neurofibromatosis cafe

A place to talk about NF, have fun and share.

Meet Reggie Bibbs – I have neurofibromatosis

My name is Reggie Bibbs. I am on a mission to spread the word about neurofibromatosis. I figure the more people who know about my disorder, the more they will understand me, so I made a video. Actually, I’ve made a few videos. They can be seen on my website, blog, YouTube, Veoh and Vimeo as well as photos at my Flickr, Facebook and MySpace account. If you have neurofibromatosis or if you’re wanting to help spread the word, please click on the links above, leave a comment, send an email, add the urls as links to your blogs and sites or send to your friends and fellow NF people. The more we can band together, the stronger our voice will be heard. I thank you for reading this far and I truly hope to hear from you soon!

Make it a TREMENDOUS Day! – Reggie

What Is NF?
The neurofibromatoses (NF) are a set of genetic disorders which cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. NF causes tumors to grow anywhere on or in the body. A variety of terms are used to refer to NF
In 1882, NF was first delineated in the medical literature by Dr. Friedrich von Recklinghausen and was so known as Von Recklinghausen’s Disease for many years.Phakomatosis, from the Greek word “phakos” (meaning birthmark), refers to several disorders, including NF, characterized by birthmarks.

Neurocutaneous Disorder refers to any one of several disorders, of which NF is the most common, which affect the skin and the nervous system.

Types Of Neurofibromatosis

Neurofibromatosis (NF) has been classified into two distinct types: NF1 and NF2.

Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.

Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.

Genetics of the NF1 and NF2 (NF)

NF1 and NF2 are called autosomal dominant genetic disorders. Half of all cases are inherited from a parent who has NF1 or NF2; half of all cases are not inherited but the result of a new or spontaneous mutation (change) in the sperm or egg cell. Each child of a parent with NF1 or NF2 has a 50% chance of inheriting the gene and developing NF1 or NF2. The type of NF inherited by the child is always the same as that of the affected parent (i.e. if the parent has NF1, each child is at 50% risk for NF1. If the parent has NF2, each child has a 50% chance to inherit NF2). However, the severity and the kind of manifestations may differ from person to person within a family. When a parent has NF1 or NF2, there is a 50% chance with each pregnancy for the child to receive the NF1 or NF2 gene, and a 50% chance for the child to receive two unaffected genes and to be free of NF1 or NF2. The child with NF1 or NF2, as a result of a new mutation, does have the 50-50 chance of passing the NF1 or NF2 gene on to his or her children. Unaffected parents who have a child born with NF1 or NF2 because of a spontaneous mutation do not have a 50-50 risk in future pregnancies. Their chance for another child with NF1 is about the same as that of any couple in the general population, that is, one chance in 7,000. One additional birth in every 7,000 results in a child who has inherited NF1 from a parent with the disorder. Thus, a total of 2 children in 7,000 or 1 in 3,500 are born with NF1.

Click here to read more.
Facts & StatisticsNF has been classified into three distinct types; NF1, NF2 and Schwannomatosis. They are caused by different genes, located on different chromosomes.

NF1 is not a rare disorder, it is the most common neurological disorder caused by a single gene.

NF1 is the more common form of NF, occurring in 1:3,000 births throughout the world.

NF2 is a rarer type, occurring in 1:25,000 people worldwide.

While today there is no consensus, studies indicate that Schwannomatosis occurs in 1:40,000 people, similar to NF2.

The Neurofibromatoses are genetically-determined disorders which affect more than 100,000 Americans; this makes NF more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s Disease and Tay Sachs combined.

All forms of NF are autosomal dominant genetic disorders which can be inherited from a parent who has NF or may be the result of a new or “spontaneous mutation” (change) in the sperm or egg cell.

Each child of an affected parent has a 50% chance of inheriting the gene and developing NF. The type of NF inherited by the child is always the same as that of the affected parent, although the severity of the manifestations may differ from person to person within a family.

NF is worldwide in distribution and affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.

Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain and spinal tumors; loss of limbs; malignancies; and learning disabilities.

NF1 also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF1 population than in the general population.

The distinguishing feature of NF2 is tumors that grow on the eighth cranial nerve in both ears, commonly causing deafness and severe balance problems.

NF2 brings on increased risk of other types of nervous system tumors as well.

NF2 can also cause severe vision problems, including cataracts, retinal abnormalities and orbital tumors.

Accordingly, NF research may benefit an additional 100 million Americans (i.e. 65 million with cancer and 35 million with learning disabilities).

NF is not the “Elephant Man’s Disease,” although it was at one time believed to be. Scientists now believe that John Merrick, the so-called “Elephant Man,” had Proteus Syndrome, an entirely different disorder.

NF research began eighteen years ago by the Children’s Tumor Foundation, has been enormously productive ever since.

February 7, 2008 - Posted by | A MESSAGE FROM REGGIE, About Me, Awareness, neurofibromatosis, nf, NF1, Texas NF Foundation, Video | , , , , , , ,

242 Comments »

  1. Hi, my name is Patricia Stokley I have NF too. I am a regular on Reggie’s blog I have a facebook,and a my space account too. I too would like to spread awarness on neurofibromatosis.

    Comment by Patricia | February 12, 2008 | Reply

  2. Good Morning All,

    Patricia thank you for being a part of NF Awareness. Two great
    things out of this. Awareness of NF and we are now friends. What more can one ask for.

    Comment by Reggie Bibbs | February 13, 2008 | Reply

  3. I don’t have neurofibromatosis but I want to help spread awareness of this disorder so people will want to help. What makes me motivated to do this is that I continually ask myself, “What would I do if my daughter had NF?” That’s all it takes.

    Comment by adgiant | February 13, 2008 | Reply

  4. I dont have NF, but my oldest son Elijah does. Having a child with NF is tough, and it has made me a stronger person. Everything I do is to help find more resources and information to help him, and this blog has helped me tremendously, and also I’ve made some great friends out of it as well!

    Comment by Emily | February 13, 2008 | Reply

  5. Hi everybody I have NF also and I try to help with tha awareness too

    Comment by Brian | February 13, 2008 | Reply

  6. Wow, very strong Lou! I have seen how you have protected me in so many cases. Thank you Emily you are great. This is a wonderful thing going on here. Friends here that are not affected with NF and still want to be a part of our blog is also a great thing.

    Comment by Reggie Bibbs | February 13, 2008 | Reply

  7. It takes a village.

    Comment by adgiant | February 13, 2008 | Reply

  8. I believe that

    Comment by Reggie Bibbs | February 13, 2008 | Reply

  9. Emily, as a mother when something happens to our child it hurts us much more. So in a sense YOU do have NF. I also passed NF onto my youngest daughter. We are praying that the child she is carring does not have NF, but will face what ever happens. We are going to love that baby no matter what. We are also concern with Down Sydown on the baby’s father side. But what ever happens will not matter to me, that is my grandson and I am going to worship the ground that baby walks on.

    Comment by Patricia | February 13, 2008 | Reply

  10. I know that is true because of my mother. I know my mother still hurts for me. That is one of the reasons I don’t share every story with her. She always worries about me and I don’t want her too.

    Comment by Reggie Bibbs | February 13, 2008 | Reply

  11. You are a good son.

    Comment by Patricia | February 13, 2008 | Reply

  12. Well I try to be, some time I can be a little worrisome. lol.

    Comment by Reggie Bibbs | February 13, 2008 | Reply

  13. A little pain in the ass is more like it.

    Comment by adgiant | February 13, 2008 | Reply

  14. One more crack like that and you are going to find yourself in time out young man.

    Comment by Reggie Bibbs | February 13, 2008 | Reply

  15. There is alot of things I don’t tell my mother either. I don’t like to make her worry either.

    Comment by Patricia | February 13, 2008 | Reply

  16. yall dont worry just tell your mom that you are strong and tough thats what i tell myself every day and I try really hard not to let things bother me and just tell myself I am strong and tough and just keep on going and Fight it I will keep whipping NF and not let it whip me and give up not me not never

    Comment by Brian | February 13, 2008 | Reply

  17. I also have NF1. I been a long time member with the Texas NF Foundation when started with Bob Hopkins (1987) and have known Reggie from the NF Camp in the 90s, and with the other functions we have done, NF/NFL Alumni, Crawfest, and several other events. I often do the photos for these events. This is a great site that you started Reggie. I am up here in the Dallas area. I hope to see many here at the next NF Family Camp in Burton (just a hour – 90 minutes from Houston).

    Comment by JohnP | February 13, 2008 | Reply

  18. Hello I dont have NF I never heard of NF till I worked with Reggie at Goodwill

    Comment by Shelley | February 13, 2008 | Reply

  19. Thanks Shelley.

    Comment by Reggie Bibbs | February 13, 2008 | Reply

  20. Hey John you too are a big part of what we are doing here. You do a lot for NF. I thank you.

    Comment by Reggie Bibbs | February 13, 2008 | Reply

  21. on comment 13 Lou you wanted to know why you needed a babysitter

    Comment by Shelley | February 13, 2008 | Reply

  22. Well, Lou started out being nice, did’nt think it would last too long.😛

    Comment by Patricia | February 13, 2008 | Reply

  23. It’s not natural for Lou to be nice. Well all know that. So don’t let up on him.😉

    Comment by Reggie Bibbs | February 13, 2008 | Reply

  24. I was trying to give him the benefit of the doudt.

    Comment by Patricia | February 13, 2008 | Reply

  25. hey whats up ya’ll

    Comment by Brian | February 13, 2008 | Reply

  26. well good night yall I am headed to bed I am tired

    Comment by Brian | February 13, 2008 | Reply

  27. I speak the truth and for that I get damned. There is no justice on this blog.

    Comment by adgiant | February 13, 2008 | Reply

  28. Good Morning to all. Lou you don’t know the meaning of truth.

    Comment by Reggie Bibbs | February 14, 2008 | Reply

  29. Good morning everyone! Happy Valentines Day!

    Comment by Emily | February 14, 2008 | Reply

  30. good monering to all my new friends

    Comment by Rich | February 14, 2008 | Reply

  31. Hey, Rich, Happy Valentine’s Day!!! Welcome to the blog! It’s always great to meet new friends and have new things to talk about. (I’ll give you the low-down on Emily later when she’s not around but I think she used to dance at a “gentleman’s” club.)

    Comment by adgiant | February 14, 2008 | Reply

  32. Good Morning, and Happy Valentines to all hope everyone has a tremdious day. I found out who my new boss is going to be, I hope he lets me stay where I am, and not make any changes. I have kinda been my own boss for awhile and that is the way I like it!!!! I don’t need any changes.😀

    Comment by Patricia | February 14, 2008 | Reply

  33. Lou (adgiant) likes to dress in woman’s cloths and play poker Emily has pic. LOL

    Comment by Patricia | February 14, 2008 | Reply

  34. Lou, if I had danced at a gentleman’s club you certainly wouldnt have known about it because you would not have been allowed in to such a high class facility!
    Now, you, on the other hand, we all know that you frequent the local transgender bars and I have the evidence to prove it: http://www.ananova.com/images/web/78030.jpg

    Comment by Emily | February 14, 2008 | Reply

  35. Well, Emily, the best thing I can say about your past performances is that at least you were fast. http://www.bellbrush.com/images/CarefreeSpeedStripper-CHE10.jpg

    Comment by adgiant | February 14, 2008 | Reply

  36. Lou, how would you possibly know anything at anyone’s performances? I guess you dont remember passing out cold you old drunk.. http://sidesplitters.catastrophe.net/arch/2004/drunk-saranwrap.jpg

    Comment by Emily | February 14, 2008 | Reply

  37. Happy Valentines everybody

    Comment by Brian | February 14, 2008 | Reply

  38. It’s getting hot in here. You can’t win Lou. Forget about it.

    Comment by Reggie Bibbs | February 14, 2008 | Reply

  39. I AM NOT OLD!!!

    Comment by adgiant | February 14, 2008 | Reply

  40. lol Uh oh looks like I hit a nerve! *makes mental note*

    Comment by Emily | February 14, 2008 | Reply

  41. Now we know how to get to “OLD” Lou :p lol

    Comment by Patricia | February 14, 2008 | Reply

  42. He won’t care, he will think you are trying to hit on him or saying something nice about him .

    Comment by Reggie Bibbs | February 14, 2008 | Reply

  43. HI Everybody

    Comment by Shelley | February 14, 2008 | Reply

  44. Yall should see my flowers

    Comment by Shelley | February 14, 2008 | Reply

  45. I wish I had some flowers!

    Comment by Emily | February 14, 2008 | Reply

  46. I wished I had some too!!!!!

    Comment by Patricia | February 14, 2008 | Reply

  47. Who gave you flowers Shelley? 😛

    Comment by Patricia | February 14, 2008 | Reply

  48. Guess who sent the flowers this has been going
    on since Vday 01 Have no idea who sent to me

    Comment by Shelley | February 14, 2008 | Reply

  49. Patricia and Emily I do know who didnt send them lol

    Comment by Shelley | February 14, 2008 | Reply

  50. A Secret admirerer how romamtic. Can you take a pic and and send it to Reggie and maybe he can post the pic.

    Comment by Patricia | February 14, 2008 | Reply

  51. sound like a great idea

    Comment by Reggie Bibbs | February 14, 2008 | Reply

  52. Emily, don’t be sad, I’ll send you some flowers! How do you like stinkweed?

    Comment by adgiant | February 14, 2008 | Reply

  53. I took the pics dont have a ditial cam will get Reggie to post

    Comment by Shelley | February 14, 2008 | Reply

  54. well Shelley that is nice you got flowers I am happy for you but it wasnt me lol Happy Valentines Shelley and Patricia

    Comment by Brian | February 14, 2008 | Reply

  55. TY Brian

    Comment by Shelley | February 14, 2008 | Reply

  56. What is stinkweed Lou?

    Comment by Shelley | February 14, 2008 | Reply

  57. Patricia I can send Reggie what I got last year

    Comment by Shelley | February 14, 2008 | Reply

  58. Stinkweed is an informal name for any noxious plant. (Not a particularly pleasant type of plant.)

    Comment by adgiant | February 14, 2008 | Reply

  59. Noxious, adjective
    harmful, poisonous or very unpleasant

    Comment by adgiant | February 14, 2008 | Reply

  60. Noxious, adjective
    harmful, poisonous or very unpleasant (See: Emily S.)

    Comment by adgiant | February 14, 2008 | Reply

  61. Shelley’s flowers!!!

    Shelley's Flowers

    They look terrific, Shelley! I don’t know what you’re doing to get flowers like these but keep it up!!! Somebody appreciates it!!!

    Comment by adgiant | February 14, 2008 | Reply

  62. They are beautiful, my husband got me a candle and a balloon, the candle smells good, called wine and rosses. He said it would last a lot longer than flowers, I was not expecting anything this year with everything going on.

    Comment by Patricia | February 14, 2008 | Reply

  63. Shelley those are so pretty!!

    Lou – You ARE a stinkweed. An OLD stinkweed.

    Comment by Emily | February 14, 2008 | Reply

  64. Hey guys I’ve got someone coming to my house tomorrow afternoon to talk to us about our “problem”. They are actually producing a new tv show, so you may see me on tv, lol.

    Comment by Emily | February 14, 2008 | Reply

  65. let us know when to watch!!!! I hope they can fix your problem!!!!

    Comment by Patricia | February 14, 2008 | Reply

  66. Hey do you guys realize the “Name My Baby” thing ends tomorrow night? lol

    Comment by Emily | February 14, 2008 | Reply

  67. hey Shelley purty flowers I will take the blame on sending them to you they are mighty purty

    Comment by Brian | February 14, 2008 | Reply

  68. Comment 64 Emily that is good news. Keep us up dated. You have to be careful not to make what ever it is mad.

    Comment by Reggie Bibbs | February 14, 2008 | Reply

  69. hey Reggie whats up thats TRUE Reggie you dont want to make what ever it is mad if you do then you really will have problems on your hands

    Comment by Brian | February 14, 2008 | Reply

  70. Yea Brian you really have to be careful. I guess us single guy’s are just here on the computer. Even Lou is not here. Now that is really sad if Lou? is out, and two hunks like Brian and myself are at home. Well I guess that is the best thing because if we went out then Lou wouldn’t have a chance at all. He is probably striking out now.

    Comment by Reggie Bibbs | February 14, 2008 | Reply

  71. Yea, but can ya imagine Lou, trying to be all “NICE” and romantic with someone how long can Lou go with out saying something mean??!!!!!😀

    Comment by Patricia | February 14, 2008 | Reply

  72. hey Reggie I will be honest though I wish I could see ghosts or see people like Emilys son I think it would be neat and try and talk to them I would freak out but then again I would talk to them and try to see why they are here to begin with and just try to figure out things you know what I mean

    Comment by Brian | February 14, 2008 | Reply

  73. I know what you mean. It freaks me out to think about it. I don’t think I want to see that. I will be screaming like a little sissy. What better line can I follow this. Yea it would make me puick to see Lou trying to Rap. Meaning trying to impress a girl.

    Comment by Reggie Bibbs | February 14, 2008 | Reply

  74. hey Reggie I sent you a email

    Comment by Brian | February 14, 2008 | Reply

  75. Reggie it doesnt take much to impress a girl

    Comment by Shelley | February 14, 2008 | Reply

  76. Brian I answered your email.

    Comment by Reggie Bibbs | February 14, 2008 | Reply

  77. Shelley I’m learning that fast. lol. I found that out when I saw Lou talking.

    Comment by Reggie Bibbs | February 14, 2008 | Reply

  78. Why is everyone always getting on my case? I’m probably the nicest out of all of you and this is how you treat me?

    Comment by adgiant | February 14, 2008 | Reply

  79. Comment 78 Well Yea!

    Comment by Reggie Bibbs | February 14, 2008 | Reply

  80. well Lou, how do you talk to the ladies??😛

    Comment by Patricia | February 14, 2008 | Reply

  81. He says please please please please please. Just a hi Lou will be fine.

    Comment by Reggie Bibbs | February 14, 2008 | Reply

  82. We all love you Lou thats why we harrass you

    Comment by Shelley | February 14, 2008 | Reply

  83. I tell my family I dont know what I did to get these flowers all I do is sit in my yard

    Comment by Shelley | February 14, 2008 | Reply

  84. You know something Reggie a conversion over coffee is a good start to get to somebody

    Comment by Shelley | February 14, 2008 | Reply

  85. You really don’t know who they are from? I’d be calling the florist immediately. Maybe you have a stalker, Shelley. Reggie, where were you today when all this was going on?!!

    Comment by adgiant | February 14, 2008 | Reply

  86. I told you earlier Shelley I will take the blame for sending you the flowers but it really wasnt me I dont even know where you live LOL

    Comment by Brian | February 14, 2008 | Reply

  87. Lou you are crazy. I don’t know what your are talking about. I was at a friends house at the time the order was placed for the red roses was suppose to be delivered this afternoon. He Maybe Brian know something about this.

    Comment by Reggie Bibbs | February 14, 2008 | Reply

  88. Good morning, Where is everybody?

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  89. Ugh, I didnt sleep at all last night. I woke up at 2:30am with my heart pounding and covered in goose bumps and I just felt like something was in the house. I stayed awake til 7:30am, then I fell back asleep for an hour. I am so tired. I cant wait for this lady to come talk to us today and get some people out here to check out our house, I cant keep doing this.
    Elijah told me that the little boy he sees has a black nose and a black mouth.. I told my dad that and he says that sounds like someone who froze to death.. I got a really weird feeling when he told me that. This sucks. I want to move..

    Comment by Emily | February 15, 2008 | Reply

  90. Do you live on the base? Have you tried checking the tax records?

    Comment by Patricia | February 15, 2008 | Reply

  91. We live in Navy housing, but its no longer ran by the military, it was bought out by a housing company and privatized in the past few years. I went to the housing office and asked them if they had any information about our house, such as anyone dying here or anything at all, and they said they didnt have anything. I went to research it myself at the library but they said that they didnt have anything either. The lady that is coming today said that they will do research for us on the house, and they also will bring 2 psychics and a paranormal investigator when they come back out. This is all just so crazy.

    Comment by Emily | February 15, 2008 | Reply

  92. Emily this is not good for you the baby and Elijah. I would look for a hotel room. But sometime it’s more to it then just leaving. It may be something that just have to be fixed. From what I hearing that is what ever it is not not wanting to hurt anyone. Who knows they might be protecting you. I hope you get answers today. It only happens at night?

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  93. I was told you can use a regular digital camera and just take pictures around the house. night or day. do it of things that are not there. And just see what you see on the picture.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  94. I heard the same thing too, that when the pic was being taken nothing out of the ordinary was seen until after it was develope or downloaded.

    Comment by Patricia | February 15, 2008 | Reply

  95. have you tried to google your address?

    Comment by Patricia | February 15, 2008 | Reply

  96. It only happens at night, and its always at the same time every night. We thought about taking pictures but both my husband and I are too scared to do it. Believe me, if we could afford a hotel I’d get one, lol. Whenever they come to do the investigation at night I will definitely stay in a hotel though.

    Comment by Emily | February 15, 2008 | Reply

  97. that is cool

    Comment by Patricia | February 15, 2008 | Reply

  98. I believe. It syncs with what I have experienced.

    Comment by adgiant | February 15, 2008 | Reply

  99. Pictures like that creep me out.. thats exactly why I dont want to take pictures in my house, lol. I dont want someone showing up on the picture who wasnt there when I took it! I would never step foot in this house again. I told my husband that if they do find something when they come out and investigate that I will not stay another night here and thats final.

    Comment by Emily | February 15, 2008 | Reply

  100. I think it would be very cool to be able to experience what you are experiencing, perhaps as a one-time visitor, not somebody who has to live with it. You are experiencing something that people would give anything to experience! Think of it as a positive – this spirit is seeking you out perhaps for some reason or feels comfortable to reveal itself.

    Comment by adgiant | February 15, 2008 | Reply

  101. Emily i wish I could see what your son is seeing I think it would be cool as I would try to talk to what I see and try to figure out whats going on you know talk to it and see if anything weird happens but thats just me I think it would be cool

    Comment by Brian | February 15, 2008 | Reply

  102. See, my husband and I talked about that. That maybe whatever it is that is here is trying to communicate for help or maybe doesnt even know its not alive anymore. It hasnt shown any sign of wanting to harm anyone, but it still isnt very comfortable living with something like this. I know tons of people would love it, so they can come live in my house and I’ll take theirs, lol. At first we thought maybe it was trying to contact my husband, because he was the one who was always waking up at night at the same time with chills and goosebumps right before the noises would start. But last night it was me that woke up that way. I dont like it at all.

    Comment by Emily | February 15, 2008 | Reply

  103. A few years back in Eurka Springs Arkansas we went on a tour of the Cresent Hotel, it is suppose to be haunted. I wanted to stay so bad but we went with another couple and Vanessa and thier son were too young so we did not stay. But on our 10 year anervesay my husband suprised and took me. But I did not see any ghoust I was kinda disappointed, he was not! He lated said what he should of done was woke up in the middle of the night and made some noised for me!!!! LOL

    Comment by Patricia | February 15, 2008 | Reply

  104. I never told anyone this only family. Mom and I went to Sea World. The Hotel Room we stayed in had to be haunted. We went to eat down stairs and we could see our room from where we was having lunch. We saw shadows in the room and no one was there. We radio would always pop out of the plug everyday. Stuff would happen when I was sleeping. I never had that to happen to me like that. It never happen sence we left that place. It is light to what you are going through. It was scary for me and I know you are freaked out about what you have to put up with.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  105. Reggie, there are strange, many times unseen people who inhabit places like what you have described. They’re called…maids!

    Comment by adgiant | February 15, 2008 | Reply

  106. NOT! That wasn’t the case. All you have to do is ask mom that she thought about the place we stayed. It was a very nice place but stuff happened that I didn’t like. Laugh if you want. It was just a little strange.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  107. Nothing like has ever happen to me. And my husband paid big bucks and still nothing has ever happen. I would probally s*&& if it did! LOL

    Comment by Patricia | February 15, 2008 | Reply

  108. The place in Eurka Springs at one time was ran by this quack doc that was tring to find a cure for cancer. He had experemitd on ppl before they shut him down. Years later he died of cancer. http://www.americasmosthauntedhotel.com/
    Reggie if you go to my daily strength page at the bottom I am standing in from of that hotel

    Comment by Patricia | February 15, 2008 | Reply

  109. Patricia I just saw the picture. No way would I go near that place. Know the history of it. Did it give you the creeps? You know the same feeling when you think about Lou.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  110. Patricia, Go over to Emily’s house.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  111. lol Yea come on over, youre welcome to spend the night in that room!

    Comment by Emily | February 15, 2008 | Reply

  112. Yea, any takers? I will pass on that one. lol

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  113. If you lived closer I would be there. But they would probally not come out for me, I don’t think they come out for the eager.

    Comment by Patricia | February 15, 2008 | Reply

  114. But just of it, the very place where you are standing someone could of died years ago, it could be an old Indian buriel ground, ect you just don’t know, I worked at the help desk for a very short time which is station across the street from the Walls, where they exicute the nights that I work to 12 by myself and had to leave by MYSELF were SPOOKEY I always felt like someone were watching me, I got in my car as fast as I could and SPED away. It was really eerie over there.

    Comment by Patricia | February 15, 2008 | Reply

  115. hay i hade class today and it was good . i think it help one to read if they have a prolumb . you just have to wont to do it well help you .
    Rich

    Comment by Rich | February 15, 2008 | Reply

  116. Hi Rich. Desire and passion is everything. If you want to do something bad enough, you’ll find the means to do it. Good for you in trying to be your best!

    Comment by adgiant | February 15, 2008 | Reply

  117. Patricia – This entire area used to be inhabited soley by indians, it was the Pequot tribe, and they were all slaughtered basically, there are indian burial grounds marked all around us, but youre right you never know what once stood where your own house is.

    Comment by Emily | February 15, 2008 | Reply

  118. We had our house built but, we don’t know what happen on the land before our house was built on happen. I have been told that there is an old Indian buriel ground in our neighborhood, and less face we were not the nicest ppl to the Indians.

    Comment by Patricia | February 15, 2008 | Reply

  119. Well maybe if its an Indian he will be nice to us.. my husband is 1/8 Indian, and my kids are 1/16, lol.

    Comment by Emily | February 15, 2008 | Reply

  120. comment 120 true that

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  121. Hey Rich the more you write the better you will get. Keep up the good work with going to class and writing on the blog. We are happy you are here.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  122. The lady just left, we went over everything that has been going on and she said she would get back to us in a week or so. But if this falls through, I did get another phone call today from an affiliate with the Ghost Hunters people, so I will call him next if I have to.

    Comment by Emily | February 15, 2008 | Reply

  123. Gee, I hope you are able to stay alive until they get back to you. All kinds of bad things could happen when you’re dealing with ghosts, spirits and things that go bump in the night!!! Emily, do you need somebody to stay with you and guard against evil? I can send Reggie.

    Comment by adgiant | February 15, 2008 | Reply

  124. Ghoust hunters wow, that is exciting!!!! not really but maybe you can get some help now. but it does seem like they are as bad as dr. “next week”, “check back in a month”… it really gets frustrating, I would want things done now!!!

    Comment by Patricia | February 15, 2008 | Reply

  125. I think Ghost hunters would be the perfect thing. I don’t know what else they do other then tell you what you already expect.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  126. Lou you are so crazy.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  127. Hey Everybody whats going on

    Comment by Shelley | February 15, 2008 | Reply

  128. Hey there just give Lou a big bowl of olives he would shut up for a while

    Comment by Shelley | February 15, 2008 | Reply

  129. Right Reggie ?

    Comment by Shelley | February 15, 2008 | Reply

  130. My husband ate my girl scout cookies, the carmal delites, he is in so much trouble!!!!!!!!!!!!

    Comment by Patricia | February 15, 2008 | Reply

  131. AW poor Patricia

    Comment by Shelley | February 15, 2008 | Reply

  132. I know I thought about those cookies all day long, I fought the urge to go downstairs and buy some more from the lady who had them, I was good. I just knew I had a box waiting for me at home. But no, my husband had to go and eat them!!!!!

    Comment by Patricia | February 15, 2008 | Reply

  133. man Patricia if I was there I would have ate all of them too those are my favorite but cant have them no more cuz they have wheat

    Comment by Brian | February 15, 2008 | Reply

  134. that bites, my friend trish at work is alergic to choclate, sad thing is she has not always been alergic to choclate so she knows what she is missing.

    Comment by Patricia | February 15, 2008 | Reply

  135. same here I used to be able to eat wheat but not no more if I eat wheat now I get really sick to my stomach but I know what I am missing to I want a piece of bread so bad but cant have it the sad thing is my mom eats bread in front of me knowing I cant have it and want it bad

    Comment by Brian | February 15, 2008 | Reply

  136. That is sad, I don’t bring choclate to work, when I bake cookies or a cake I make sure there is no choclate, cause I know she can’t have it, she always says don’t do that, that just because she can’t have does not mean we should have do with out. but I don’t bring choclate I think that would be rude, knowing she can’t have it. I bring peanutbutter cookies or cocontut cake, or cinnoman cake, just something that does not have choclate

    Comment by Patricia | February 15, 2008 | Reply

  137. HI there

    Comment by Shelley | February 15, 2008 | Reply

  138. Chocolate? Did I hear somebody say chocolate?!!

    Comment by adgiant | February 15, 2008 | Reply

  139. Yes, do you like choclate??!!!😀

    Comment by Patricia | February 15, 2008 | Reply

  140. I would like to rent one of those Chocolate fountains. And get a few pineapples and strawberries and just enjoy the taste of
    those things. Is that a good idea?

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  141. Hershey bars with almonds are the best!

    Comment by adgiant | February 15, 2008 | Reply

  142. I like Mr. Goodbars

    Comment by Patricia | February 15, 2008 | Reply

  143. I like sweets too

    Comment by Shelley | February 15, 2008 | Reply

  144. My favorite girl scout cookies is carmal delites but my husband ate them all.

    Comment by Patricia | February 15, 2008 | Reply

  145. Patricia, just let it go…repeat after me, “Just let it go…”

    Comment by adgiant | February 15, 2008 | Reply

  146. Shelley, what do you like?

    Comment by adgiant | February 15, 2008 | Reply

  147. my Favorite to Patricia at least I can still have my Chocalate cant go wrong with Chocalate

    Comment by Brian | February 15, 2008 | Reply

  148. Everybody should have a little chocolate, right Reggie?

    Comment by adgiant | February 15, 2008 | Reply

  149. Choclate and nuts, they are the best!!!!!

    Comment by Patricia | February 15, 2008 | Reply

  150. Dont know Lou

    Comment by Shelley | February 15, 2008 | Reply

  151. sweet and salty

    Comment by adgiant | February 15, 2008 | Reply

  152. I love sweets

    Comment by Shelley | February 15, 2008 | Reply

  153. What does Elena like Lou?

    Comment by Shelley | February 15, 2008 | Reply

  154. Good homemade fudge with pecans is always good!

    Comment by Patricia | February 15, 2008 | Reply

  155. My favorites:
    1. Hershey Bar with almonds
    2. M&M’s with peanuts
    3. Krackel
    4. Mr. Goodbar
    5. Reese’s Peanut Butter cups

    Comment by adgiant | February 15, 2008 | Reply

  156. Elena is not that big of a chocolate eater. She likes Twizzlers when we go to the movies.

    Comment by adgiant | February 15, 2008 | Reply

  157. those are all good, I could eat all of those.

    Comment by Patricia | February 15, 2008 | Reply

  158. Never was a big fan of anything with raisins like Raisinettes or Chunky.

    Comment by adgiant | February 15, 2008 | Reply

  159. I like Hot Tamales when I go to the movies, but I am bad (cheap) I buy my at walmart and smuggle them in my big purse.

    Comment by Patricia | February 15, 2008 | Reply

  160. Hmmmmmm

    Comment by Shelley | February 15, 2008 | Reply

  161. Yeah, I saw your wanted photo in the lobby at Tinseltown.

    Comment by adgiant | February 15, 2008 | Reply

  162. I don’t like raison either, I don’t use, I won’t bake with them!!!!

    Comment by Patricia | February 15, 2008 | Reply

  163. Where in the hell did that good-for-nothing Reggie go off to?

    Comment by adgiant | February 15, 2008 | Reply

  164. Dont blame you Patricia

    Comment by Shelley | February 15, 2008 | Reply

  165. I don’t go to Tinseltown anymore, I go to the Grand

    Comment by Patricia | February 15, 2008 | Reply

  166. I have hated raisins ever since my neighbor had a pet rabbit…

    Comment by adgiant | February 15, 2008 | Reply

  167. Getting sweets for everybody Lou

    Comment by Shelley | February 15, 2008 | Reply

  168. I’m surprised they let you in with your background.

    Comment by adgiant | February 15, 2008 | Reply

  169. #167 that is gross

    Comment by Patricia | February 15, 2008 | Reply

  170. Thank you.

    Comment by adgiant | February 15, 2008 | Reply

  171. What wanted pic Lou

    Comment by Shelley | February 15, 2008 | Reply

  172. I have frinds in a certein places.

    Comment by Patricia | February 15, 2008 | Reply

  173. Shelley, Patricia has wanted posters with her photo in every theater in Texas!!!! They say, “Wanted for smuggling candy into movie theaters instead of paying exhorbitant prices at the concession stand.” She’s a bad seed, Shelley, stay away from her!

    Comment by adgiant | February 15, 2008 | Reply

  174. Here watching everything

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  175. I can be nice w/o harrassing Lou

    Comment by Shelley | February 15, 2008 | Reply

  176. YOU’RE A STALKER!!!

    Comment by adgiant | February 15, 2008 | Reply

  177. Don’t make me put this left foot on you. I don’t have to kick very hard with the size of it.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  178. LOL

    Comment by Shelley | February 15, 2008 | Reply

  179. big brother is watching

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  180. Not moi Lou

    Comment by Shelley | February 15, 2008 | Reply

  181. Oh, scare me why don’t you!!!

    Comment by adgiant | February 15, 2008 | Reply

  182. So now every knows my deep dark secret I snuggle candy into movie theaters I have been doing that for years, when it was just me the the kids I was a single mom for a while I would take them to the dollar movie, I would snuggle candy in I am guilty and I just cannot quit the habbit I am hook I am a candy snuglar I snuggle candy into movie theaters.

    Comment by Patricia | February 15, 2008 | Reply

  183. #181 Not you, Shelley, I meant Reggie, the loser!!!!

    Comment by adgiant | February 15, 2008 | Reply

  184. Emily can you stay here on the blog most of the night. Then when you get really sleepy maybe you will fall to sleep fast. You and your husband can blog.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  185. Lou have you met anybody else from Goodwill ?

    Comment by Shelley | February 15, 2008 | Reply

  186. So what you’re saying Reggie is that you want to spend the night with Emily?!! I don’t think Emily is your type, Reggie. She’s good-looking and breathing!!!

    Comment by adgiant | February 15, 2008 | Reply

  187. 183 don’t feel like the long ranger. I have done that too. Who going to know. You just have to make sure you freeze it before you put it in your pocket. I can’t do like Lou. Hide in my a purse.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  188. #186
    No, Shelley, Reggie was quite enough.

    Comment by adgiant | February 15, 2008 | Reply

  189. Well at least all of mine walk up right.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  190. Reggie, why don’t you tell everyone about your dark secret. You know, the thing you like to do with pink chiffon, small, flightless animals and airplane glue…

    Comment by adgiant | February 15, 2008 | Reply

  191. Lou you would be in for a treat

    Comment by Shelley | February 15, 2008 | Reply

  192. #190 Very good, Reggie! Be careful she doesn’t scrape her knuckles across the floor when she walks.

    Comment by adgiant | February 15, 2008 | Reply

  193. Well I don’t know all about that other stuff, but every one does the something with the airplane glue.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  194. Did Lou acutally pay Emily a compliment he must have a fever, Reggie you got to save that for her, so she can have it for a later post, I know she will need it later for when he is picking on her which will be soon.

    Comment by Patricia | February 15, 2008 | Reply

  195. Like yours drags it butt on the ground when it walks and Howells at the moon

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  196. Reggie, did you know sniffing glue causes brain damage? Ok, I’ll say it slowly and loudly just for you, “D I D Y 0 U K N O W T H A T A I R P L A N E G L U E C A U S E S B R A I N D A M A G E ?

    Comment by adgiant | February 15, 2008 | Reply

  197. Patricia no he didn’t. Look again. It was a bad one. I’m sure I’m reading it right. or maybe not. Its raining really hard here now. Who gonna untie Lou and let him in the garage.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  198. #195 You must be mistaken, Patricia, I meant good-looking in a bad, evil way.

    Comment by adgiant | February 15, 2008 | Reply

  199. there’s the Lou we know

    Comment by Patricia | February 15, 2008 | Reply

  200. I wish Emily could stay at a 5 star hotel and Lou have to stay at her house for the weekend. I would pay for that.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  201. Thank you. Thank you very much. And Reggie, you can go to hell.

    Comment by adgiant | February 15, 2008 | Reply

  202. Yes I know and understand your problem now. I just thought you was dropped and kicked when you was born. Now I know what happen. It was all your fault. Now stop with the glue.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  203. I went to Janis Joplin’s birthday party

    Comment by Shelley | February 15, 2008 | Reply

  204. Well, I’d love to spend more time chatting but I have to go walk over red hot coals in my bare feet while poking daggers in my eyeballs. Also, need to do some work. Will log on tomorrow unless of course I freeze my tongue to the ice cube tray in the freezer.

    Comment by adgiant | February 15, 2008 | Reply

  205. comment 202 After all this now you want to invite me to your home. no thank you.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  206. do it do it. Do for all of us Lou. We will love you for it.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  207. Lou did pay Emily a compliment he said she was good looking!!!!!😀

    Comment by Patricia | February 15, 2008 | Reply

  208. Yea that was a good compliment. I wonder whatt made him speak the truth tonight.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  209. It was the alcohol talking. Good night!

    Comment by adgiant | February 15, 2008 | Reply

  210. he must of been tired and slip up. he sure did get off soon after he was nice.

    Comment by Patricia | February 15, 2008 | Reply

  211. I could spend more time talking to Lou, but I just though of something better. I think I will go slam my finger in the car door.

    Comment by Reggie Bibbs | February 15, 2008 | Reply

  212. Hey Reggie,
    I made it!!!!For everyone who has never experienced a 17 hour non-stop flight……Don’t do it!!! I thought it would be worth it not to stop in Europe on my way back, but it’s not. At some point in there you need a break. With about 4 hours to go in the flight I was in absolute misery. I’ll give you a buzz tommorrow.
    Jerry T

    Comment by Jerry T | February 16, 2008 | Reply

  213. Hey Jerry,

    I was thinking about if you made it. I’m glad you did. I hope to hear from you after you are rested. Maybe we can visit this weekend.

    Comment by Reggie Bibbs | February 16, 2008 | Reply

  214. Wait a minute, I’m gone all night and I miss talk of chocolate (my favorite food everrrrrrrrrr) and Lou paid me a compliment?! Where is this, I cant find it.. what did he say?! lol

    Comment by Emily | February 16, 2008 | Reply

  215. Something about you are good looking. Then he took a stab at me and you. Don’t worry I let him have it. Just check the blog before this one.

    Comment by Reggie Bibbs | February 16, 2008 | Reply

  216. lol Lou must have been a little tipsy last night.

    Comment by Emily | February 16, 2008 | Reply

  217. Yea the good thing is that he keep us laughing.

    Comment by Reggie Bibbs | February 16, 2008 | Reply

  218. Emily go to comment 187 he said you were good looking and breathing, so he did pay you a compliment, I caught it right away. Then he tried to take it back but he did pay you a compliment.

    Comment by Patricia | February 16, 2008 | Reply

  219. lol Yea, he must have definitely been drinking!
    So this is crazy.. I am 28 days from my due date today! And I havnt done ANYTHING to get ready for the baby at all, I havnt even packed my hospital bag yet.

    Comment by Emily | February 16, 2008 | Reply

  220. Girl, you better get busy sometimes they decide to come early, Vanessa decided to come about 10 days early and a very very very fast labor I got to the hospital just in the nick of time. LOL since her daddy really feel like taking me at that time.

    Comment by Patricia | February 16, 2008 | Reply

  221. It is because the baby is 10bl or is it that you know you have plenty of time? I bet your husband will be glad to be with you for two good reasons. To see your wonderful baby born into the world, and to get out of the house.

    Comment by Reggie Bibbs | February 16, 2008 | Reply

  222. LOL you are funny Reggie

    Comment by Patricia | February 16, 2008 | Reply

  223. hi trup i hope you are staying dry and have a nice night

    Comment by Rich | February 16, 2008 | Reply

  224. Her Rich good to see you here. You didn’t get out in that rain did you? I hope you didn’t have to. I’m nice and dry. I stayed in all day.

    Comment by Reggie Bibbs | February 16, 2008 | Reply

  225. stay nice and dry.but i have to work tomrrom but it is going to rain to

    Comment by Rich | February 16, 2008 | Reply

  226. I think the longest flight I been on from Dallas to Germany was 12-13 hrs non stop. I often fly from Dallas to Honolulu which is 8 hrs 30 minutes. I must be getting older, those flight are getting harder to deal with. If they showing a boring movie, you can not just walk out.

    Comment by John P | February 17, 2008 | Reply

  227. I love the fly. I think the longest flight I had was just over two hours. Wasn’t long enough for me.

    Comment by Reggie Bibbs | February 17, 2008 | Reply

  228. to all the trup . i thank it is going to be a nice day . i hope you all have a good day to

    Comment by Rich | February 18, 2008 | Reply

  229. Hi Rich you are right. It’s really nice out this morning.

    Comment by Reggie Bibbs | February 18, 2008 | Reply

  230. Lou you may not be normal but I from Goodwill too and I am normal ,just Ask Reggie?

    Comment by Tim | February 18, 2008 | Reply

  231. Good One Tim. lol

    Comment by Reggie Bibbs | February 19, 2008 | Reply

  232. Hi everyone!!! I hope I am doing this right, my name is Wendy and I too have NF. I live in Canada. I’ve ‘met’ Lou on my facebook as well as joined the Friends of Neurofibromatosis facebook. I hope I am posting in the correct area……I have a lot to learn as I have just recently been diagnosed after years and years of misdiagnoses.

    Comment by Wendy | February 19, 2008 | Reply

  233. Hi Wendy and welcome to my blog. Yes you are posting in the right place. I hope you visit often and feel free to talk about NF or anything you want to express. I never been to Canada, I hear its really a beautiful place.

    Comment by Reggie Bibbs | February 19, 2008 | Reply

  234. Thanks for the welcome Reggie, yes Canada is really beautiful, you should definitly visit!! Where are you?

    Comment by Wendy | February 19, 2008 | Reply

  235. Cattle Country, Houston Texas

    Comment by Reggie Bibbs | February 19, 2008 | Reply

  236. YES I HAVE TO AGREE THAT CANADA IS PRETTY . I HAVE SEEN TO AND THE INSIDEPASS ON A BOAT AND IT WAS NICE.

    Comment by Rich | February 20, 2008 | Reply

  237. so where is everybody? i am here and you are not.

    Comment by Rich | February 20, 2008 | Reply

  238. Hey Rich click on the next the next blog. Hats off to comcast. I will be making a new blog to. I will let you know when.

    Comment by Reggie Bibbs | February 20, 2008 | Reply

  239. Hello, Reggie, et al-

    I’m thrilled to see the interest and support that’s being generated. My son was diagnosed with NF in 1981, when he was five months old. I saw five pediatricians, all of whom gave the same information: “Your son has NF. He may or may not develop tumors that may or may not be cancerous, and you may or may not pass it onto other children. Don’t worry about it and don’t be an over-protective mother.”

    The only literature available in 1981 (pre-internet, MRI technology and genetic testing) was a single paragraph in the Pediatric Journal of Medicine. It wasn’t until I happened to watch a televised production of “Elephant Man” and information was flashed at the end of the program, that I learned of the NF clinic at Children’s Hospital in Philadelphia, where we live.

    My son, now 27, has nerve and structural damage in his leg from two ultimately unsuccessful de-bulking procedures, and tumor growth into the bone on this leg that leaves us with uncertainty, but he’s not affected in other areas. I’m grateful that technology now allows us to build a community and to give parents of newly-diagnosed children better information than, “Don’t worry about it.”

    Comment by Linda Hershman, Licensed Marriage and Family Therapist | May 16, 2008 | Reply

  240. Hi Linda and welcome to the blog. I hope you will visit often.

    Comment by Reggie Bibbs | May 16, 2008 | Reply

  241. Thank you Reggie for wanting to spread word, and thank you and bless all of you who have posted (whether you have NF or not)…
    I am 17 and I’ve had NF2 for two years now…
    my father had it and died when he was 38 (I was 9). It was hard watching him as I grew up, and its even harder now not to compare myself with him. I will not follow the same path his disease took him. I have faith.
    My mom is very strong but I can tell it hurts her inside to know that her daughter has this disease, but she is amazing and faithful as well.
    God bless each and every one of you!

    Comment by Allyson | November 9, 2008 | Reply


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