ALS and VA

gailann

New member
Joined
Jan 6, 2014
Messages
3
Reason
Loved one DX
Diagnosis
07/2013
Country
US
State
ky
City
silver grove
I don't know whether to cry or what. If I'm wrong to feel hurt please let me know. My husband has had ALS for 7 years. We go through the Cincinnati Ohio VA clinic. We switched from the Lexington, ky clinic due to distance. We had not heard anything from Cincinnati clinic in 3 months, I called, they said we are going to every 4 months, I said okay. All the months go by, it's been 9 months, I called today they informed me that hubby has had ALS 7 years, they need to see the ones that are worse off than him, so his clinic will be 9-12 months. Now this is a man that has no use of his lower limbs ,use of I arm only and the other is about gone.. Uses the bipap 70% of the time, his last pulmonary was in the 20s. Now we can't quit because I do have an aide that is through the V.A. What do I do? Oh, he also has frontal lobe dementia that was dx in April. Any ideas!
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,073
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Hi GailAnn,
Welcome and I'm sorry to hear about your husband's progression. I believe the VA has provisions for using non-VA clinics as well, especially in this kind of circumstance where they claim a capacity issue, even if you are using an aide through them. Your PVA rep should be able to confirm this, and I am sure someone here will pipe up.

That said, anything that you were counting on the next appointment to address or have questions about, let us know if there is anything we can help with meanwhile.

Best,
Laurie
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
183
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
City
Lenexa
You need to contact your local PVA service office to serve as an advocate for your husband. Immediate needs should be address through your PCP or by contacting Pulmonary or Neurology clinics directly for appointments outside of normal clinics.
 

frankb

Senior member
Joined
Jun 8, 2011
Messages
537
Reason
PALS
Diagnosis
10/2010
Country
US
State
Georgia
City
Sandy Springs
ditto on contacting the PVA rep. also, immediately email your congressman with same info you posted here.
most VA clinics do not have a dedicated ALS clinic. my local VA clinic pcp provides pallative care (orders meds and the like) but the atlanta va medical center has a certified als clinic.
also, lgelb and wilson2009 provide excellent info since the va can authorize treatment outside of va clinics if distance to va facilities is a problem. good luck!
 

gailann

New member
Joined
Jan 6, 2014
Messages
3
Reason
Loved one DX
Diagnosis
07/2013
Country
US
State
ky
City
silver grove
Thank you, I did contact our of a rep. Have not heard back yet.
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,534
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
GailAnn, this is heartbreaking to read. Quality of life is incredibly important, especially for someone who has dealt with ALS as long as your husband and you have. The point of some of those visits should be to see people who can advise you and provide resources to improve or maintain as much QOL as possible. Unfortunately, you are going to have to become the squeaky wheel--and the VA does respond to that. We were treated by the Durham VA, one of the very best in the country, and I still spent a LOT of time advocating and following up. It's time to get serious with those people. Which rep have you contacted? I'd make a list and start calling the following, and then follow up each call with email so they know there is a record of you having contacted them: his PCP, VA Social Worker, VA Patient Advocate (and if you don't hear back from the patient advocate, contact the head of the hospital), and PVA rep. Keep copies of all you followup emails (even something as simple as "thank your for taking the time to discuss XXX with me today. I'm looking forward to hearing back from you soon because, as we discussed,----." If you don't hear back quickly or don't get the answer you want, you will want to send copies of them with your email/letter to your congressman. Explain that you expect help with this journey. Every visit we made, and we went quarterly, we learned something or came away with new equipment or assistance of some kind. We didn't know we needed these things--that's why you see them--so they can recognize the need and recommend. Make a point of stressing that YOU as a caregiver for this many years need this help as much as possibly more than people who have a quicker progression. Make it very clear to them that for you to continue caring for him at home you need more support (trust me, they don't want to pay to place him somewhere, and whether or not you would ever all that it doesn't hurt to let them think you would. Ask the Social Worker where he will be cared for if something happens to you and he needs to be turned over to the VA for care while you recover--explain that since you can't get into the clinic there are things you need to know to be prepared). Also, the argument that the length of time he's had ALS determines need is a poor one---his current situation is what dictates need, and it sounds like he's at a point where you need help. As others have said, if they can't schedule him in they need to pay to send him to an outside ALS clinic (Durham sent us to Duke and then made all the purchases that the folks at Duke recommended). ARGH. I'm really worked up right now!!! Do you have a copy of VA Handbook 1101.07? It describes the VAs responsibilities for caring for vets with ALS. Read and reference it--it's possible the people you are dealing with are not all familiar with it. No vet with ALS should be ignored in this manner. Don't accept it. I'm sorry if this rambles, but the more I write the more worked up I get. This is a great place for support, and there is also a Facebook group for Veterans with ALS and their Caregivers. Again, I can't stress enough how valuable the Paralyzed Veteran's of American can be. They are probably the best advocates you can find for veterans with ALS--they know what our VALS need and which buttons to push to get it done.
 

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gailann

New member
Joined
Jan 6, 2014
Messages
3
Reason
Loved one DX
Diagnosis
07/2013
Country
US
State
ky
City
silver grove
Thank you so much for making me feel as if I have a reason to be upset! I called our pva rep. Friday he has not responded as yet. Hoping this week he will get back to me. I hate ALS so much.. My husband is always saying, I'm practily a head, why am I still here? I will post again when I have some news. Bless you
 
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