Registration Results Page
Name: Ila Nofziger Title: Organization: RAF StreetAddress: 19929 Oak Leaf Circle Address2: City: Cornelius State: NC ZipCode: 28031 Country: USA Phone: FAX: Email: INOFZIGER@aol.com URL: http:// Participating_Movement: Yes Helping_Movement : Yes Date: 12/16/98 Time: 9:43:10 AM Comments: Caregiver for daughter-advocate for BI
Name: Joan Landon Title: Organization: StreetAddress: 10023 Atlantic Road Address2: P.O. Box 73 City: Atlantic State: VA ZipCode: 23303 Country: USA Phone: FAX: Email: joanl@shore.intercom.net URL: http:// Participating_Movement: Yes Helping_Movement : Yes Date: 12/16/98 Time: 6:58:45 PM Comments:: Daughter with BI 8/18/94
Name: Dee Pickering Title: Organization: StreetAddress: 405 Dietrich, Ave Address2: City: Tower City State: Pa ZipCode: 17980 Country: Phone: FAX: Email: deep@epix.net URL: Participating_Movement: Yes Helping_Movement : Yes Date: 12/17/98 Time: 11:22:30 AM Comments: Our son suffered with the effects of brain injury for almost eight years.
Name: Miles W. Affleck
Title:
Organization:
StreetAddress: 812 Tipperary Drive
Address2:
City: Vacaville
State: CA
ZipCode: 95688
Country: USA
Phone:
FAX:
Email: TBIRY@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 12/27/98
Time: 12:21:00 PM
My son Ryan suffered a TBI on March 15, 1997
Name: Carol Elnicki
Title:
Organization:
StreetAddress: 21 Tift Street
Address2:
City: Jewett City
State: CT
ZipCode: 06351
Country: USA
Phone: 860-376-3183
FAX:
Email: ajelnicki@snet.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 12/29/98
Time: 8:55:43 PM
My husband and I were involved in a motorcycle
accident on July 18, 1998. My husband suffered
a left temporal lobe BI and swelling on the right
side of his brain. I learned early on to stand up
to the people providing his care. Otherwise you
may be treated like a piece of furniture.
Anyway - I made sure my husband was surrounded by
positive people and lots of stimulation. He got
through the hospital and rehab phase of recovery
much better than the doctors ever believed poss-
ible. He will be finishing PT in a month or so.
He returned to work November 30.
We are still learning about the long term effects
of BI on a marriage. He has changed in many
subtle ways, and although he is a 'high function-
ing' BI, we have encountered many stressors.
relat
Name: Cindy Harrison
Title: Caregiver
Organization:
StreetAddress: 5629 Galaxy Drive
Address2:
City: Crestview
State: Fl
ZipCode: 32539
Country: USA
Phone: 850-682-5366
FAX:
Email: Cindy@cfi.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 12/30/98
Time: 11:06:38 AM
I am the Mother and Caregiver of Brandon Calhoun. This jorney has been over 13 years for us. We have faced ever imiginable issue.
Name: Sieglinde Jacobs (Cindy)
Title: Doug's mom
Organization:
StreetAddress: P.O. Box 390672
Address2:
City: Kailua-Kona
State: Hawaii
ZipCode: 96739
Country: U.S.
Phone: (808) 322-5022
FAX:
Email: dougsmom1@webtv.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/2/99
Time: 8:40:10 PM
My son Douglas had an underwater blackout while diving (free diving - ocean) Later complications have left him so-called "vegetative" due to anoxic brain damage following hospitalization for saltwater left in his lungs which caused infection. (since March 10, 1996) note-- he walked & talked going into the hospital & i was told he would be out in 5 days. This site is a definite God-send, who has been good to us throughout this ordeal. <><
Name: Suzann Rowe
Title:
Organization:
StreetAddress: 1826 West Canton Street
Address2:
City: Long Beach
State: California
ZipCode: 98010
Country: USA
Phone: 562-424-5886
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/8/99
Time: 8:51:50 PM
Name: Patricia M. Rodger
Title: Independent Living Skills Trainer,TBI
Organization:
StreetAddress: 15 W.Hollow Rd.
Address2:
City: Naples
State: NY
ZipCode: 14512
Country: Ontario
Phone: 716-234-8710
FAX:
Email: Pro4131236@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/15/99
Time: 12:06:18 PM
Special teacher in support of bi
Name: Kris Clark
Title:
Organization:
StreetAddress: P.O.Box 894
Address2:
City: Selah
State: Washngton
ZipCode: 98942-0894
Country:
Phone: 509-697-9285
FAX: same
Email: DIFFIEFAN7@AOL.COM
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/24/99
Time: 6:43:28 PM
Name: Deanna Parker
Title:
Organization:
StreetAddress: 4038 Bluebird Drive
Address2:
City: Waldorf
State: Maryland
ZipCode: 20603
Country:
Phone: 301-705-5181
FAX:
Email: DParker213@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/25/99
Time: 12:43:28 PM
For some reason, I cannot type this. the lines cmbinge.
Name: Jeanette Motsch
Title: Life Coach
Organization: N.E.N.Supportive Services
StreetAddress: 9719 Loudoun Ave.
Address2:
City: Manassas
State: VA
ZipCode: 20109
Country:
Phone: 703 475-7650
FAX:
Email: jetmotsch@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/25/99
Time: 7:12:45 PM
Life Coach for TBI surv-Form won't allow me 2 type
Name: Brenda Wright
Title: mother
Organization: caregiver
StreetAddress: 1923 S. Ave B
Address2:
City: Portales
State: NM
ZipCode: 88130
Country: USA
Phone: 505-356-9179
FAX: 505-356-5682
Email: brenda75@pdrpip.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/31/99
Time: 7:29:58 PM
on March 4th 1998 my 8 year old daughter was ejected from a high speed rollover. she sustained severe head injury. had a partial left frontal lobe removal, contracted memingites, had a shunt and shunt revision. she is doing very well all things considered. she is non-verbal and has right side neglect. her mental capacity is that of a 1-5 year old. i am her sole caregiver and have to spend so much time being an advocate and therapist for her she no longer has a mother. we could not get by without Medicaid but i should not have to fight for everything she gets from them either. the school system is funded by the government with laws and it should not be my job to make them fulfill their legal obligation. the community runs from us but it is their TBI also. i am trying to educate myself and the community to help my daughter have quality life and not have any new members in the support group i have started.
Name: Linda Bucher
Title:
Organization:
StreetAddress: 7611 158th ST CT E, sp 111
Address2:
City: Puyallup
State: WA
ZipCode: 98375
Country: US
Phone: 253-531-2390
FAX:
Email: BUCHERL@MSN.COM
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/1/99
Time: 4:01:48 AM
My husband has a brain tumor.
Name: Robert Demichelis II
Title:
Organization:
StreetAddress: 105 No. Alfred Street
Address2:
City: Alexandria
State: VA.
ZipCode: 22314-3010
Country: USA
Phone: 703-236-6000 ext. 119
FAX: 703-236-6001
Email: RDemichelis@biausa.org
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/3/99
Time: 8:24:22 AM
I awoke to find myself in a hospital bed, sometime in the latter days of Feb., 1980. Subsequently I was told, by my mother and hospital staff, of a terrible single car crash that involved my new car and in which I was driving.
This story is not remarkable. The same thing happens everyday, but in my estimation, what was remarkable is the many barriers, (and too numerous and on too many levels to list here) that I have been challenged to face, on a daily basis, during my recovery period, or life post injury.
Name: Jo Vaughn
Title:
Organization:
StreetAddress: 939 Creekside Circle
Address2:
City: Naperville
State: Illinois
ZipCode: 60563
Country: USA
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/4/99
Time: 10:24:15 PM
I am the primary caregiver for my daughter, Joy, 28, who sustained an anoxic brain injury on April 1, 1995. She was on a whitewater rafting trip at the time. She probably was in the water for somewhere around 4 - 10 minutes. She is fortunate that physically she is in pretty good shape. However, cognitively she has many problems, most noticably her memory probably.
Name: Georgiann Wiersch
Title:
Organization:
StreetAddress: 3361 Jeanne Dr.
Address2:
City: Parma
State: OH
ZipCode: 44134
Country: USA
Phone: 440-845-4554
FAX: 216-749-9374
Email: gwiersch@cuyahoga.lib.oh.us
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/17/99
Time: 9:27:44 AM
My husband Bill had a blood disorder, TTP, that caused multiple brain infarcts in July 1988. He is currently high-functioning, with considerable short-term memory loss, obsessive behavior, confusion, and tremors.
He also has had cancer, psych problems, endocrine problems, pulmonary and cardiac dysfunction.
I work full-time and he is able to be alone at home during the day.
Money is always an issue, but we continue to "live for the moment".
Name: Carrie Puett
Title:
Organization:
StreetAddress: 101 Perry
Address2:
City: Edgerton
State: Missouri
ZipCode: 64444
Country: Platte
Phone:
FAX:
Email: CPuett1@AOL.COM
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/21/99
Time: 4:42:34 PM
I am the mother and caregiver of two children who
have TBI from a MVA which occured on March 18,1997
.
Name: Jim Salisbury
Title: OT Student, TBI Rehab Assistant
Organization: Eastern Mich. Univ., Rainbow Rehab
StreetAddress: 6655 Jackson #436
Address2:
City: Ann Arbor
State: MI
ZipCode: 48103
Country:
Phone: (734) 662-4728
FAX:
Email: yakko@umich.edu
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/24/99
Time: 11:44:27 PM
I work in a group home for persons with TBI. I have been very inspired by this site, your organization and the TBI_caregivers listserv! You are truly amazing -- with all the time, energy and stress it takes to care for a person with TBI, you still find the time and energy to help so many people! I'm very interested in the DC activities. -Jim
Name: Elaine Burns
Title:
Organization:
StreetAddress: 164 Codfish Falls Rd
Address2:
City: Storrs
State: CT.
ZipCode: 06268
Country: U.S.
Phone:
FAX:
Email: gb@neca.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/2/99
Time: 1:07:20 PM
I am the mother/caregiver for my son, Ryan, who suffered a severe tbi on7/1/97. The struggel to get him appropriate care and continued therapies has been a full-time job. There is much that needs to be done to address these and many other issues.
Name: Meg (Mary-Margaret) Griffin
Title: RN, CRRN
Organization: Health Educator
StreetAddress: 14 Armstrong Circle
Address2:
City: Newtown
State: PA
ZipCode: 18940
Country: USA
Phone: 215-579-1725
FAX: 215-504-5807
Email: griffin@p3.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/2/99
Time: 1:17:30 PM
I have been working in the field of brain injury f
for approximately 10 years. In addition to working
directly with those who have been injured I also
speak for prevention. I do talks from preschool
up to high school on helmet use, alcohol use and
automobile safety. I also speak to parent groups
concerning alcohol and drug use by injured
survivors.
Name: siobhan szakaly
Title:
Organization:
StreetAddress: 20057 crosswell st.
Address2:
City: south bend
State: IN
ZipCode: 46637
Country: usa
Phone:
FAX:
Email: vaughnie@webtv.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/2/99
Time: 10:21:59 PM
My husband fell 18-19 feet from scaffolding 5 yrs ago. After 9 mo rehab he went back to work and suffered seizure (apparently) and fell 5-6 feet both times landing on concrete. His brain and ear are damaged all over but he functions despite some cognitive problems. It has been a long road for us and the workmens comp. ins. co. with the 2nd accident has been terrible to us.
Name: Dominick Sansotta
Title:
Organization:
StreetAddress: 10 Westbrook Ct.
Address2:
City: Cortlandt Manor
State: ny
ZipCode: 10567
Country: Westchester
Phone: 914-769-2220
FAX: 914-747-6399
Email: doms@pcrealm.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/15/99
Time: 7:56:36 PM
my brother has suffered an anoxic brain injury due to an infection 1 week after an operation for colitis. It has been a nightmare dealing with hospital services (Mt. Sinai in NY City) & Insurance companies. My brother has been in a "vegetative" state since 8/15/98. My family & myself would be interested in any information you would consider helpful and I'm interested in learning more about your movement & how we can help.
Name: adrienne boyd
Title:
Organization:
StreetAddress: po 2362
Address2:
City: cumming,
State: ga
ZipCode: 30028
Country: usa
Phone:
FAX:
Email: rboyd123@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/19/99
Time: 11:44:03 AM
father injured from bicucle crash-had on helmet, he has been too sick for some places and too well for others. placement or finding his 'categorie' has also been a terrible struggle. he was on private insurance-without any problems-until march 98 when he turned 65. now we are going through more struggles than ever before! medicare!!! he has been in constant danger of getting ousted since he has gone on medicare. the rules have changed and they are awful. caring for dad has become like a job for me in order to keep an eye on how he is treated and make sure that the care is there and that he doesnt slip through the cracks.
my specialty is writing letters-i will be glad to do this when needed.
Name: Marshall L. Simon
Title: Chairperson
Organization: Grand Rapids BI Survivors Council
StreetAddress: 1512 Three Mile Rd.-NE
Address2:
City: Grand Rapids,
State: Michigan
ZipCode: 49505
Country: USA
Phone: (616) 363-6353
FAX: (616) 363-1006
Email: ms1512@juno.com
URL:
Participating_Movement: Yes
Helping_Movement : No
Date: 3/30/99
Time: 1:14:31 PM
I was injured in a car accident, 12 years ago, 71 days of coma time. 2 1/2 years in Rehab. Have since been able to do many things started the Survivors Council here 11 years ago, Local and State Board member, State excutive Board member. Have started a Respite Care unit here for families who are in need of it. I was able to get my Master of Divinity, was ordained in 1998 as a chaplain, started a bible study, called the TBI's for Christ, gathering twice a month. Right now am waiting for the publisher to send my book back to me. It is finished after 7 yrs. It is called "The Day I Yelled at God." Will be available to purchase from the Daily Prayer reading I send out. Can be purchased by contacting; pops102@juno.com. If you don't want the book, and just the daily prayer reading that's OK. Send your e-mail address to the same address. God Bless; chaplain Marshall (POPS)Simon.
Name: Julia Sladek
Title: care-giver
Organization:
StreetAddress: 3704 85th Street
Address2:
City: Lubbock
State: TX
ZipCode: 79423
Country: USA
Phone: 806-793-3463
FAX:
Email: jsladek@arn.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/17/99
Time: 12:47:05 AM
My husband sustained a very sever TBI on Dec. 4, 1998. He fell from our roof while hanging Christmas lights. He is still hospitalized in a rehab unit at an acute care facility. He is currently at a Rancho IV but beginning to show signs of moving to a V. We are working on his placement at a long term (3-6 months)neuro-rehab facility in Galveston, Texas. It is a very intense rehab facility for TBI's. We are very hopeful that my husband will continue to improve and regain mobility and increased awareness with the help of this facility. I too knew nothing about TBI and have spent hundreds of hours learning all I can and trying to find the best possible care to obtain the most complete recovery possible.
Name: Vicki Evans
Title:
Organization:
StreetAddress: 1193 Wesley Rd.
Address2:
City: Finksburg
State: Maryland
ZipCode: 21048
Country:
Phone:
FAX:
Email: vickiev@ccpl.carr.org
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/19/99
Time: 8:48:04 AM
My 8 year old daughter was BI on 5/5/96. I have been her main caregiver and advocate
Name: Patricia (Trisha) Spivey
Title: Caregiver
Organization:
StreetAddress: 209 South 1st Street
Address2:
City: Geneva
State: Alabama
ZipCode: 36340
Country: USA
Phone: 334-684-3868
FAX: None
Email: pspivey931@AOL.Com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/28/99
Time: 5:15:23 PM
I am on the Caregiver's list and have story on Bio page...both public and private. I will be glad to send info to officials in Alabama.
Name: Suzann Rowe
Title:
Organization:
StreetAddress: 1826 West Canton Street
Address2:
City: Long Beach
State: California
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/28/99
Time: 7:35:20 PM
Name: Janet Groll
Title:
Organization:
StreetAddress: 5732 N. New Hampshire Ave
Address2:
City: Chicago
State: IL
ZipCode: 60631
Country:
Phone:
FAX:
Email: Janetotrl@aol.com
URL: http://
Participating_Movement: No
Helping_Movement : No
Date: 4/28/99
Time: 8:12:46 PM
I would be willing to write/send a letter. My daughter Julie was injured in a car accident June 20, 1994. Although a junior at Northwestern University in Evanston, she is plagued by daily non-stop headaches and short term memory problems. She had a almost photographic memory before the accident, she now needs to use every memory trick out there to make it in school. She is surviving, thankfully...but compared to many, she is lucky. We have good health insurance (but has not yet found relief for the headaches). Others are not as fortunate. Janet Groll
Name: Shelia Watts
Title: Caregiver
Organization: TBI
StreetAddress: 1340 Burton Ave. Apt. 2 B
Address2:
City: High Point
State: North Carolina
ZipCode: 27262
Country: USA
Phone: 336 889-6822
FAX:
Email: Sheliahp
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/29/99
Time: 12:58:30 PM
My brother Steven has been with me for 10 years here at home. The struggle and fight to get what he needs has given me a lot of stress. He is burned from the brain to the waist, and also paralyzed from the chest down. TBI comes from the direct burns to the brain. I pray for Washington to see these accident victims need all kinds of support concerning home health, medicaid rights, and most of all give these people something productive to look forward to. I pray for the society to wake up and get better educated concerning what is TBI? The truth is anyone, can be put in a bad situation at any given moment. We need a lot more support concerning the caregiver. Love for the family is priceless. The long term picture makes us the victim. Without God in my life, I would have given up a long time ago. Please hear our plea, in Jesus Name. Yours Truly, Shelia
Name: Verna Richards
Title: Art Specialist/Teacher
Organization: Clark County School District
StreetAddress: 1885 Eagle Flight Lane
Address2:
City: Henderson
State: Nevada
ZipCode: 89012
Country:
Phone: (702)269-6793
FAX:
Email: vbricha@ibm.net
URL: http://
Participating_Movement: No
Helping_Movement : Yes
Date: 5/15/99
Time: 11:35:06 AM
December 26, 1998 was the turning point in my family's life. My husband, Marc Vernick was coming home and got hit by an inattentive driver that pulled out from a cross street. She hit him on the rear panel of his car which caused him to swerve and go into the opposing lane. He was hit in a T-bone fashion by a van. Marc was transferred by flight, breathing at a rate of 2 bpm, and coming in on the glasgow scale of 3. It has been over 4 months later and he is now in pvs. What hurts the most is being put in this situation, and having to deal with all the ramifications of someone else's fault. The young driver had no insurance and has no known assets. Consequently, she is not paying a dime nor has she said a word of apology. My daughter, 4 years old, has lost a father and a provider. I have lost a husband and companion, and I am expected to deal with everything. It's not fair. So that is why I want to help in your crusade. I don't know what else to do. I am trapped her, having to make sure that the employees at the nursing home take care of him. I am constantly fighting, and I would like to know that my efforts are something...
Name: Maureen Fayhee
Title: Sister of Colleen
Organization:
StreetAddress:
Address2:
City: Green Bay
State: Wisconsin
ZipCode: 54302
Country: USA
Phone:
FAX:
Email: herlacheauto@earthlink.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 5/19/99
Time: 12:36:57 PM
I don't have a lot of time...who does right? But if if all I can do is learn more than for right now.. that's what I'll do. I'm not the main caregiver. but here's some of our story. July 2, 1998 a young woman apparently fell asleep and crashed in to a car driven by my 46 year old sister. Both my mother and father were killed. My sister, Colleen doesn't speak, does not consistently respond to direction, has a trach and a g tube. My brother-in-law took Colleen home this past February. Every two hours he must turn her. Ron performs all actions needed for Colleen's comfort and survival. I live three hours from them but try to spend a night everyweek to help. I'm the Pollyanna in the family...but I want to be realistic .. It's a tough balance... I just believe that the best way we can help in promoting any recovery is to be optimistic and hopeful, Is there anyone that has known of a person being this long like this with some form of recovery?
Name: cschexna@mail.mcneese.edu
Title: PPII
Organization: Frazar Memorial Library
StreetAddress: McNeese State University
Address2: PO Box 91445
City: Lake Charles LA
State: Louisiana
ZipCode: 70609
Country: USA
Phone: 318-475-5723
FAX:
Email: cschexna@mail.mcneese.edu
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 6/2/99
Time: 5:00:32 PM
Name: Jacqueline McAdams
Title:
Organization:
StreetAddress: 100 Fairway Drive
Address2:
City: Pawling
State: NY
ZipCode: 12564
Country: US
Phone: 914-855-0673
FAX:
Email: Jam81596@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 6/3/99
Time: 9:56:19 PM
Name: Mary Casteel
Title: Sister to my TBI brother
Organization: The Ellingsworth Press (where I work)
StreetAddress: 177 Charter Oak Drive (home address)
Address2:
City: Watertown
State: CT
ZipCode: 06795
Country: USA
Phone: 860-274-1469 or 274-7151
FAX: 860-274-9755
Email: ellpress@aol.com
URL: www.tbiinfo.com
Participating_Movement: Yes
Helping_Movement : Yes
Date: 6/9/99
Time: 9:17:45 AM
My brother Nick was assaulted in our local YMCA M My brother Nick was assaulted in our local YMCA by a man with a baseball bat 22 years ago. The whole story is documented in my Mom's recently published book: ACKNOWLEDGED A MAN. Nick is now blind and multi-handicapped and the most inspiring person I know. With all the times I have been told he will die and all the times I have been told he will not progress and he is not a candidate for rehab, I have lost alot of faith in the medical field. I have been doing all I can for all these years to find him help and to make people who don't want to hear about brain injury hear about brain injury. Brain Injury being called the "Silent Epidemic" is so true. The statistics are shocking but they don't seem to impress news people enough to get them to get the word out. I would love to know why. Now I am working to promote my mom's book and am still amazed at how many people don't want to hear it.
Name: Amy Gropper
Title:
Organization:
StreetAddress: 3017 Bonnie Brae Crescent
Address2:
City: Flossmoor
State: IL
ZipCode: 60422
Country:
Phone:
FAX:
Email: bzmom22@aol.com
URL: http://
Participating_Movement: No
Helping_Movement : No
Date: 6/15/99
Time: 11:31:12 PM
Although I have no direct experience with BI, my husband is a neurosurgeon and I would be interested in helping if I can.
Name: Tina Coleman
Title:
Organization:
StreetAddress: 1107 Allston Road
Address2:
City: Havertown
State: PA
ZipCode: 19083
Country: USA
Phone: 610-789-9099
FAX: 610-789-5285
Email: beachnut33@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 6/16/99
Time: 1:46:40 PM
My mother suffered a ruptured cerebral aneurysm on March 6, 1998. We were encouraged when her surgeon was thrilled with the success of the clipping. It wasn't until much later that we realized having her survive the surgery was the success - that success meant very little in terms of the quality of life she would enjoy from that day forward.
Her doctors, little by little, began downgrading her prognosis. Now, over a year later, she is severely cognitively and physically impaired, incontinent, uncommunicative, memory impaired, confused, and unable to express her needs. She is in her home, with her family, and with a wonderful aide we feel very lucky to have found, but we are faced with making major decisions about a future that we cannot predict, and for which we can find little help. There are few provisions in our health care system for chronically disabled people, and she is no longer receiving professional therapy. We do exercises with her and her aide is wonderful doing range of motion and walking with her, but she has made no improvement for months, either cognitively or physically.
She requires 24 hour care; we currently have the aide 8 hours/7 days, so my sister, brother, and I are all sharing the responsibility. I have three children, ages 14,12 and 10, and a job, and both my siblings work full time shift work.
I would like to be involved in getting the word out that the current system does not do nearly enough to address the needs of brain injured patients and their caregivers, at least to the extent that my responsibilities allow. Please let me know about plans for Washington. Thanks and God Bless.
Tina Coleman
Name: Jackie Tripp
Title: Sister to Michele(BI 8/18/94
Organization:
StreetAddress:
Address2:
City: Wattsville
State: Va.
ZipCode: 23336
Country: USA
Phone:
FAX:
Email: tripps@shore.intercom.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 7/18/99
Time: 10:39:56 PM
Mom,Ila and Miles, What a wonderful job you all
are doing! I am very proud to be a part of it!!
Name: Anne Noonan
Title:
Organization:
StreetAddress: 330 W Elm ave
Address2:
City: Burbank
State: CA
ZipCode: 91506
Country: USA
Phone: 818 953 9474
FAX: 818 848 0250
Email: budika@webtv.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 7/18/99
Time: 11:55:03 PM
Hi! I am a TBI survivor,the result of a massive stroke12-96.God bless you for your efforts Annie
Name: Mary Moore
Title:
Organization:
StreetAddress: 10 Harlan Lane
Address2:
City: Heber Springs
State: Ar.
ZipCode: 72543
Country: usa
Phone:
FAX:
Email: mefm@arkansas.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 8/7/99
Time: 12:14:30 PM
In June of 1980 my son John was involved in a motorcycle accident. He was a passenger. The driver a co-worker had been out drinking after work on a friday. John was 27 at the time. He had sustained a clossed head injury, brain stem damage, and spinal cord,T7, damage. It was not severed. His eeg was flat but for one tiny spike now and then. They gave me no hope whatso ever. He laid in deep coma for three month and semi for another three. At that point I was told to put him in a nursing home and I said no. They found a rehab that would take him which was not easy at that time. After 3 mo. there again I was told put him in a nursing home. Again I said no. I brought him home. He had a feeding tube and an open stoma where the trach had been. Had great difficulty swallowing and could not tell me who I was. To him I was a nice lady. To say the least my heart was breaking. I was sent home with no support system put in place and on my own. Family and friends were too busy with their own lives. Gave a lot of lip service. John has come a long way and we now live in Ark. because the winters and cost of living are less. Well thats not very short is it. Mary; mom of John tbi '80
Name: linda blackburn
Title:
Organization:
StreetAddress: 19384 cascade dr.
Address2:
City: trabuco canyon
State: ca
ZipCode: 92679
Country: usa
Phone: 949 713 1401
FAX: 9497131400
Email: lblack1179@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 8/11/99
Time: 12:31:01 PM
my nephew suffered a tbi in 12/21/91 aafter 6yrs hewe met a fantastic doctor who is helping matt i would like to be a contact person to help new tbi with ideas and info please feel free to list me as a support person for others is now starting to wi dont know if you are getting this message as it appears to be all jumbled up on th screen please contact me if this is possible!!!!!!!!thank you and God blessalk and talk again
Name: Gail Sheve
Title: Member/Mother of Suvivor Son
Organization: Orlando Brain Injury Support Group
StreetAddress: 12271 Florida Woods Ln.
Address2:
City: Orlando
State: FL
ZipCode: 32824
Country: USA
Phone: 407/859-1960
FAX:
Email: PDSGSS@AOL.COM
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 8/27/99
Time: 7:46:24 PM
I am the mother and caregiver to our 22 yr. old son, Erick. Jan 20, 96, he was in an hit and run auto accident suffering a traumatic brain injury, having surgery to remove a portion of his skull and in a coma 15 days, in a rehab hospital until Apr 5, 96, came home and had some therapy and had a miracle recovery with residual complusivity and talking too much to anyone, meeting no stanger. 2-1/2 yrs later, Jul 2, 98, he had a seizure resulting in another coma for days and more brain damage, could not talk, complete memory loss and confusion unable to feed self, dress, use bath room. It has been a continuous struggle. Ins. does not want to pay for therapy they said to put him in a home and let medicare pay. He was placed and lost before 24 hrs. was up and found wandering on the turnpike. We brought him home Sept 2, 98 and have worked since. Waiting for help from FL Brain & Spinal Cord Injury Program... He now feeds himself, showers, shampoos, dresses, a and does small chores with a lot of cuing. He still has to wear Depends as he has accidents and he cannot remember past a minute what is next and does not remember all of the past. He does not know that he is 22, he usually says he is 14 or 16.
At times he has not remembered us, his Mom and Dad
Name: Tina Rushing
Title:
Organization:
StreetAddress: 204 Spencer Dr.
Address2:
City: Pineville
State: Louisiana
ZipCode: 71360
Country: USA
Phone:
FAX:
Email: TRush44832@aol.com
URL: http:// Aaronsnannies.com
Participating_Movement: Yes
Helping_Movement : Yes
Date: 12/13/99
Time: 12:19:11 PM
Name: Carol Seelaus
Title:
Organization:
StreetAddress: 450 Forest Ave.
Address2: E-305
City: Norristown,
State: PA
ZipCode: 19401
Country: USA
Phone: 610-275-1928
FAX:
Email: caroljeansee@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/16/00
Time: 11:13:06 PM
My BouyfriendNick fell from a 40 foot kladder two years ago and I have been his caregiver since then.
Name: Loralie N. Schaus
Title: Parent, kFormer Executive Director/President
Organization: Head Injury Association of Nevada
StreetAddress: 433 South Cimarron Road
Address2:
City: Las Vegas
State: Nevada
ZipCode: 89145
Country: U.S.A.
Phone: 702-254-0524
FAX:
Email: seanchai43@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/14/00
Time: 1:09:31 PM
In 1988 my 9 year old son fell beteen 80 and 100 feet in a State Park. Suffering multiple orthop- pedic injuries, a lascerated spleen and liver and a severe closedhead injury, Nathaniel spent four months in PICU. He spent almost 3 years in out- of-state rehab. Nathaniel is now almost 22. He is wheelchair dependant, incontenient, has a g-tube and cannot speak. He is the third child in a family of five kids. He is loving and courages. Although totally dependant he lends us support through affection and keen interest in all our lives. My health is failing and we little support in Nevada, but we take one day at a time. We are a community minded family and recognize that sometimes you have to fight for
justice.
Name: Lynae Bombaro
Title:
Organization:
StreetAddress: 6 Morris Drive
Address2:
City: Sicklerville
State: NJ
ZipCode: 08081
Country: USA
Phone: 856-728-1335
FAX:
Email: LBombaro@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/14/00
Time: 10:20:59 PM
My son, Ed, was hit by a car while riding his bike on 7/22/98. Closed head injury to begin with, surgery to remove right temporal lobe to reduce swelling of brain - so now also open head injury - coma for two weeks, doctors did not hold out much hope as to how he would be when he woke up. Still goes for cognitive therapy at this point in time. Is considered high functioning. Is now 14 years old and back in school - 9th grade. Doing well in school but with alot of extra help. Is still continuing to improve but gets frustrated with short term memory loss. Our lives are not the same and never will be. The lawsuit was frustrating and an experience I don't wish on anybody.
Name: Carrie Morris
Title:
Organization: Brain Injury Association of Texas
StreetAddress: 1023 Pheasant Ridge
Address2:
City: Grapevine
State: TX
ZipCode: 76051
Country: U.S.A.
Phone: 817/488-7640
FAX:
Email: donandcarrie@earthlink.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/19/00
Time: 11:12:18 AM
My son, Don, had mva in 1995, diagnosis severe global I care for him with and without medical intervention until 1999. He has made a miraculous recovery and has returned to live with his ex-wife and daughter. I am currently working with the Brain Injury Association of Texas in an effort to help others facing the same obstacles I faced. I am willing to do anything I can to assist in a national movement to draw attention to the peculiar needs of the brain injured population, and to express, strongly, their right (and the right of caregivers) to receive the same attention and assistance other groups have. It is our right!TBI.
Name: Kay Abel
Title:
Organization:
StreetAddress: 8245 SW 166th Place
Address2:
City: Aloha
State: OR
ZipCode: 97007
Country: USA
Phone: 503-848-8475
FAX: 603-794-8173
Email: abelone@excelonline.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/22/00
Time: 9:54:05 PM
A negligent employer allowed a log to roll on my husband, causing a TBI that resulted in a life- threatening seizure disorder, status epilepticus, which a right temporal lobectomy failed to cure. The workers compensaton insurance refused to provide the in-home nursing care he requires and insisted on confining him in a nursing home, which they said would be the most "cost effective" way of providing the care he needs. They also refused to give him a disability award. I resigned my 17 year Postmaster career, forfeited my retirement and became my husband's fulltime care- giver, a decision I have never regretted. After 38 years of marriage, although many days are dark and our path is perilous, we are grateful to God for our journey together.
Name: karen wood
Title:
Organization:
StreetAddress: 30 rittenhouse circle
Address2:
City: flemington
State: new jersey
ZipCode: 08822
Country: usa
Phone:
FAX:
Email: KWOOD@AOL.COM
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/23/00
Time: 9:25:11 AM
HI have a son with a traumatic brain injury from a ca
Name: Faith Scheib
Title:
Organization:
StreetAddress: 81 South 4th Street
Address2: Apt. 4
City: Hamburg
State: Pa.
ZipCode: 19526
Country: USA
Phone: 610-562-5954
FAX:
Email: fspeace1@voicenet.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/24/00
Time: 8:08:56 PM
My son jumped from a van going 35mph sustaining a fractured skull and traumatoic brain iinjury.
Name: Carrie Puett
Title:
Organization:
StreetAddress: 101 Perry
Address2:
City: Edgerton
State: Missouri
ZipCode: 64444
Country:
Phone: 816-790-3500
FAX:
Email: CPuett1@AOL.COM
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 5/7/00
Time: 9:13:06 AM
I am the mother of two children with TBI.
Name: Debbie Miller
Title:
Organization:
StreetAddress: 8400 Adams Way
Address2:
City: Thornton
State: Co
ZipCode: 80229
Country: usa
Phone: 303-287-2094
FAX: 303-287-1678
Email: gemini8400@juno.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 5/14/00
Time: 7:11:27 PM
my son was injured in nov. 1996 in a motocross accident suffering a closed head injury. His injury was in the brain stem and given very little hope I brought him home in June of 97 aafter being told to put him in a nursing home. I'm very glad I did he started improving that very same day and hasn't stopped. our system needs to be woke up on how hard it is to deal with all the frustrations they force upon us. I'm ready to to do my part in changing the way theyt treat us.
Name: Jenny Houston
Title: Mother of man with a TBI
Organization: CRESCERE, Inc. (non-profit organization trying to develop residential
services for TBI survivors here in Northern California.
StreetAddress: POB 787
Address2:
City: Fairfax
State: California
ZipCode: 94930
Country: United States
Phone:
FAX:
Email: ladeyj@ix.netcom.com
URL: http://
Participating_Movement: No
Helping_Movement : No
Date: 5/20/00
Time: 4:22:27 PM
My son Mark is an early TBI survivor. Mark was hit by a drunk driver when he was 19 years old in July, 1973. He was in the hospital for a year. Then HE came home to live with me as there was/is no place else for him to be -- a common TBI scenario. Mark was a young musician hell bent on a BIG career as a drummer. Who knows,he might have made it as he had the drive and talent to succeed even tho the music business is a tough business. He had worked very hard to achieve the professional status he had as a drummer at the age of 19 by practicing 4,5,6 hours every day from the age of 15 when he decided he wanted to be a drummer. He and two other band members (one broke both his shoulder blades and one was in the back seat of a two-door Volvo so was not tossed out of the care and hurt) were on their way to make the final arrangements for a gig at a popular nightspot in San Francisco that Mark had arranged for their band, SASS. Physically, Mark is in good shape, but he has lots of trouble with memory, cognition, judgment, impatience and all of the behavioural problems one has when they have frontal lobe damage. Mark is fully aware of all that he has lost and we have not yet been able to find a satisfying life to replace the career he had in mind. I simply have not had the personal or financial resurces to help him find something else he loves and services in the community and state are very limited. One of the things that distresses me so is that Mark was hurt 27 years ago, but new survivors and families are still having the same problems we "oldies but goodies" experieinced. Something is wrong! It is time for us to begin to pull together to get the services and help we need as TBI survivors and as family caregivers. There are some 5 million people in the US today with a TBI/ABI. About 64% of those survivors are being cared for by their families because there is no place else for them to be. 66% of those caregivers are women alone -- mostly mothers but some wives who may also have young children at home. Breakup in TBI families is greater than in any other medical catastrophe. Over one-third of TBI family caregivers have to give up their employment to meet their caregiving responsibilities. A TBI in the family affects every member of the family thru the grandchildren. Only about 5% of TBI survivors get adequate care and services because of the lack of money. WE HAVE A PROBLEM!
I'd like to say that it is pretty obvious that if we don't unite to get the care and services we need for both our TBI family members and ourselves, all of us and all new injuries added to this special group are going to be in the same place we are today. SOMETHING HAS TO BE DONE; WE MUST BEGIN TO WORK TOGETHER.
Name: Jeri Fantuzzo
Title:
Organization:
StreetAddress: 2814 Greenway Road
Address2:
City: Ashland
State: Ky
ZipCode: 41102
Country: USA
Phone: 606-324-4478 after 5:00
FAX:
Email: fantuzzo@wwd.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 6/8/00
Time: 9:32:39 PM
Hello, and actually it is ABI. I am caregiver for a husband post encephalitis. My husband contacted probable EEE in OCT 1997. He was self-employed tire company owner. We have made improvements, only to fall short of recovery with deficits. Memory, cognition, personality change repetative or what they would call OCD. The "bein g" of who he was is gone. He does not have the initation has to have lists to know what to do. We lost the store, was on SSI until SSD kicked in, and we waited the two years for his medicare to kick in which was in April 2000. He can drive in Ashland, only because we delivered "Meals on Wheels" for two years to help him regain some direction. Outside of this city of 27,000 would be out of the question. His story is on the Encephalitis Stories under Jim F 52 Kentucky. Yes, it has changed everyone in this family. And some not for the good. Aricept was the drug first used, didn't seemed to help.
Name: Glynis Stuart
Title: Aunt to tbi nephew
Organization:
StreetAddress: 5556 Woods Rd
Address2:
City: Stewartstown
State: pennsylvania
ZipCode: 17363
Country: USA
Phone:
FAX:
Email: ggirl1@mindspring.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 6/12/00
Time: 11:36:42 PM
My nephew (Kevin) fell 12-15 foot off a balcony in 1998.He sustained a closed head injury. He was in the hospital form Dec '98 until March '99. He then went to a transitional care hospital until May '99 He was "awake" when he came home but very mininal responses.As of August '99, he has made alot of improvement.He understands commands and tries to comply,he laughs at jokes,frowns at sad things and really likes to hear about pretty girls coming to see him.He can be very stubborn when he's tired of being messed with.He gets frustrated because he can't form words.He has been trying to talk for a year but until a couple months ago he had the trache in.After arguments with the medical system and letters to the hospital administrator, we got a doctor that cares.He took Kevin's trache out.I also believe Kevin wouldn't be getting OT or speech at all if I hadn't wrote to the Congress- man representing their district in SC.Kevin had been medically neglected for a year and because of this his right arm is locked in the bent postion and has been infected a few times.I am going down there again this week to fight some more with "the system".I do all the advocating for him because his mother(primary cargiver) has two other kids. One of which has Downs syndrome.He is at home too. Kevin was 20 yrs old when he got hurt.He worked for a landscaping company,had his own apt and was engaged.All the doctors wanted to do was sustain life(not make it better). I firmly believe that every state should have a hospital and rehab for head injured persons 'cause unfortunately there are alot of them.The medical profession admits that the brain is complex, so we need to have more facilities to study and treat these humans(I told a Dr that Kevin was not an animal,and it was a shame that my dog gets better treatment at the vets office.)I also believe that the case managers should have more training in head injuries.Kevin's only does what I tell her to request. I spend hours researching and informing her of what can be done.She has tried to tell me certain things can't be done and I told her that I know it can and it will or I won't accept it.The next day she called me to say that what I had requested was going to be done. I think it stinks that we have to fight to get the treatment that we should for our loved ones.
Name: Teri Belotti
Title: Caregiver to my son Jason
Organization:
StreetAddress: 2036 St Clair Street
Address2:
City: Racine
State: WI
ZipCode: 53402
Country: USA
Phone: only if asked for
FAX:
Email: TBImom@aol.com
URL: won't let me add it
Participating_Movement: Yes
Helping_Movement : Yes
Date: 6/21/00
Time: 8:18:15 PM
You may read my son, Jason's story at this URL:http://pages.ivillage.com/bh/tbimom/Jason.html
Name:
Title:
Organization:
StreetAddress:
Address2:
City:
State:
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 7/2/00
Time: 10:48:57 AM
I was in an auto accident in 75. Or was it 76? I really don't remember. That's one of my problems. Memory loss and seizures and all the other things that many other people with tbis acknowle dge as part of the recovery. But what you don't know is that we are different people. I am not the same person-mentally-as before the accident. I have a lack of emotion. I am not able to be as spontanious as the average person. I can't plan things since I can't remember. I can't remember people or names or many things that allow you to have a "life". I live alone, can't tolerate noise or being with people. Too many things just confuse my poor brain. I need a quiet, pieceful life style to survive, as do most of us. But I wasn't even told I had a head injury until years later. Funny isn't it.
Name: Patsy Fowler
Title: RN BSN
Organization:
StreetAddress: 4811 Blanton Street
Address2:
City: Loris
State: SC
ZipCode: 29569
Country: USA
Phone: 843-756-1039
FAX: 843-756-2152
Email: pgf10@sccoast.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 7/22/00
Time: 11:40:22 AM
I have no personal experience with brain injury. I am a nurse and I have taken care of patients with brain injury. My ex sister in law has brain injury and I have learned a lot from her mother, Ila Nofsiger. I know this is an extremely serious matter that should be supported by as many people as possible and I would like to be of whatever service I can to this cause.
Name: Sarah Wrightson
Title:
Organization:
StreetAddress: P.O. Box 210373
Address2:
City: Nashville
State: TN
ZipCode: 37221
Country: USA
Phone: 615.646.3103
FAX:
Email: sarahwrightson@vincebell.com
URL: http://www.vincebell.com
Participating_Movement: Yes
Helping_Movement : Yes
Date: 7/26/00
Time: 1:12:26 PM
Form not working...please contact me. Thanks! Sarah
Name: Brenda
Title:
Organization:
StreetAddress: 2415 Maplewood Drive
Address2:
City: Gastonia
State: NC
ZipCode: 28052
Country: USA
Phone: 704-867-1146
FAX: 704-865-3917 (work)
Email: bcrenshaw1@carolina.rr.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 7/27/00
Time: 8:12:40 PM
My son and my brother both have TBI.
Name: Terry Houlihan
Title: Traumatic Brain Injury Person
Organization: none yet
StreetAddress: 7785 Co.Rd.10 N.#5
Address2:
City: Waconia
State: MN.
ZipCode: 55387
Country: U.S.A.
Phone: (952)-442-1290
FAX:
Email: houville@webtw.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 8/7/00
Time: 12:07:08 PM
On Dec.21 1999 car accident,I and 5 year twins life flighted to Hennipen County Medical Center,I had a number of brain operations,my wife knew I had quit my last job for medical reasons,in between stays with me she filed S.S.D.I forms for me,filed with Craver County for MN.state medical aid,We had me released from Knapp Rehab Center on Jan.21 to finish rehab,she and I both sick of dealing with mistakes made by nurses and doctors in my care and rehab.We then started battles with Carver County over home medical help couldn't get until SSDI decided I was disabiled,which was denied Jul. because in March doc. removed my Halo, my broken neck was healed doc signed paper saying I was fine to return to work with no limitations.I can't turn head more than 10 degrees side to side, I can't control my emotions,my memory is unstable SSDI THINKS I can have substantial income from a job with no stress or physical demands or memory needed.These people need to trade places with me now!!
Name: Cari Zimmerman
Title:
Organization:
StreetAddress: 423 Klondike Ave
Address2:
City: Staten Island
State: New York
ZipCode: 10314
Country: usa
Phone: 718-698-4416
FAX:
Email: CZimm24@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 8/17/00
Time: 5:47:23 PM
Name: Mrs. Madeline Lofthouse
Title: Wife/caregiver to Michael Husband
Organization: none
StreetAddress: 9417 Moon Splash Ct.
Address2:
City: Las Vegas
State: Nevada
ZipCode: 89129
Country:
Phone: (702) 303-1147
FAX:
Email: z1mika@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 10/24/00
Time: 4:38:07 PM
Name: Mary E. Moore
Title:
Organization:
StreetAddress: 10 Harlan Lane
Address2:
City: Heber Springs
State: Ar.
ZipCode: 72543
Country: U.S.
Phone:
FAX:
Email: mefm@arkansas.net
URL: http://
Participating_Movement: Yes
Helping_Movement : No
Date: 10/30/00
Time: 9:51:25 PM
On June 21st my 27yr old sone was injured in an accident. He sustained a closed head injury and spinal cord damage. I have been his primary caregiver since he came home from rehab. seven months later. Had a feeding tube and an open stoma. I came home with no instructions except how to feed him. No word about swallow test or how long before I could start feeding him. No appt. with a primary care. No special equipment. I was on my own. For the most part it has been that way since.
Name: Chip & Betsy Callahan
Title: President/Vice President/Owners
Organization: Cornerstone Services
StreetAddress: PO Box 1328
Address2:
City: Boone
State: NC
ZipCode: 28607
Country: USA
Phone: 828-264-9812
FAX: 828-264-5945
Email: csinc@boone.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 10/31/00
Time: 3:42:58 PM
We have been service providers for TBI
Name: Faith Scheib
Title:
Organization:
StreetAddress: 81 South 4th Street
Address2: Apt. 4
City: Hamburg
State: PA
ZipCode: 19526
Country: USA
Phone: 610-562-5954
FAX:
Email: fspeace1@voicenet.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 10/31/00
Time: 4:47:46 PM
My son received his TBI 7/14/97. Life for him and the rest of the family will never be the same! He is "high functioning" but continues to have difficulties and the public has no idea what Brain Injury is, nor do the Politicians!
Name: Joanne Smith
Title:
Organization:
StreetAddress: 33 Laurie Hill Road
Address2: PO Box 25
City: Revere
State: PA
ZipCode: 18953
Country: USA
Phone: 610-847-2993
FAX: 610-749-2049
Email: jmlines@epix.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 11/4/00
Time: 11:06:43 PM
My husband suffered a TBI in an accident 13 13 months ago. That 13 months has been a nightmare a nightmare for me. I have learned how inadequate the system is. The solution I kept hearing was nursing homes. That's not fair. not fair. It's very obvious to me that there is a lot of work to be done to make the system adequately provide for brain injured injured people. I have been dreaming of the day I could go in front of a group of politicians and state my case. There is a lot of work to be done on behalf of the brain injured, and I for one am ready to get started.
Name: Bettie Timberlake
Title:
Organization:
StreetAddress: 1101 Raintree Drive
Address2:
City: Charlottesville
State: VA
ZipCode: 22901
Country: USA
Phone:
FAX:
Email: BTimber12@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 11/14/00
Time: 10:28:34 PM
Name: Jo Vaughn
Title:
Organization:
StreetAddress: 939 Creekside Circle
Address2:
City: Naperville,
State:
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 12/6/00
Time: 1:01:06 AM
Name: Renae Rivera
Title: COMMUNITY SUPPORT NETWORK COORD
Organization: Brain Injury Association Of Ohio
StreetAddress: 2116 West Blvd
Address2:
City: Cleveland
State: Ohio
ZipCode: 44102
Country: USA
Phone: 216-961-0236
FAX:
Email: rrbiaoh@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 12/8/00
Time: 9:41:42 AM
Name: Patti Pence
Title:
Organization:
StreetAddress: 647 N. Central City Rd.
Address2:
City: Joplin
State: MO
ZipCode: 64804
Country: USA
Phone: work 417-626-2800
FAX: work 417-624-0222
Email: pootra@earthlink.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 12/19/00
Time: 4:12:18 PM
Name: Mary Lou Coppinger
Title:
Organization:
StreetAddress: 4058 St. Monica Drive
Address2:
City: Baltimore
State: MD
ZipCode: 21222
Country: USA
Phone: 410-388-0449
FAX:
Email: mlcbcopp@bcpl.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/3/01
Time: 12:32:41 AM
My son received a brain injury in 1986. WWe have been fighting for services ever since. I am very interested in this organizaiton. I can not see what I am typing so I will stop. Something is wrong with this area of your web page.
Name: joseph mannello
Title:
Organization:
StreetAddress: 137 jockey hollow
Address2:
City: Bernardsville
State: new jersey
ZipCode: 07924
Country: usa
Phone: 908-766-4222
FAX: 908-766-5823
Email: jmannello@rcn.com
URL: http://
Participating_Movement: Yes
Helping_Movement : No
Date: 1/10/01
Time: 9:58:28 PM
My dad
My dad had brain surgery and is now in rehab
Name: Tina Means
Title: survivor encephomyolytis "93"
Organization: skills not great, laugh
StreetAddress: 13460 N. Galleno
Address2:
City: Marana
State: az
ZipCode: 85653
Country: usa
Phone: 520-682-4448
FAX:
Email: tinaaz@juno.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/29/01
Time: 1:04:46 PM
text line not working,sotry under my name at tbi.org tina means
Name: Glynis Stuart
Title:
Organization:
StreetAddress: 5556 Woods Rd
Address2:
City: Stewartstown
State: Pennsylvania
ZipCode: 17363
Country: United States
Phone:
FAX:
Email: ggirl1@mindspring.com
URL: http://tbihome.org/member
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/8/01
Time: 12:44:34 AM
Advocate for tbi nephew,now 23, who Fell off a balcony Dec.'98.
Name: Glynis Stuart
Title:
Organization:
StreetAddress: 5556 Woods Rd
Address2:
City: Stewartstown
State: Pennsylvania
ZipCode: 17363
Country: United States
Phone:
FAX:
Email: ggirl1@mindspring.com
URL: http://tbihome.org/member
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/8/01
Time: 12:46:29 AM
Advocate for tbi nephew,now 23, who Fell off a balcony Dec.'98.
Kevin20 is his homepage, please check it out.
Name: Earline Surratt
Title: caregiver/mother of TBI son
Organization:
StreetAddress: 120 Emperor Landing Rd.
Address2:
City: Edenton
State: NC
ZipCode: 27932
Country: USA
Phone: 252-482-8990
FAX: 252-482-7593
Email: artist@inteliport.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/8/01
Time: 10:45:57 PM
Name: Earline Surratt
Title: caregiver/mother of TBI son
Organization:
StreetAddress: 120 Emperor Landing Rd.
Address2:
City: Edenton
State: NC
ZipCode: 27932
Country: USA
Phone: 252-482-8990
FAX: 252-482-7593
Email: artist@inteliport.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/8/01
Time: 10:46:35 PM
Name: Dave Witherspoon
Title:
Organization:
StreetAddress: 6208 Creekside Ln.
Address2:
City: League City
State: Texas.
ZipCode: 77573
Country: usa
Phone: 281-554-4036
FAX:
Email: dwitherspoon1@yahoo.com
URL: http://
Participating_Movement: No
Helping_Movement : No
Date: 2/10/01
Time: 6:12:40 PM
Our son Joseph had an auto accident in 1981 and had a closed head injury injury and we have had many problems in the last 20 yrs.trying to prove to people that he has a short term memory and is unablew to support himself
The reason why I can't a lot at this timew is because I am battling the effects of my last cancer surgery
Name: Tammie Renfroe
Title: care giver
Organization:
StreetAddress: 1456 cypress pond rd.
Address2:
City: Willacoochee
State: Ga.
ZipCode: 31650-4453
Country: coffee
Phone: 912)393-1208
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/14/01
Time: 1:26:01 PM
I'm caregiver for my son of three year
Name:
Title:
Organization:
StreetAddress:
Address2:
City:
State:
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/20/01
Time: 1:28:42 PM
I I am unable to view any of my writing while typing. Is there any way I can email you?
Name: Carol Roux
Title: DD
Organization:
StreetAddress: 205 Hanson Ridge Road
Address2:
City: Springvale
State: Maine
ZipCode: 04083
Country: USA
Phone: 207-324-6149
FAX:
Email: lifegallery@psouth.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/20/01
Time: 1:30:36 PM
I am unable to see anything I am typing, can I email you?
Name: Jane Bogan
Title:
Organization:
StreetAddress: 13107A Millhaven Pl
Address2:
City: Germantown
State: MD
ZipCode: 20874
Country: USA
Phone: 301-540-3798
FAX: 240-686-0876
Email: JANEBOGAN@AOL.COM
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/31/01
Time: 10:33:09 AM
iN 1992 MY 16-YEAR OLD DAUGHTER WAS IN AN AUTO ACCIDENT WHICH RESULTED
UB
Name:
Title:
Organization:
StreetAddress:
Address2:
City:
State:
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/31/01
Time: 10:33:53 AM
Name: MICHAEL DEAN
Title:
Organization: NONE
StreetAddress: 1011B SE23PL
Address2:
City: CAPECORAL
State: FL
ZipCode: 33990
Country: USA
Phone: 9415743263
FAX:
Email: Mrdean50@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/4/01
Time: 3:21:46 PM
severe CVA LEFTM PARLIZED ON MY LEFT SIDE ALL MY MOTORSKILLS AREGONE.MY BRAIN STILLIS CAPABLE OF THINKING
Name: MICHAELDEAN
Title:
Organization: NONE
StreetAddress: 1011B SE23PL
Address2:
City: CAPECORAL
State: FL
ZipCode: 33990
Country: USA
Phone: 9415743263
FAX:
Email: Mrdean50@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/4/01
Time: 3:25:44 PM
asevereCVEleft my left side parlized.all my motorskills are gone on that side
Name: lora onkka
Title: mom
Organization:
StreetAddress: 1043 delphi
Address2:
City: sheridan
State: wyo.
ZipCode: 82801
Country:
Phone:
FAX:
Email: daloras2@home.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/8/01
Time: 6:30:45 PM
MOTHER AND CAREGIVER OF SON 16 WITH TBI
Name: Eileen Curry
Title:
Organization:
StreetAddress: 2000 So. 18th
Address2:
City: Linoln
State: NE
ZipCode: 68502
Country: USA
Phone: (402)435-6437
FAX: (402)421-2532
Email: mcurry1144@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/21/01
Time: 6:10:45 PM
Name: DAVID SCHWARTZ
Title:
Organization:
StreetAddress: 12465 POPLAR RD
Address2:
City: AUBURN
State: CA
ZipCode: 95602
Country: US
Phone: 530 268-3931
FAX:
Email: jenise@footill.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/23/01
Time: 9:35:59 AM
4/22/01 I am a 33 year old married father of 2. I am a TBI survivor since 1/8/98 with many physical injuries as well. I wish to help because my families life is continuing to 'stagger' due to the financial issues. 'Quality of Life' would be so much better if the stress of being the 'provider' wasn't on my mind. My spouse is my primary caregiver, but even her with her strength, hasn't gotten any relief. The doctors, insurance companies, lawyers are all unaware of BI and the healing time is for a fact longer that 2-3 years. Me, as a survivor can personally attest to that. I would be more that willing and eager to assit in any way possible and I would also like to be informed about the event in Washington, D.C. Such as dates, times, locations Thank you for your time. Sincerely, David J. Schwartz
Name: KATIE M SMITH
Title:
Organization:
StreetAddress: 4246 CHARTER OAK DR
Address2:
City:
State:
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 4/30/01
Time: 11:57:08 PM
Name: KATIE M SMITH
Title:
Organization:
StreetAddress: 4246 CHARTER OAK DR
Address2:
City: FLINT
State: MI
ZipCode: 48507-5512
Country: USA
Phone: 810-238-1716
FAX: 810-232-7108
Email: ksmith3594@aol.com
URL: http://
Participating_Movement: No
Helping_Movement : No
Date: 5/1/01
Time: 12:03:53 AM
Name: Nancy Buckner
Title:
Organization:
StreetAddress: 1175 Singleton
Address2:
City: Roselle
State: Illinois
ZipCode: 60172
Country: USA
Phone:
FAX:
Email: mnbuc@aol
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 5/14/01
Time: 10:09:50 PM
My son suffered a brain injury from an auto accidentin 1998 at age 16.
Name: Melissa Forcade-Thomspon
Title:
Organization:
StreetAddress: 6097 N. Queensbury Pl.
Address2:
City: Boise
State: ID
ZipCode: 83713
Country:
Phone:
FAX:
Email: melbles@yahoo.com
URL:
Participating_Movement: Yes
Helping_Movement : No
Date: 5/18/01
Time: 6:21:07 PM
Name: Patt Abrahamson
Title: Caregiver for BI son (from anoxia)
Organization:
StreetAddress: P. O. Box 344
Address2:
City: Escanaba
State: MI
ZipCode: 49829
Country:
Phone: 906-786-5699
FAX:
Email: pattgary@up.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 5/23/01
Time: 10:10:42 AM
doesn't scroll
Name: Pamela Gregg
Title: Kalebs Caregiver/Grandmother
Organization:
StreetAddress: 130 S. Spencer St.
Address2:
City: Duncan
State: S.C.
ZipCode: 29334
Country: USA
Phone: 864-439-9930
FAX:
Email: KKaleb86@aol or Kaleb86@Yahoo.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 5/25/01
Time: 12:26:02 AM
Your comments section is not working! I am willing to help in any way
Name: Paula Cadenhead
Title:
Organization:
StreetAddress: 6032 Hidden Rock Dr
Address2:
City: North Las Vegas
State: Nevada
ZipCode: 89031
Country:
Phone:
FAX:
Email: strynagain@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 7/7/01
Time: 12:25:38 AM
Name: Mrs. Virginia Reid
Title: Have two brain injuries
Organization:
StreetAddress: 826 North Deal Avenue
Address2:
City: Newton
State: North Carolina
ZipCode: 28658
Country: Catawba
Phone: 828-466-3291
FAX:
Email: reidfamily4@yahoo.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 7/9/01
Time: 9:44:47 AM
Name: rosetta b. inmon
Title:
Organization:
StreetAddress: 1400 hatherleigh ct
Address2:
City: raleigh
State: north carolina
ZipCode: 27612
Country: usa
Phone: 919-847-2562
FAX:
Email: rbinmon@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 7/11/01
Time: 6:55:06 PM
IMy name is Rosetta Inmon.I am a 51 year old black female>i SUUSTAINED MY INJURY IN
U.
Name: LAURA KRISCH
Title:
Organization:
StreetAddress: 40 ROCK RIDGE RD
Address2:
City:
State:
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 7/28/01
Time: 9:34:37 PM
Name: LAURA KRISCH
Title:
Organization:
StreetAddress: 40 ROCK RIDGE RD
Address2:
City: MORGANTOWN
State: PA
ZipCode: 19543
Country: USA
Phone: 610-286-0850
FAX: 610-286-0273
Email: BVCONTROLLER@AOL.COM
URL: http://
Participating_Movement: Yes
Helping_Movement : No
Date: 7/28/01
Time: 9:36:00 PM
PLEASE CALL OR WRITE ME RATHER THAN USING MY E-MAIL. THANK YOU
Name: LAURA KRISCH
Title:
Organization:
StreetAddress: 40 ROCK RIDGE RD
Address2:
City: MORGANTOWN
State: PA
ZipCode: 19543
Country:
Phone: 610-286-0850
FAX: 610-286-0273
Email: BVCONTROLLER@AOL.COM
URL: http://
Participating_Movement: Yes
Helping_Movement : No
Date: 7/28/01
Time: 9:38:18 PM
MY TBI EX-FIANCE IS IN A NURSING HOME.HE IS 47 AND FUNDING IS UNAVAILABLE FOR A REHAB FOR HIM
Name: LAURA KRISCH
Title:
Organization:
StreetAddress: 40 ROCK RIDGE RD
Address2:
City: MORGANTOWN
State: PA
ZipCode: 19543
Country:
Phone: 610-286-0850
FAX: 610-286-0273
Email: BVCONTROLLER@AOL.COM
URL: http://
Participating_Movement: Yes
Helping_Movement : No
Date: 7/28/01
Time: 9:39:11 PM
MY TBI EX-FIANCE IS IN A NURSING HOME.HE IS 47 AND FUNDING IS UNAVAILABLE FOR A REHAB FOR HIM
Name: Nanette Jeanae Jones
Title:
Organization:
StreetAddress: P.O. Box 41
Address2: 122 22000 Rd.
City: Cherryvale
State: KS
ZipCode: 67335-0041
Country: United States
Phone: (620) 336-8014
FAX:
Email: jeanae_j@yahoo.com
URL: http://
Participating_Movement: No
Helping_Movement : No
Date: 8/1/01
Time: 3:31:24 PM
Name: Deb Ryan
Title:
Organization:
StreetAddress: 3519 Blasdell Ct.
Address2:
City: Charlotte
State: NC
ZipCode: 28269
Country:
Phone:
FAX:
Email: debryan@mindspring.com
URL: http://
Participating_Movement: No
Helping_Movement : No
Date: 8/8/01
Time: 1:48:07 PM
Last July, my husband was hit in the head by the boom of a sail boat we were chartering. After 3 months of hospitalization in which he had to relearn how to use his left side, and another 3 months recoverying at home, he went back to work. Everyone has been amazed at his miraculous recovery and we are thankful. But lingering problems remain that affect our quality of life. The most significant is his loss of balance. He can no longer sail, roller blade, play sports etc. We would like help, direction anything to address this ongoing problem.No one seems to be able to help him take this next step or know if it's possible. As I said, we're just looking for help.
Name: DANIEL AND ELYSE STREET
Title: JASONS PARENTS
Organization:
StreetAddress: 1618 N. SCHRADER BLVD. 203
Address2:
City: HOLLYWOOD
State: CA.
ZipCode: 90028
Country: USA
Phone: 323 466-6047
FAX:
Email: DANIELSTREET777@AOL.COM
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 9/7/01
Time: 12:54:42 AM
OUR SON JASON WAS INVOLVED IN A MAJOR CAR ACCIDENT IN FRESNO CA. TWO WEEKS AGO. HE IS CURREENTTLY IN ICU IN CRITICAL CARE, NO INSURANCE, SEEKING INFO TO HELP GUIDE US IN THE CARE OF OUR TBI SON.
I KNOW THAT THERE HAS BEEN NO RESPONSE FROM OUR SON DUE TO BRAIN STEM AND BRAIN INJURY. BUT I INTEND TO SUPPORT MY FAMILY AND WIFE WITH ALL MY LOVE AND DEDICATION. MY WIFE HAS MOVED TO FRESNO CA. TO BE WITH MY SON AS I WORK IN L.A. TO RAISE FUNDS TO MOVE PERMENTLLY TO FRESNO. HOW EVER LONG IT TAKES WE WILL SURVIVE. IF YOU COULD BE OF ANY GUIDANCE, PLEASES FEELL FREE TO WRITE OR CALL. LOVE CONQUERS ALL. GOD BLESS YOU ALL
DANIEL AND ELYSE STREET
Name: jacki johnson
Title: Registered Nurse
Organization: Baylor Medical Center -Ellis County
StreetAddress: 1405 W. Jefferson(work)
Address2: 1152 Azalea Lane(home)
City: Waxahachie
State: Tx
ZipCode: 75165
Country: USA
Phone: (972)923-7171(wk)
FAX: (972)923-3903
Email: jmjohnson34@yahoo.com(home)
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 9/17/01
Time: 11:31:02 PM
I have a twelve year old son who suffered a TBI with DAI in July 1998.
Name: Dawn Clifford
Title: caregiver and wife to Paul
Organization:
StreetAddress: 207 Schoolside Dr
Address2:
City: Lehigh Acres
State: Florida
ZipCode: 33936
Country: U.S.A
Phone: 941-368-9796
FAX:
Email: dclif10010@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 10/2/01
Time: 11:15:35 PM
M
Name: Marjorie Fredell
Title: Mom
Organization:
StreetAddress: 2991 Sam Houser Road
Address2: P.O. Box 8
City: Vale
State: NC
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 10/8/01
Time: 2:43:58 PM
Name: Marjorie Fredell
Title: Mom
Organization:
StreetAddress: 2991 Sam Houser Road
Address2: P.O. Box 8
City: Vale
State: NC
ZipCode: 28168
Country: USA
Phone: 704-276-1934
FAX:
Email: MFredell@vnet.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 10/8/01
Time: 3:00:02 PM
My daughter, Barbara, received a Severe TBI when she slipped from a
horse's back on 9/8/92. She was 27 years old and was going to be
married in Oct. of the same year. Among other things she had severe
behavioral problems. We kept her at home for almost 9 months and
she tried to take her life in our swimming pool I knew that she was
no longer safe at home. Our fight has been long and hard to get
Barbara's needs met and a good quality of life. She is currently
living in a residential environment with 3 other TBI victims who
sustained a brain injury after the age of 21. I have written a paper
on how to work through the system if anyone would like a copy.
Barbara was on private insurance for 18 months (Cobra plan) and then
we had to work with Medicaid. I read your stories and my heart cries
for you. You all will always be in my prayers. I have worked in
the state grass roots projects bringing awayeness to senators and
representatives alike, especially informing then that there is no help
for TBI victims over the age of 21. We have battled for a TBI Waiver.
I understand that the year 2002 will allow us to "trial" a waiver for
about 25 TBI survivors over the age of 21. Prayer that it is a
success. God Bless You All.
Name: Yolanda Biltjinitis
Title:
Organization:
StreetAddress: 1940 5th Street
Address2:
City: Gering
State: NE
ZipCode: 69341-3036
Country: USA
Phone:
FAX:
Email: nebraskahugs4u@yahoo.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 10/16/01
Time: 2:43:59 PM
Name: Barbara Porter
Title:
Organization: Central Coast Head Injury Support Program
StreetAddress: 648 Kern Avenue
Address2:
City: Morro Bay
State: CA
ZipCode: 93442
Country: USA
Phone: (805)772-0160
FAX:
Email: BarbSlo@aol.com
URL: http://
Participating_Movement: No
Helping_Movement : No
Date: 10/17/01
Time: 7:22:12 PM
This page does not work.
Name: Betty Pedro
Title:
Organization:
StreetAddress: 305 Oak Hill Ave
Address2:
City: Endicott
State: NY
ZipCode: 13760
Country: USA
Phone: (607) 757-9673
FAX:
Email: betyboop4u@aol.com
URL:
Participating_Movement: Yes
Helping_Movement : Yes
Date: 11/21/2001
Time: 6:27:23 AM
Name: Lorie Morphis
Title:
Organization:
StreetAddress: 7524 Thurston Road
Address2:
City: Springfield
State: Oregon
ZipCode: 97478
Country: USA
Phone: 541 744-1050
FAX:
Email: adm-jan-serv@email.msn.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 11/28/2001
Time: 3:05:35 AM
Name: Jo Anne Richardson
Title:
Organization:
StreetAddress: 8483 Fenton Road
Address2:
City: Grand Blanc
State: MI
ZipCode: 48439
Country: USA
Phone: 810-695-0729/810-730-5376
FAX:
Email: laylasbar1@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/7/2002
Time: 11:24:18 AM
M
Name: Sherry Taylor
Title:
Organization:
StreetAddress: P.O. Box 131
Address2:
City: Bloxom
State: VA
ZipCode: 23308
Country:
Phone:
FAX:
Email: sherryt@shore.intercom.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/7/2002
Time: 10:02:03 PM
Name: Helen L. Thomas
Title:
Organization:
StreetAddress: 9317 Kimmel lane
Address2:
City: Charlotte
State: N.C.
ZipCode: 28216-1861
Country:
Phone: 704-395-2377
FAX:
Email: hleethomas@yahoo.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/9/2002
Time: 3:21:44 PM
I'm a spinal cord tumor survivor but I'd be glad to help in any way.
Name: Cal & Karen Mendenhall
Title:
Organization:
StreetAddress: P.O. Box 771564
Address2:
City: Eagle River
State: Alaska
ZipCode: 99577
Country:
Phone: 907-694-0631
FAX: 907-696-8823
Email: edm@ak.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/9/2002
Time: 3:47:19 PM
Please add us to your newsletter mailing list and send us a copy of thinking ahead.
Karen was hit by a semi on the drivers side of her car on the highway on 11 Oct 2001. She spent over 30 days in a coma. We had her medivac'ed to UWMC 8 North, Seattle, WA after 30 days in Alaska Regional hospitital, Anchorage, Alaska. We returned to Alaska 20 Dec 2001 and are continuing therapy. We are scheduled to return to UWMC 2/13.14.&15 2002. She is a 41 year old female with a college degree who had worked for 21 years for the US Army Corp of Engineers as a contracting professional.
She has a factured pelvis, labrium tear in her right shoulder and damage to her 3rd optical nerve.
We are blessed beyond measure with her recovery so far. She was in great physical condition and has a determination to improve.
We would like any available information and materials.
Cal & Karen Mendenhall P.O. Box 771564 Eagle River, Alaska 99577
Email edm@ak.net Fax 907-696-8823
Phone 907-694-0631
Thanks, Cal and Karen
Name: Shirley
Title: Mrs
Organization: Retired School Teacher
StreetAddress: 3344 Acree St
Address2:
City: Bartlett
State: TN
ZipCode: 38134
Country: USA
Phone:
FAX:
Email: kellns@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/21/2002
Time: 10:55:26 AM
A very close friend........
Name: Brandi Baker
Title:
Organization:
StreetAddress: 3047 Gulfstream Ln
Address2:
City: Jacksonville
State: FL
ZipCode: 32250
Country: USA
Phone: 904-223-6036
FAX:
Email: elismom@email.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/29/2002
Time: 10:18:15 PM
My sister was injured in a car accident about2 years ago. She is in a "reehabilitation center". This isn't typing correctly. Brandi
Name: Kevin Keivanfar
Title: Principal engineer
Organization: Ventura County Flood Control/Public work
StreetAddress: 800 S Victoria Ave.
Address2:
City: Ventura
State: California
ZipCode:
Country:
Phone: 805-654-2906
FAX:
Email: kevin.keivanfar@verizon.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/13/2002
Time: 12:59:38 AM
Name: Kevin Keivanfar
Title: Principal engineer
Organization: Ventura County Flood Control/Public work
StreetAddress: 800 S Victoria Ave. , Ventura , Ca
Address2: 1954 Ferndale Place
City: Thousand Oaks
State: California
ZipCode: 91360
Country:
Phone: 805-492-7754
FAX:
Email: kevin.keivanfar@verizon.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/13/2002
Time: 1:05:21 AM
Kevin is suffering from AVM, Hehad
He had a brain surgey aon October9, 2001. He had a severe Short term memory lost. And our insurance company are not c not helping.
Name: Kevin Keivanfar
Title: Principal engineer
Organization: Ventura County Flood Control/Public work
StreetAddress: 800 S Victoria Ave. , Ventura , Ca
Address2: 1954 Ferndale Place -- residence
City: Thousand Oaks
State: California
ZipCode: 91360
Country:
Phone: 805-492-7754
FAX:
Email: kevin.keivanfar@verizon.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/13/2002
Time: 1:06:13 AM
Kevin is suffering from AVM, Hehad
He had a brain surgey aon October9, 2001. He had a severe Short term memory lost. And our insurance company are not c not helping.
Name: Lisa Adams
Title: Mother
Organization:
StreetAddress: 1525 Jersey Ridge Rd.
Address2:
City: Zanesville
State: Ohio
ZipCode: 43701
Country: U.S.A.
Phone: 740-455-9030
FAX:
Email: Ladams8@columbus.rr.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/17/2002
Time: 9:33:50 AM
untreated 15 year old BIfrom stroke in infancy
Name: Lisa Adams
Title: Mother
Organization:
StreetAddress: 1525 Jersey Ridge Rd.
Address2:
City: Zanesville
State: Ohio
ZipCode: 43701
Country: U.S.A.
Phone: 740-455-9030
FAX:
Email: Ladams8@columbus.rr.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/17/2002
Time: 9:35:32 AM
untreated 15 year old BI from stroke @ young age.
Name: Colleen Popp
Title:
Organization:
StreetAddress: Route 1, Box 56D
Address2:
City: Marietta
State: Ohio
ZipCode: 45750
Country: USA
Phone: (740) 376-9440
FAX: (740) 376-9440
Email: colleenpopp@charter.net
URL:
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/26/2002
Time: 1:07:39 PM
Name:
Title:
Organization:
StreetAddress:
Address2:
City:
State:
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/12/2002
Time: 9:49:35 PM
My My
Name: Beverly D. Lord
Title:
Organization:
StreetAddress: 3352 Milledgeville Road
Address2:
City: Augusta
State: Georgia
ZipCode: 30909
Country: USA
Phone: 706-733-1210
FAX:
Email: blord@gracehill.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/12/2002
Time: 9:52:12 PM
Mother of 22 year old survivor of traumatc brain injury survior. Have spent the last 17 years trying to learn all that I could habout TBI.
Name:
Title:
Organization:
StreetAddress:
Address2:
City:
State:
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/12/2002
Time: 9:52:42 PM
Name:
Title:
Organization:
StreetAddress:
Address2:
City:
State:
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/12/2002
Time: 9:52:59 PM
Name: Holly Davis
Title: Board Member
Organization: Brain Injury Association of Texas
StreetAddress: 5908 Hidden Valley Trail
Address2:
City: Austin
State: TX
ZipCode: 78744
Country: USA
Phone: 512-431-5448
FAX: 512-326-8088
Email: hollyd@wt.net
URL: http://www.biatx.org
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/22/2002
Time: 6:45:47 PM
Name: Erin Whitworth
Title:
Organization:
StreetAddress: 4701 Monterey Oaks Blvd., Apt. 828
Address2:
City: Austin
State: Texas
ZipCode: 78749
Country:
Phone:
FAX:
Email: ewwhitworth@hotmail.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/26/2002
Time: 7:36:17 PM
I was involved in a horrific car accident on January 9th of this year. I suffered several injuries, but most seriously hurt was my brain. They thought they would have to do surgery, but my blood levels would not settle down after the trauma. By the time they did, the bleeding and swelling in my brain had decreased enough so they did not have to do surgery. I spent a week in the hospital. I have doctors appointments every week and I have to sleep far more than I ever did before. It has been very frustrating as I am almost a straight A student working on my MBA. I was in charge of organizing a leadership conference, and against the orders of 4 doctors and a speech therapist I continued with it, not getting much help from fellow students. My doctors say that I have come further in 2 months than most people do in 6. I want to do what I can to raise awareness, so people understand that while brain injuries are very serious they don't mean someone is stupid. I am not sure what I can do to help, I am trying to balance school and my own recovery at this point. But I wanted to let you know that I was interested if I could do anything. Thank you.
Name: elizabeth lewis
Title:
Organization:
StreetAddress: 737 N Pearl Circle
Address2:
City: Brandon
State: Florida
ZipCode: 33510
Country: usa
Phone: (813) 654-8794
FAX: (813) 654-4795
Email: elewis8560@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 3/28/2002
Time: 6:31:39 PM
my grandson is a neardrown in the state of florida. he drowned jan 13, 2000 in our pool. He survieved and we are one of the lucky oness because he is on his way to recovery, but please understantd that most peoplle are not that lucky. they need constant care and help and it is very hard on their familuies. respite care is a great help to the families and the patitient. by thee way this scorll does not work
Name: Lisa Y Walton-Hays
Title:
Organization:
StreetAddress: 2123 Lexington Woods Drive
Address2:
City: Spring
State: Texas
ZipCode: 77373
Country: USA
Phone: 281-651-6647
FAX:
Email: weewaa@ev1.net
URL: http://
Participating_Movement: No
Helping_Movement : No
Date: 9/25/2002
Time: 4:14:21 PM
Name: Judy Donovan
Title:
Organization:
StreetAddress: 145 Westminster RD
Address2:
City: E Weymouth
State: Mass
ZipCode: 02189
Country:
Phone: 781-337-6975
FAX:
Email: judyjudyjbar@aol.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 10/18/2002
Time: 11:04:24 PM
I am the caregiver to my husband Jack who fell off a ladder on 1/22/02 I have had to take care of him 24/7 I can not work he will not accept sitters to take him to his appts or do anything for him the state of Florida pays wives of tbi patients I think every state should pay caregivers what they would pay sitters I would like more information on how do change this law we had just refinanced our home 2 weeks before he fell so we are falling behind in all are bills I have always worked to help out so I would really like information to pay caregivers in every State thankyou judy Donovan
Name: Tracy Spracklen
Title:
Organization:
StreetAddress: Rt 1 Box 66
Address2:
City: Agra
State: Ok
ZipCode: 74824
Country: USA
Phone:
FAX:
Email: rocky@brightok.net
URL: http://robbyschiffernstbi
Participating_Movement: Yes
Helping_Movement : Yes
Date: 10/29/2002
Time: 12:47:27 PM
Caretaker of son Robert. 5/20/00.
Name: Delores Seaman
Title:
Organization:
StreetAddress: 11932 Gulf Beach Hwy
Address2:
City: Pensacola
State: Fl
ZipCode: 32507
Country: USA
Phone: 850 492 6181
FAX:
Email: deeannsea@cox.net
URL: http://deeannsea.com
Participating_Movement: No
Helping_Movement : Yes
Date: 11/23/2002
Time: 8:40:52 AM
I lost my daughter from TBI july 2001.
Name: Fred Acuff
Title:
Organization:
StreetAddress: 2725 jim mccarter rd
Address2:
City: york
State: S.C.
ZipCode: 29745
Country:
Phone:
FAX:
Email: facuff@carolina.rr.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 12/25/2002
Time: 6:54:06 AM
I live in South Carolina I had an auto accident where I hit my head on the sun visor mount in the car and sense then I have been having allot of trouble with almost all of the symptoms on your web site all the doc say is that it would get better over time then I fide out they think i am faking. my treatment consist of a 5 min interview whit my wife this is how they came to the idea I might be faking they did not even talk to me. I know you can do nothing but I thought the world should know the truth about brain injury in the case it is not your fault. In America it goes like this! first they take you to the hospital where they do not care if you have hit your head you are charged 2500 dollars for a ct of the wrong end of your body then 50 bucks for a band aid or two given some pain med. and sent home. if you go back there you are put on drug protocol first thing. so the following day you go to your doc and tell him what happened and instead of doing anything to help he emedeitly thinks your are faking so he dose a prostrate exam and sinds you away. then you get your self a lawyer and all they want to know is how much ins money is involved and to hell with the rest of your life or any trouble you are having, then they try to find some one to say you are disabled so they can get there 1/3 of that money so they send you to a lot of docs and they charge a lot of money to you for service you do not need and some of them think you are stupid right from the start and just want to date your wife. then all your personal ins tell you they do not have a record of having you covered on ins , so they denight payment when it comes to the mortgage co. and they want to foreclose on your house and the job calls you up and fires you so that your personal health ins dose not have to help pay any bills. after all you only paid a small amount of money for this coverage any ways why should they help you. Now it is 1 year to date, I have lost all my docs all my ins all my income my house my phone my car three lawyers, the wife is upset it may not be long till i lose my family, i have lost all my friends all my self esteem and the list goes on and on by the way did i say the other person and her ins walked away scott free. While I am left with to deal with all this on my own. you might think it is my fault for not doing things right or what ever but I am the survivor of the injury how am I to do these things for my self. But that is exactly what is expected of the brain injury victim in this country. So why all the web sites about brain injury, the best info for anyone in America with brain injury is to get your self to a third world country like even Mexico asap. if you need help because there is no help in America. all any one cares about here is how much can I benefit from some one else miss fortune and there is no laws here to help you. all this stuff about all the symptoms and recherché and all the dose not help because what the sites do not understand is if you are injured you already know all this. by the way while you are running across the border to help remember all the people in jail in America they have RIGHTS...! but the only thing they did was to kill some one or sell a little drugs for profit or some thing like that. by the way the average person in jail gets 47,000 dollars a year in benefits to service on but that is because they have RIGHTS...! but you as a brain injured person have nothing because you do not know any better you are dun and do not know some one is miss treating you or making fun of you and if you can get the ins to pay any thing it will be some thing like i was offered $817.00 to covered the car the house the lost income the docs and any things else that might pop up. AMERICA THE LAND OF THE FREE. free to cripple and mamba at will and to rob people of every thing they have as long as you are rich. thank you for your time fred I live in South Carolina I had an auto accident where I hit my head on the sun visor mount in the car and sense then I have been having allot of trouble with almost all of the symptoms on your web site all the doc say is that it would get better over time then I fide out they think i am faking. my treatment consist of a 5 min interview whit my wife this is how they came to the idea I might be faking they did not even talk to me. I know you can do nothing but I thought the world should know the truth about brain injury in the case it is not your fault. In America it goes like this! first they take you to the hospital where they do not care if you have hit your head you are charged 2500 dollars for a ct of the wrong end of your body then 50 bucks for a band aid or two given some pain med. and sent home. if you go back there you are put on drug protocol first thing. so the following day you go to your doc and tell him what happened and instead of doing anything to help he emedeitly thinks your are faking so he dose a prostrate exam and sinds you away. then you get your self a lawyer and all they want to know is how much ins money is involved and to hell with the rest of your life or any trouble you are having, then they try to find some one to say you are disabled so they can get there 1/3 of that money so they send you to a lot of docs and they charge a lot of money to you for service you do not need and some of them think you are stupid right from the start and just want to date your wife. then all your personal ins tell you they do not have a record of having you covered on ins , so they denight payment when it comes to the mortgage co. and they want to foreclose on your house and the job calls you up and fires you so that your personal health ins dose not have to help pay any bills. after all you only paid a small amount of money for this coverage any ways why should they help you. Now it is 1 year to date, I have lost all my docs all my ins all my income my house my phone my car three lawyers, the wife is upset it may not be long till i lose my family, i have lost all my friends all my self esteem and the list goes on and on by the way did i say the other person and her ins walked away scott free. While I am left with to deal with all this on my own. you might think it is my fault for not doing things right or what ever but I am the survivor of the injury how am I to do these things for my self. But that is exactly what is expected of the brain injury victim in this country. So why all the web sites about brain injury, the best info for anyone in America with brain injury is to get your self to a third world country like even Mexico asap. if you need help because there is no help in America. all any one cares about here is how much can I benefit from some one else miss fortune and there is no laws here to help you. all this stuff about all the symptoms and recherché and all the dose not help because what the sites do not understand is if you are injured you already know all this. by the way while you are running across the border to help remember all the people in jail in America they have RIGHTS...! but the only thing they did was to kill some one or sell a little drugs for profit or some thing like that. by the way the average person in jail gets 47,000 dollars a year in benefits to service on but that is because they have RIGHTS...! but you as a brain injured person have nothing because you do not know any better you are dun and do not know some one is miss treating you or making fun of you and if you can get the ins to pay any thing it will be some thing like i was offered $817.00 to covered the car the house the lost income the docs and any things else that might pop up. AMERICA THE LAND OF THE FREE. free to cripple and mamba at will and to rob people of every thing they have as long as you are rich. thank you for your time fred
Name: DEBORAH L'ETOILE
Title:
Organization:
StreetAddress: 836 Fernwood Pacific Dr.
Address2:
City: Topanga
State: CA
ZipCode: 90290
Country: USA
Phone: 3104553727
FAX:
Email: msletoile@yahoo.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 12/29/2002
Time: 4:10:56 AM
MY SON SUFFERED A SEVERE TRAUMATIC BRAIN INJURY IN DECEMBER 2001. HE IS CURRENTLY LIVING AT HOME AND I AM HIS FULLTIME CAREGIVER,
Name: Mary Villalobos
Title:
Organization:
StreetAddress: 1726 Hazelwood
Address2:
City: Conroe
State: Texas
ZipCode: 77301
Country: USA
Phone: 936-441-9128
FAX:
Email: lblueangel42@yahoo.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 12/31/2002
Time: 8:35:31 PM
i
Name:
Title:
Organization:
StreetAddress:
Address2:
City:
State:
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 12/31/2002
Time: 8:36:17 PM
Name:
Title:
Organization:
StreetAddress:
Address2:
City:
State:
ZipCode:
Country:
Phone:
FAX:
Email:
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/10/2003
Time: 6:08:08 PM
Name: jane Pabst
Title:
Organization:
StreetAddress: 2501 Lazt Hollow #140B
Address2:
City: Hou
State: Tx
ZipCode: 77063
Country:
Phone: 713.952.3870
FAX:
Email: janepabst@sbcglobal.net
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/10/2003
Time: 6:10:27 PM
Name: Louisa L. Rozycki
Title:
Organization:
StreetAddress: 1668 S Dudley Ct
Address2:
City: Lakewood
State: CO
ZipCode: 80232
Country: United States
Phone: (303) 989-3135
FAX:
Email: louisalr@wideopenwest.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 1/25/2003
Time: 2:15:38 PM
Thank you for a wonderful site.
Name: Susan Vivian
Title:
Organization:
StreetAddress: 5884 Wescott Hills Way
Address2:
City: Alexandria
State: VA
ZipCode: 22315
Country:
Phone:
FAX:
Email: susan@viv3.com
URL: http://
Participating_Movement: Yes
Helping_Movement : Yes
Date: 2/11/2003
Time: 7:13:13 PM