Help Steve Jones recover from locked-in syndrome

Hi, my name is Sherry and I'm fundraising to provide equipment, therapies, renovations to our home, and care to my spouse, Stephen Jones, after having a stroke that has left him with a condition called locked-in syndrome.

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On November 23, 2021 I drove him to emergency in our town not expecting such a devastating outcome. He had had a sudden severe headache and dizziness. On the way, he told me to tell people that he loved them and I felt/hoped that he was overreacting. He walked into the hospital while I parked and was in a wheelchair when I caught up to him inside, having lost balance (which he had been having trouble with for a few months). He still seemed outwardly alright enough, but soon started vomiting violently. He stopped breathing and was intubated. Our small hospital doesn't have a CT, so they could not confirm that he had a clot and instead thought that he had a bleed causing the stroke. They could not fly him to the city as the ceiling was too low that night after a heavy rainstorm had gone through, so the Life Flight crew took him by ambulance. By the time I arrived in the city hospital emergency, they had discovered that he did, in fact, have a clot that formed inside an aneurysm...his was a large dilatation in his basilar artery....and not a bleed there at all. It was outside the time to use tPA, however, it was felt that it was worth trying. Later that morning, it had seemed to work. Steve could move hands and feet on both sides, but by the afternoon, he had lost first one side and then the other. He was left with only eye movement and was locked-in.

By now, months later, he has a lot of facial expression, some head movement, some finger and wrist movement in one hand and some finger movement in the other. He can use a small switch as a call bell and trigger movement for a motorized wheelchair. He may have enough head movement to use that as his way to operate one as well, but it still needs more work.

He is using eye recognition software with a tablet to communicate and when he doesn't have the tablet set up, I use an e-tran board to spell out messages with him.

He has been trying a speaking valve over his tracheotomy and it appears that he is able to vocalize, so we are very much hoping he can relearn to speak which would be a huge achievement to open his world more.

Steve is completely dependent on others for care and is using a GI tube to provide specialized liquid food.

He will need a motorized wheelchair, eye recognition technology, therapies, a hospital bed and lift and renovations to our home, all of which are highly expensive. There will also be specialized medical equipment and supplies to allow me to take care of him. I will require assistance with his care utilizing private nursing. The exact items may well change as his actual needs change with progress as some of this is a moving target.

Our wish is for Steve to return home after he has recovered enough during rehab. We dream of creating a new normal in a familiar environment with our pets etc and access to stimuli.

Steve has had a long road already, moving from the first days were he was only able to move his eyes to now being able to move his head, have facial expression, some signs that he may be able to relearn speech, enough finger movement to operate a switch as a call bell and to operate a motorized wheelchair. He still has a tracheotomy and it's uncertain whether he may be able to have it removed, but we hope that he will at some point.

One morning months ago, Steve spelled out with me, "Was I a person?" I never want him to feel that he isn't a person again. I want my husband to lead as full a life as possible and to feel like a person who is loved, valued and cared for. Many people love Steve and want what he wants, to go home dearly. Unfortunately, this requires quite a few resources that we, as a family, are unable to provide fully. As a result, we are asking people to think about us and contribute what they can to help us make this happen.

By Steve….

Hi. My name is still Steve aka Hammy Snout.

In November, I suffered from a severe stroke. I can not move or talk. I worked until I was 73 and retired a month before this happened. I started with nothing in my life and managed to have a family and have had good fortune until this tragedy struck me.

Can you help me? Thank you for giving. God bless us everyone.