A question on ALS for a design project

[joy_chien]

Hi

my name is Joy and I'm a design student at Emily Carr Institute. I'm working on a school project to design brochures, imagery etc in order to illustrate what ALS is and 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, etc. Our class had read Tuesdays with Morrie and it did give some description from the point of view of Morrie - he said that his body was wax melting away - but it didn't go into that much detail and its still pretty hard for me to imagine what its like just from reading that bit.

I'd greatly appreciate it if any of you can give me some idea of what ALS is like - or if you already know of a board or certain threads in which this is talked about, please point me to it.. Thank you!

 

[Al]

Hi Joy. If you just go to the general discussion forum and start back through the pages I'm sure you will find some of what you are looking for. There are more than 1100 threads or topics. If you have any specific questions we may be able to answer them. I'm not familiar with your school, could you tell me what city it's in?
AL.

 

[joy_chien]

my school is in Vancouver, BC, Canada.

this is the organization we're working for -- you can see a blurb on their site and mentions Emily Carr. (if you view their page in Safari you'll have to scroll down because for some reason there is a huge blank space on the main page when you view it in that browser...)



I thought of going through the threads, but I thought that the info here might've been geared more towards practical, specific issues. Nevertheless, I will look into these thread more.

 

[Jamiet]

Joy,

I will try to help a little.

ALS first starts as a twitch, a weak foot, weak hand, or slurred speech. There are two forms of ALS, Bulbar Onset ALS (Speech Swallowing) and Limb Onset ALS (Hands Feet). The symptoms at start are usually very small, and unnoticable, until the weakness (of which is the hallmark of ALS) becomes noticable. This is usu. noticed by dragging a foot, dropping things and not gripping things with hands or difficulty eating and speaking.

Along with the gradual weakness of the areas involved above, there are several emotional issues that consume an PALS (Person with ALS), starting with the possibility of the psuedobalbular effect, whihc is in about 50% of cases. This brings periods of uncontrollable periods of lauging and / or crying. It's part of the way the disease affects the brain which causes this.

Finally, there is the pre-diagnosis period, from when symptoms start to actual diagnosis. This period is usu. 1 year average. During this time, the paitient ususally has vast amouts of anxiety, anger, depression and many other pshycholigcial affects of having symptoms and problems and not knowing what you have, but have a good idea of what is giong on.

Usually after diagnosis...i think, since i'm not diag at this time, someoneelse could fill in from here.

To say the least, ALS is a very mean disease, it turns you and your entire families and persons around you lives "upside down". It's rapidly progressively nature usually means that an PALS average survival after diagnoses is two - five years, however, various factors can extend this to 10, 20 or more years. approx 75% of patients die in the first 5 years, 10% within 10 yrs, 10% within 20 yrs, 5% more than 20 yrs.

Hoped this help, please let me know if you have any more questions.

Rgds,

Jamie

 

[joy_chien]

thanks Jamie!

 

[Al]

Hi Joy. I just remembered that the NFB has a Bearing Witness Series and did a documentary on a man called Robert Coley Donohue from B.C. and it would be just the DVD for you to watch. It is about $20 and would be money well spent. Your local library may have a copy. They followed him around for 3 years and talked with his family and caregivers and friends about their feelings and experiences. Watching it for an hour and a half I think would give you a great insight into the disease and how it affects people.
AL.

 

[joy_chien]

Thanks Al. I probably won't have have the time to watch it, since this project is due in a few days (I was already in a rush when I posted ) But thanks for the help, Jamie and Al.

 

[Al]

Hi Joy. Even if it does not help your project if you got the dvd and took it in to the class and watched it it would be worth it for you the class and the instructor. Trust me. If it's not I'll buy the dvd from you.
AL.

 

[DougFla]

First twitch?

...ALS first starts as a twitch, a weak foot, weak hand, or slurred speech....

Twitches seem to be the most common symptom people are concerned about, and they end up here concerned that they have ALS. I thought twitches/fasciculations in ALS are related to the re-wiring (reinervation) of bypass nerves to the muscles. Wouldn't a PALS experience some weakness prior to the fascics? If PALS' first symptom is a twitch, then is it a "normal" twitch, or the "worm crawling" fascic?

I remember my brother's fascics, and they were the worm crawling type (at the time I thought it looked like the overhead films taken of bombing in Vietnam). I don't remember what his initial fascics were like, and he said he experienced weakness prior to any other symptom, but soon afterward he had twitches and later, cramps.

Regards,
Doug

 

[CindyM]

Hi Doug-I see this is your first post. You speak as if your brother is no longer with us. Hope it is not so. When you are ready, write and tell us more. Cindy