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Al

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AL Needs a Big Favor

I have been in contact with Moises Kaufman a noted play write for a while about a play he is doing where the central character has ALS. He did the play and movie The Laramie Project if you'd like to Google it. You can Google the Techtonic Theater Project as well. The play is called 33 Variations. As you can see from the email below he needs a half dozen or so, patients to give him insight to the disease.
I would like anyone that would like to help out to send me a Private Message and I will send you Moises private email so that you can send your answers directly to him to maintain your privacy. I think this play is an excellent tool to raise awareness. It has been done in Washington DC to good reviews but he wants it better in New York. This is our chance to help. They start rehearsals Tues. so he'd like the questionnaires ASAP.
Thanks. AL.

So here are the questions I have. They are designed to help me more fully understand the experience and thoughts of PALS. They are very thorough. If there's any one of them you don't want to answer, just leave it blank.
IO am so grateful for your willingness to do it. In order to write this play, i need to know everything about this awful illness so I can portray it correctly. Your help will be invaluable.
If you could circulate this questionnaire amongst 4 or 5 more PALS who would be willing to answer it, that would be very helpful too.
Needless to say, all the information you give me will be 100% confidential and will only be seen by me. It will only be used to deepen the life of my fictional characters.

OK Here goes.

1.- What do you want people to know about this illness?
2.- What do you want people to understand about the experience of having it?
3.- How has this illness affected your intimate relationships with your loved ones and close friends.
a.- With your spouse
b.- With your parents
c.- With your children
d.- With your siblings
e.- With your close friends
4.- Can you give specific examples of change you have noticed in your relationships, i.e. specific episodes?
a.- With your spouse
b.- With your parents
c.- With your children
d.- With your siblings
e.- With your close friends
5.- Is there anything good that has come out of this illness?
6.- What has been the most damaging part of having this illness.
7- How has this illness changed you as a person. (Has your character changed? Has your outlook on life changed? Have you had specific insights you didn't have before?)

Please answer the following questions with an episode or a story that happened to you.
8.- Can you describe an episode where someone really understood what you were going through? Someone got it?
9.- Can you describe an episode in which someone didn't understand what you were going through at all?
10.- Can you describe a behavior in a close friend or relative that surprised you positively?
11.- Any other examples of this?
12.- Can you describe a behavior in a close friend or relative that surprised you negatively?
13.- Any other examples of this?
14.- Can you describe an episode in which you felt humiliated (by the illness or by someone else)?
15.- Any other examples of this?
16.- Can you describe an episode in which you felt an abundance of love, either towards someone or from someone?
17.- Any other examples of this?
18.- Can you describe an episode in which you felt rage towards someone?
19.- Can you describe an episode in which you felt someone's rage directed at you?
20.- Can you describe an episode in which your life was in danger? Or when you needed to be taken to the hospital?
21.- What do you want to be remembered for?

Thank you again for this.

Much love and strength.

Moisés

Moisés Kaufman
Artistic Director
Tectonic Theater Project
 
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Al

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No takers as yet. This play could be playing for months in New York. That kind of exposure is hard to get.
AL.
 

Glenda

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Hi Al,

My husband would like to participate. I do not have the ability to PM you but his email is kensr at kensjourney dot com.

Glenda
 

ZenArcher

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PA
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I'll be more than happy to answer the questions but you have to realize I'm early on and progressing slowly (FRS - 45) so I may not be able to answer some of the questions. As long as he has no issue with that I'll chat his ear off :)
 

Al

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I've talked with him extensively on the phone and he wants different points of view from anyone dealing with the disease. I've read the draft of the play and the revised edition and the star of the play is followed for more than a year so different peoples perceptions at different progressions will help.
AL.
 

kelly

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count us in

My husband Andrew has agreed to help...speech is limited and typing slow..but we will help in anyway possible. Thanks Al for spreading the word about this opportunity!
 

Beebe

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Hi Al

Hi Al, I will ask Jack if he would like to participate. If so, I will email you Stephanie"s email address. I guess that would be the best way . Hope he says yes. Thank you for the info. Have a good day. Beebe
 

Thumbs Up

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Hi Al

I am willing to answer some of these questions on behalf of my mom and sister of experiences they went thru that I felt embarassed at the ignorance of what was happening with a PAL. But also some good experiences. Will this help?
 

Beebe

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Al

Hi, Jack said yes he'll help out. Should ask things of the Caregiver too! Let me know next step. Fondly, Beebe
 

MtPockets

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I will be glad to help. If it is not too late?
 

Al

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No AL it's not too late. I've sent him more people than he asked for just on the chance that if one person didn't answer a question they were uncomfortable with maybe someone else would. I'm sure he appreciates every one of us that took the time to answer. He does know how hard it is for some of to type. Thanks to all who offered to help.
AL and Moises Kaufman.
 

Al

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On
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Just wanted to thank those of you that helped out.
AL.
 

DonnaJ

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Wouldn't be just as good of help if he just signed onto the forum and read. It's all right here........
 

Poco

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Questionaire

Al,
As you know Dick passed in July. I made a copy of all the correspondence from our first thread to the end. On the forum we discussed Helping Hand monkeys, to assisted suicide and I have it all in order put away. Do you think he would be interested and I could send it to him or am I too late to offer any insight into this disease for his play?
I am glad you are doing OK Al. It is just too hard for me to come onto the sight very often but I always think of all of you.
Phyl
 
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