Aug 28, 2021 Latest post:
Mar 19, 2023
Some of you were there when Robin was born, some of you were friends of hers from early childhood, or her years in the music industry, or her time in New York City, or maybe your kids were her kids’ friends. Some of you met her at NYU or when she first moved to Northampton. Some of you met her in Utah or Virginia or here in California in the last few years. What is common among all of you though is that like me, you came under the spell of Robin Maltz. And you know that she’s one of the most vibrant, brilliant, beautiful, and determined people in the world and she will use all of that determination to fight this disease to the bitter end.
Robin and I and our children and her doctors are all hopeful that these surgeries will improve the quality of her life by making breathing easier and eating less risky. We all appreciate your support and I will try to keep you updated not only through this operation and her recovery but as time goes on.
Robin started having strange neurological symptoms 6 to 8 years ago. After a few years we got the diagnosis of Multiple System Atrophy–Cerebellar, a degenerative neurological disease that is unfortunately fatal 100% of the time. The disease attacks one’s autonomic system, all of the functions that your body completes automatically without you making a decision—examples being heart rate, body temperature regulation, breathing, swallowing, etc. Robin has avoided a lot of the more problematic hallmarks of this disease like losing consciousness on standing, a catastrophic fall, pneumonia, and a septic UTI. At this point though her breathing has become very distressed. Her vocal cords have slowly become paralyzed and her only option for continuing to breathe is to get this tracheostomy. They are doing a feeding tube in to her small intestine at the same time because the biggest risk right now is that she will aspirate food causing pneumonia. Because Robin can’t cough and because her lungs are relatively weak that is a major concern. As with any operation pneumonia is always a risk, but with Robin this is a great risk so we appreciate all of your love and well wishes. Robin is determined to recover, continue to fight this disease, and live as long as possible in her specific way—with lots of laughter and good food, lots of big questions about the world and silly jokes. So please feel free to write in the Tributes section any happy or funny memories you have of her. If you want to post photos please send them to me and I will post them for you. Thank you all for being in her life and for continuing to support her with your love and your big hearts. All of us appreciate it so much