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slp1207

New member
Joined
Apr 11, 2012
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6
Reason
Learn about ALS
Country
Uni
State
LA
City
Hammond
Hello all,
I hope you are having a wonderful week so far. I am a graduate student in speech-language pathology who is currently taking a motor speech disorders course. Of course there is various information about ALS online and in the textbooks but I would love to attain a personal account of someone who has (or is a close family member) of a person with this disease. I suppose I am interested in ALS particularly b/c we had a family friend who was diagnosed and passed away about a year ago. If you know of anyone who would be willing to share information or a personalized account that would be greatly appreciated. Thank you!
 
What do you mean by a personal account?
 
I imagine that she means telling your personal story concerning ALS, Ms. Pie. Maybe answer a few questions. Like all the other students that come here do. ;)
 
If it could be done via text or pm's, I'm game! And I believe you don't use last names if you are chosen, correct?
 
Sometimes I think people really enjoy reading how bad somebody is, I really hope I am wrong I would think if you were around that family friend you would know about ALS
 
Uh, like what, exactly? How fast their tongue failed them?
 
I'm a wee bit confused. Do you think she's not on the "up snd up" as some say? Even though I'm usually cynical, if she's not for real, it went right over my head.
 
I took her at her word but we all know I'm a chump, at least until the second posting, lol
 
Hi all,
Let me just tell you a bit about me, and then you can decide if you want to share any information about your experience with being diagnosed with ALS. I am in graduate school for SLP, which has always been the ideal job for me ever since I worked w/ a little girl who had Rett's. She could not (and will never) be able to speak for herself, and I realized how much many of us take communication for granted and how helping someone attain or retain that would be very rewarding.
A number of years ago a family friend was diagnosed with ALS. Her husband took her to Brazil? for alternative treatments, and I recall her being wheeled onto the beach so that she could see the waves in the summer when she was at our facility. She passed away about a year and a half ago and I felt sad that I did not reach out and try to help her in any little way that I could.
Now I am learning about ALS and other neurological diseases and realize that I may have the honor of working with a person with such a diagnosis one day. I feel that learning more about it would allow me to become a better clinician, to become better at serving others. I know that nothing that can be said will quite explain the experiences, but any information would be greatly appreciated.
Have a wonderful night. :)
-Stephanie
 
I think about how wrong I was to this day to not just sit with her and just listen to anything that she had to say. I suppose I was intimidated? Maybe I was spineless? I think about her everyday and wish I had spent time to just help in any way I can. You are right it was not right of me to not approach her or become very involved with what was going on. I suppose I will regret that for years to come. In every person that I work with that has ALS, I'm sure I will see her. I will think about her, and how I could have done things differently.
 
I think about how wrong I was to this day to not just sit with her and just listen to anything that she had to say. I suppose I was intimidated? Maybe I was spineless? I think about her everyday and wish I had spent time to just help in any way I can. You are right it was not right of me to not approach her or become very involved with what was going on. I suppose I will regret that for years to come. In every person that I work with that has ALS, I'm sure I will see her. I will think about her, and how I could have done things differently.

A couple of small pieces of advice to keep you from falling into the minefield. One, the ALS patients (we call ourselves PALS) that you will be dealing with most will probably not to be able to communicate efficiently with you verbally, so learn and prepare a variety of methods for getting histories, evaluating function, etc.

Second, expecting a PALS to tell a long story verbally or in written form will frustrate both of you. Instead of essay questions, use multiple choice or other forms of short answer questions. Do your thinking in advance and provide easy ways to gather the information you need.

One further piece of advice: make sure that every ALS patient and caregiver that you deal with learns how to communicate with the basic letterboard. Don't just hand them a URL where they can buy one -- have a demonstration letterboard physically present so that you can train both PALS and CALS how to use the basic technology efficiently. If you don't know why I'm suggesting this, do a site search for Dynavox, Tobii, and just " communication device" to see how often AAC turns out to be a frustrating experience in PALS families.

Good luck to you.
 
In your field--you might do great things for PALS with regard to helping develop tech for communication, such as the board trfogey mentioned.

One of the things that frustrates many here--if you've read multiple posts--is not being able to communicate their wants and needs effectively.

I'm sure the local ALS chapter in your area would welcome someone who might volunteer some time and expertise to PALS.
 
Hello,
Thank you for this vital information! This will help me with future clients for sure! Would you mind if I asked you a few questions about yourself and the journey that you have had since being diagnosed?
I look forward to talking to you!
-Stephanie
 
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