Reeve Foundation Paralysis Community: Active Threads

Rotator Cuff Surgery

kluebke89 — Fri, 20 Nov 2009 18:38:27 GMT

My husband is a para who needs rotator cuff surgery in his dominant arm. Right now he is in a lot of pain. We were told by the doctor that my husband is not to use/move his shoulder for 3 months following the surgery; which basically means he will be bed-ridden. We are having trouble with our insurance approving the after care. The insurance won't even consider his case until he actually has the surgery. Meanwhile, the doctor was supposed to schedule the surgery 2 weeks ago and we still have not heard back from the doctor. We believe it's because they are "running into walls" also. Meanwhile we are frustrated and just want to move forward.

Does anyone know of resources we can utilize? We live in Ohio.

Dr. Dan has been under the weather

gerthro — Mon, 16 Nov 2009 13:47:15 GMT

Dan wanted me to let you guys know that he has not been feeling well recently. He is in the hospital recovering from pneumonia. He is hoping to be back home by the middle of this week.

He sends his best, and is anxious to get back to work!

Rob

What's happening on the web!

gerthro — Tue, 30 Jun 2009 14:43:02 GMT

The Reeve online interns are starting this string. Meet Janelle and Michelle. They came up with the idea because they were running across so much information regarding the paralysis community that was above and beyond what they were expecting to find, that they asked for a place to start putting.

I'm no fool. When people went to work hard, I say, "Sure!" Here is a place for them to park info that we haven't found a place for yet, to talk about works in progress, or just add tidbits they have run across.

Feel free to comment on them and keep them honest.

Rob

2009 Holiday Gift Guide for People in Wheelchairs

gerthro — Fri, 13 Nov 2009 15:55:28 GMT

Don't be intimidated when shopping for a gift for someone in a wheelchair this holiday season. We gathered some top-notch ideas from wheelchair users and scoured all types of manufacturers for their best bets.

Now, we aren't endorsing any of the products in the gift guide, nor have we tested them, but they look like fun and we tried to provide presents for all budgets. So go ahead, take a look, unwrap our gift guide, and be the best gift giver! (And don't forget to wrap the gift too.)

www.ChristopherReeve.org/gift

Have any additions to the list. Add your own ideas here!

For instance we just got this one about wheelchair ponchos for kids and adults.

Janelle
Online Writer

Can you imagine?

Yetco — Fri, 06 Nov 2009 22:53:30 GMT

Can you Imagine

Can you imagine going to sleep and waking up in the morning and falling asleep while driving?
Can you imagine being on life support?
Can you imagine waking up in the hospital and wondering what's going on?
Can you imagine speaking out, then screaming and not hearing one little sound?
Can you imagine smacking your teeth for a month to get someone's attention?
Can you imagine, sounding out words for a month to try to communicate with friends and family?
Can you imagine being told by a nurse that you must have this tube down your nose or your life will be very complicated?
Can you imagine crying as he is telling you what to do while putting the tube down your nose?
can you imagine all of the medicine you take going through that tube in your nose because you can't take it by mouth?
Can you imagine being on a ventilator, having a machine breathe for you even though you told the nurse it's harder to breathe with that on ?
Can you imagine learning how to swallow again by taking sips of water and grape juice?
Can you imagine being able to only eat puréed food so it wouldn't go down the wrong pipe?
Can you imagine nurse is putting a catheter down your trachea to bring up thick yellow and orange flem you weren't able to cough up?
Can you imagine having 104.0 temperature and doctors not knowing why?
Can you imagine, not understanding anything about your accident and thinking you will be out of the hospital in a week and back with the basketball team working out and playing ball again?
Can you imagine, finally breaking down and crying profusely after three weeks in the hospital because you saw someone with the saddest face out of everybody who came to see you and you just knew what he was thinking?
Can you imagine nurse's performing treatments and doing it all wrong and almost causing my death (twice)?.
Can you imagine a nurse telling you that you will have a trach forever?
Can you imagine urinating at one point pure blood?
Can you imagine having a dream for a month straight that you are walking and doing everything that you were before you got hurt and then waking up and just wondering "Man "?
Can you imagine getting a standing ovation at some of the basketball games and trying to hold back tears because seeing all of those people clapping for you (Even though you didn't deserve it)touches a place in your heart that can't be felt anywhere else?
Can you imagine getting so dizzy that your vision goes completely black, and the pain is so bad that you can't lift a muscle?
Can you imagine not being able to hug your family and friends?
Can you imagine not being able to go out to certain places with your friends because of your disability?
And can you imagine not being able to play your favorite sport and every time you go to or see a game you just reminisce when you were playing and again, you just tilt back and say "Man "?

Well, there is so much more I can write but, I went through everything that is written above and just wanted to let everyone know you can do anything you set your mind to and don't let no one tell you different...
P.S.... it's a new year, New Year = New Movement

"MFP" Young E

Text Me, Email Me, FaceBook Me

Trish-411 — Sat, 14 Nov 2009 00:29:25 GMT

I’m starting to wonder if technology is replacing normal human interaction. I had an interesting experience this week. On Wednesday night at 11:30 p.m., I get a text message from my sister. Of course I’m not asleep yet, so I read it. It says “You better look at Allie’s Facebook.” Allie is our niece. I’m not really a die hard FBer more a lurker and monitor of my own kid’s FB, but once you sign up people you know from everywhere suddenly materialize. I get up and logon the computer, and her FB says she is engaged. I text back, “I have no idea what this means.” She has a serious boyfriend, but I had just talked to our brother that night, and he didn’t say a word about any engagement.

In the morning, I checked FB again. I see another niece (Allie’s cousin that is a senior in college) has now commented on the engagement. Well I can’t let this go without a comment of my own. So I make one. Then I email my brother and ask him what’s going on. In about an hour I get a phone call from my brother asking what the heck are you talking about? He has just looked at her FB and doesn’t see anything, but claims he’s on a Blackberry so he might be confused. He knows of no engagement but is going to get to work and check on his computer. In another hour he sends me an email with a screen shot of what he sees on her FB. Humm…he is seeing only a fraction of what I see. My sister, who started this whole mess with her midnight text, emails us both with a screen shot of what she sees which is the same as what I see. Apparently my niece has blocked her dad from viewing most of the “good” stuff. I hate to have to break it to him, but it appears that the cat is already out of the bag. The entire morning is a flurry of emails trying to unravel her FB. Now she is back to “in a serious relationship” and apparently her boyfriend added the engagement info to her FB. I still don’t know the whole story, but I’m pretty sure she isn’t engaged. It’s just another colossal hoax I suppose. I’m expecting to be blocked by her any day now. I think I’m going to feel a little hurt if I have to find out one of my nieces or nephews is engaged via FB. Is this the wave of the future?

Technology is great, and I certainly partake in most of it. It makes my husband’s life so much easier and allows him to communicate in ways I’m sure he couldn’t have 15 years ago. But I miss the face to face. I miss hearing a voice or looking at someone’s face and into their eyes to really understand what they are saying. Every time I hit the send button, I wonder if someone is going to misread, misunderstand, misconstrue, or inadvertently take offense to a crazy email of mine. It’s so easy to read the wrong tone into an email or FB post.

I remember growing up when you had to knock on someone’s door to talk to them. Or sit at the kitchen table and talk on the phone because your parent’s wouldn’t put a phone in your room. Or you had to actually pull into a gas station and fish a quarter out of the ashtray in your car and use a pay phone. Are we better off now because of all of our devices? Sometimes yes, but maybe sometimes no. I miss the touchy feely of a real live conversation. Maybe others don’t mind it so much, but with having a C3-C4 husband maybe I’m just starved for some touchy feely.

5 year anniversary of Christopher's death

gerthro — Tue, 25 Aug 2009 14:53:56 GMT

This October 10th it will be 5 year's since Christopher Reeve died. In memory of that, please add your thoughts here. Thank you.

Rob

She Just Don't Know

Yetco — Fri, 06 Nov 2009 23:03:25 GMT

Have u ever seen a certain female at ur school or anywhere just walkin and she just happens to catch ur eye...i feel im too grown to be actin like a lil kid..its time for me to find a real female to settle down wit..a female that can and will except me for who i am and not what people think of me....out of all the goodlookin females around....she is the one u want to talk to out of all of them...she makes u feel all warm inside and she gives u a feelin that no other female can give u...shes a mature beautiful girl..She does things that only u would laugh at and things that only u would understand or catch that noone else would..she plays sports and that is always a plus .. and she has the smile that makes ur day that was goin extra bad turn good again...When u see her just Walkin or sitting down or anyway, and u just happen to look at her and when she looks up at u she smiles at u while u smile back..This girl has everything u could want in a female..Thats all i wanted to say...And if u readin this and u feel the same way then get at me.....1....

"Young E"
"The Chosen One"

Abilities Expo 2009-2010

ratherbflyin — Tue, 10 Nov 2009 09:26:49 GMT

I was fortunate enough to attend the Abilities Expo this weekend in Atlanta. It was wonderful and so packed with information and ideas! Best of all, the Expos are free of charge for anyone wanting to attend. There were families in attendance and individuals also.

There are four Abilities Expos planned in 2010 in Los Angeles, New York Metro in NJ, Chicagoland in Schaumburg, and Houston. The Christopher and Dana Reeve Foundation had a exhibitor's booth in Atlanta.

There were workshops, performance events, and professional continuing education programs with free CEs.

It was an opportunity to meet other people with and without disabilities, to network, and even try new equipment or technology.

Go to: ' www.abilitiesexpo.com' to check it out! It's worth your time.

Mental Illness...Here take this assessment!

Trish-411 — Thu, 01 Oct 2009 21:23:34 GMT

Dan,

What do you think about those self-assessment mental health surveys? I’m not talking about the stuff on Facebook but stuff from more legitimate sources like a mental health website, a brochure that you might find in your doctor’s office or maybe one passed out from your wellness center at work. Do you see any value in these types of tools? Do they really tell you anything about yourself?

Even when you are trying to fill them out honestly, it isn’t easy. Do you feel hopeless? Sure some of the time, doesn’t everyone? How often? Every day, half of the days, occasionally? Who knows how to answer that…some days I feel hopeless only in the morning when the dog has pooped under the piano, the kids are late for school, I’m having a bad hair day, I only got 3 hours of sleep and oh yeah…I remember that my husband is paralyzed. That happens a lot, but am I hopeless all day long, probably not. Do you think you would be better off dead? Sure some of the time, doesn’t everyone? When you are in a constant battle with insurance companies, doctors, lawyers, in-laws yeah some days I wish I was dead. Are you having trouble sleeping? Yes, every single night but maybe that is because of some of the caregiving duties I have throughout the night. I really have a hard time even making a realistic self assessment. Maybe I over think the questions.

So I know you’re thinking, then why would you even take such a survey. Good question. Sometimes we are forced into such things. Let’s just say something like a “healthy lifestyle” insurance premium requires that you don’t smoke, you wear your seatbelts, have your bp checked at the wellness center yearly, submit to a Chem24 & CBC yearly (wanna see my big bruise) just to mention a few things. You get my drift….sort of Big Brotheresque I know, but sometimes you do what you gotta do to stay in compliance. I’m just hoping I don’t get reported to EAP. Any thoughts? Not about EAP...I was joking there but about these assessments.

August 4, 2007

Yetco — Fri, 06 Nov 2009 22:42:12 GMT

I am 19 years old but two years ago I felt like I was on top of the world. My whole life was going perfect. I was just coming off an amazing Junior year and my best year ever in high school. I didn't miss one day of school and I was so pumped and ready for my senior year of basketball. I was training so hard and was so ready for the season to start so I can prove so many people wrong. I also felt like I can do anything and get anything I wanted and everything was just going in the right direction for me until my near fatal day August 4, 2007. On August 4, 2007 I was in a car accident... the night before I was working at the Great American cookie store until 10 PM and when I got home it was around 11 and I'm never tired when I get home from work so, I was watching TV and then I got on the computer till 2:04 a.m. and that's when I went to sleep. I had to wake up at seven in the morning to take my cousin to work, so I only got five hours of sleep and I was extremely tired, but, I never say no. So, I got up and took her and usually I drive her there and then I drive back but this morning I was too tired so I told her to drive their and I will drive back. When I got in the driver’s seat sitting in the parking lot I asked myself, “should I go into the mall and get something to drink to wake me up or not " and I kept thinking and thinking what I should do but I was so tired I just said forget it. When I was driving back everything was going okay and I actually felt wide awake and by this time it was 7:30 in the morning. I made a right turn on Mac Hatcher road and since it was so early in the morning there were literally no cars on the road and Mac Hatcher road is just a straight line down with no turns at all. When I drive, I always drive on the left side of the road and not the right side unless I am going to turn so as I was driving down Mac Hatcher road I didn't want to hear or feel anything, so I put all the windows up so the wind wouldn't hit my face and cut the music off so I wouldn't hear the music and that was the mistake I made. So while I was driving, I thought I saw my friend's car so I texted him to see if it was him and when he wrote me back he said it wasn't him so I put my phone back down and then out of nowhere, I just fell asleep. My car drifted all the way to the right side of the road and hit a big rock that was implanted in the ground and my car flipped three times in the air and I landed in a deep ditch and the next time I woke up, I was in the hospital... The level of my spinal cord injury is C4 C5 and I am classified as a quadriplegic. Since then, I have changed a lot, in a bad way and a good way. The bad way is that I am not able to walk anymore and can't function like I used to and for the good way, I feel I have become a better person, I still have the same mind and personality like I had before the accident, I still laugh and watch TV and do everything like I did before. I just want to say thank you to everybody who has been supporting me and praying for me since.

This is my motto for everybody... keep doing what you do and don't let no one bring you down...

"Yetco"

My brother

daniasosa — Wed, 04 Nov 2009 01:14:50 GMT

I wrote this on the way back from the hospital as a way to express how I felt. The rest of my family seemed to be either in denial or just seemed to have so much more hope than me. I am devastated!
Here is my poem.

It's not supposed to happen this way. It can't be real!
He's always been stronger, faster and more agile than me.
He could jump off roofs, climb buildings, walk a tight rope and dive from the highest board. He could hit a tennis ball at lightning speeds and serve a ping pong ball so fast it made my head spin.
He could run faster, swim faster and shoot a basket from what seemed like hundred feet.
He could dance like a master with his perfect spins and amazing dips."Boy we had fun!"
Together, we sure got in alot of trouble but we always had each others back.
Together, he became an M.D. I became a D.D.S.
We got married, had kids, got busy and went our separate ways. I always felt our bond could not be broken!
He helped me become every bit of the woman I am today.
Three days ago I was awoken to the horror of learning there had been an accident.
My brother! My rock! My partner!
He may never run or swim or even be able to do the small everyday functions we take for granted everyday!
How could this happen?!
I feel sorrow so deep! I could never imagine this thought, this pain!
I want him to beat me again, at just about everything!
It cant be real!!!!!!!!

My beloved brother Dr. Raul Edward Montejo is a practicing Neourologist specializing in rehabilitative neourology and head trauma in the area of Ft. Pierce Florida for the last 20 years. He is known for his charitable heart and immense knowledge and abilities in his field. He was until recently the director of the rehab center there. He has a wonderful wife and four beautiful teenage daughters.
The devastating news last sunday October 25,2009 of his car accident has our family in disbelief and shock. We are all bound together in prayers and hope. He suffered a severe spinal cord injury at level t10 that has left him paralyzed at the waist.
He has been transfered to Jackson Memorial Hospital. Once stable he will be transfered to the Miami Project Cure for Paralysis Center.
We have been in contact with the Geron Corporation about there human trials using stem cell therapy to induce the growth of myelin by injecting oligodendrites into the site of the injury. They explained the trial has been put on hold for now.
I would like anyone who knows any information on the FDA approved stem cell trials or reasearch to contact me.

Dania

Questions for Dr. Dan - Puzzle Pieces

ratherbflyin — Tue, 24 Mar 2009 08:13:36 GMT

Dr. Dan,

I have a couple of questions for you, but please don't feel obligated to answer if you prefer to not do so. How long after your injury did you return to your practice and is your office in your home? Also, do you use voice recognition software for your writing and, if so, which product? These may seem to be random questions (they are), however, their answers provide information that is helpful as I am trying to put the puzzle pieces of my life together. This is an odd place to be at my age and I can use all of the input I am able to obtain to figure out where I'm going. I feel like kind of an outlier because of my age at injury (56) and being female. What is important to me now is entirely different than if I had been injured at an earlier age.

-----------------------------------------------------------------------------------------------------

Dr. Dan’s Response:

be happy to answer your questions. I got out of rehab in August 1980. The following month I saw a patient or two a week in my house. I think that was okay despite the fact that I felt so fragile physically and emotionally. It was about six months later that I went back to my full-time job running a drug treatment clinic in Philadelphia. But because my health was so unstable, I didn't want to jeopardize my disability insurance so I volunteered for about a year before I resumed full-time.

I use Dragon dictate naturally speaking. It's relatively inexpensive (about $200) and works really well. It does have some conflicts with AOL and Microsoft outlook, but not anything major.

Daniel Gottlieb Ph.D.

DrDanGottlieb@aol.com

www.DrDanGottlieb.com

Blog: www.philly.com/askdan

----------------------------------------------------------------------------------------------------------------------------------------

Comments from ratherbflyin:

Thank you for answering my questions. I am envious of your ability to resume your practice. Mine has been stripped away and I'm struggling to figure out "what now".

I have been totally involved with going to doctor’s appointments, physical therapy, occupational therapy, and pool therapy since my accident in December of 2005. Land PT has ended and pool therapy is winding down. Next phase is a self-directed combination of home based and pool exercises to maintain functional gains.

All of this is to explain why I’m in a questioning mode. I’m filing away answers to random questions or shared experiences as I attempt to extrapolate information that might help with construction of a new and very different life. The answers from Dr. Dan are a few more pieces of the puzzle.

I just discovered that my new laptop computer has a Microsoft voice recognition and computer function command software program loaded in the hard drive that is one of the unadvertised accessibility features. It is wireless and bluetooth compatible. Computer information, as follows:

Dell – 17 in

Studio 1737

Intel Pentium Dual CPU T3400 @ 2.16 GHz

4 GB

64 bit OS

Windows Vista Home Premium

Service Pack 1

-----------------------------------------------------------------------------------------------------

Are there others out there searching for answers to questions? Ask Dr. Dan! His answers and your comments might be just the information needed by a reader of this forum.

Feeling left behind

Dowler-Lucas — Tue, 20 Oct 2009 03:21:41 GMT

Hi,

It has been a while since I wrote anything, and last time I was waiting patiently for my adapted vehicle so I could get back to work. Well guess what I am still waiting. My brother was working with our church to help with funding to get this vehicle, by his own choosing. But after waiting and waiting I found out by someone else that he never followed up with the church and I guess it had just fell by the wayside. My counselor that I was going to see has picked up the ball and is meeting with the minister weekly and says I will be back at work very soon. Now I just found out that my stepmother brought up auto insurance with the minister and now I have to be able to provide proof of it before they will purchase anything. I have always had insurance and what would make anyone think I would drive without it is beyond me. All of my family, besides my kids, have been on 2 vacations all together. One to Palm Springs, and one to the UP of Michigan, and many other outings that I of course was not even thought of since I guess it would be too difficult and I would be a bother with my wheelchair. We use to do a lot of things as a group and now they still do just minus myself and my kids. I almost feel like they want me to be stuck in our apartment and not to be able to venture out and live again. I guess it feels like I didn't survive my accident, since I don't seem to matter to them anymore. I do not have any health insurance right now due to having a very high spend down to get medicaid. If I paid it I could not pay my rent. Getting back to work at the very least I could do the buy in medicaid and be covered again. There is so just much resting on getting transportation I don't understand why so many road blocks are being put in my way by people who are suppose to be my loving family. Has this happened to anyone else, and any ideas what makes this kind of thing happen?
I think even when I am back at work, and have transportation, my relationship with them can never be the same. Aren't your family suppose to be there for you through thick and thin?
Thanks for listening!

Thanx!

Tor77 — Thu, 29 Oct 2009 16:43:55 GMT

I just want to take the time to say thank you for all the useful information that you guys provide in the website!

Awesome job:)

Sincerely,
Hector Marquez

Olga Kleinertz

jsher11785 — Sun, 25 Oct 2009 14:52:10 GMT

My mother has been paralyzed since April 4th..She had so much life to live and now no quality of life..I dont know were to begin..she isnt getting any therapy she needs to give her a chance..insurance wont cover it..people in the medical field have been mean and insensitive we feel we are so alone through all this...I try to excersise her legs each day I know thats something but its not enough..Im so frustrated and saddened by the lack of compassion from doctors and nurses..We have her back in her own home but it just seems she is just waisting away with depression and asking why me...I have no life..we cant get her what she needs..can I fund raise for her? Any suggestions? I want her to have a chance to get strong and maybe she will regain her ability to walk again...theres always hope...We all need a purpose to serve through all this to be advocates for the paralyzed and to speak out to hospitals and doctors who are not aware of the dangers that can arise from being paralyzed such as AD which they are NOT familiar with and my mother needs to relate to people who understand what she is going through because they are dealing with the same thing...I couldnt possibly know how she truly feels although i feel like taking care of her I am living part of that life...its so sad..we need to turn it into a positive if at all positive..

Judy

jsher11785@aol.com

Help finding assistance

sherr1975 — Mon, 26 Oct 2009 18:31:06 GMT

I was injured 18 years ago c5-6 at the age of 15, I'm 34 now and have been given the opportunity to join an outpatient program in Houston (TIRR). PROBLEM! I live in San Antonio 4 hrs distance, and can't afford the travel and lodging. Can anyone help me find a way to get assistance?

Hi Dr. Dan From a quad of 34 years

WadeStinson — Wed, 21 Oct 2009 19:35:10 GMT

Hi Dr. Dan,

My name is Wade Stinson in Troy, Alabama. I have been a quadriplegic for 34 years after a diving accident at seventeen years of age. I have just completed my autobiography recounting my life---accident, recovery, and adjustments living as a quadriplegic. I was an English teacher and identified with the tragedies too often associated with the results of reckless youth. One of the objectives of my book is to warn both young and old of the consequences of careless and misguided acts.

I would appreciate it if you would consider mentioning my book. The title is, BETWEEN GRIEF AND NOTHING by Wade Stinson and it is available at amazon.com barnesandnoble.com and my personal website http://betweengriefandnothing.com

I apologize for the bother but I believe I have accomplished a worthy attempt at portraying the emotional and physical dilemma of paralysis along with the process of adjustment and productive living as a paralysis victim.

Thank you,

Wade Stinson

724 C.R.204

Troy, Al. 36079

phone 334-897-5698

New Book on the Tragedy of Paralysis

WadeStinson — Wed, 21 Oct 2009 18:49:40 GMT

Hi NSCIA,

Hi, my name is Wade Stinson in Troy, Alabama. I have been a quadriplegic for 34 years after a diving accident at seventeen years of age. I have just completed my autobiography recounting my life---accident, recovery, and adjustments living as a quadriplegic. I was an English teacher and identified with the tragedies too often associated with the results of reckless youth. One of the objectives of my book is to warn both young and old of the consequences of careless and misguided acts.

I would appreciate it if you would consider my book. The title is, BETWEEN GRIEF AND NOTHING by Wade Stinson and it is available at amazon.com barnesandnoble.com and my personal website http://betweengriefandnothing.com

Thank you,

Wade Stinson

724 C.R.204

Troy, Al. 36079

phone 334-897-5698

A book about being a quadriplegic

janiegolfs — Fri, 09 Oct 2009 15:18:40 GMT

Dear Dr. Gottlieb- a good friend has written her story. She has been paralyzed for ten years after a shooting and was not expected to live more than a few days. It is a moving story and she is looking for help in how to possibly get it published. Any ideas?

Thanks,
Jane

Hero Inside: Road Trip

gerthro — Thu, 28 May 2009 18:03:24 GMT

Ian Tyson works as a high school motivational speaker and this fall he is driving across Canada to share his message and raise money for the Reeve Foundation. But that is not all we are getting! Along the way, Ian will be blogging and posting videos from his travels!

He is calling it, “Hero Inside: Road Trip," going from St. John’s Newfoundland to Victoria British Columbia, visiting 28 schools in 28 days. He is speaking in every province (averaging 2 schools a day), and in some cases multiple days in the same province.

You can tell by the photo that Ian is a Superman fan and, even more so, a Christopher Reeve fan. He is hoping to raise $20,000 for the Foundation during this trip. You can help out by going to his fundraising page and making a contribution.

Watch this space for more from Ian throughout the summer. The tour starts September 10th.

Rob

Spinal Cord Injury Education Survey

scamalier — Tue, 06 Oct 2009 17:38:55 GMT

To Whom It May Concern:

I am currently a third year student in the Doctorate of Physical Therapy program at Boston University- Sargent College of Health and Rehabilitation Sciences and in the process of completing my practicum project. I have chosen to develop an educational manual for patients with spinal cord injury for use in an acute rehab setting. It is my hope that this manual will be a useful tool for patients in the future.

Currently I am in the process of researching information regarding the current educational practice for spinal cord injury in acute rehab settings. I feel that there is no better resource for accurate and honest feedback and suggestions for education regarding spinal cord injury than you, the consumer.

A short 12 question survey is listed below. If you would be willing to complete the survey you can send responses to the e-mail listed below, or respond to this post. Thank you in advance for your help.

Sincerely,
Susanna Camalier
scamalier@gmail.com

Spinal Cord Injury Education Survey: Consumers

1. Time post injury:

2. Level of injury: (e.g. C4, etc)

3. Complete vs. Incomplete:

4. Traumatic vs. Non-traumatic:

5. Main mode of mobility (e.g. power w/c, manual w/c, use of an assistive device, ambulatory):

6. Did you complete an acute rehabilitation stay following your injury?

Length of acute rehabilitation stay, if completed:

7. Please list all services that you received during your acute rehab stay: (e.g. PT, OT, Speech, etc.)

8. What educational materials were used during your stay in acute rehab? (e.g. ‘Yes You Can’ manual, videos, handouts, etc.)

What do you feel was helpful about the provided educational materials?

What do you feel could be improved about the provided educational materials?

9. What topics do you feel are most important to cover during an acute rehab stay, and why?

10. Were there topics that you were interested in learning about that were not covered during spinal cord injury education?

11. What type of learning format do you prefer? (e.g. pictures, charts, diagrams, lists, descriptions, etc.)

12. Do you have any other suggestions or comments?

Leg Spasms Getting Worse

myscott1959 — Sat, 03 Oct 2009 04:47:49 GMT

This December 7th, 2009 my son will then be paralyzed 2 years from an auto accident. He
is 23 years old now and paralyzed from T7 down. He takes Neurontin and Baclofen daily for the leg spasms and for the past month they have gotten so bad it keeps him awake at night and the spasms rock his entire body. Can anyone tell me if they have experienced this and what may be the cause. We are going to get him an appointment with a doctor soon. I'm very worried about this.
Mom

Game Controls

Baja1969 — Thu, 01 Oct 2009 22:08:39 GMT

im a c2- c3 quad and was wondering what kind of game controllers are out there. i have very little head movement. are there any options?

thank you thomas

Us vs. Them

Trish-411 — Mon, 07 Sep 2009 23:58:08 GMT

Warning: Caregiving rant about to be served up.

I was really distressed this week reading a dialog on another disability site and then when my husband seemed to support the same mentality. YIKES! The dialog was started by a wife and mother of 2 whose husband suffered a C5-C6 SCI 9 months ago. She posted in a caregiving forum stating that she didn’t feel the same about her husband. She no longer felt like a wife or lover but a friend and caregiver. Although she stated that she still loved her husband, she wasn’t sure she could stay and she felt terribly guilty about her thoughts. Immediately she was jumped on by the SCI population. This particular scenario happens every single time a post like this comes up. It happened to me 2 years ago on this same site, and I stopped posting there as did many of the other caregivers. Here is a sampling of some of the comments she received.

"I appreciate caregivers as much as anyone but I do not believe an AB knows how it feels to be SCI."

"My empathy is with her husband. What does she expect anyone to say...you’re right honey, taking care of a gimp is horrible and you deserve more."

"Do him a favor and get your a** out of his life. He is the one who got hurt. Are you just sticking around until he gets the money? What a shallow woman you are."

"What is your disability, nurse?"

"Your job is to keep your family together and keep him healthy."

Over the last couple of weeks we have talked about a great longing to be understood; a need to be with your clan of sameness. As a caregivers, I sometimes feel like so many folks don’t think we need this or deserve support from one another. Comments like the ones above keep many caregivers silent. It always feels like us vs. them, even at home sometimes.

Here’s where my husband comes into all of this. I recently found out that I need surgery in the next few weeks. It is nearly impossible for me to be out of commission for even one day, but I need to do this in order to perhaps avoid major surgery down the road. So now I feel the whole burden is on me to get everyone taken care of so I can get this done. I asked one of my husband’s nurses if he would come that evening and take care of my husband and stay over night so at least I had my first night free of caregiving. Guess what, my husband told him we didn’t need him. I’m in total shock by my husband’s comments. I think my husband actually expects me to take care of him the day I have surgery. We have a nurse that day until 3:30 p.m. and that’s it. He said he would get one of his sister’s to come over and help later that night. Help is the operative word here. They basically need my help to help him since their skills with his needs are limited. Plus who is making dinner for him and the kids? Who is feeding him? Who’s doing the dishes? I must assume that he thinks it’s me.

His attitude toward this hurts me beyond belief. Am I not worthy enough to have surgery on myself? Is my health unimportant to him? I have spent the last 7 years of my life devoted to his health, and I don’t deserve one day for myself? That is how it feels. I’m not asking him to help me in any way that day or beyond. I’m just asking to have the right to not help him for maybe 1 or 2 days with his blessing. I believe that my husband subscribes to the comments made to our original lady; my job is to keep the family together and keep him healthy at all costs.

Does a disability relieve a spouse of their concern for their AB spouse? Should an AB spouse not seek medical care of her own since her husband is a whole lot worse off? Where does this attitude like my husband’s and the others quoted come from? Help me understand. My husband wasn’t at all like this 7 years ago. We were devoted to each other. Now what has happened? I’m about to cancel my surgery because I guess I’m not worthy in his eyes. I am, but logistically it looks impossible without his support. Us vs. them, but there is never a winner.