Short film about ALS/MDS would like your input

[Joseph]

Hello,

I am making a short film about a young man suffering from ALS/MDS. The protagonist of my film, has a tracheotomy, and communicates via a computer. I know ALS in younger people is rare, so I may have to change it to another MDS disease. I greatly appreciate your help in enlightening me on the following aspects:

What is an average day like?

How do you move from your bed to your wheelchair?

For those who use a computer to communicate, how does that work?

If you do not feel like using a computer at times, is there a short hand way of communicating with your caretaker (i.e. blinking, rolling eyes, ect…)? If so, what do they mean?

How much head movement can you do?

Do you ever get annoyed, irritated, or angry with your caretaker? Why?

Have you been treated unfairly, rudely, or made to feel uncomfortable by other individuals because of your condition?

How do you eat? What do you eat?

Can you choke from eating or drinking?

Can a tracheotomy tube get dislodged? How?

What are some life threatening accidents that have happened to you or someone you know?

If someone was familiar with ALS/MDS, and you never met them before is there a way, that person would know you have it? What terminology might they use, if they were speaking to you?

Thank you for your time.

 

[jamorel]

I think you should try to hold a few one on one interviews with someone in your area so you can see what ALS is like, rather than be told. I also think that your character should fit the disease rather than vice versa. However, ALS can strike at any age and there are no shortage of examples of people from their 20's up who you can speak to. I appreciate your efforts, but just as a bit of advice, I would pick one or two people you have access to and step into their lives for a few days so that you can ask educated and thoughtful questions.

You may also want to ask one question at a time and ask specific people. Most people on here do not have a trach, or at least most who I talk to. Joel has one and he has had it come dislodged lately... ask nicely and he may tell you more... or scroll through the posts as he spoke about it only a few weeks ago. The same in regards to challenges and frustrations.
I think if you take the time to get to know people here, you will learn much more and benefit so much more both personally and for your short movie. I hope that helps.

 

[joelc]

If you are sincerely interested in finding out what life is like living with ALS and a trache and vent I invite you to come spend a day, or two, with us.

You can fly into Vancouver and we will pick you up. The questions you ask are hard to answer without seeing first hand. All your questions could be answered by a visit to us. I am in my late 50's but there would not be any difference if I was younger.

You can click on my name and go to my home page, there is a lot of information there about my experiences.

 

[halfin]

ALS is both progressive and highly variable in how it hits people, so no two PALS will have exactly the same experience in terms of how disabled they are at any point in time. Usually people do not get a tracheostomy until late in the disease, but some people have their breathing muscles affected earlier so they may get one sooner. Actually most PALS never get a tracheostomy but allow nature to take its course when they stop breathing.

A tracheostomy by itself doesn't necessarily prevent speech. You may recall Christopher Reeve after his spinal cord injury had a trache but could still talk very well. With ALS what kills speech is loss of the muscles of the mouth area. It is common for PALS to lose the ability to speak well before they need a trache.

Likewise in term of transferring, etc, different people will have different amounts of ability to help with the process. In the late stages where all muscle control is lost, usually a large sling lift is used to raise people and move them from bed to chair.

As far as your story, you could legitimately show almost any combination of ability and disability for your ALS patient. If he's using his computer he must be able to use his hands, but perhaps not his legs, and that is perfectly reasonable and realistic.

For computer use, there are many systems available. Some people use a regular laptop with a speech program. Others use a custom device with a touch screen, looking like a large, thick, clunky iPad. Other devices are smaller and may look like a typewriter keyboard or even just a cell phone. Some programs are oriented around typing and then they will say the words, while others use a touch screen with icons to represent common phrases or requests.

In terms of eating, most PALS who can't speak also can't swallow. Usually they will use a feeding tube called a PEG, which goes directly into the stomach through the abdomen. This sounds kind of gross but it is unobtrusive and usually not noticeable while dressed. People eat a liquid diet fed through the tube, usually a commercially available formula. If you would prefer not to show this then you could have the person still be eating, but he would probably mostly have shakes and smoothie type foods, that would be easy to swallow.

I am not too far along yet so I don't have experience with most of what I have written here, so I am not a good person to describe the emotional impact of life with these more severe levels of disability. If you read the boards here you will find many stories of experiences good and bad. I do appreciate that you are taking the time to educate yourself about the disease.

 

[Joseph]

Joel, thank you for the offer, although all my funds are currently being used to finance this short. If there is a member who wouldn't mind being interviewed either over the net or by phone, please PM me.

Finally, the answer to this question would be tremendously helpful.

If someone was familiar with ALS/MDS, and you never met them before is there a way that person would know you have it? What terminology might they use, if they were speaking to you?

Thanks

 

[Joseph]

Let me explain, I'm currently struggling with a scene. In the scene (a chance encounter), a medical student (some knowledge of ASL/MDS) meets our protagonist for the first time.

I would like some unique action (between the two of them), so that the medical student recognizes the condition, without having to say too much. Therefore, answers to the below two questions would be tremendously helpful.

1. If someone was familiar with ALS/MDS, and you never met them before is there a way that person would know you have it? What terminology might they use, if they were speaking to you?

If you do not feel like using a computer at times, is there a short hand way of communicating with others (i.e. blinking, rolling eyes, ect…)? If so, what do they mean?

 

[indigosd]

I will not reply...I will not reply... The Monkey's INSIST I reply!

Joseph, hmmmmm....This feels very similar to this post that I have copied and pasted below

10:33 PM #1 (permalink)
rjmix
New Member (Say Hi)
Registered Member
Join Date: 2009
City: Los Angeles
State: CA
Country: US
Diagnosed: 00/0000
Posts: 8
I'm writing a movie and I've got a question...
I live in Los Angeles, CA and am currently writing a feature film screenplay. Although I'm a first time writer (if you Googled me you won't find any credits), this is the real thing. I, and a good contact, will be pitching this script this summer and are trying to make this as realistic and professional as possible. And if it comes out on paper as good as it looks in my head, it's going to be a great movie. My main character suffers from ALS and I've been conducting research and reading this forum to try to gather as much information as possible. I really feel that if I'm able to make this character come alive, he will shed a new light and awareness on the fight against ALS. However, there is at least one question I can't seem to find an answer to:

Is there any situation during the course of ALS that would warrant a patient getting immediate medications or treatment to prevent death? Like with a strong allergy, someone would need an epi-pen shot or with diabetes, they would need insulin. From what I gather, ALS is a slow degenerative disease and I can't find anything immediate that might take place. The reason I ask is I've got one dynamic scene in mind and if I could link that with my character's ALS, it would be extremely compelling. If a patient came down with pneumonia or a cold and that, coupled with the weakness of breath associated with ALS, made it so hard to breath that he needed an inhaler or oxygen to stay alive, would that be plausible? Thank you so much for your help and I truly hope that my film will have a huge impact on the awareness of this disease.

 

[indigosd]

So, that being said. WHY ARE YOU doing this, "I am making a short film about a young man suffering from ALS/MDS. The protagonist of my film, has a tracheotomy, and communicates via a computer. I know ALS in younger people is rare, so I may have to change it to another MDS disease. I greatly appreciate your help in enlightening me on the following aspects:"
To me, it is appears that you know very little about ALS and that your concern is not altruistic about assisting the victims of this ghastly disease.
1. We have plenty of individuals and organizations that are making MONEY off of our loved ones lives. What we do need are Hero's and Shero's that will fight for us by demanding a treatment and a cure!
2. A serious and legitimate screen writer would research his topic and not ask the victims of his story line to do his homework for him.

Jamorel gave you excellent and gentle advice. Joel invited you to come and stay with him. Halfin wrote paragraphs and WHERE IS YOUR sincere appreciation? My sincere hope is that you take Jamorel's advice to heart and that no one else replies to this thread. You obviously do not have a clue about what this journey is like for our PALS. You ask 12 very personal questions on your FIRST [?] post and yet, you do not disclose one personal fact about yourself-this does not sound legit to me in the least.

 

[indigosd]

HELLLLLOOO Joseph! I guess that I was correct as you have not made a reply or answered my questions.