question for vets

Status
Not open for further replies.

Sunvista

Active member
Joined
Sep 28, 2014
Messages
55
Reason
PALS
Diagnosis
09/2014
Country
US
State
Virginia
City
Virginia Beach
When you began losing your speech what alternatives did the VA offer if any? My VA center here seem totally ignorant about ALS. Or I haven't gotten to the right person yet. They were recently rated worst in the country for appointment lead times. I still don't have a PCP (since November) so I'm not sure I should even bother with them since I have pretty good health plan.
 
Ask about neuroswitch. It is a new sgd option and is being offered at some VAs. It is supposed to be easier to learn than standard dynavox and you can use it even if you have minimal muscle anywhere they say
 
This is a friend of mine here in Australia using the neuroswitch and they are totally thrilled with the results of having it.

http://youtu.be/ctk1jOAvTKM
 
That is very cool. What did he use before? How long does it take to spell out things that are not stock phrases? Do you know?
 
Sunvista, tried to send you a private message but it said you couldn't receive them! Anyhow, you should NOT have a long wait time for apps. As an ALS patient, the VA gives you priority in scheduling- you may have to tell the scheduler that. As the VA doc told us, ALS patients don't have time to wait! You may want to check and see if there are other VA hospitals in your state that have spinal cord injury specialty clinics ( ALS is treated within that specialty) and all your needs can be met there. No, all VA hospitals are not equal, especially with this supposedly rare disease! We found Tampa to be excellent because they had over 300 ALS patients. Something we learned is once you are assigned a primary care doctor and have had a visit, you can get most of what you need by phone calls, if you know what you want. The exception is pwc, where it is customized for you. We dealt with the VA in our home state of Michigan as well, and got most everything via the phone!
 
SunV you're being poorly served by your local VA. I suggest that you consider pursuing support under the Veterans Access, Choice, and Accountability Act. If a specific care cannot be provided within 30 days you are entitled to obtain it on the open market.

When it comes to the durable medical stuff you'll definitely want to try this route.

Call them at 866-606-8198
 
That is very cool. What did he use before? How long does it take to spell out things that are not stock phrases? Do you know?

Can't answer completely Nikki, but I know a friend did a fundraising campaign for them to purchase it and it was as his speech was going, so I'm not sure what he may have used before this.

I would think the time to spell out things would be similar to any of the other text to speech, it has predictive text, so as fast as you can blink ;)

We had a jelly bean switch for Chris's iPad with Predictable. It worked well, but Chris just couldn't/wouldn't (he had FTD) work at it enough to get used to it. He wanted to talk instead, and would get very frustrated with me and others thinking that he was still clear enough that we just couldn't be bothered to try and understand him.

I found that watching this video gave me such a warm feeling of how wonderful it is when I see PALS embrace whatever they can use to maintain that communication. I also loved how his kids supported all of this.

I say start getting used to some form of technology communication as early as you can so that you are well used to it before you need it. I got the iPad set up for Chris very early, but again he wouldn't work at it, so by the time he needed it his frustration was high and his energy for trying was nearly zero.

SunVista, the iPad apps are very affordable if the VA isn't coming to the party?
 
arrrggghhhh mod ...
 
Don't give up on 'em Sunny. If not for yourself, for other vets with ALS. You need to find the Speech Pathology dept.

They gave me a 12 inch Tobii, which feels like it weighs about 8 pounds. I'm just beginning to use if after six months. I'm afraid to carry it down the stairs, which limits its use.
 
A former CALS said her husband like his I-pad mini with Verbally.
 
The VA should get you everything you need and pronto. That being said some VA's are better at pronto than others. Are you working with a Paralyzed Veteran Rep? They are good at making sure you have the correct rating and they usually have good contacts on the VHA side.

If you can travel to the Durham VA you might find some success with getting equipment and services through them. Dr. Bedlack is the chief of neurology there and he is the chief of the Duke ALS Center. We often go to the ALS clinic, figure out what my husband needs and Dr. Bedlack then enters it into the VA system the next day. There is a new chief of prosthetics at the Durham VA and he is very quick at getting what you need.

The Durham VA also embraces telemedicine. My husband only 'sees' Dr Bedlack at the VA via telemedicine a few times a year. He physically sees Dr Bedlack at the Duke ALS clinic about twice a year, more if needed.

The social workers at the VA are excellent as well. Any time we have had a problem with care or equipment I contact them and they are on it. I am working with them on the caregiver program to include an ALS peer mentoring support program so we can help one another navigate this complex system.
 
Mary, we found the VA social worker was our best resource as well.
 
You need to go to a VA ALS Clinic. the VA came out with new guidance in a July 14 Instruction titled VHA HANDBOOK 1101.07, you can get it on line using any of the search engines, Your other choice is get in touch with your local PVA rep. I go down to Boston which is one of the ALS clinics, they have assigned me a social worker and seen to my every need The closest clinic to you maybe up in DC. Good Luck send me a note if you have any other questions.
 
>I still don't have a PCP (since November) so I'm not sure I should even bother with them since I have pretty good health plan.

go to a clinic if you can -- say "100% disabled vet" and "als" -- they moved our appmt from 45 day to the next day when Sandy said this.

luck!



Max - Thursday, January 22, 2015 5:10:06 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
 
I was diagnosed with bulbar onset ALS a year ago. The VA has been very supportive here in Pittsburgh. The doctor who did the nerve conductance tests on me through my health insurance also works at the VA here in Pittsburgh. If your VA is clueless about ALS find one with in travel distance that has the capability. They do exist. I am sorry to hear of your disappointing experience. Seems to me there should be a VA facility that handles ALS in your area because there is so much military in that area. Contact the ALS Society. They should be able to point you in the right direction. This makes me realize how fortunate I have been with the help I have received from the VA, the ALS Society and my health carrier UPMC. i am typing this response on a Tobii speech assistance tablet that the VA provided me. You are eligible for 100% disability from the VA if you have ALS. The bureaucracy can be discouraging but don't give up.
 
Status
Not open for further replies.
Back
Top