Justin Page is Living with ALS

$15,450 of $100,000 goal

Raised by 108 people in 19 months
This campaign is for the care and feeding of my friend Justin Page , who I have known for an unbelievable 30 years. About three years ago Justin began to have falls walking up and down steps. Many hospital visits and tests later Justin was officially diagnosed as an ALS patient. He has been fighting it like a champ, including participating in a stem cell trial outside of the U.S. His aggressive treatment and unwillingness to give in, has resulted in an unusually slow progression of the disease. Although he did live in a nursing home for a period, he is currently in an apartment. While he uses a wheelchair or walker, he still stands and has the use of his legs. Some days are better than others, and you can hear that in his voice, which is sometimes strong, and other times obviously stressed. His memory is a bit inconsistent, but not his brilliance or obscene sense of humor.

 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
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Justin is having his 51st birthday next week. He is now part of the 20% of ALS patients who survive the disease 5 years or more. Yet his poverty status has not change and there are a few items I know would make his life easier. This is a link to an Amazon wish list. Most of these items are very practical and will help him live better and safer with ALS.

https://www.amazon.com/hz/wishlist/ls/1NFGOT3KX8K0A?type=wishlist

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!
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Hello Friends of Justin,

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.

-Rebecca
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As many of you know, I am finally living someplace where I can get better.

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?
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Justin needs some help with paying for phone service. It's been shut off. I don't know how much the bill is because I didn't know this was coming. He's been having crippling nephropathy pain in his legs lately, it's a common symptom of ALS and muscle death. So, not having a communication tool is a problem. He has 911 service (we all do if we have a phone), but can't call/text/email the pharmacy or doctors, etc. If you can help, that would be great.
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Marion R Kee
17 months ago
2
2

Shared!

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$15,450 of $100,000 goal

Raised by 108 people in 19 months
Created February 28, 2017
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$50
Anonymous
11 hours ago
1
1
MK
$40
Marion Kee
2 months ago

Justin, you have friends here who value you and will help.

GA
$50
Gannon Asip
2 months ago

Hey Justin. So sorry this happened to you, and I know you are going through a rough time. Thinking of you, buddy.

AO
$100
angela omalley
2 months ago
1
1

I'm sending you love, warm hugs, and only calm & peaceful thoughts, Justin! Your many friends are pulling for you! Blessings & miracles too! ♥

$200
Angela O'Malley
4 months ago
1
1

Keep fightin' the good fight, Justin! You're on your way to recovery! ♥

$35
Marion Kee
4 months ago
1
1

Still with you, Justin!

$100
Anonymous
4 months ago
1
1
Marion R Kee
17 months ago
2
2

Shared!

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