One of the finest men to have ever lived died today
 

jamie
(researcher)

Stephen - Founder of ALS TDF and Inspiration for PatientsLikeMe

Dear Friends,

I am sending this email out to our friends and family about my brother Stephen. Stephen is the brother of PatientsLikeMe’s founder Ben Heywood and long time friends with founder Jeff Cole.

Stephen was the inspiration and Founder of ALS TDF, which was started in our parents Basement in Newton MA and is now the leading research center for ALS.

I read this today in the paper and I thought it was appropriate.

From Martin Luther King’s sermon: Civilizations Greatest Need

"Our material and intellectual advances have outrun our moral progress… It is not enough to have the power of concentration… but worthy objectives upon which to concentrate."

ALS TDF will put out a formal statement shortly.

-jamie

----------

Dear Family and Friends,

Friday morning at 5:30 I received the call from Wendy that I have gone to bed each night hoping would never happen. I could tell from the sound of her voice that this one was different. When I arrived, their small street was lit up with the flashing lights of two fire trucks, an ambulance, and the police. Going inside past Wendy holding Alex in her arms and into his bedroom I found Stephen. His vent had disconnected, his lips were blue and despite aggressive CPR he looked peaceful perhaps with even a slight trace of a smile. I rode to Newton Wellesley with the ambulance driver who also grew up in Newton and remembered Stephen from other visits.

Between his caregiver Nicole and the EMT’s, Stephen had CPR for over 40 min. I don’t know if it is because he forgot that he was sick or because his heart is larger and stronger than any I have ever known but it restarted. You could actually see the disbelief on the ER team’s faces. You also knew that they were not sure this was a good thing because Stephen’s eyes were not responding at all. They wanted to make sure we understood how bad it was but they missed Stephen’s point as people often do.

Stephen would tell a joke about wanting to die a heroic death. It went something like this. There would be a fire and he would save someone but it would have be a slow fire with ramps because he would be in a wheelchair. I think he found a way to do that.

There is no blood flow to either hemisphere of his brain and he has no EEG signals. Stephen is gone, left in our hearts and in the relationships and structures he has built. Stephen was in command of his world and his body at all times and never lived life on anything other than his own terms. Thursday night before bed he sent an email to Ben saying how wonderful our Thanksgiving was. It was a wonderful Thanksgiving.

Stephen has kept his body alive so that his family and friends could gather and say goodbye. As Stephen indicated he wanted to he will donate his organs to others to give them a chance at the amazing years of life that he gave us. Sometime over the next few days if it is possible some very lucky person will get his heart.

So he found his slow fire and it has ramps.

-jamie
_________________
ALS/MND Registry
http://www.patientslikeme.com/registry

I went to the ALS site and saw the picture of Stephen, No doubt carefully chosen to show that he was alive and LIVING, not set up like a ton of concrete in his wheelchair. Strange winds blow at times , today I was going to drive over to another town to get an old wheelchair from a friend whose dad had ALS. I fell down horribly on the porch just before getting into the car. Now you remind me that those with advanced ALS do not even get the chance to get up and drive, in fact , many of them can't even get up to fall. So my legs and arms hurt, I should be glad that I can feel my arms and my legs at all, hurting or not.
So have your grief time, with your fantastic friend, but forget his disability quickly, for now he is reaching out to say that it's alright, and prayer now is for the others in his place. Each one of us who passes on leaves another reason those left, to "fix our lives up" and "make a better world". Is is not only the sick that die, it's just the sick realize that they are dying a little bit every day.
I always thought that my God would grant me that "best" way to die, no pain, and while sleeping. But the more I rage against the power of God turning away from the problems of the most evolved being on the planet; I have to walk away and wonder if one person's life means a difference. And then I am hit by the opinion that we are not a planet of single people, but instead a single planet full of different people. And if you give of yourself, (in any way), than you are giving to all of us. So thanks Stephen, forwhat you gave to us all.

Very nice cs. I'm sorry for the loss of this man, but by reading about it, I found a quote that I'd like to use for a signature line.


"Our material and intellectual advances have outrun our moral progress… It is not enough to have the power of concentration… but worthy objectives upon which to concentrate."
Martin Luther King

My sympathies go out to family and friends.

Paula

Stephen Update

This morning at 6:30 am Stephen went into surgery after being declared legally brain dead. Wendy quietly sang Arms of an Angel by Sarah McLachlan and then we walked him down as a group. His body fought for 2 days to enable him to donate his organs in the best way. As I write this two patients are receiving his kidneys and are being given a chance at life. Stephens’s heart stopped at 7:36 am. My family was all together at our parents.

Stephen found a way even in death to help others. He gave so much strength to so many.

This does not end here. Together with Stephens’s spirit continuing to guide us we will take this disease apart and destroy it.

-jamie

What an inspirational story!..Disease can ravage our bodies but our spirit belongs to God..In his death he gave the gift of life

My condolences to Stephens family and friends

A friend of mine died recently with ALS ...
 

and what strikes you is the speed of decline, 18 months from an initial fall to death.

But the overriding impression is the sheer helplessness of anyone to do anything. Morphine patches and making her comfortable were the only things the well meaning medical staff could offer.

Makes you realise how lucky we PD'ers are to have drugs to complain about the side effects.

Farewell Stephen, no-one should have to suffer the trials you endured.

Aftermathman.