Help from a Veteran please

[Grumpy'sWife]

I have searched the threads and I am sure this has been discussed and I just can't find it. After contacting the PVA just yesterday and talking with our new rep from there he said he would pass our information on to the ALS clinic coordinator at the Cleveland VA.

Today she called and is fast tracking Grumpy's into the healthcare part and wants him to come to Cleveland next week to meet the ALS team, have a sleep study and possibly put in his PEG.
I mentioned that we have an appointment at the local ALS clinic here and she said we could cancel it since the VA would provide all the healthcare he needs.

My question is do you just see the VA neurologist, PT, OT, etc or do you see outside the VA system too? Hopefully this is not a silly question, I just want what is best for my Grumpy.

Thanks
Kaye

 

[dalvin]

I use both. My local va does not have an ALS clinic. So it's an appointment with one doc, then maybe a day or two or even a couple weeks later another. I use them because they provide all the meds, equipment and outside services, like an aide, I need. I also go to the multi-discipline clinic at mcv. Va does not cover the trip to mcv, private insurance does that. Much prefer the clinic at mcv

 

[Atsugi]

Excellent question. More people should ask it.

We traveled an hour and a half to the Tampa VA hospital for our ALS clinic, because Orlando had little experience with ALS. They arranged for us to have a room at a local (very nice) hotel, and would have covered the travel mileage if I had bothered to stand in line to claim it.

The VA model for ALS care is to have the patient stay in one room, then the relevant specialists come and visit you, one by one, over several hours, so that you see all your specialists in one trip. Of course, there's a break and a cafeteria available.

There is no problem using both VA and non-VA doctors. In fact, it's a good idea to keep copies of the records so that each can see the test results from the other.

 

[Atsugi]

Friggin' moderation keywords. What was it, "excellent" or "cafeteria" that got my answer sent to moderation?!

 

[Nikki J]

I don't know for sure but honestly think it was excellent. That got me modded earlier today. ( the other word in my post was Max!

 

[Nikki J]

I was just modded so think I am correct!

 

[GregK]

My VA in Denver has a Spinal Injury Clinic which sees to the ALS patients. Associated with the Clinic is both a neurologist (als familiar) and a pulmonolgist (sp?). This team covers way more than my civilian neurologist.

But I still also see my civilian neurologist. I did get non-VA physical therapy (pool therapy) as well as phys th from VA, but the VA PT, OT, orthopedics, etc. gives me all the support I need.

It never hurts to have extra eyes...

 

[Grumpy'sWife]

Thanks Dalvin and Atsugi for the quick and informative replies!
We actually live just 6 miles from the VAMC in Chillicothe Ohio BUT they have no ALS clinic so it will be a trip to Cleveland for the VA ALS clinic the first time. According to the coordinator after that we can go to Chillicothe and we would video conference with Dr. Selkirk (from Cleveland) and the neurologist there or continue to do the drive to Cleveland as needed. This is a 4 hour drive one way. She has arranged for a video conference next week for us to meet Dr. Selkirk and have a "get to know you" session which makes me very happy.

We will keep the first appointment with Ohio Health ALS clinic. It is next Friday. Although my head knows that this is what it is, my heart wants so badly to go there and have them say they were wrong and that he doesn't have ALS.

 

[Grumpy'sWife]

Thank you all for your replies. I tried posting a reply earlier but I don't see it. We will keep the first appointment with the ALS clinic here in Columbus. The VA ALS clinic coordinator in Cleveland will arrange a video conference at the VAMC in Chillicothe (6miles from us) with the neurologist that runs that program and we will go from there. I appreciate all the valuable info you wonderful people give! I am feeling a little overwhelmed and you take some of that away!
Thanks
Kaye

 

[Music67]

I also go to ALS clinics in both the Seattle VA hospital and Seattle's Virginia Mason hospital. I use Virginia Mason to get a 2nd opinion or viewpoint on some matters. Both hospitals use the same procedure that Atsugi referred to.

 

[affected]

honest Nikki, even a moderator gets modded?
Can you then clear your own moderated post from the cue?

sorry that made me laugh so hard

Didn't mean to hijack this important thread, please forgive

 

[Nikki J]

Everyone Tillie. Even David. And yes I can approve my own posts but since I can see posts in mod as if they went through I don't always know it happened!
Also sorry for hijack
Agree do both places. And I join you in the wish for another answer for Grumpy

 

[Grumpy'sWife]

No problem on the hijacking ladies! I was just so glad to get some more information. I will say how amazing the VA has been, they called twice more today. Once to set up the video conference with Neurologist who runs the ALS clinic and once to just ask if we had any emergency needs before our appointment. I was shocked and very relieved that it seems like they want the best for him too.

 

[affected]

That is wonderful. We need all the help and support we can get, and it is such a relief when the situation is taken seriously and true help kicks in.

 

[MaxEidswick]

>the other word in my post was Max!

oh great -- now a mod pariah!

I use all three -- private ins. to limit my burden on the va, the va for stuff, etc., and the hp health clinic to tell me I need to see other specialists ...