An update

Mike D88

Hey guys, I wanted to provide an update on my condition after making the request for Footsteps at Hollywood, FL night one. I don't want to feel like I only talked about health care challenges to get a song request.

The thread preceding all this is here:

https://community.pearljam.com/discussion/306656/i-should-be-dead-id-like-to-make-a-song-request-for-hollywood-fl-on-april-24th

I did write the band a letter about a month after starting the thread. 

I still cannot walk, but slow and steady progress continues with physical therapy. My biggest issues appear to have come more into focus: Muscle wasting and muscle contracture. There are lasting neurological deficiencies, but it appears that won't be show stopping. I intend to walk again, and crucially, my therapists agree that I will. 

The hospital-acquired pressure ulcer has been an ongoing rollercoaster. After a new wound care doctor said it would need surgery, a plastic surgeon disagreed. That was a huge moment, because the expectation was that, yes, a surgeon would want to do surgery. Wound care has since put me through 32/40 sessions of hyperbaric oxygen therapy. The wound is now exceptionally small, measuring just 3x4x4mm. My hope is it will finish closing without surgical intervention, and I'll just have a horrible scar on my lower back.

Health insurance continues to be a barely navigable draconian exercise. Recently I received a letter stating my hospital bed--needed for my stage IV pressure ulcer--was, can you believe it, "not medically necessary." Come to find out, the bed was on a rent-to-own plan, and was now mine. The letter? Intended to stress vulnerable patients the hell out, I guess.

Chris, meanwhile, is doing quite well. He just wrapped up a cross-country road trip to over a dozen national parks with his wife, brother, brother's fiancé, and a friend. Initially, after the show, he was in a kind of stunned silence for a while. Now we can talk about it. Upon returning home, he secretly set about making a frame for the setlist I was handed after the show.

He knows I requested the song because it's his favorite. I think what I wrote was taken to heart, though, and him saving my life wasn't mentioned. It sounds crazy, but Chris really does not like having his actions on that day highlighted. He thinks anyone in that situation would have done the same as him. The thing is, no one else would have put themselves in that situation in the first place. Still, I have to respect his feelings on this. 

This October, I'll be returning "home" for a week to upstate NY, when Chris's brother is getting married. It will be the first time seeing my friends since the coma, which by then will have been almost two years ago. 

Go Animal

Thanks for the update, man.

It was great to sit next to you both at the show, and feel the emotion that came forth when they started playing 'Footsteps'.

Stay strong, keep fighting (physically & financially, cause F the system!), and here's to many more future days 🙌

gotthebottle

Keep fighting....

Mike D88

Go Animal said:

Thanks for the update, man.

It was great to sit next to you both at the show, and feel the emotion that came forth when they started playing 'Footsteps'.

Stay strong, keep fighting (physically & financially, cause F the system!), and here's to many more future days 🙌

Likewise, and thank you! It's all many more months of physical rehab from here, I think--the worst is quickly falling into the past. 

Mike D88

I wanted to provide another update. This one is important, not just for me. If you know anyone struggling with mobility or loss of motor function, pay attention.

I was introduced to a new device called the ARC-EX. This is a non-invasive spinal cord stimulator. Unlike normal electronic stimulation, which involuntarily contracts whatever muscle it's connected to, ARC-EX enhances volitional movement. That means things simply become more responsive.

For example, this is me back on the 21st of October: https://youtube.com/shorts/iYnRewtfAu0?feature=share

Previously, doing a sit-to-stand exercise would require I held on to something, like a walker or a therapist's shoulders. With the ARC-EX on, though, I could simply stand. Note the therapist is only pulling my hips forward (they are very tight), not up.

What's more is the device encourages nerve recruitment, and eventually causes lasting improvement. What used to take years might only take months now. Right now it's FDA approved for upper body, but more is coming based on what's been seen in clinics, like the video above.

So, if you know anyone in need, tell them about this device. It's rolling out to PT clinics now. It took off after a grant from the Christopher & Dana Reeve Foundation last year.

lastexitlondon

You are an inspiration and a courageous man. 
Big love to you.

Loujoe

Great to hear. Thanks for the info. 

maverick

Great to hear positive news and updates from you.  Stay strong.  You are doing amazing all things considered.  

julieooliern

This is great news!! Keep fighting!! ❤️

Mike D88

Thanks everyone. This has been a very long road and there's still so much more to go.

But there have been improvements. The pressure ulcer is closed, the ataxia in my left arm is down, and an SLP and a researcher at USF are working on restoring my cough reflex. 

What I'm most hopeful about, though, is the ARC-EX I mentioned above. If we can demonstrate the effectiveness of its off-label uses, that could contribute to wider FDA approval and make such a difference improving the quality of life for so many people.