VA support group

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chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
My Cals and I are at VA support group in Clarksburg WV
This group meets every three months.
We both like it and get a lot from it.
If a vet center near you offers this I highly recmmmend going at least once.
Love ya all
Chally
 

maryhahnward

Distinguished member
Joined
Jun 17, 2009
Messages
442
Reason
CALS
Diagnosis
06/2010
Country
US
State
NC
City
Wilmington
I'm so glad you have this Chally. We do not have one here in our area. I wish we did. Say hello to the lovely Beth for me!
 

Colawoman

Member
Joined
Feb 10, 2014
Messages
19
Reason
CALS
Diagnosis
02/2014
Country
US
State
SC
City
Summerville
We don't have that at Charleston, SC either, I wish there was a little more consistency in the VA ALS Clinics.
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
My local VA doesn't have group so we travel half the state.
Va pays travel and room so we make it a mini vacation .
We had 9 vets , 3 new guys sorry to say but we lost no one in last 3 months so that was good.
Wish we talked more on the disease and tips/ tricks to deal with it.
We spent a lot time on va benefits, oh well still good.
Hey Mary good to hear ya I will tell beth and howdy to tom. Love ya all Chally
 

DaChief

Distinguished member
Joined
Dec 6, 2016
Messages
191
Reason
PALS
Diagnosis
12/2016
Country
US
State
Florida
City
West Melbourne
I d not know if there is one here in FL either. Maybe Steph knows about the Tampa VA?
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Chief, Dr. Wilson does have a group. If you cant make the trek, phoning in is an option. They do it like a conference group call. They are very beneficial...lots of input on what has worked for others, help with stress and VA issues, etc. Dr. Wilson used to do them on Tuesdays at 1 pm. I would email your doc thru ebenefits and they will get back with you.

If you have Dr. Wilsons card, I think her email is on it. Steph
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,773
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
I edited this out in my post on the Thread concerning Online Shopping

After I left military service I pretty much avoided VA Medical using civilian doctors. Years ago I too had a few experiences so many Vets wrote about. Since my award and reading the many positive posts here I said, "Ok, let's see."

I've had two VA appointments and each came within two weeks. I am pleasantly surprised. Because of my left foot my walker with two wheels and tennis balls needed an upgrade. The VA set me up with one with four wheels and hand brakes.

I found the concern and caring of the doctors and nurses great. What did take me by surprise is that the doctor brought up future directives. I said, "Aren't we getting a little ahead of things here?" He said, "No... it really helps if it is done now." So I agreed to an counseling appointment.

Chief, I hope something works out for you.
 

DaChief

Distinguished member
Joined
Dec 6, 2016
Messages
191
Reason
PALS
Diagnosis
12/2016
Country
US
State
Florida
City
West Melbourne
Thanks Steph. I will contact her.

Al,
I had my first interaction with the VA earlier this year. I am retired military so I have had Tricare and private doctors since retiring. I will admit my first interaction with the small VA clinic in Knoxville left a lot to be desired. The PCP they assigned me didn't have a clue about ALS and refused to fill a prescription that the Mayo in Jacksonville had given me because "he didn't want to be responsible for monitoring me". My next appointment was in Johnson City a couple of hours away at the VA Hospital. Everything was different there and the entire staff was wonderful. They hooked me up with a new modified van, a power wheelchair, cough assist, suction, etc and I needed none of those yet. They were even aware I was in the process of moving back to Florida so they could have easily passed the buck. My local PCP and staff at the Viera VA Clinic are outstanding. She only has 100 patients assigned so can give the time needed. I spent a week at the ALS Clinic in Tampa a couple of weeks ago and I found the entire staff to be outstanding as well. They set me up with a remote medical monitoring system so I could have appointments via video and it has a stethoscope as well. On Friday they sent a mobile pulmonary tech over who did all the testing in the comfort of my house. I could not be more pleased with the support I am getting from the VA. I have heard all the horror stories though.

Regards,
Bruce
 

frankb

Senior member
Joined
Jun 8, 2011
Messages
555
Reason
PALS
Diagnosis
10/2010
Country
US
State
Georgia
City
Sandy Springs
Really like Tampa's conference call-type support group. Any idea how I can access???
 
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