Things you'd like to say to people, professionals, and relatives about ALS

[Atsugi]

" Expedite, expedite, I have to constantly tell people everywhere when trying to make appointments. I have to explain over and over that this is a progressive disease and if it is ALS it is terminal. I constantly have to tell folks that we live hourly and daily not weekly and monthly."

As the CALS, I made all the appointments and did all the paperwork so my PALS could relax as much as possible. To get good service from clerks, I always started each conversation calmly with, "I hope you can help me. My wife is dying. She has an incurable disease and we need your help..." I took notes and treated the clerks very well. So we got excellent, prompt service every time. As a result of this technique, I think, we never had to fight with people to get what we needed.

 

[swalker]

Here is the document with more comments collected from PALS and CALS.

Kim, thanks for putting this together. Here are some specific comments. All are minor.

1. In the first bullet point (which was taken from one of my posts), "as much as or more about it than you do" should be "as much as or more about living with it than you do" (note the addition of "living with").

2. In the 13th bullet point "find out about the me and talk with me" does not make sense (probably a typo).

3. Most bullet points have a line break after them. The third one in the second bullet list does not.

4. I prefer numbered lists over bulleted lists when there are more than about 3 items in the list.

I think this is a valuable collection of thoughts and I really appreciate your efforts on it.

Steve

 

[KimT]

Thanks, Steve. This is just a rough draft. Tillie has not yet gone over some of it. Different parts will be used for different purposes. I'm making a note of your corrections.

Many of the comments were combinations of more than one comment that basically said the same thing. So many responses from different forums came in that I still have sorting to do. Some came from the local chapter and the Florida chapter. Two missing pieces are comments from ALS health care providers and up close and personal testimonies. I don't know about the latter but I am beginning to collect a few statements from doctors, nurses, PTs, OTs, etc.

Thanks again for taking the time to read it.

 

[Gorby]

Perhaps you could add a comment about PBA? Here's my attempt:

ALS has affected the part of my brain that controls emotional expression. I may laugh or cry in a way that makes you uncomfortable. I know that my response is inappropriate, but I cannot make my body obey what I am feeling inside. When this happens, I may leave the room or look away from you so that I can regain control. Please ignore these outbursts as they are quite embarrassing.


Thanks for doing this Kim - there's lots of good info in the list.

 

[affected]

Good idea to explain PBA or emotional lability Gorby!

Thanks Kim and Steve too, good noting on that typo and we will be formatting it all up at the very end, so there are some good tips and ideas there too

 

[KimT]

Thanks, Gorby. I've added your comment.

I am also adding a better description of ALS...exactly what it does....and will incorporate PBA into this description. This will be part of the introduction.