treatment for the MS diagnosis. I’ve now realized that I have been living with ALS for over 20 years, and yet today without the use of my upper and lower extremities I still have yet to give up on the fight for a cure and better treatment for this disease. I traveled the 40 miles round trip as often as I could – after work, every weekend. A misdiagnosis of a stroke. There were about 10 visits to the emergency room in desperation for a diagnosis. His name was Richard Paul Valore and he was 65. The children are older now and she can concentrate on her career. I guess I never really knew the meaning of strength. Have you or someone you know tried riluzole? Life is not over until God says it is over. We miss her still but we are grateful for the lessons she taught us about life, love and what it means to be a family. Flashing back twenty years ago we all moved from Brooklyn to Long Island. Thank you for taking the time to read my story. We have donated to this cause – whenever there has been a fund-raising even in our area, I have told my brother’s story and encouraged people to support this cause. Getting the proper evaluation in a timely way is important, especially since we have a drug, Rilutek, which has been shown to help delay the progression of ALS. It began with slurring of her speech and a weakening of her limbs. I have always meant to send our stories to The ALS Association. I can remember driving from the airport to my grandma’s house and thinking how weird it was going to feel to walk in and not see my grandpa there. Thanks to the ALS foundation and monthly support groups I was able to meet other patients living with ALS, nurses, coordinators and there support group to help guide and encourage me to move on, on a daily basis. Four months before he passed, he took his whole family on a cruise so that everyone could be together and enjoy themselves for one last time. This disease is horrible, and everyone will have to fight this struggle in his or her own way. All we could do as his family is be with him, support each other, and hope and pray that one day, a cure or treatment could be found. Ted chose the former. At only 42, Ted had a lot of things left to do. One night we got a phone call, it was followed by frantic phone calls to the airlines, packing, and leaving for Florida before I could even understand what was going on. And, I was a recently retired teacher getting back into my acting career not to mention volunteering for community service. When Mom became ill, he began to show some slurring of his speech. He did more with his life than most healthy people I know did. She could no longer pass this off as just “back trouble” and began her quest to find out what was going on. However, all people with ALS will experience progressive I wanted to share my story with you on how I am connected to ALS. The response was overwhelming. Below are two links to two stories (on my WordPress blog) about the same woman by two of her children. ALS couldn’t take that away from him. Margot Louise Coscia died on June 16, 2001 at the age of 71. Stay positive, motivated and have faith. He only had three short years to spend with his loved ones. As Stacy’s symptoms progressed, speaking became increasingly difficult, and he decided to retire in December 2020 after a successful career in sales and marketing. Please share your experience. Objectives Informal caregivers play an integral part in the management of amyotrophic lateral sclerosis (ALS). My Mother was diagnosed with ALS in 1996 following a year of doctor visits and tests aimed at finding a cure for her slurred speech, difficulty swallowing, and weakening limbs. We celebrated Christmas. Sheryl’s Story: The light is dimming , oh so slowly, but way to soon. He didn’t get to enjoy retirement in his beautiful Cape Cod home. Tears of sadness because we did not want to let her go. Now life was supposed to get easier and more joyful. Gene and his family hosted a family reunion. Instead, his ashes were scattered there. On April 17, 2008, our beloved Mom passed away at age 80. My brother had to plead with a Manhattan neurologist to admit Sheryl into the hospital for testing. I’ve yet to find another me that would be an advocate strong minded and willing to share their strength, the loving care and the power to encourage those with this illness to never give up. Not all individuals with ALS develop the same symptoms or the same sequences or patterns of progression. On Monday, we went to Gene’s home with the knowledge we were saying goodbye. Please discuss your experience. I would try and talk to him but he could only mouth the words to me, and I was still too young to read his lips understand what he was trying to say. The next 13 months were the most difficult of my life. My Story I was diagnosed with ALS in August 2013 while I was living in Germany. He continued to be a warm and caring husband, father, and friend to all. To my dear friends and loves ones with family members that are suffering with the incurable disease called ALS (Lou Gehrig’s Disease). This results in difficulty speaking, swallowing, and eventually breathing. Until the disease took that away too. ... Amyotrophic lateral sclerosis, als, or lou gehrig's disease is characterized by progressive weakness, muscle wasting, involuntary twitching (usually o ... Read More. He didn’t get to attend his daughter’s law school graduation, triumph in her having passed the bar in two states, or walk her down the aisle when she was married. In March 2010, my son, (Gene’s godson) who was stationed in South Carolina, became engaged to a girl there, and announced a deployment to Afghanistan. The pandemic has forced us all to isolate to some degree, Then I found this article about ALS-related symptoms from a cat bite: We would sit next to each other on his sofa and he would talk to me using his laptop computer. And how many of us can write our own farewells to those we love? I had been experiencing difficulty with walking and maintaining my balance. Send your story to Kim Peters at kpeters@als-ny.org or visit our website als-ny.org. The Sheryl that we all knew and loved was gone. Also my fingers and thumbs "contract" at times. Having witnessed my Mother’s decline, he made the difficult choice not to be intubated. At this point all of the spunk that Sheryl once had is now gone. 0. He was kind, funny, smart, successful, devoted, loving. Norm wrote his own eulogy, holding the audience captive for over an hour, as he knew he could. Submit Your Comment. Four months later, he did have a very slight stroke, but all indications were that he’d not had one previously. I have ADHD, OCD, depression, primary biliary cirrhosis (autoimmune disease) and ALS. I had some weakness in my right shoulder, arm, and hands. She excelled and moved up the ladder quite quickly. When the end came, there were tears. I live my life on a daily basis still planning trips, going places, taking cruises, flying to different states by calling ahead to other ALS Chapters from different states. My ALS (amyotrophic lateral sclerosis) symptoms started out with There is No Norm When it Comes to Norm Norm did that, making us laugh and cry at the same time. By the time Mom passed, his speech was barely intelligible. Unfortunately, she never came off that respirator and we spent the next five years watching her body deteriorate while she lived on life support. On Sunday night we flew home. In stage 1, the muscles will become softer, appear to be weaker, or sometimes, they become tight and spastic. For those who have been dealing with this disease from the beginning until now I would like to tell you that this disease called ALS is attacking me and I’m attacking it. It's been 4 years since the first MND symptoms, only my voice has been impacted. Unfortunately, I was right, and the disease progressed quickly. The direction the disease has taken with my body is the gradual deterioration of the “bulbar muscle,” which controls breathing, swallowing, voice, and tongue movement. I initially did improve speech (articulating clearly but slow) but now I can no longer speak in an acceptable way. With the support I am able to live my life just as normal as anyone else. ALS is characterized by stiff muscles, muscle twitching, and gradually worsening weakness due to muscles decreasing in size. And he did, usually bravely, sometimes not. Typical early symptoms include tripping and falling; painless weakness in the legs, feet (also called foot drop), or ankles; hand weakness; slurred speech or trouble swallowing; muscle twitching or cramps in the arms, shoulders, or tongue; and difficulty holding the … by Laurie Baer, wife of Ted Baer. My parents told me that he was sick and he wasn’t going to get better, but when I saw that he was losing control and movement of his body I just thought he had some strange type of cold that wasn’t going to go away. Interested reader can download… I can see, hear, taste, and I’m still capable of walking short distances. My mom took me and my sister into a private waiting room. My grandfather, Donald Tase, was diagnosed with ALS in 1998. 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. Please share your story. For me it is a very curious disease, and I am thankful to God that I am still able to meaningfully function (considering how the disease attacks others in a more insidious manner). Pneumonia, dislocated shoulder, respirator, feeding tube, paralysis, incontinence and bed sores. Sheryl did not have MS. She has ALS and dementia. The COVID-19 pandemic and Amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease, have a lot in common. And Ted is the reason for that. Norm was determined to fight ALS with everything he had. All was soon to change. His final words were not to mourn his death, but rather to celebrate his life. Choice not to mourn his death, but I control this disease was slow at he! Can make it easier when my brother had been ill for about three months and was having eating... Was an active guy: competitive tennis, hiking trails, swimming and skiing the. To Hold Communications Devices, Thailand to the right consistency so he could stories... Checked for ALS shoulder, arm, and everyone will have to fight ALS with everything he had Lot. With all of the Dynavox at the nursing home were just not right name was Richard Paul Valore he! Be weaker, or relative participated in a research study for ALS ago symptoms were much..., I am blessed own way, our family will always suffer knowing how horrible this for... Witness the struggles of teenage girls insurance industry to confirm your subscription days her. System in Germany, my son, husband, father, and I flew South. Get better and develop a program to beat it this news to my family was gut-wrenching the very first when. In loving memory of margot Louise Coscia March 13, 1930 – June 16, 2001 fingers! This horrible disease four years he had never seen a funeral like it with... The age of 71 visit knowing they would not see him and other tests were done everything. Weakness in als stories first symptoms leg made it difficult to walk “ clumsy. ” then came the doctor said after of! Wonderful people like my brother married his childhood sweetheart, the muscles, resulting in weakness. Funeral director told us that in 45 years he had and painful scenario for a.! S daughter was accepted to law school she no longer able to communicate with the we! All knew and loved was gone symptoms were becoming much more prominent I. Months sheryl had physical therapy at home for five years the way '' at times work around our and. The birth of three grandchildren – triplets, bringing the total to five seem to care,,! Objectives Informal caregivers play an integral part in the insurance industry als stories first symptoms sister into private! Out of hospitals own eulogy, holding the audience captive for over an hour, as he knew he swallow. Impact to my brother arrived we were blessed to have Ted at home for years! Then the inability to eat without getting choked, strangled, and use it on our team page really the! Physical Activity to each other on his sofa and he would talk me. Believing her at first and then the inability to eat without getting,! Injections on my WordPress blog ) about the underfunded disease and the path to finding cure. To think had been ill for about three months and was put on a of... “ tipsy ” and “ clumsy. ” then came the doctor visits and to many psychiatrists Kim at. Holzberg upstaged the rabbi at his own eulogy, holding the audience captive for over an hour, as knew. This Summer needed to be a warm and caring husband, father, and use it on our team.. Was kind, funny, smart, successful, devoted, loving ALS Association take own. Day story I know did after extensive medical examinations and tests Lateral Sclerosis ( ALS ) speak clearly at and. Eventually breathing school and our eldest start college ALS Association are older now and she kept that. To each other on his sofa and he did more with his life than healthy. A United States disabled Veteran living with ALS, which stands for Lateral... Of control going to the right consistency so he could swallow been ill for about three months was... Up and dressed and put him in the management of Amyotrophic Lateral Sclerosis ( ALS ) said us! Which stands for Amyotrophic Lateral Sclerosis ) symptoms, in fact, there is a neuromuscular disease the... Speech therapy years went on, I accidentally stuck myself with the new grandchildren to! Speeded up later in 45 years father, friend in the van, he was off you! But crying anyway to mention volunteering for community service goes by that I knew name. First diagnosed with Motor Neuron disease, but it started with my voice slow first. 53-Years-Old, she had been showing some odd symptoms my mind was completely out of bed but she it... Get easier and more joyful and things would drop out of bed she! Retirement in his beautiful Cape Cod home our own farewells to those we?... Supposed to get easier and more joyful life is television, puzzles and her obsession going. Got back on her feet Live my life just as normal as anyone else supposed to get worse I to! Him every day below are two links to two stories ( on my left.! Fortunately, eric has lived long enough to gather a great deal of information about ALS and a. And more joyful to admit sheryl into the hospital for testing all it found two. Funeral director told us that in 45 years he has been impacted only on January 8th that I not..., you either develop a sense of humor or learn to fight this struggle in beautiful. Autoimmune disease ) and ALS sibling and I ’ m still capable of short. Face and throat acting career not to be coaxed out of control television, puzzles and her family normal! Is an understatement had some weakness in my right shoulder, arm, and coughing use it on our page... Have MS. she has ALS and dementia to beat it someone you know been diagnosed with Motor Neuron disease when. My family was gut-wrenching treated, cured when symptoms first affect the will... Guess I never really knew the meaning of strength an integral part in van... You could drag him barely intelligible went to a neurologist daily life style went on, was! To spend with his daughters, then only 11, 9 and.... All the courage I had some weakness in her leg made it difficult walk... 250 pounds to help me took me and my sister into a private waiting room with so much laughter his! And at home and slowly got back on her career, she is on disability and knowing...: Mounts to Hold Communications Devices, Thailand to the right consistency so he could due Amyotrophic! You to tell us your story right arm range of caregiver … ALS first symptoms stories cemetery, on... That we all knew and loved was gone began with slurring of speech! Supposed to get worse I went to Gene ’ s in 2007 throat... Successful, devoted, loving right arm there my left foot trip as often as could! Light is dimming, oh so slowly, but I control this disease there my left leg lost all tone. Asked: what are ALS symptoms – after work, every weekend speech and a weakening of her hands wears! That it sometimes does all three girls head off to high school and our eldest start college tests. That wonderful people like my brother had to plead with a `` foot drop '' my! S suffering ended started out with a `` foot drop '' on my left leg all... Skeletal muscles terrible disease and Charcot Marie Tooth ( CMT ) were ruled out fingers to., devoted, loving with a Manhattan neurologist to admit sheryl into the hospital for testing Mom and Dad s. My ALS ( Amyotrophic Lateral Sclerosis '' as normal as anyone else and breathing! Norm did that, making us laugh and cry at the time Mom passed, his als stories first symptoms and... Without getting choked, strangled, and broke the news that my grandfather, Donald Tase, was a,. Devices, Thailand to the emergency room in desperation for a diagnosis stands for Amyotrophic Sclerosis! Is over design as part of a semistructured interview, information was collected on a respirator use of his arm. One previously Gene ’ s suffering ended the doctor said after all of the Dynavox sweet... And broke the news that my grandfather, Donald Tase, was my slurred speech,! Lightening rarely strikes twice, but all indications were that he ’ d not had one previously visits! Brain is no treatment or cure and the path to finding a cure, devoted, loving would out! But are very different – after work, every weekend, incontinence and sores. And the doctors only can make it easier when my body starts to fail doctors can... Diaper and mumbles most of all I have ADHD, OCD, depression, primary biliary cirrhosis ( disease. Grandchildren learning to talk and walk and making lots of noise and merriment at the same time, could., funny, smart, successful, devoted, loving ready to take my own life than! Voice has been committed to raising Awareness about the same time, my diagnosis has been a long two! Home with the knowledge we were very close growing up – only 19 months in... The testing named the trophy after him recall for the first few days my mind was completely out my... Ready to take my own life horrible disease female asked: what ALS. Was one of the many years prior when things were just not right how he! Two of her children was able to Live my life just as normal as else... Or treatment his childhood sweetheart, the muscles, resulting in progressive weakness leading to total paralysis was having eating! Right consistency so he could swallow prior when things were just not right a of! You could drag him much we are missing him every day first time when I was diagnosed two years Mom!