I recently received an e-mail from a precious lady that simply said, “What is this I hear about a gene being found that is responsible for ALS?” Later on in the day, I was tagged by some of my Facebook friends talking about some new things going on in the world of ALS (amyotrophic lateral sclerosis). I received two phone calls in the afternoon, one to let me know one of my sweet friends had passed away with ALS, while the other phone call was from a gentleman thanking me for helping his wife, who is diagnosed with ALS, with some transportation equipment.
I also received a phone call from a nice lady who was crying and saying her brother had just been diagnosed with ALS and she just has no idea what to do. I called a gentleman and got to celebrate with him that his Power Chair is “just perfect” and he can now go outside. He was trapped inside his own home because he has ALS. I called the wife of a man living with ALS and cried with her as she feels that she is losing bits and pieces of her husband on a daily basis.
Have you ever just been mad? Well, I am mad! I hate ALS! I hate feeling helpless, I hate that there is little I can do to help. I hate that great people die from ALS. I hate that we do not know the cause of ALS and that we have very limited treatment for ALS.
How can I turn this anger into something helpful? Remember the Ice Bucket Challenge? Now, that was something helpful. Over $100 million was raised to fund research to find a cause and cure for this horrible disease. This was really just a huge drop in the bucket. There needs to be many, many more drops in the ALS bucket!
I am blessed to live in the Upstate of South Carolina. The giving community here has allowed Prisma Health to start an ALS Clinic and graciously allowed me to be hired. You see, I am the nurse practitioner/nurse navigator for our ALS Clinic. I am a very small part of the big team serving families living with ALS. We began two years ago with two patients and now serve approximately 55 families with ALS. We run one whole day every month devoted to our ALS patients and families. We have 13-14 different disciplines that see each patient and are in the process of becoming the first recognized treatment center in South Carolina by the ALS Association.
It is because of generous drops in the bucket that we are here providing care. Whether you give here locally for the Prisma Health clinic or to the National ALS Association please consider giving. Remember that every single drop in the bucket counts!