Introductions

[martha]

I thought maybe we could get this forum rolling if those of us who are caregivers or family of SCI introduced ourselves and our situations to each other. I'm the sole caregiver for my husband who is a T-3 complete, post 5 months. Anyone else out there? http://sci.rutgers.edu/forum/images/smilies/smile.gif

martha

[KDK513]

Hi Martha, I am also sole caregiver for my husband who had a hemorrhage at the T4 level on December 23, 1999. Kathy

[Patty]

Hi,
I am Tim, Patty's husband.
She has a t-10 SCI and allows me to be her care giver on occasion. Patty is 10 years post injury, we have been married for 3 years.
Tim

[Sci Mom]

I'm Vicky, the mother of a T11/T12 daughter [age 20, which I just cannot believe, but I'm working on it!!] Brianna was injured in a car accident two days before spring break in her senior year of high school (3-31-99). I'm the sole caregiver now; she had an aide for just over a year, which was a mixed blessing.

[BJ]

I am the care giver for my husband, he has a c5/6 injury, we've been together 20 years, he is 28 years post.

He works full time, I did too til I got laid off. Have to admit, it's kind of nice to have a little time.

[jjs]

I am the caregiver for my husband, Jeff. He was injured in an auto accident on May 6, 1999. He is a C5 incomplete. Jeff gets himself ready in the morning, but has an aide come in the mornings to help with showers (we do not have an accessible bathroom) and to drive him to therapy. The remainder of his care is up to me. It's hard sometimes working full time, taking care of house and taking care of him, but I wouldn't give him up for anything.

[Lindsay]

Hi my name is Lindsay Edwards. My husband is a C-5 Quad. We have been married now 1 year 3 months. He is almost 8 years post injury.

[marmalady]

Hi, everyone, I'm an 'SCI-mom' too, of a 24 year old C4/5 son, who is almost at 3 years from his injury. I'm so glad this forum is available for us to share our experiences; thank you once again, Dr. Young! I think we all have so much to share with each other.

I read the thread about 'what is too much help'; subject is very much on the table for us right now! I got some good insights, and although we've started practicing 'tough love', it was a great reinforcement to continue!

Let's keep this forum really alive - it only works if we all contribute; even tho we may be on duty 24-7! http://sci.rutgers.edu/forum/images/smilies/smile.gif

[musik0102]

Hi
I am Bethany. My boyfriend is a T4 incomplete T5 complete. His accident was in the early 80's and involved a motorcycle. He is amazingly very independent and takes care of himself. Which allows me to focus on all the other things I can do to make his life easier.

[M.Elston]

Hi Everyone,

I'm Marci. Im the mom to my lovely L1-3 incomplete nearly 15 year old daughter. (surgical accident, 12-13-00) She walks, but has much sensory, B&B troubles. Oh, and she is the principal oboe in the Sangamon Valley Youth Symphony...and homeschooled (Before and since the accident)

Good to meet you all.

M.Elston SCI Mom to 15YO incomplete L2-3

[tvance]

Hello
I have a 21 yr.old son who is c/5 complete 5 yrs. post diving accident. My son is 6'4" tall so our days are always a challenge. In the blink of an eye we went from looking into colleges with good athletic programs to ADA programs. He has a great attitude, that really helps get through the tough times. I hope through this forum we can share thoughts and ideas that ultimately benefit ourselves and the people we care for.

[Obieone]

Happy to join the company here! Ditto on the thanks to Dr.Young!!!!!!

My husband was hurt cutting wood May '98 and is T5 complete. He is 54 years old and is a real mans man. He is pretty much independant with the usual every day stuff, but I have often wondered how it would go if I disappeared for a week leaving him to fend for himself completely . . . I don't think it could happen! Or could it????

[karla]

Hi there! My husbaand ia T-4, 4yrs. post. We have been married for a year. We have learned a lot from each other and continue to grow. His attitiude and sense of humor is awesome and he si THE love of my life!!!

[Rbyrd2531]

Hi Martha,
we have already chatted, but here is my info for others.

I am the caregiver for my life partner, Steve. He was injured in August of 1999. He sustained a SCI (T-3/4)and a TBI as a result of the accident.
After initial hospital visit of about 6.5 months, he went on to TIRR for his inpatient rehab. Don't get me started on TIRR Hospital:)

He is about to complete a series of PT at TIRR outpatient and then possibly go on to the Challange Program for brain injuries.

We spend our time combing enjoying life and working on therapy and advocating for his medical care.

I have decided that I will give a standing ovation to our current President only if he amends his decision on stem cells. But it doesn't mean that we don't grieve for our fallen American brothers and sisters.

Russ Byrd

[Quadrant]

My son is 3 year post injury C5/C6 requiring very little care at this point. He needs some help dressing but handles his personal care himself now, it was much different when he first came home. My wife and I put in some tough days back then, not to mention what he was going through.

He is back to school doing very well and soon will be driving on his own.

It does get better!

[msks]

Hi, I'm Mandy. I am also the sole care provider for my husband. He is 15 years post. C-5 from a truck wreck when he was 17. We have been married for about 1 1/2 years.

[mccc2]

Hi I'm new to this site and a wife of sci. I think it is truely awesome to have this forum to go to share information and experiences. My husband is C3, vent dependent, 5 months post, he is still at a rehab that isn't SCI - what a nightmare. I'm hoping to connect with a support group in my area but haven't had much success yet.

There is so much information that we need about dealing with sci, financial resources, home modifications, etc, Our goal is to go home and continue our life together.

Would love to connect with others who would be willing to share information with me about sci and steps necessary to go home.

[AliceM]

Hello Caregivers,

This forum has helped me immensely. I am very appreciative that I can read about the feelings and life experiences of SCI individuals and their caregivers.

My 26 year old son's two year anniversary is today. He is a T3 and T11 incomplete SCI patient with harrington rods aligning his spine. He is personally independent, although, I take care of the garden, shopping etc. Our biggest challenge is the constant pain that he endures and the negative impact on his life. If he could get past the pain, I remain hopeful he could start to participate in wheel chair basketball or other sports.

In the last three weeks he started taking an anti-depressant, began attending a pain clinic, started taking 4-AP, and taking acupunture treatments. I hope with all my heart this help relief the pain.

Thank you for all being here.

Take Care, Alice

[joseph]

My name is Joseph, My son Justin is C4,C5, 23 years old almost 3 years post injury. He's alot more adjusted to this then I am.Being a caregiver has its rewards but I can't think of to many accept it's brought me closer to my son. I thought we were close before but this is rediculous. Just kidding!Next phase for us is getting him more independent. I think our largest task to date.

[cheesecake]

I can connect you with support in the Boston area, I just need to be able to contact you. If anyone here has had direct contact with mcc2, please forward on this email.
Thanks

[espousal]

Howdy all,

Just wanted to take the opportunity to introduce myself. I hope this is the right place. Although I've read quite a bit of Dr. Young's prolific writing in the past year, I just stumbled across this site.

Hopefully I can learn from all of you and perhaps offer my perspective on pertinent topics as well.

Caregiver is the wrong term for me as my wife is nearly 100% independent. We're both very new at this, one year post injury, C6/7 incomplete ASIA C. Still, my role and interest in talking to you all most closely meets the caregiver category.

Anyway, pleased to met you and look forward to reading more of your thoughts.

[marmalady]

HI, espousal, and welcome. Please feel free to join in any of the fracas or discussions on any of the forums!

I'm trying to get some dialogue going for our dads and husbands, I hope you'll join in. Please go to the topic (http://carecure.org/forum/showthread.php?t=10735) here.

_____________
Tough times don't last - tough people do.

[marie2]

Hi, my name is Marie, my husband's injury is c-5,6 complete, asia a. he is 32 years post and we have been married 27 years. I was the primary caregiver but now our son gets him up and puts him in bed(I am one year post spinal fusion S1 L5). I do the personal care. We split the life chores: i do the house stuff and he (my husband) does the bills, thank God for the internet and bill payer~I hate paper work! We both entertain the grandkids. No pets.

[This message was edited by Marie2 on 12-23-03 at 06:09 PM.]

[LauraD]

Hello to all!!

I am mom to Heather, age 11, T-12, 3 years post. She also had right arm compartment syndrome that affected the use of her right hand. She is getting more independent all the time. We do still help her some with dressing as she still has some trouble with that sometimes. She still rides her horse and 4 wheeler. Excellent student and loves to read. My hubby is a great help with caring for her and her 14 year old brother is great too when he likes her. Sibling rivalry!! http://sci.rutgers.edu/forum/images/smilies/tongue.gif

I work full time as a secretary at a feed mill. I usually put in about 55 hours a week. I think I am nuts for tackling that job sometimes!! http://sci.rutgers.edu/forum/images/smilies/wink.gif

[marmalady]

Hello, Maria, and welcome. What a lot of experience you must have! We welcome you to share if you wish, or just join in!

LauraD - New welcome to an 'old' member!

_____________
Tough times don't last - tough people do.

[marie2]

Thank you Marmalady, I am really happy that I found this wonderful community. I have learned a lot in just the short time I have been reading the posts here. The people who post here have impressed me with their courage and their great spirit.

[Obieone]

Just thought I'd bump this up in case there are some newbies lurking http://sci.rutgers.edu/forum/images/smilies/biggrin.gif ....... Welcome if there is !!!

Obieone http://sci.rutgers.edu/forum/images/smilies/cool.gif

[350zc6c7]

I am the primary care giver to my fiance. We were in a single car accident on July 12 2003. She is a c5/c6 complete. She is 26. I also have an eight year old son that lives with us most of the week. I think I take a lot of time away from him because I am busy with her. So far he has been o.k. with the situation. We just bought a house so hopefully the will be some kids his age in the neiborhood that he can play with.

[Belle]

One year after my husband's accident, I'd almost hate to call myself a caregiver because he is nearly 100% independent. He is a T8 complete para, he was hit from behind by a semi while stopped in construction traffic. Accident date 7/14/03, so we are approaching the one year anniversary. Speaking of anniversaries, we had been engaged two weeks at the time of the accident and we got married in January 2004.

[Obieone]

Well I'm so glad I bumped this thread up .... and welcome Belle and 350 ...... sorry you had to find us but you will be very glad you did! CareCure is a wealth of SCI info and support. I found it in its infancy the year my husband Bill was injured and its been an integral part of my life ever since. Even if you "lurk" until you're comfortable to participate with questions ... it serves it purpose!

I'm like you Belle - my spouse is T5 complete and pretty much independant. I suppose I'm more of his advocate than his caregiver but he has had health issues the last year and I was most definitely his caregiver during that time! We are also "alittle" http://sci.rutgers.edu/forum/images/smilies/eek.gif older than some and certainly age plays a big part in this!

Be sure and visit the Family forum 350 I am sure you will find issues of concern there that will be helpful to you!


Obieone http://sci.rutgers.edu/forum/images/smilies/cool.gif

[marie2]

Welcome everyone! I have decided I am a butler/factotum/valet! My husband is a c5/6, 33 years post and we have been married 28 years. If I am a caregiver in any way it is because we like living alone so I guess we are empty nesters too!

"We only become what we are by the radical and deep-seated refusal of that which others have made of us."~~Sartre

[kate]

I second and third the welcome, 350 and Belle. Thanks for chiming in! Any other quiet types out there?

[darthe]

Hi everyone
I am caregiver for my son Chris who broke his neck two and a half years ago. We live together and have never found any caregiver help. A bad experience left us self reliant. It is also nice not having a stranger coming into the house all the time. I don't post much but the emotional support I have gotten by starting my day by touching in with all of your lives has helped me a lot.

Hey Martha, wow, only 5 months. My heart goes out to you.
Darthe

Music, to create harmony, must investigate discord. Plutarch

[kate]

Thank you, Darthe. Can I ask how old your son is? And how and when you found us? It's wonderful to have a new voice!

[Rae Rae]

Welcome Martha

Sorry you had to meet us under such circumstances but we'll help and give support as much as we can. My name is Amber, my fiancee is a T-4 complete. we met a year ago and we are to be married on October 2nd. He's very independant but i try and help as much as possible. Keep you head up and remember god will never give you something you can't handle, may be a challenge but you will get through it. Your family is in my prayers