Ed Johnson (a.k.a. "EJTUNow")

[Nighthawk]

I was reading several threads today at ALS-TDI FORUMS and, came across with this sad announcement/news...

[QUOTED BELOW from ALS-TDI Forums]:

HelpingDad Posted: Saturday, July 13, 2013 3:11:32 PM


Rank: Advanced Member

Groups: Member

Joined: 7/18/2012
Posts: 124


I just read from the PLM site that Ed Johnson passed away recently. I had some brief interactions with him about his ALSTUN program.

If anyone in his family gets on this site, I hope they know that he was determined and admired. My prayers are with you...

He died/passed away recently from...ALS/MND.

I know his militant and fighting attitude didn't earn him many friends here at ALSforums and thus not many here were fond of him but, he was a PALS, just like everyone else here and had to endure much suffering from this disease just like any other PALS out there who knows what having ALS entails.

He was a fighter who tried hard to create awareness about this disease and fought for getting more drug trials for PALS and for shortening the waiting period set by F.D.A. between a drug
trial and the availability of this drug for PALS.


May he rest in peace now, free from ALS, and may her wife, kinds and loved ones find peace and strength.



P.S.: I wish there were more committed ALS fighters, just like he was.

 

[Nikki J]

I too was sad when I learned of his loss. He fought hard and valiantly and I wish him peace and his loved ones strength and comfort.

I do think that everyone in the ALS world battles in their own way according to their strengths and beliefs. It is not given to everyone the ability and disposition for public advocacy and we also have different thoughts about how this battle will be won. I believe in the researchers. I know this is not always a popular stance but it is mine I think what is important is to support however you can the path you believe in. Ed did that bravely and virtually to the end.

 

[Cricket]

May he rest in peace. My thoughts and prayers go out to his family and friends

 

[Nighthawk]

I read this this post at ALS-TDI FORUMS and, I broke into tears.
Sorry, I know I'm a man but, couldn't help it after reading what Ed's son wrote about his Dad's last moments.

I met this great PALS fighter at Washington D.C. this May, 2013 during the "ALS Advocacy Meeting" and he was determined to fight on other PALS behalf until his last breath.

How could I dislike somebody like him, a PALS just like me who suffered this horrendous disease, even if I did not agree with him on his methods or his posts to create awareness about this damn disease?

HappyPhysicist Posted: Sunday, July 14, 2013 3:01:23 PM


Rank: Advanced Member

Groups: Member

Joined: 4/20/2011

Posts: 906



I had tremendous respect for Ed, he gave so much of his heart and soul to the cause and accomplished so much. We all have a point at which we say enough is enough and pass the baton on to the next generation of LALS and CALS. At some point someone will cross that finish line and when they do it will be in no small part because of people like Ed who gave it everything they had.

Ed's son gave me permission to post the following:

Hi Everyone, I know how much my Dad enjoyed working with all of you.
My Mom and I as well as the rest of the family are very sad but also very glad he's at peace.
My Dad controlled almost every aspect of his life and he controlled his last 10 days pretty damn well also.
As he lost his ability to walk and talk, an at-home nurse came to help my Mom but after a several falls, he opted to check himself into a nursing home (this was about a week ago, maybe 10 days). It was getting too hard on my Mom and he himself began to see the end - at least the end for him. Once the speech was gone and the physical capabilities gone, he lost his will to live.

I spoke to him for the last time the morning he was packing up to head to the facility and then received a final email from him.
The email was odd, a bit of a final goodbye. I thought to myself - this is classic Dad....heading into death the way he did everything else, with a plan. Apparently, per my Mom, as soon as she left the facility to head home for the night, he instructed the staff that he wanted literally nothing - just water. Long story short, he went on like that for a few days, only to give in and take on some Ensure and a grilled cheese sandwich. He had one final visit with my Mom which was upbeat and then he declined rapidly in the past few days, passing comfortably last night.

My Dad fought hard throughout this battle but it just wasn't in him to live depending on others too much, I respect that and I will remember him so fondly.

Thank you all very much for the work you do; for each other and for ALS.

Warm Regards, Tim Johnson

May he rest in peace, free from ALS.

 

[cervus]

My sincere condolences to Ed's family and friends. Yasmin.

 

[Barbie]

so sorry to hear this. I did not realize he was a PALS.

 

[Nighthawk]

so sorry to hear this. I did not realize he was a PALS.

You weren't the only one who thought he wasn't a PALS.

Some here saw him (or I should say thought of him) as an annoyance, a spammer, as somebody trying to sell something, a scammer, etc., and generally dismissed him.

The last thing people could've ever imagined is that he was a just a...PALS, like many of us, who had to endure the ordeal of having this horrible disease (ALS) and who dedicated most of his time (even crippled as he was) to fight on behalf of his fellow PALS to create awareness about this disease to institutions like F.D.A., Congress, N.I.H., .Drug Companies, etc., to try to find a treatment or a cure for this generation of PALS and the generations thereafter.

R.I.P.