“I have bulbar onset als and am forced to live in adult foster care. I had to leave my home and three children and move hours away from them. I will be diagnosed for nine years in may of this year and will have actually had als for twelve. Nobody should have to leave their children. I was only twenty-seven when my symptoms started. We need Congress to hear our voiceless plea.” Melissa Newton – Minnesota "My husband passed away from ALS last February. He had Medicare but it didn't provide any care in home. I had to take care of him on a trache for 8 months as he was unable to breath on his own or move anything except for his eyes. It was so hard on my own, no showers, sleep or eating for me for days, only if a volunteer would sit with him once a week. I couldn't take care of myself much less him from the sleep deprivation and not eating. I got a back injury from moving and changing him that made it nearly impossible to move, I now have to have physical therapy. I should have been there spending quality time with the love of my life. We missed so much time together that I can't stop grieving and the depression. Sometimes I can't bear the guilt and have thought of suicide, even though I did everything humanly possible. He decided to come off of the trache because he couldn't bear to see me so sad and I feel like it was my fault. I am in therapy and slowly healing. I feel for everyone going through this, patients and especially caregivers that have to watch the ones they love slowly wither away" Lori Alford - South Carolina “My husband has A.L.S. We don't have family near by and no close friends to help. I can't take him down stairs and into car. His wheel chair is not safe. I cannot control it. C N A takes us to Dr. Not time too buy food. and things we need...we are 78 years old. I am sure there are others with more needs than us. We have water, thick it, Boost, all large heavy things sent from Amazon. I can't get it into house... If you can't help us, please help others!” Myrna Masterson – Connecticut “My husband, age 43, has ALS and is on invasive mechanical ventilation. He requires care 24/7. I'm his caregiver and therefore unable to work. He needs assistant with every aspect of life. As each day of his short remaining life passes, he is faced with the difficult decision to continue his life or financially ruin his family.” Leslee Bublitz – North Dakota “I have ALS, was diagnosed last year in May. I walk very slow with a walker, soon I won't be able to take care of my personal hygiene as its getting hard. My husband works and is stressing over this. I currently stay home alone, don't do much because I can't. My husband prepares my meals. All I have to is warm them. I fell yesterday and couldn't get up, I was lucky, my sister was visiting.” Elsa Lozoya – Texas “My husband passed away in 2012 from ALS. I was his only caregiver. The physical, emotional and financial toll was enough to break even the toughest soul. We had to navigate care issues blindly. If not for the internet, we would have been completely lost regarding the ins and outs of Medicare policy.” Cindy Jimerson – Georgia "My dad has als and cannot use his arms or legs. My mom is now disabled after caring for him for two years. My sisters and I are now their full time caregivers and we are slowly dying trying to keep up with our parents needs and work and home life including kids of our own. Where is our home health help? Dad retired with 30 years service at two jobs twice! He has Medicare and a part b and d insurance. No home health. We were referred to Hospice but they only provide a nurses aide for bathing for 30 minutes a day and a nurse who checks on him once a week. They are great but the other 23.5 hours are all on us. My neighbor is in her 40's has Medicaid and has a full time home healthcare provider. Something has to be done. Wouldn't it be cheaper to help these folks stay in their homes as long as possible? Help!" - Lisa Long, North Carolina “I'm signing because I witnessed the needs my father had with ALS, the limited assistance, and lack of resources. To place my father in a care facility would have meant a 90 minute drive from his and my home. With the addition of his vent he required 24hr care by a "trained" professional or family member. One family member was my happily eager 6 year old that would put papi's vent hose back in place if needed while at the dinner table. The denial is real for most diagnosed with ALS so they don't reach out and advocate for themselves and the hope given by medical professionals can often be deflating.” Mark Rushton – New York “I was diagnosed with ALS in April 2012. I live by myself and don't have anyone to take care of me when I become immobile. I'm scared to be alone because I have fallen a few times and couldn't get up. Let's Do This !! #HearOurCry” Ramona Aguilar-Zoria – California “My husband has ALS, I am his caregiver, He requires care 24/7 as he has lost use of limbs, and now ability to swallow is becoming an issue. As the care giver I bath, dress, and feed him. It consumes my day and up two or three times at night. Before ALS he worked for years paying into this system that now claims we don't qualify for home care aid until he's at end of life. It's just is not right.” Joyce Kite – Washington “My husband Bobby Forster is a 26 year old living with ALS. We are too young to have any type of savings because we are still paying off college loans. All the money I currently make for our two person household goes to rent, utitilties, food, and Bob's care. I am working 40 hours a week and commuting 2 hours each day. When I arrive home I then take over as his care giver for the night. Essentially I am working 24/7. Increasing our access to home care will allow us to spend time as a newly wed couple instead of a nurse/patient capacity. He has precious little time left with me and I wish for that time to be able to be spent with us living our life as a couple to the fullest.” Casey Stotz – Rhode Island “I am signing this for my incredible Uncle Tom, he has been battling ALS for over 25 years and is the most amazing person I know. I've grown up my entire life with him and my grandmother (who cares for him 24/7 at 78 years old) across the street from my families house. At my grandmothers age it is almost impossible for her to care for him alone anymore, and it sickens me how my mom (my uncles sister) and the rest of my family has to fight for them to get help for my uncle. My mom has written thousands of letters made millions of phone calls to try and change this because the help would not only help my uncle but it would take just a TINY bit of the stress off of this terrible disease. No one truly knows what happens behind those doors of an ALS family unless you are in that position, my uncle is the strongest person I know and I hope and I pray that something will change in the ALS community and people will realize we're not asking for much, we are just asking for HELP for the helpless..God bless you all” Trisha Defelice – Connecticut “My husband just passed away on 2-2-16. Our teenage sons and I were his caregivers for four years - I know the struggle. My highest hope is that there is someday relief for the families who lovingly care for their loved ones at home.” Susan Finnan – Florida “My husband passed away after a 5 year battle with ALS. We were never told we could receive services through Medicare. The cost of his care was enormous and we paid for all of it out of pocket.” Michele Salvini – Kansas “I have ALS and it's costing a fortune for home health care. Either money will run out or I will. Who knows which will be first?” Ruth Hinsdale – North Carolina “My dad needs 24/7 assistance. My mom cannot lift any weight due to her own health problems. And they were approved for minimal home health care and pay out of pocket for a companion who they had to train who can only come one day a week for 3 hours. They are way under supported! And Medicare is nearly impossible to deal with.” Karla Cavalier – Florida “My mother has ALS (diagnosed 5 years ago). She is on a ventilator, completely immobile, and uses an eye gazer to speak. I am with her 24/7 as her only caregiver. We are in desperate need of help.” Lauren Burch – Georgia “My mother has ALS and my family is deteriorating because of caring for her.” Laura Hillebrand – Missouri “When I needed help, with my mother, there was none available......she had no insurance and I was told that they were not a charity help assoc......they were like a nursing agency that required helpers to be paid......Here I was the divorced mother of three working, as a nurse, two jobs, nights and could get no help for my mother........she died after six months of living with me....she was sixty years old.” Carol Sellers – Tennessee “My mother is struggling at home with me. We are begging for more support and answers and going in circles being told she needs a qualifying event to get more care.” Alanna Murch – New Hampshire “I am paying for my mother's home care with no help. I will be out of money in less then a year and am overwhelmed with what my options to care for her will be.” Colleen Hammond – New Jersey “I am a caregiver for my parents; I began with my mother part time until the need increased for her and now includes my dad. They wanted and deserve to be home, so I travelled from Atlanta to Florida at first, ending up longer in Florida, while trying to hire help which was unaffordable. My daughter moved in with them and became a caregiver, but it takes both of us for 24/7 now needed with my mom in end stages of dementia and after striokes and my father with no memory to even prepare simple food tasks. Can't imagine how ALS people survive trying to keep their loved one home! And they are not the aged and Alzheimer's/dementia elders, but in the prime of their lives. ALL caregivers need help, but ALS people have to be able to be at home! In this country, we care little for our aged, veterans, and sick--forcing them to be institutionalized - and even that often leads to financial ruin,!as well as taking a huge toll on family and parient. It is absolutely demoralizing!” France Desrosiers – Georgia “My mother has ALS and is unable to walk or stand up on her own anymore. She has to hire a caretaker with her own money, and because she cannot afford to have one there full time, the caretaker comes for only several hours in the morning and then she has to sit in her chair all by herself with no one to help her for several hours until my dad comes home. As a family, we try to help when we can, but Medicare should help pay for these caretakers who are so desperately needed for people with this condition. They require full time care that can really cost an incredible amount of money on top of Medical costs and supplies. Please help assist families like ours who are in need of more home care.” Theresa Oloier – Illinois “My husband has limb onset ALS and no longer has use of his arms and is no longer able to work, I have worked full-time for over 40 years and continue to work full-time to try to keep our family together. I also am the caregiver of my husband who requires bathing, feeding, dressing, etc. My years of work dedication has provided for those who do not work and now I/we are in a position of much needed help and there isn't any...there is something terribly wrong with this picture and I don't know how we are expected to manage this. EVERY SINGLE DAY that I go to work, I have to worry about how my husband will be fed (as trying to keep weight on someone with ALS is extremely important), in addition to other necessities throughout the day. I challenge any one of you to stick your hands in your pockets for just one day...don't pull them out...don't have someone there to help you...and go about your day...then can you honestly tell me and those suffering with this dreaded disease that home care is not needed?” Sharon Hare – Michigan “I'm signing because my husband has ALS. He was diagnosed 5 years ago and just about 3 years ago went on a ventilator to stay alive and watch his 2 boys grow up for as long as possible. I'm his main caregiver and need help. It's the hardest job I've ever had and there is no vacation, day's off or holidays. Help is needed.” Pamela Eckardt – Illinois