New Client Intake Form (Public - facing) ENGLISH
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Date |
User Response |
|---|---|
| 02/12/2024 | User Provided No Response |
| 02/12/2024 | Testing the form. |
| 02/12/2024 | User Provided No Response |
| 02/12/2024 | User Provided No Response |
| 02/12/2024 | User Provided No Response |
| 02/20/2024 | Newly diagnosed. First priority, financial security. How to file for Social Security Disability, how to file for State Disability. I can retire this year and start drawing a pension. Strategies? Disability first, then retirement or opposite? |
| 02/21/2024 | User Provided No Response |
| 03/11/2024 | We are in Pacific Grove, Ca and I do not think we are registered yet. |
| 02/28/2024 | My son, Tim, was diagnosed with ALS last year at the age of 21. He is working with a Dr at UCSF ALS clinic. My immediate concern is to connect with an accessibility expert regarding our two story home and modifications that we need to plan for. |
| 03/05/2024 | User Provided No Response |
| 04/17/2024 | User Provided No Response |
| 04/18/2024 | My name is Caroll, James Simmons Admin Asst. I'm reaching out on behalf of James for help with any services or assistance your organization offers that will benefit Hames while he's battling symptoms of ALS. Recently, his heath and symptoms are progressing rapidly. He need financial assistance for his caretakers. Currently, he does not receive disability from SSA. Any assistance wiould be appreciated. |
| 04/22/2024 | updated information on a cure. how close are we |
| 04/29/2024 | User Provided No Response |
| 05/13/2024 | Hello - My brother (Ned Bader) has recently been diagnosed with ALS, and I am the only family member in the area. A friend of mine, Richard Kraft, recommended your organization so I am reaching out today for any support you can provide. Right now, I am looking for qualified care givers to come in to support my brother while I am out of town for two months this summer. Any help or guidance you can provide would be greatly appreciated. Thank you, Barbara Bader Nealis |
| 05/27/2024 | My son is 55. He was born with Cystic Fibrosis, had a double lung transplant 9 years ago and now he was recently diagnosed with ALS. I live in Florida, but he lives in Massachusetts. He collects disability due to the transplant, unable to work much. He had a part time job, but had to give that up recently since the neuropathy in his hands is limiting what he can do. He needs financial aid and support. He is living in a small cottage that I own, since he can't afford to live on his own, but now he's having trouble paying utilities, food and other expenses. I am his mother and my heart is broken. How can I find resources to help him. He is getting nervous and depressed. |
| 05/30/2024 | Hello Angels on Earth, My name is Stacey. My first cousin, Delia, who is like a sister to me, was recently diagnosed with ALS by her neurologist. She is struggling to adapt to the many changes this brings. Her living space is not currently ADA suitable for her condition, and my aunt is the only person available to care for her right now. Which some of the equipment isn't accommodating or make things easier for her. Her mental health worries us. She is now antisocial. Including having serious depression. This situation is entirely new to our family, and we all cope in different ways. As for me, I am solution-oriented and determined to make Delia's life easier despite knowing there is no cure. I am reaching out for guidance and support to help navigate this new chapter in her life. She has medi-cal and it has been so frustrating to get her the proper support through them. I get hanged up on and no communication. We are so lost. But I am trying to find light for her. Thank you, Stacey in behalf of Delia Vallejo |
| 06/09/2024 | My father lives with me and is newly diagnosed. I would like information for newly diagnosed individuals about equipment needs and how best be prepared. |
| 06/17/2024 | Hi, My father has been diagnosed with ALS. For now, I would like to find out about equipment loan options. I would appreciate it if you could reach out to me. Thank you, Mahsa Maleki |
| 07/05/2024 | Newly diagnosed- I just feel lost and have no idea how to navigate this disease. Any information, advice or support would be helpful |
| 07/08/2024 | My brother Donald (Don) Gamble, was diagnosed with Lower Motor Neuron Disease, last year through UW Medical with Dr. Patel. I asked him to come and live with us. He was a fisherman/boat mechanic living in a boat yard on his boss's boat and unable to walk well or climb steps. He has been experiencing the effects of the disease for more than 4 years now. He just didn't realize what it was prior to the diagnosis. My brother was born in August 1957. He lost over 75 pounds in the last 3-4 years. He has been here in Concord with us since September 1, 2023. We live in a modest home, myself, my husband, my mother in law and Don. My mother in law suffers from dementia and is 83 years old. We started his care when he got here with John Muir, but have since moved to UCSF for medical care, in their clinic for ALS/Motor Neuron. His Dr. referred us to you for support and to get questions answered. (I have many.) He was also diagnosed with schizophrenia many, many years ago and was homeless for many years. He is highly intelligent as well. He has not been taking medication for his mental illness, but he is not a danger to himself or us. I only tell you this for your records in the event we are able to gain support from you. Additionally, Don is interested in both Medical Assisted Suicide, and VSE&D. He has researched both things excessively, and unfortunately because of his condition he is hyper-focused on making one of these things happen. In doing one of these things, he is hoping to avoid being in a wheelchair and needing the help of someone to bathe him or help him with personal care like going to the bathroom. He does NOT want me to help him in any personal way. (I do understand this also.) Unfortunately he is not grasping, that he may require the types of help he is trying to avoid before either of these alternatives are a reality. But, I don't know if that's true, we just don't have the answers or experience to figure all of this out. My biggest concerns revolve around the following: 0ur home and lack of 'accommodations', we live in an older house. What kinds of things can we do or anticipate doing to accommodate him). Medical expenses that he is accumulating (and paying). He has been told he makes $15 over the threshold to receive Medi-cal. He is currently on SSI. His medical expenses are going to be crazy. Closest/best/inexpensive places to get things like walkers, canes, ramps, wheel chair etc. Support (emotional) for us both. Places to go that are interesting that I can take him Because of his mental condition, he is very fixated and intense about certain things, ideas and circumstances. This is all I can think of right now. I am hoping we will be able to get some type of support. |
| 07/09/2024 | I was recently diagnosed with ALS lower. I see Dr. Green neurologist at Stamford and I am working with the VA and I was told to contact ALS And I see there's no change on the name change how long will it be squeaky always network to see what could do for me. Yeah |
| 07/10/2024 | I was just diagnosed yesterday. I have 3 kids, ages 12, 10 and 4. My wife and I are trying first off to figure out who to tell, when to tell them and what to tell them. |
| 07/14/2024 | I am very interested in possible clinical trials for me to participate in. I am very interested in learning how the burden can be lessened for my wife and family |
| 07/15/2024 | I was diagnosed on 12/19/23. So far it is only effecting my arms hands and fingers. I have a Team of doctors at NY Columbia University Med. Center. |
| 07/17/2024 | My mother is newly diagnosed. I live in another state and I am looking for ways to support her. She had a peg tube placed in June and she is independent but struggling with all her time spent on meds and feeding. |
| 07/19/2024 | loaner voice box |
| 07/25/2024 | Husband diagnosed with early stage but it's moving pretty fast. It seems hard to get reply from drs we're not really sure what we're suppose to do. We've been to Cedars we've met our team unfortunately we live in Orange County so guess a lot of the services aren't available. |
| 08/11/2024 | Hi! My name is Suzann Proffitt. I am writing this on behalf of my Mom, Ann Bishop. She was officially diagnosed, after a few months of it being a "likelihood", with ALS last week. Her care is being handled by Dr. Jeffrey Rosenfeld and his wonderful team at Loma Linda University. Her physical therpaist, Peyman Nassari, recommended we sign up with your network to get her a few of the items she is in need of and for support. He feels that she is in need of a motorized wheelchair as well as a dressing stick and zippered compression socks. She is extremely overwhelmed and my sister and I are finding that things are slipping through the cracks because she either doesn't feel up to dealing or she is confused. While at Loma Linda on Tuesday, we filled out a form to become a part of the network, as Peyman wanted her to get access to a motorized wheelchair asap as well as the other things mentioned. He had thought we would hear something by that afternoon or following day. We have yet to hear so I wanted to reach out in case her application was not submitted. I have spoken to her about this and she would like me to handle this if possible. She would be more than happy to give verbal or written permission if needed. Above I provided her name and address, but my phone number and email. I am in absolute awe of what I see that your network does. I am looking forward to speaking with you and hoping I can find ways to help as well. Thank you! |
| 08/19/2024 | I learned about your organization through mutual friends Lorene & Toni Lee. |
| 08/30/2024 | My Father Harold (Hank) Owen received official diagnosis rom UCLA 8/29/24. His symptoms began in April, and things seem to be progressing at a relavitely fast pace. Speech impairment, declining, muscle weakness, declining, on a feeding tube, breathing issues, having a difficult time emotionally (no explanation needed), etc. I live in NC, Hank is in LA - Westside, his significant oher BJ Lange is caring for him at the moment. What support is avaialble on all levels, in person, for the ALS patient, the caregiver, mentally, physically, spiritually. etc. Thank you kindly. |
| 09/01/2024 | User Provided No Response |
| 09/03/2024 | User Provided No Response |
| 09/10/2024 | User Provided No Response |