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DreamsEnd

Distinguished member
Joined
Jan 24, 2014
Messages
449
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
AZ
City
Cottonwood
As my pals is progressing so rapidly I am beyond frustrated at the treatment he has received at the Prescott VA. His less than a year old hospital bed and his less than two months old air mattress were not working correctly. It got to the point that his bed would raise and lower only and I couldn't elevate his head or feet. I called and called the VA and then called bed manufacturers and got guidance. Then a snippy woman from the prosthetics department called me and said, we have more than one veteran with problems you know. I said well, mine has rapidly progressing ALS and he's dying and. Has to sleep in his chair and ALS is supposed to be priority one at the VA. The DME for the mattress wouldn't call me back and I am very polite. So I called out PVA who contacted prosthetics and was told our bed problems were a priority and it would be handled soon. The PVA contacted the local mattress company office and had them here the next day. The company called me to schedule and hadn't at that point had any VA or DME requests regarding the mattress but their ALS patients are very important to them and they'd send someone right out.

In a PVA magazine last year, an article said that Secretary Bob McDonald gives out his cell number to Vets and doctors he's recruiting and published his number. I put it in my phone and after so many hassles with the VA, I sent a text to "Bob" as he prefers to be called and briefly begged for help. I heard nothing back but this week our VA Hospital Social Worker called and asked questions about his bed for a "Congressional Inquiry" that they had received. Jesse's new bed is arriving Friday. It would have been sooner but we couldn't be here yesterday to receive it. I'm assuming my text was forwarded to the appropriate DC contact.
Anybody need the number? 😄😄😄
Sherry
 
Sherry, I'm sorry that it took so much to get what your husband needed. Good for you for advocating for him! When being polite doesn't work, you just gotta be the squeeky wheel.
 
Yep. We definitely have to be our PALS advocates. And thank goodness for the PVA.
The VA usually does great work, but it's a classic inefficient bureaucracy run by committees of $%#@!

I made sure, in all my correspondence and phone calls, that they had total understanding of the importance and urgency of dealing with ALS before I even got to discussing the request.
 
Sherry, what a great job you are doing! After being a CALS for over2 years, feel like I'll come back in the next life as the world's most efficient secretary! You have to be to advocate for your loved one! Good for you for not hesitating to tell people at the VA that ALS vets get priority! Keep up the advocacy! Sounds like it is working for you. Know the intentions are good - but as Mike says, the VA is a bureaucracy ! Donna
 
good on you sherry! i have been pro-active since day one and things do move thru the pipe-line slow. yes i would like "bob's" #. my sah grant and van are up next to deal with.thanks chally
 
Good job, Sherry. As good as VA is, not all employees get the message regarding ALS.
 
Sherry,

Job well done! We have problems with the Prosthetics dept as well. Sometimes we haven't and we sometimes we have. It recently took 6 weeks to get a replacement battery. I too finally had to reach out to PVA for help on it. He was homebound without a new battery. Right now we are waiting on adaptations to his wheelchair. I won't go to PVA on it because this isn't dire but I'll track it and see how long it takes to get.
 
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