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pittsyltucky
Posted: Fri Mar 05, 2010 8:40 pm Reply with quote
*Johnny* Joined: 15 Sep 2006 Posts: 4268 Location: Pigg River District, Pittsylvania County, Virginia
Much love, Barry B -- Keeping fingers crossed!!!

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bopanic
Posted: Sun Mar 07, 2010 2:04 pm Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
from BB...

Friends,

Thank you so much for your various greetings which Steven Pape forwarded to me and for those who may have actually reached me in the hospital. This is a pretty busy "office" so it is sometimes hard to get me with so many doctors and nurses hovering over me all day. And it is somewhat hard to get on e-mail, but I may be able to do that better next week. So if I don't respond right away please understand.

Everything is proceeding to a hospital release on Monday afternoon which is my sixth day post transplant. I will move into a hotel facility which is actually connected to the Mayo Clinic (Inn at the Mayo). It is just like a Residence Inn and actually run by the Marriott. I will be in guest room #106 as indicated below. So, from Monday evening on I will be reachable their. Sometimes my cell phone doesn't work as good in the facility here, so I have indicated the phone number of the Inn at the Mayo as it may be easier to get a steady connection to call the room direct:


GUEST: Barry Breen, Room #106
c/o Inn at the Mayo
4420 Mary Brigh Drive
Jacksonville, FL 32224

1-904-992-9992, 7-106

I cannot have live flowers in my liver quarters due to the increased possibility of germs and infection for the next four months.

My next four weeks or so (however long they desire to keep me near them) will be full of tests and monitoring. Three times a week for blood chemistry and other necessary testing. This is essential for them to precisely adjust the anti-rejection medication and balance my bodies ability to be able to fight infection but not reject my new liver. Also, there are little things one learns regarding lifestyle shifts. An organ transplant is all about "risk management" (that is managing, or minimizing, the risk of exposure to some serious infection, either viral or bacterial). They recommend that one no longer eat off of salad bars or buffets due to the number of people, who might accidentally have contaminated food--this pretty much makes sense. There are lots of other things you can think of and on which they are training me to be mindful. Even traveling on airplanes in close proximity for long distances, a surgical mask is recommended for me. You see, I have to take anti-rejection medication (at least one, prograf) the rest of my life. The other meds will gradually taper off over the next year (and I am taking LOTS of them right now!!!).

I wanted to relate to you my personal feelings about all this. I am a very very lucky person. The Lord has looked over me and guided me to where I am now; this is not chance. Too many circumstances have arisen that pointed me to where I am which did not have to occur for it to be chance. So, the Lord has a plan, and it's certainly not necessarily and in most cases, not) ours. A friend reminded my that the famous baseball announcer Vin Scully (Los Angeles Dodgers) said something like, "If you want to make God laugh, tell him your plan."

I have so much gratitude for my doctors and medical practitioners and their assistants. I have tried to thank each of them personally, irrespective of outcome, for their going into medicine and ultimately crossing my path and treating me. I have met some of the smartest and best doctors in the world.

I wanted to let you know that everything continues to go very well.

The underlying illness which I have (amyloidosis), which caused all this as a result of my liver will take quite a while to resolve itself, if it can. And, I am very positively hopeful in that regard. It took a long long time for the amyloid substance to start afflicting me, and, as you can probably surmise it will likely take a while for my body systems to try and recover as the production of that is halted (by the new liver).

I man and his wife stopped in to see me a couple days ago, and he had a liver transplant in December. He also has ATTR amyloidosis but was in worse shape, health wise than me (difficulty walking and polyneuropathy in the hands and feet). We got to share experiences and it added some perspective for me.

On Saturday, the hospital allowed me to attend an previously scheduled amyloidosis support group meeting, and there were about 25 in attendance along with one of my doctors from the Mayo Clinic. Lots of discussions on the illness ensued. This is a very rare, but very underdiagnosed illness. It is suspected that there are many more cases of AL or ATTR amyloidosis which occur but not diagnosed or report. And, the obituary just reads, "died of natural causes" or "old age".

Lastly, for this message, I have been provided a chance by an organ donor, much younger than I, and I am so grateful for that person and those who convinced that person to be a donor when their life could not go on. I don't want to blow it; I want to do justice to the opportunity and take care of my body (and to do so without being a hypochondriac.....).

I look forward to the next time I see you all, and hopefully in the not too distant future.

Most sincerely,

Barry Breen
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Chigger
Posted: Tue Mar 09, 2010 8:33 pm Reply with quote
*Lucky No. 7* Joined: 30 Jul 2008 Posts: 1358 Location: McMinnville, Tennessee
Nice.

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bopanic
Posted: Mon Mar 15, 2010 12:04 pm Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
more great news...

Friends and family,

I wanted to provide you my current status in case I haven't talked with you personally. It has been quite a busy week here at the Mayo Clinic. As you know, I was released from the hospital on March 8 (Monday) and have settled into my hotel suite. I should be here for another 2-3 weeks and am hopeful I can return home after that. Everything continues to go excellent. They monitor my blood chemistry several times a week so as to regulate my medication and prevent rejection while still allowing me the ability to fight infection.

I actually went shopping at Wal-Mart with my caregiver on Wednesday! Carolyn Pape, my caregiver, and the wife of one of my best friends, Jim Pape, is an angel. She has kept me well nourished, and I could not have done as well without her. My doctors continue to be elated with my recovery.

I am taking lots of anti-rejection medications, but by the 4 month point I will be on only one which I must take twice a day for the rest of my life. I will continue to have blood chemistry done every week when getting back home until 4 months and then every other week to a year and then quarterly or as indicated by my Mayo physicians. I have no adverse side effects from the meds, and I am starting to taper down some of them.

I am on a normal, unrestricted diet and have no restrictions other than not lifting more than 10 pounds for the first 3 months.

It is beautiful in Jacksonville today, and I am going for a walk around the lake here at the Mayo campus!

Thanks for all the thoughts, prayers and well wishes. They have truly helped me.

I look forward to seeing you soon.

Sincerely,

Barry
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lbrod
Posted: Mon Mar 15, 2010 12:41 pm Reply with quote
*Bloodshot Hot Rod* Joined: 02 Jul 2008 Posts: 1358 Location: Beneath Pacheco Pass
Your doctors are not the only ones elated with your recovery, Barry.
Thanks for keeping us updated, Bo.
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bopanic
Posted: Sat Mar 20, 2010 9:18 am Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
a lil more...

Friends and family,

As all continues to go well, the doctors have advised me I will be able to return home to Nashville around April 2 (one month after surgery). My last regular doctor appointment here is actually on March 24, but I will remain here for blood chemistry analysis for another ten days for final adjustment of the anti-rejection medication, and then have a release visit with doctors. I get the staples out on March 22 for some final healing.

My weight continues a bit light as I lost a slight amount during surgery and my time in the hospital, but it was much better than I thought it would be, and I continue to be a little weak especially late in the day with such major surgery and the recovery process, but overall my health is on the upswing and I'm eating better.

I am looking forward to stopping the progression of amyloidosis and am quite hopeful in that regard based on current medical literature. Since this was my only option to do so, the decision to proceed was fairly easy, and I tried to plan for success as much as I could. I could not have come this far without my dear friends in Tennessee Jim and Carolyn Pape, Lisa and Steven, and Teresa Beck and my dear friends in Florida, Red and Cheri Jones, Cara and Kenny Tracy, Nolan and Natalie. May God always bless you; I will always be grateful. And, most of all, I express my unconditional gratitude to the donor and the donor's family to whom my heart goes out and to whom my goal is to carry myself in a manner to represent that gracious gift throughout the balance of my life. And, what can I say about the surgeons, there are no words to express my feelings and to those who funded the Mayo Clinic.....all through donations.

I'll let you all know when I leave the hotel in Florida and arrive back in Nashville, which, again, is expected to be around April 2.

Very sincerely,
Barry
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kg
Posted: Sat Mar 20, 2010 10:02 am Reply with quote
*Data Miner* Joined: 30 Jun 2007 Posts: 3427
What a blessing this has been! May you continue to show His love, Barry, in your gratitude, optimism, and faith and in all that you are now able to accomplish. God bless.

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trtle8819
Posted: Wed Mar 24, 2010 8:27 pm Reply with quote
Old Crow Joined: 01 Apr 2007 Posts: 332 Location: Chattanooga, Tennessee
Yaaaaaaay!
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bopanic
Posted: Fri Apr 02, 2010 1:20 pm Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
best news to date! good to hear barry!!!

Bo,

I'm packing up tomorrow (Wed, 3/31) and flying back to Nashville on April 1 (and that is NO joke!). All continues excellent. I'm pretty light, so if there is a stiff breeze when I'm around be sure to fasten me down.......but, I hope to gradually gain some weight. I have no restrictions except for no alcohol for the new liver for a while. After about six months special occasions with single weaker drink is fine until further notice. Oh, one other restriction (and this is weird) is I can't ever eat grapefruit or grapefruit juice ever again (it interferes with the one permanent immunosuppressant medication I have to take--Prograf).

All the thoughts, prayers and well wishes have sure paid off.

To think I have been gone for 3 months, not knowing when I would return, and to now be a walking miracle is hard for me to comprehend. I am certainly grateful to all the physicians who worked on my case and who chose their career and became the professionals they are. If anyone things there is not a God who controls such destiny as mine, I have quite a story to relate. If anyone had any idea of the number of circumstances and coincidences that led me here and led others to cross my path, they would know that these happenings are not by chance--it is simply not possible, and for that I am also very thankful.

I hope to see you all the next time we all get together for an OCMS performance.

Sincerely,
Barry
(aka: ruralvoice)

P.S. Steve, please pass this status on to Wllie. Thanks.
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LucyStag
Posted: Fri Apr 02, 2010 1:37 pm Reply with quote
*Cruel Lucille* Joined: 20 Mar 2008 Posts: 1022 Location: Dunno
That's amazing! So nice to read.

Plenty more "Knees" in Barry's future, yes sir.

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bopanic
Posted: Sun Apr 04, 2010 9:40 pm Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
one more for easter sunday...

Well, everyone,

I arrived home about 4pm on Thursday (hurray!!). One of the things I wanted to pass along to all my friends and family are a couple of changes you'll probably notice, that my doctors tell me I need to try and follow in the future. These are to minimize risk of illness or liver rejection, etc. (since I take an immunosuppressant medication which also reduces my resistance I am more susceptible to contagions, both bacterial and viral, than other people):

1. As far as the medication, I'll be taking one medication forever (called Prograf), and I need to take it at 12 hour intervals and the timing is reasonably important. Also, I can adjust the timing to suit my schedule in various time zones or daylight savings (I actually can adjust it 30 minutes per dose to suit me). The level has to remain reasonably constant in my blood. This medication helps to prevent rejection of the liver. Don't be afraid to remind me about, or ask me if I took, my medication; it's easy to forget when traveling. I am trying to stick to 9am/9pm, or adjust to a 12 hour interval as necessary.

2. I have no dietary restrictions which is GREAT--EXCEPT, there is one thing I can never eat or drink again: Grapefruit or Grapefruit Juice or products containing Grapefruit (such as some vegetable washing solutions). The reason for the grapefruit restriction is that it is the ONLY substance which can interfere with Prograf and can cause those levels in my blood to change and whose balance is very very important.

3. I have to minimize my risk of exposure to infections (either bacterial or virus), but not become a hygiene freak (aka; Howard Hughes....)! To do this, the Mayo Clinic has recommended avoiding "public" self serve buffets and salad bars (where many unknown people with unknown illnesses or poor hygiene may "graze" so to speak). It is best when eating out for me to have prepared foods although served cafeteria lines are fine and private buffets with friends are fine.

4. in crowded auditoriums or airplanes where there are many people, some of which could be ill sitting right next to you (and you not know it) it is recommended I wear a surgical mask. This is also appropriate if I visit someone who is ill and am close to them (just to avoid airborne viruses from coughing and sneezing). I will always have some of these with me just in case.

5. It is not wise for me to do gardening with my hands in soil (for obvious reasons), but I certainly could engage to some extent with protective gloves over surgical gloves (bacteria and mold in soil could get into an open cut, etc.). I guess that's why there are gardeners......

6. I cannot be so close to someone inoculated with a live virus that I might have fluid from a cough or sneeze enter my body. That is ONLY for a 2 week period after they are inoculated. This mostly pertains to young children who are inoculated for such things as mumps, rubella, measles, etc. or who receive a live virus nasal flu spray. Most other inoculations do not use live viruses and I don't have to worry about that (flu shots, etc.). Zostavax for adults is also a live virus vaccine (to prevent shingles).

7. I cannot take Aspirin, Advil or Motrin. I am able to take Tylenol for illness, headache, etc. Advil and Motrin interfere with the immubosuppressent levels, and I am allergic to aspirin.

The bottom line is for me to use common sense. So, if I am in the area visiting, I just wanted you to be aware.

I do wear an alert medical tag around my neck which identifies me as a liver transplant recipient; this way in an emergency or accident folks will know I'm on immunosuppressant medication and who to contact for information.

I do remain remain fairly thin at 130 pounds, but the weight is stable, and I am trying to eat as much as I can--be sure to fasten me down in a strong wind..... Smile. Prior to my surgery, the amyloidosis partly affected my sensory ability regarding taste, and the medicine I am taking further affects it, and that is part of my appetite difficulty.

I hope to talk to, and see, you soon. Thanks for all your well wishes.

Sincerely,
Barry
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ruralvoice
Posted: Mon Apr 05, 2010 11:13 am Reply with quote
Tearin' it Down Joined: 03 Jul 2006 Posts: 179 Location: Melbourne, FL
THANKS, EVERYONE!!

The saga is closed with my return home. When I see you personally at a concert, I'll be able to tell you all about it. My recovery remains excellent.

Barry

P.S. Bo or Roger, you might want to lock this at this point. Thanks, Bo, for posting and keeping everyone current. Their prayers sure paid off.
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bopanic
Posted: Mon Apr 05, 2010 11:17 am Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
LOCKED... and your welcome barry!
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bopanic
Posted: Sat Jul 26, 2014 7:11 pm Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
hey all, im gonna open this thread back up after 4 years and share a message from my good buddy barry "ruralvoice" breen.

he and i have been talking some lately and i told him id like to update some of yall who know him about his health, what he's been up to the last few years. man how time flies!

all the best barry, your crow fam is thinking about ya, and here for ya if ya need anything!

"Hey, all my OCMS friends, as I wrote to Bo a few days ago; I'm still kickin' (as in "Tear it Down")!!! I have been comfortably enjoying life in Florida as my unfortunate illness (amyloidosis) weakens me. I'm one to keep trying to do stuff and learn stuff, so I passed the Notary test and am a Florida Notary and, as well, since I like pistols I got my concealed weapons permit (feel protected now!)--also, reciprocally honored in most of South, including Tennessee. I also continue to stay up on Federal Tax law and did people's tax returns free from about 2011 to 2013 but get a little too tired now.

Unfortunately, I am getting hospice nursing care on-call (24/7) at my home. And, I have a really nice friend who lived near me in Tennessee who is coming down on October 1 to live with me and assist with my daily living requirements. Here name is Teresa and she is a Godsend.

Fortunately, having worked for the USAF as a civilian I retired with good health insurance and even Long Term Care insurance so all those expenses of care are covered. I am a lucky, lucky person to have planned ahead in the eventuality of a health issue, especially since I am single and live alone.

The Lord has steered me all through my life, whether I knew it or not--even to the point of buying the home in which I now live. I have close friends that I have known for at least 3+ decades when I worked here in Melbourne, FL in the early 80s. That's when my taste for "Bluegrass" music originated (Banjo Man's Old Time Pickin' Parlour). I have been on so many adventures through my employment and just "playing" throughout my life. I traveled all over the world and have ridden lots of horses on amazing trips, done Class V White Water all over the world (New Zealand is terrific and second to that is the Middle Fork of the Salmon River near Stanley & Salmon, Idaho). I have flown and owned several very nice airplanes during part of my life and am a Flight Instructor and Commercial Pilot, both single and multi-engine with instrument certification; I have coached Little League Baseball and took a team to the Little League World Series in Williamsport, PA in 1975; I've flown an F-16 during my USAF employment; got to work at Area-51; grew up across the street from cowboy legend Roy Rogers and remain good friends with his son, Dusty; I am a member of Theta Xi (pronounced "Zi" with long i) national college Fraternity and was National President from '91-'93; I was elected to school boards in both California and Tennessee and also served on a City Council in Tennessee (and in 2007 was TN school board member of the year, honored by the Tennessee School Boards Association).

Yeah, I've done a lot of stuff. I feel like the luckiest man in the world to have been given the opportunities to do those things. I have no regrets. And, the way I feel about the end of my life is that I will start on a new extraordinary adventure in which you will all join me one day.

I also wrote a story regarding my illness, although I haven't updated it in a while, and it is trending closer to the end than the beginning:

http://www.amyloidosissupport.org/survivors/Barry_Breen_Journey.pdf

You all give 'em hell and "Raise a Ruckus" for me whenever you see OCMS!!!!

Your good friend,
Ruralvoice
Barry E. Breen"
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LucyStag
Posted: Mon Jul 28, 2014 9:13 am Reply with quote
*Cruel Lucille* Joined: 20 Mar 2008 Posts: 1022 Location: Dunno
Aw, man.

I'm very sorry about this, and very impressed with the attitude within that note at the same time. That's all we need, I guess, to be able to look back and know all that we've done.

Man. This still sucks.

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therodge
Posted: Mon Jul 28, 2014 10:01 am Reply with quote
*Law Dog* Joined: 17 Oct 2004 Posts: 6540 Location: Nashville, Tennessee
Poor ol feller. Dang.

Sent him our love, man... or, I wonder if there is something we all could do for him?

Seriously, hate hearing this. Barry has always been the best. Such a stand up guy, through and through.

He's definitely in my prayers. Dang

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lbrod
Posted: Thu Jul 31, 2014 4:37 pm Reply with quote
*Bloodshot Hot Rod* Joined: 02 Jul 2008 Posts: 1358 Location: Beneath Pacheco Pass
Thanks for the update, Bo. Turns out Barry is more awesome than I knew.
Carry on, buddy.
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Kitty
Posted: Wed Aug 06, 2014 8:03 am Reply with quote
*Mrs. Kitty* Joined: 23 Oct 2006 Posts: 2344 Location: Durham, NC
Also sad to read this news about Barry - - glad I got to meet him. Will be thinking of him for sure.
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TN Jim
Posted: Sat Oct 11, 2014 7:43 am Reply with quote
Old Crow Joined: 23 Oct 2007 Posts: 338 Location: Greeneville-East Tn
Glad I got to meet him in Knoxville about 4-5 yrs ago. Sold him a couple extra tix I had for the night they filmed at the TN Theatre for the DVD. Super nice guy.

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bopanic
Posted: Sat Jan 03, 2015 5:26 pm Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
Got to share a bit of sad news this afternoon.

We lost a member of our crow family on December 30th.

I was notified by Barry's caregiver last night via email.

Lots of fond memories brother Barry, know your up their dancing to "Knees" as I type this... RIP.
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gwrap
Posted: Mon Jan 05, 2015 3:08 pm Reply with quote
Charlie Joined: 28 Oct 2004 Posts: 892 Location: Stankonia, GA
This is sad news. Met him at the Athens show many moons ago.

Here is his obit page:
http://eternal-valley-mp-mort.tributes.com/dignitymemorial/obituary/Barry-Erwin-BREEN-102033521

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Kitty
Posted: Tue Jan 06, 2015 8:39 am Reply with quote
*Mrs. Kitty* Joined: 23 Oct 2006 Posts: 2344 Location: Durham, NC
That is sad new for sure Bo - - but I know where he was on NYE - - looking down on all the pretty girls singing and dancing in the Ryman Laughing RIP Barry - - was good to know you.
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bopanic
Posted: Tue Jan 06, 2015 1:51 pm Reply with quote
*King of da Vuld* Joined: 04 Dec 2005 Posts: 4190 Location: Nashville, TN
he was one solid guy! the kind that would do anything for ya thats for sure.
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lbrod
Posted: Tue Jan 06, 2015 6:18 pm Reply with quote
*Bloodshot Hot Rod* Joined: 02 Jul 2008 Posts: 1358 Location: Beneath Pacheco Pass
Kitty wrote:
That is sad new for sure Bo - - but I know where he was on NYE - - looking down on all the pretty girls singing and dancing in the Ryman Laughing RIP Barry - - was good to know you.

Thanks for the smile, Kitty. RIP Barry.
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LucyStag
Posted: Thu Jan 08, 2015 4:11 pm Reply with quote
*Cruel Lucille* Joined: 20 Mar 2008 Posts: 1022 Location: Dunno
Aw, man.

Rest in peace, buddy.

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therodge
Posted: Tue Jan 20, 2015 11:35 pm Reply with quote
*Law Dog* Joined: 17 Oct 2004 Posts: 6540 Location: Nashville, Tennessee
Bo texted me this shortly after he heard this. Such a good dude we lost. A quintessential good ol boy. Still thinking of that time Willie dedicated Fall On My Knees to him from the stage of the Ryman on New Year's Eve night over WSM 650 AM.... where country music started. If that's not being imortalized, I don't know what is.

Rest In Peace, Barry Erwin Breen aka Ruralvoice. I bet there are a couple dozen fine young ladies in Athens, GA that are looking up to the sky, wondering where Barry is tonight.


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Kitty
Posted: Wed Jan 21, 2015 8:23 am Reply with quote
*Mrs. Kitty* Joined: 23 Oct 2006 Posts: 2344 Location: Durham, NC
Such a great picture - - glad you posted it again, Rodge!
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LucyStag
Posted: Sun Jan 25, 2015 10:08 pm Reply with quote
*Cruel Lucille* Joined: 20 Mar 2008 Posts: 1022 Location: Dunno
So many ladies! Ha!

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trtle8819
Posted: Mon Sep 21, 2015 10:18 pm Reply with quote
Old Crow Joined: 01 Apr 2007 Posts: 332 Location: Chattanooga, Tennessee
Sad Been away for a while, so just reading the news now. I still think of that dedication, and Barry, every time I hear "Fall On My Knees." RIP.
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