Justin Page is Living with ALS
Justin receives Social Security Disability and Medicare , which are wonderful programs, but let’s say modest. From month-to-month finances are a struggle, which is an added struggle no one with ALS needs. In addition, the stem cell trial he participated in was “FDA unapproved,” though approved in the jurisdiction where it occurred. Simply, the U.S. does not necessarily recognize the medical research in other countries, so although his American doctors are very happy with the results, the “system” is not thrilled about his participation, and that causes hiccups in his benefits at times.
To help in the small way I can, I have created this campaign, which hopefully will bring in some funds for Justin’s continuing needs. If you are able, please contribute. Anything and everything will be greatly appreciated.
To know Justin Page is to love him, and sometimes want to throttle him. He’s a lunatic, and a genius, and infuriating, and my best friend. Give generously, and often.
First diagnosis of ALS
Before the wheelchair
In the wheelchair but still living, w/daughter Carina
Not as cleaned up - the way I know him
Me , bad webcam, but real
As always, any and all help is appreciated!
* I'm not sure who the incredibly generous person/people are who bought him nearly all the health/medical things on the Amazon list, but I'm having him add some more because I don't know what else he needs -- just in case. Thank you on his behalf, and he's been talking about really needing that wheelchair, so that awesome!
It's been a few months since I have written as things were going better for a while. Justin has a nice place to live and more medical support. So that has been a relief.
The bad news is the ALS is progressing more rapidly. He is no longer able to speak -- which means I haven't spoken to him on the phone in a while, which is devastating. Anyway, he had two surgeries last week to aid in speaking (the first one, and then the second when there were complications). They do this surgery for MS patients all the time, and today he got out a few soft words with his speech therapist. It remains to be seen if there will be significant improvement.
The other immediate issue is a disgusting problem. He has home health care aides all day now, but they are poorly vetted and trained, apparently. One of them, it turns out, used fake information to get the job, stole medication and money, and I shit you not, overdosed in Justin's house. He turned on the apartment building fire alarm to get the police, because he couldn't call 911 and speak. He's filed a police report and the woman is on probation and well know. She will likely be caught and sent back to jail. In the meantime, it cost him about $1000, which he will only get back if he sues the agency, because the thief certainly isn't going to pay up.
So ... he could use some help if you can spare a contribution.
Incidentally, while he is not feeling well most of the time and isn't exactly social, he is also very alone. His only contact with non-medical people has been texting and facebook. Sick and alone is pretty damn horrible. Drop him a note. I think he would like visitors, though he isn't always up to it. Ask.
Someone sweat a lot the "large stuff" for me.
I'm asking for your help with some small stuff. A few hundred dollars for things like rugs, telephone service, blinds on the window (give the gift of sleep) and co-pays.
This is a (hopefully) last go around on GoFundMe.
If you can help me make it to this month's SS check, maybe a get together isn't far away?