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darbrooks84

New member
Joined
Jun 23, 2014
Messages
4
Reason
PALS
Diagnosis
06/2014
Country
Uni
State
Illinois
City
Potomac
Hi, I am a 58 year old women who was just diagnosed on June 22, 14. Just wanted to say hi. I am having some difficulty swallowing and my speech is impaired. I was managing a store however they have demoted me because of the illness. Sorry I am rattling on

I have a lot of questions but right now it is nice to know that there are others willing to share their experiences.
 
>Hi, I am a 58 year old women who was just diagnosed on June 22, 14.


that sucks. I am sorry to hear this, but always consider a 2nd opinion by an ALS specialty clinic. ALS is very hard to diagnose and there are lots of other things that might be the issue. When in doubt always double check.



>Just wanted to say hi.

Hi, and welcome. My name is Max, I'm 62, my wife Sandy is my CALS -- Lucky her :). You can read stuff about me in the blog area. Mostly it's kids and dogs, and pictures of kids end up as I have the photography disease as well as ALS.


>I am having some difficulty swallowing and my speech is impaired.

look into voice banking. You can find information about it here and by searching the Internet. My speech is too far gone for me to try now but if I had known, I think I would've taken more seriously.

I also have serious difficulty swallowing, which also impairs my ability to breathe in.

For those of us who have ALS, many will say "It Is What It Is".


>I was managing a store however they have demoted me because of the illness.

if I were you I would contact the MDA and your local ALSA and ask about this. If by chance you are a veteran, contact the PVA immediately.


>Sorry I aallm rattling on

like in the cartoon, on this site you never have to say you're sorry. :)


>I have a lot of questions but right now it is nice to know that there are others willing to share their experiences.

ask away. I think you'll find a lot of friends on this site. But first we all hope that your diagnosis is for something else. We always have our fingers crossed for that kind of mistake.

Kind regards,

Max and Sandy
 
Welcome and sorry you have To join us. This is the best place for you to be as we are all here for one another. You are not alone!

Debbie
 
Welcome to the site, I am sure you will find it a great resource and there is a lot of humour and support. As far as rattling on, you are such an amateur. Now I on the other hand have had to go back and shorten my missive as we are allowed only so many words. There have been times that I copied half of what I said and pasted it to a second message. Part of dealing with this disease is having a safe place to vent, and ramble if needs be. You see, I have already written more than you on my reply.

Paulette
 
>Now I on the other hand have had to go back and shorten my missive as we are allowed only so many words.

:)

don't kid yourself we hang on Paulette's every word!
 
Welcome, I am 53 and had similar symptoms, I just had my one year anniversity from diagnoses. I would recommend disability, I tried to work for a few more months and have doctor bills that medicaid would have paid. Voice banking is a good idea, mine is gone, I have a type and speak but it's not my voice.
Janie
 
Welcome, although I'm sorry it's to a club like this!

Have you considered a PEG tube yet? My husband (bulbar onset) got one very early on in his disease (Nov. 2012). At first he only used it for his meds as pills were so hard to swallow. But as he lost his ability to eat, he increased his intake of nourishment drinks via PEG. He has kept most of his weight on and perhaps this has helped in his slow progression (just speculating). He is so glad he did this, although he was so against it in the beginning.

Voice banking would have been nice. I miss "hearing" my husband's voice. His speech was too badly affected by the time he was diagnosed. Do it before it is too late if you are considering it.

Don't hesitate to ask questions or share your fears. We're all in this together, PALS and CALS alike! Blessings to you!
Nancy
 
I am 57 year old retired math and computer science teacher with limb onset. I'm getting by with the support of my friends (including new friends from this site) and my family. After 6 months the initial shock has worn off for me and I've gotten pretty good at living in the moment. Hope you will find some comfort here too.
 
I am sorry for your suffering. I am interested in voice banking before I too lose my voice but I do not know how to go about getting the software or hardware-any ideas would be appreciated
 
oh, for ****'s sake:


[PDF]
Guidelines for Speech and Voice Banking - ALS Forums
www.alsforums.com/guides/documents/Voice-Banking-Guidelines.pdf
Guidelines for Speech and Voice Banking. The Assistive Technology Clinic (ATC) is an interdisciplinary clinic providing services for augmentative and ...
ModelTalker Speech Synthesis System
www.modeltalker.com/
The voice "banking" process is guided by the ModelTalker Voice Recorder, our computer-assisted voice recording software (now in an experimental web-based ...
‎Download - ‎Demo - ‎FAQ - ‎News
Voice banking - Wikipedia, the free encyclopedia
en.wikipedia.org/wiki/Voice_banking
Wikipedia
Voice banking is the recording of one's natural voice for the possible eventuality of losing one's voice. Software then uses these recordings in a speech ...
Augmentative and Alternative Communication (AAC ...
webor.alsa.org/site/PageServer?pagename=OR_8a...
ALS Association
Voice banking is the process of recording your voice for possible future use on a communication device. This is something that even newly diagnosed PALS may ...
Voice Banking Options for ALS Patients
als-ny.org/blog/ask-ben-options-voice-banking/
Apr 4, 2014 - In this article of Ask Ben, our Assistive Technologist discusses voice banking for ALS patients.
For Those Unable To Talk, A Machine That Speaks Their ...
www.npr.org/.../for-those-unable-to-talk-a-machine-that-speaks-thei...
NPR
Feb 25, 2014 - John Costello, a speech pathologist at Boston Children's Hospital, is credited with inventing the clinical use of voice banking. He says it can ...
Voice Banking Solution & Payment Systems | ACI Worldwide
www.aciworldwide.com/...banking/voice-banking.a...
ACI Worldwide, Inc.
Call volume remains a constant for community financial institutions as consumers and businesses continue to view voice banking as an important service.
Banking for the Future | MDA/ALS Newsmagazine
alsn.mda.org/article/banking-future
Muscular Dystrophy Association
Nov 1, 2009 - Voice banking doesn't have to be complicated or fancy — but starting early is ideal. Banking can range from recording signature phrases and ...
New device helps patients keep their voices from diseases ...
www.miamiherald.com › Lifestyle › Health
The Miami Herald
Aug 2, 2013 - After evaluating Shearn, she got her started on voice banking. Shearn has been recording her voice every day for the past two months.
 
Thank you Max and Sandy,
I have a second opinion appointment this Wednesday and my speech is pretty bad so banking is out of the question. There are somethings th tare happening to me that I can not find as a symptom..like my jaw always hurts and my lower gums hurt. Also when I yarn or open my mouth wide it feels like my left side of my jaw locks is this a symptom? I have appointments with MDA set up ans I am going on FMLA , I have tried to work but I become tired real easily.
Have a wonderful 4th of July
Dar
 
Thank you Deb, alone with this is scary as I am sure you are well aware.
 
I am quitting my job in the next few weeks, this is too tiring and being in retail you need a voice and mine is pretty bad, getting worse every day. Oh well, I talked to much anyhow (lol) My kids told me that they never thought that my mouth muscle would go with all the exercise they got.

Have a wonderful 4th of July
 
Communicating is tough when you love to talk and can't, I can't even yell at my grandson when he is bad,lol. My mouth was one of my strongest muscles too.
janie
 
There are somethings th tare happening to me that I can not find as a symptom..like my jaw always hurts and my lower gums hurt. Also when I yarn or open my mouth wide it feels like my left side of my jaw locks is this a symptom?
Dar

Hi and welcome, so sorry you are here!

YES, my husbands early symptoms, before diagnosis involved:
slurring of speech
grinding his teeth
jaw feeling tight (I'm sure the teeth grinding was causing this at the time)
biting the inside of his mouth in his sleep
some slight jaw locking on yawning
jaw clonus (like teeth chattering)

All the muscles in the face and jaw are also being affected, not just the internal tongue and throat. It had us going to ENT, Facio-maxillary surgeons and dentists constantly as it seemed that his problems were jaw or teeth related and all things seemed to point to that for these specialists too EXCEPT the speech slurring. That always stumped them.

So he had 2 teeth pulled, bits of bone cut out of his jaw ... poor man, it was all ALS symptoms...
 
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