I need to know...What you feel.

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Daisy

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Hello:-D

My name is Daisy and I'm a design student at Emily Carr Institute as well. (if you have already read Joy's thread)

I'm working on a school project to illustrate what having ALS FEELS like in order to engage people more in terms of an awareness of the disease.

I have researched and gotten some basic, technical information on ALS, but I want to get more understanding of it in terms of what its like to actually have it - that is, what ALS is on a sensorial level, physically / emotionally.
For a lot of people, doing art and writing are a way to release their feelings, their stories,
I think through thiscommunication it is easier to make the general public more engaged and connected.

If it is possible, and I am crushed on time, I want to engage people who have ALS to draw
what ALS feels like for them. I understand not everybody are artists but just descriptions
would help alot as well. I'd greatly appreciate it if any kind people wouldn't mind me
asking to share and describe more soulful and honest descriptions.
For example, it could be something like Tuesdays with Morrie where
he describes his body melting like wax.

For you only, what does ALS feel like?
(I don't mean scientifically speaking how it progresses, but emotionally what do you feel?
metaphorical would help alot if possible, but emotional and physical, generally sensorial
descriptions are all welcome from the heart.)

(I have attached some links and examples of some work of artists with ALS)

this is the society our school is partner with this school year

http://smg.photobucket.com/albums/v474/Ceres_Eve/?action=view&current=C1.jpg
Art by a person with ALS.
*This is what impacted me the most, and is looking to incorporate this style.

http://www.signandsight.com/features/1078.html
The artist and his doctor

http://webba.alsa.org/site/PageNavigator/BA_Bougher
A Blissful Life

http://www.umich.edu/~urecord/0405/Feb07_05/18.shtml
Don't Miss; Painter overcomes challenges to remain an 'Artist Always'

http://www.alsa.org/community/article.cfm?id=567
Dorothy Wood: Regained Artist’s Touch After Developing ALS


Help would be greatly appreciated! (my deadline is March 1st)

Daisy:oops:
 
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ltr

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I can't help you because I haven't been diagnosed with als. But, isn't using the words of others about how they feel considered "PLAGIARISM"?

I am a mass communication major with an emphasis in journalism. That's what we consider it!
 

Jamiet

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Daisy,

Can you imagine the emotions when death is staring at you straight in the face. The fact that you've been diagnosed with a disease that is terminal, no cure, no real treatment and you've got two to five years....and its downhill from day one, never gets any better. It's horrible, demeaning and often, puts you in a depression. Your body, slowly degenerates, one limb at a time.

I hope someone will give you the info you need.

best of luck and thanks for trying to spread awareness
 

John1

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ltr said:
I can't help you because I haven't been diagnosed with als. But, isn't using the words of others about how they feel considered "PLAGIARISM"?

I am a mass communication major with an emphasis in journalism. That's what we consider it!
No, it's not unless you claim they are your own words.
 

ltr

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I'm sorry John, I don't want to sound argumentative, but plagiarism is using somebody else's words, you don't have to claim them as your own. If you use quotes and put the persons name after it, then it is not plagiarism. I have studied this extensively at the college I attend. It is a very deep subject there because the college teaches media and journalism. So, in order for these students to publish this brochure they are making using the words of the people on this forum, they would have to quote these words and using the correct names. Just shedding some light on what they are doing, not causing problems! Leslie
 

Daisy

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I'm sorry if I wasn't quite clear in explaining what I am doing.
But I am not using others words, nor am I claiming them my own.
As in my studies I have written essays of sorts and know full
well what would be considered plagerism.

I only want to derive image from those words, as I am planning
on using illustrations.

And ofcourse, when I present my finished proof of concept, I
will cite the help I received from the ALSforums.

Alongside it, it will only be an idea that I propose for the society to
consider. It does not mean the products I delivered will definately
be presented to the public.

Very sorry to have caused any misunderstanding and annoyance!
 

Daisy

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Jamiet said:
Daisy,

Can you imagine the emotions when death is staring at you straight in the face. The fact that you've been diagnosed with a disease that is terminal, no cure, no real treatment and you've got two to five years....and its downhill from day one, never gets any better. It's horrible, demeaning and often, puts you in a depression. Your body, slowly degenerates, one limb at a time.

I hope someone will give you the info you need.

best of luck and thanks for trying to spread awareness

I know it must be quite disturbing to have someone barge in and ask
for personal feely touchy descriptions/emotions/sensorial experience.

But anything will help. If anyone is kind enough to share but would
be embarrassed to post publically here is my email:

[email protected]

really, anything will help.

Thank you very much!
 

Jamiet

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There is another movie besides what Al suggested, it's called Jenifer...

Its the story on Jenifer Estes, who had ALS.

I hope you find what you are looking for, but it's going to be tough. Everyone experiences different emotions, but to say the least, from the first symptom, til the end, its a roller coaster ride for sure!

I wouldn't worry about the plagarism....if someone gives there opinion here, i'm sure they don't mind it being used for ALS awareness.

Good Luck
 

Al

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Also we worry a lot less about such things up here in Canada. And we just don't sue for all the things they do elsewhere.
I have seen the Jennifer movie and like Morrie it was embellished to make it more interesting for TV. The documentary is real footage of a man over 3 years of his life living with ALS. Gritty. Real. When I saw it at the Toronto premier they gave out kleenex before the screening. I think every one was used.
AL.
 

CindyM

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I also recommend reading Morrie's book, as well as one titled "Rowing Without Oars" by a woman whose name escapes me at the moment. And a good place to learn how folks feel might be on some of the personal blogs and websites that many PALS have set up. Cindy
 

liz

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While I know this is a public forum and what I post here will be read by many, I wouldn't really like it if somebody took my words from here, put them in a brochure, attributed them to me or not, and then circulated it somewhere else. Daisy, I hope you'll only use the contributions of people who responded directly to your posting. I'd like to think that when I post on this forum, my words aren't going to be published without my knowledge or permission. I realize that's not guaranteed by the forum. It's just a matter of basic respect to me that people wouldn't do this.

Liz
 

ltr

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Thank you Liz. I thought everybody was upset when I mentioned it. Maybe I went about it the wrong way. I may be wrong, not trying to upset anybody, but because I took media and writing on as a professional career, it means a lot to me not to use others words. I know some don't care and think it is trivial, but we all have things important to us. My take on it may have been clouded, but I felt like there were a couple of students who had to do an artistic brochure, probably assigned at the beginning of the semester. The semester is half over and it is due and they were struggling to find something artistic. I felt this way because Daisy asked for metaphors. This gave me the impression she wasn't trying to learn about als in order to educate others, but looking for a way to make her brochure interesting. Even though I am not diagnosed with anything, I felt it was an invasion because I have talked on this forum more than I have to people I know about my illness. I am not being mean Daisy, just looking at it differently.
 

Daisy

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ltr said:
Thank you Liz. I thought everybody was upset when I mentioned it. Maybe I went about it the wrong way. I may be wrong, not trying to upset anybody, but because I took media and writing on as a professional career, it means a lot to me not to use others words. I know some don't care and think it is trivial, but we all have things important to us. My take on it may have been clouded, but I felt like there were a couple of students who had to do an artistic brochure, probably assigned at the beginning of the semester. The semester is half over and it is due and they were struggling to find something artistic. I felt this way because Daisy asked for metaphors. This gave me the impression she wasn't trying to learn about als in order to educate others, but looking for a way to make her brochure interesting. Even though I am not diagnosed with anything, I felt it was an invasion because I have talked on this forum more than I have to people I know about my illness. I am not being mean Daisy, just looking at it differently.
I'm sorry to create so much misunderstanding.
I think I should have explained myself more clearly earlier.

I will not take any words from anybody unless I ask first for permission.
As for my project, it is assigned at start of the semester, as long as it helps the
ALSBC society generate more ideas in order to raise awareness and funds we
don't need to do anything artistic, it could be as technical as a general branding
for the society.

I am sorry I seem like I don't know anything about the disease.
I have read Tuesdays with Morrie and also watched the film. I have done research
online searching for biological symptoms of the disease and read some of the PALs blog.
I have also read books on motor neurons and the brain as well as information on ALS societies outside North America.

I have done the research but I know the people who understand it the most
must be people who are associated with ALS directly.

Also, my objective is to raise awareness. But initially, the public who are not associated
with the disease directly would be apathetic in knowing what ALS really is. If
I throw them this huge amount of information they won't even read, I don't think it is
as effective as having something visually that stirrs their thinking and interest in learning
the disease.

As for the idea I'm working from, I personally loves to draw and I believe people
express themselves in their drawing and writing. I know people get offended if
they know they are exposed without consent.

Originally I wanted to interview some people living with ALS to draw themselves on
how they feel it looks like.

Before I went with this idea, I have went through several trial and error and finally came up with this idea a bit too late and constrained in time to set up appointments with the ALSBC society.

Therefore I am not asking for permission of the words said, but by it, derive illustrations
to be put on bookmarks, cards, bus shelters, posters to be handed out or exposed
to the public during ALS awareness month, which is in November (BC).

The only thing I ask for permission will be if I can put beside the illustration the name of the people I received consent and feedback. It doesn't have to be full name.
(You know who you are! Thank you again for sharing)

I hope I have cleared the mist a little.
 

ltr

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I am very happy that you watched the movies that were suggested. That shows just how serious you are about your project. You have explained wonderfully and sorry for the misconception of it. Sometimes we have to explain more for others to understand. Hope you do well on the project. And you're definitely right about the public being apathetic. Until I began with the symptoms that I have I did not know or understand PALS. Even if this disease is ruled out for me, I will have a new understanding and that definitely has changed me. The people on this forum are the most caring and understanding of any I have talked to. Many times, as in my case, friends run the other way when I developed these symptoms. They check in occasionally, but since I can't keep up with them, they have lost interest. Anyway, thanks for explaining and I am glad to hear of your intentions. Leslie
 

Marjorie R. Wilcox

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How it feels.

To Daisy, one person speaks of ALS as feeling like they are melting wax. I describe my husband and what we are going through is like : being happily engaging in a close relationship in a lion's den, knowing the all the lions are coming........ and soon. M
 
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