@judyandchloe and all... Thank you so much for your kind and helpful message. I will check into the Stellalife. It sounds as if it might help when his teeth and jaw are bothering him. It sounds like you've had and are experiencing a difficult time. I am so sorry. I have TMJ and may find that drug helpful as well.

His disability is cervical dystonia with multiple additional diagnoses that go along with this rare movement disorder. It is not like anything else. It is rare, legitimate experts in the field are rare. There are doctors who will try to treat it but know nothing about what to do, so for years they threw Oxycontin, Fentynal and any other heavy narcotic at him even though they helped only slightly. Then, the anti-Oxycontin rage began and he couldn't even get that medication to help with pain. I went to 5 pharmacies to try to fine Oxy to refill his prescription. One night, 5 pharmacies... either not enough, or none, or wouldn't give it to me because they didn't know me or whatever. Doctors and hospitals thought he was pill shopping, faking to get oxy... The man never took Tylenol for goodness sake! Yes, we have had quite the struggle, constant battles for 2 decades.

Things are better on that front for him. His pain doctor implanted a pain pump in his lower back with a catheter running to his neck to the major nerve causing most trouble. He's had that for a couple of years now, with Dilaudid and Backlofen constantly going to the nerve giving him some relief. He can give a boost of meds when things are even worse, but the number and times are limited. It's the only reason he's still alive. He also gets the maximum amount of Botox injections every 8 weeks... It is rare for a doctor to give them every 8 weeks rather than the required 12 weeks, but he can't go longer than 8 weeks and his Mayo doctor has authority to give them more frequently. Coupled with the pump, he has a base of pain relief that keeps him sane. He still has screaming episodes when the pain or muscle spams or cramping are too much, or his body jerks out of control, but he has more legitimate help now than previously.

Mayo consulted about a new brain surgery that goes into the skull to the place in the brain causing the spasms and muscle issues, etc. But, it does nothing got the nerve pain, so he can't have the surgery. Even though his mobility would improved... his pain would still be the same.

He regularly has several different procedures that help some... nerve ablations, trigger point injections, steroid injections, and others. These fill in the gaps between his big treatments. The ablation is a biggie as the nerve is injected with a chemical that burns the nerve ending. Extremely difficult for him to get through this one due to the burning pain and the position he must be in for the procedure. It's tough! Wildly painful!r But, it does give him some relief.

We're talking a life-long minute by minute nerves shooting electricity through parts or all of his body - he's being electrocuted constantly. Muscle tightness that's painful. Cramping. Spasms. Loss of use of left hand and arm now. Left leg is losing it's ability to function without pain and cramping and causing falls. Severe arthritis in his knees and hips, additional pain and loss of strength, mobility. The list is so long. My heart breaks often. When I hear his screaming or am near him comforting him when it's the worst, I feel I can't breathe, my heart is breaking into pieces!

I have had excellent counseling through the last few years that enables me to process these issues fairly well, most of the time. But, I do get overloaded, and when I'm not feeling well or working on my own health issues, it becomes unbearable. I can't be there for him. I hit an emotional wall and that's it.

So it goes... This is our lives and it will get worse by the day for us both. I have a strong faith that holds me up, comforts me, keeps me able to move forward. As does he. But, when there is no hope and we seen daily deteriation of his body, it is difficult to take the next step.

Such a downer. But truth can be. I realized recently there is no joy in our lives anymore. We love and cherish our therapy animals... a precious dog for him, a stray cat who adopted me years ago for me as I can't maintain a dog now. It's getting very hard for him to walk the dog, pick up the poop, etc., but he does it! She saves his life. She is joy! My cat is dear and sweet and a spirit cat for me. She saved my life a couple of times waking me when I was having an emergency during sleep! Swallowing blood after surgery, heart stopping, stopped breathing.

I do hope this story will give some folks going through times helping siblings or children with serious health issues. I do a lot of online research, ask every doctor he sees for advice for additional help. Am now searching for social services help to find anything available to help him in any way through non-profits, city, state and federal programs. It takes a lot of time and energy. It's emotionally draining. But he must get some support. I will not be here in a fairly short time and he will be alone. He won't survive that, so now I must find him help.

That's true of all our situations, isn't it. Parents or family may not be available. Then what?
Take those steps now to hunt for help. Beg. Plead. Do whatever we must to find anything!
You continue to take good care of yourself and be blessed... Elizabeth