“I am HR’s caregiver. He has a neurobiological disorder and has also had severe headaches for years. The headaches have gotten progressively worse; in November, he began living with almost constant pain. He has been diagnosed with a rare type of headache called SUNCT, a trigeminal neuralgia that is similar to cluster headaches. There is no known cure and no reliable medical treatment. To give you an idea of what he’s dealing with, cluster headaches are nicknamed ‘Suicide Syndrome’. The headaches come randomly, with no warning, at all hours of the day and night; but for him, they are much worse at night. The intensity of the nighttime headaches is so great that he yells, cries out, groans, and sobs—repeatedly, every few minutes, for most of the night. He can’t work. He has no quality of life. If you call him and ask how he is, he will say, ‘Everything’s okay,’ because that’s just how he is. But everything is not okay.
We’ve been consulting doctors for the past few years, and have uncovered several health issues that we were able to address and overcome. But these headaches… In the past six months, he’s been to the emergency room twice, had an overnight in the hospital, has seen two neurologists, and so far he has a diagnosis and found a pain medication that worked well for a while but is not safe to take long-term—so it’s two steps forward, three steps back. He has an appointment in early May at a Headache Center–not fully covered by health insurance–where we hope to find someone with experience with this type of headache. He’s on a cocktail of pharmaceuticals that scares me. He has lost weight, with visible muscle wasting.
As a clinical herbalist, you can be sure that I have also been tapping into my extensive knowledge of natural medicine. Nothing is working YET. I know what we need to try next, including acupuncture and some herbal preparations, however we can’t manage the costs of these treatments.
I am a full-time caregiver. I work a full-time retail management job with varying shifts. I manage HR’s calendar and business as best as I can. I’ve been trying really hard to work on extra projects to bring in some extra money (very slow going). I take care of the apartment, the car, the bills, HR’s doctor appointments, everything. I do all of the things. And now I can’t sleep because my husband is crying out in pain all night. On top of the physical stress of shift work and not getting enough sleep, the emotional and psychological stress of watching him be in pain and not being able to do a damn thing about it is wearing me down. He needs me to be around more and he needs me to be at my best. I can’t do this alone anymore. We need your help.
Thank you for anything you can do to help HR regain his health–and his life.”
Con queste parole il medico curante di H.R. comunica che il frontman della storica HC band Bad Brains soffre di una rarissima patologia neurobiologica.
Se volete contribuire al crowdfunding lanciato dalla band cliccate qui:
https://www.gofundme.com/r4ua4wng
La redazione di punkadeka si stringe intorno a H.R. (Paul Hudson) e la famiglia Bad Brains.
