few more questions...sorry!

What does that mean if someone that has no movement can kinda feel someone stepping on thier foot? Is it just reflex? What about when they say thier arm feels like it is just sleeping? What if they think they can feel someone touching thier hand?

Thanks

[chick]

hi tammy. is your friend saying she can feel during the doctors exam of sensation? i remember when i was first injured, that i would feel like i could still feel my legs and there definitely was (and still is) a sense of numbness, like my legs are asleep. i remember that i was absolutely sure that i could feel myself going to the bathroom, like i felt i really has to pee. i don't have sensation below my level of injury - c5/6, but it can be so difficult to differentiate what these feelings mean, especially early on. your friend may continue to regain sensation as she is still in a very acute stage(?).

you have nothing to be sorry for. you are asking questions so you can help your friend. all of this is new to both you and her family and anything that may help in your understanding so you can share this information with your friends family, i'm sure is greatly appreciated. people here are also eager to share their experience and knowledge with others so feel free to ask as many questions as you need. no question is too trivial. http://sci.rutgers.edu/forum/images/smilies/smile.gif

[SCI-Nurse]

Parathesias (abnormal feelings not founded on actual stimulation) are not uncommon in SCI. It is also not uncommon for someone to get back actual feeling early, and this is a good sign. Can you touch her without her seeing where you are touching, and tell you accurately where you are touching her (without clues)?

Also, Tammy, instead of starting a new thread for each question, it would be helpful to continue your previous thread with additional questions. This makes it easier for everyone to follow the progress of your friend and how the questions all relate to each other. The separate questions will eventually be separated and hard to find. Thanks.

(KLD)

When I want to ask a new question...do I just post a reply under my previous question?

[marmalady]

Yep, just click 'reply' on this topic.

You're being a great friend, and don't feel bad about asking questions - we've all been there! The learning curve for SCI is very high and very quick! Would be great if you could get your friend's family up on this site.

Jackie

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

What is ASIA A, B, C, and D? Does the doctor grade each patient with one of these letters?

Tammy,

I commend your efforts and wish that I had a friend like you when I was injured.

You can find an explanation of the ASIA classification by Dr. Wise Young here (http://carecure.org/forum/showthread.php?t=18205).

My friend had no movement in her diaghram so they did surgery and gave her a permanant breathing tube. How does this work? Why do they have to clean it out often? Does it hurt when they clean it?

[SCI-Nurse]

Tammy, a tracheostomy is done so that the person can use a ventilator long term. If the tube through the mouth or nose is left in long term, it can cause permanent damage to the vocal cords and throat, and can cause serious sinus infections. The tube is needed in order for her to use a ventilator. If her diaphragm does not work at all, this may be a long term need. If she should get return down the road, this tube can be removed and it will heal over.

Suctioning of lung secretions (mucous) is needed because she (probably) also has paralysis of her chest wall and stomach muscles, so she cannot cough on her own. If the secretions are not suctioned out, they accumulate and cause collapse of the lung and potentially life-threatening pneumonia. It is critical though that her nurses and respiratory therapists also work hard on finding ways to clear her secretions other than just suctioning, which is traumatic and can damage the lung. These technique should include "quad" or assisted coughing and the use of a Cough-Assist machine, usually combined with chest physical therapy and/or a vibrating vest to loosen the secretions first. Suctioning is quite uncomfortable, although usually not painful.

What is happening as far as getting her moved to a specialty SCI Center? With this information it is even more critical that this occurs. She needs to also be at a center where they can determine if she might be a candidate for a phrenic nerve pacer, or even for the newer diaphramatic stimulator that Christopher Reeve recently obtained. These are done only at specialized centers, and the sooner the better.

(KLD)

A person from Craig Rehab was supposed to be there today to evaluate her. I don't think that they take her insurance...but isn't there some way she can still go? They really want to take her to Colorado...thier 2nd choice is somewhere in Georgia. Wouldn't the girl who caused the accident have to pay for her to go? When I was visiting yesterday with her, she kept making a face and she said she was coughing. How does that work when she has no movement in her diaphragm? She said she is coughing because she has pneumonia. The other day she had a 104 temp. but they got it down and she feels much better. Does anyone know if visitors are allowed at the rehab center? Would I be allowed to take her outside?

[PB72181]

Yes it would be the insurance of the person who caused the accident that should be paying...at least that's how it worked with me. But they do put up a little bit of a fight, just like any other insurance company.

Don't piss me off or I'll run over your toes. http://sci.rutgers.edu/forum/images/smilies/tongue.gif

[betheny]

Sure you can visit her at rehab, and I hope you do! As far as taking her outside, I guess it will depend on how she feels. At first she will be dizzy when she tries to sit up, laying down w/ an sci gives you low blood pressure. We all went through this. Keep going, you're doing great...

C5/6 incomplete, injured Aug. 2000

I was wondering...will my friend ever be able to eat real food? Will she ever be able to talk without using the button thing we put on her neck to hear vibrations? If no one is with her how will she turn on the T.V.? Will she ever be able to work again? Is there anything she will be able to do?

[SCI-Nurse]

Tammy, I am glad to hear she is being evaluated by Craig...an excellent center. I am assuming the "back up" plan is for Shepherd Center in Atlanta...also an excellent choice.

I hope your friend is getting an attorney. Tell her NOT to sign or agree to any kind of insurance payout from the other driver's insurance without an attorney reviewing the settlement. I have seen many people gipped out of what they need by signing for a "big" settlement of $1-2 million, when they run through this kind of money in 1-2 years (for some) when ventilator dependent. She needs an attorney who will push the insurance company to pay NOW and also she probably will need to file a civil suit to get more than the car insurance medical coverage alone. Help her find a good personal injury attorney.

Most (but not all) people with this type of injury eventually can eat regular food, and can talk even when they have a trach and are on a ventilator. Christopher Reeve again is a good example. At Craig they will transition her to a portable wheelchair ventilator, teach her how to use an uncuffed trach, and do swallow training and evaluation.

For most people at her level of injury, an environmental control unit is ideal for use at home (or even in the hospital). An ECU will allow her to control all types of electronic equipment with voice, sip and puff, or microswitch control (such as a chin or tongue switch). Even the most basic ECU will control the hospital bed head up and down, turn on/off a TV and change channels, turn on/off a radio or fan, etc. Some have enough channels that you can lock/unlock the front door to let your PCA in, operate power drapes, run a computer, etc. etc. They are not cheap, and if her insurance balks at purchasing, an ECU is a perfect item to target for fund raising by her friends and family. If you are considering this, just be sure that the money is handled in such a way that it does not make her loose any benefits she is entitled to. One resource for this is here:

http://www.transplantfund.org/

She will be able to have visitors in rehab. Be sure that your visits do not interfere with her therapy schedule though. Check with the center about the best times to visit where you can accompany her to therapy, or where she will have free time. She should be allowed to go outdoors (most have patios, etc.) when the weather is fair, and will also be going on recreation outings with the therapeutic recreation staff. Find out if you can accompany her on these outings, but be sure to follow the therapists direction so you don't do too much for her...she needs to get out into the community and start to learn how to manage things like asking strangers for assistance, etc.

There are many things she will be able to do, but probably little of them will involve taking care of herself. She will need to become an expert on how to maintain her health and how to direct others in her care. It is unlikely that she will be able to drive, at least not with current technology. She will be able to use a computer with voice recognition. She may be able to paint or draw if this interests her. People with her injury do work, esp. if they have the education to do a job like social worker, psychologist, teacher, attorney, computer specialist, etc. etc. I have a friend with a similar injury who has a double major from a prestigeous university (he was injured at 16 and is now 40) and he owns his own business making computer accessories. Options are limited only by imagination and effort for these types of jobs.

Of course all of this assumes no further motor return, and it is too early to say yet.

(KLD)

I was wondering how could I go about doing a fundraiser. Does anyone have any ideas? Also, I was reading an article and it said that usually injuries about a C3 have to use a ventilator for the rest of thier lives. Is that right? How many times a day does the trach have to be cleaned? Is that true that when they clean it out that the person cant breathe? It has now been 18 days since the accident and no movement. Does that mean my friend is complete? Does anyone know any statistics for C2 injuries?

Thanks!

[betheny]

Tammy-
I can't help much with these questions, but in general, 18 days is far too soon to decide whether your friend's injury is complete. SCI's take a very long time for the swelling to subside. Unfortunately, it's all so dreadful that it seems even longer.

I'll see if I can find stats for a c2 and vent use. Re fundraisers, probably her hometown would be the place to do it. A theme would depend on locale. For instance, I'm told the thing to do where I live is to auction autographed OU items, with players or coach present. Keep the questions coming, you're doing great.

C5/6 incomplete, injured Aug. 2000

Craig does not accept my friends insurance. Isnt there some other way she can still go there? Shouldn't the girl that hit her be paying for it? Is it possible that they just didn't want to accept her because of her condition?

[SCI-Nurse]

Tammy, the insurance company's refusal to pay for Craig can be (and should be) appealed. I would strongly suggest that her family obtain the free book available at this website, and contact Mr. Romano's office for some free advice on how to do this type of appeal.

http://www.josephromanolaw.com/index5.html

As I said before, your friend needs an attorney who will pursue the driver who hit her, and will deal with that person's insurance as well. The family needs to do this without delay.



Craig specializes in injuries such as your friend's, so I seriously doubt that they turned her down. See if she can get into Shepherd (Atlanta) or Kessler (New Jersey) instead, but I would pursue the Craig option still.

It is too early to say what will happen with your friend's injury. She should be evaluated at Craig for a phrenic pacer, which would eliminate (usually) the ventilator. Many people (including those on this site) live at home with a ventilator long term. Some need frequent suctioning, some never need to be suctioned. It is very individual. When suctioning is done, the person does not breathe, but it should only be for about 10 seconds. When using a ventilator, most people have in-line suction devices that mean the nurse or caregiver does not need to remove the ventilator to suction. While people do not usually use these at home, they are usually used in the hospital (they reduce the risk of infection too). At home, most people remove the ventilator and "bag" the person with an Ambu bag while suctioning, so the person is again not breathing when the bag is removed to allow the suction catheter to pass. This part of suctioning such not last more than 15 seconds maximum.

(KLD)

Tammy, when my brother was injured, he also was refused admission at Shepperd center in Atlanta, but after appealing and working out finances he did go. The family will have to appeal and be tenacious.
What a great friend you are, stay with her!

Update: It has been three weeks now and my friend, Heather, is still in the hospital. They say that thier insurance said no to Craig, but they are going to still try to get her in. I am guessing that there have been people from different rehab centers coming to see her, but her insurance is being difficult. A guy from a rehab center here in Missouri is coming this week to see her. They don't want her to go there because they only do rehab or weaning of the vent--not both. The family is hoping that once they rule out all these places that the insurance will let them go to Craig. The doctors were going to see if she could breathe without the vent today, but Heather said she was scared. They are going to try again tomorrow. Why would she be scared? Is is possible that her diaphram could have started working again? Will they have to wean her if she can breathe on her own or what will they do? What happens if she can't breathe on her own. Her sister said they started to get her to talk...like they can understand her "s" and "d". I am guessing this is a whisper. How can she do this with a vent? Me and my boyfriend are coming up with many good ideas for a fundrasier for her, but we have to wait until we are home for christmas break. Has anyone put on a fundraiser that might have a few tips for me? Any advice would be really helpful!

Thanks!

[betheny]

Tammy-
Once again, I'm not much help. She's scared for them to try taking her off the vent because she's afraid she'll suffocate. What a helpless feeling, when your ability to breathe is in someone else's hands! Usually when they wean someone, they let them breathe on their own as long as possible. This will be a great effort probably, if she can even do it. Then they increase the time to build up the muscles. I don't know if they will take her off the vent to do this or just slow down the respirations on it. They did some sort of scan on my diaphragm which showed it was working partially, maybe they've done one on her. If she can't breathe on her own, they will blow air thru her trach until they get the vent hooked up again. She won't suffocate, but it terrified my roommate and still does. She's a c2 still on a vent at home, can breathe for 20 min's without it. Eventually they got a different cuff on my roommates trach which enabled her to talk. At first she talked between breaths; now she talks normally. Encourage your friend to hang tough during the weaning stuff if she can, it would be very hard but she sure needs to give it a go in my opinion. Good luck with the fundraising-Tell her to get a mean lawyer!!!!!

C5/6 incomplete, injured Aug. 2000

Tammy, you are asking really good questions! Weaning from the vent is very hard for people, both emotionally and physically. This machine has been breathing for her and it would be scarey to take that away. A respiratory therapist will be with her and she needs to be reassured that her oxygen levels will be monitored- called oxygen saturation. It is also very tiring, physically, because she has been critically injured and is weak. Other muscles that usually aren't used will have to assist her to breathe. They usually adjust the vent to see how she does with initiating breaths on her own and then test her on her own for short periods. It usually takes a while to build up the strength to go for longer periods. And would probably be put on an assistive breathing device at night to give her a rest from the work of breathing. It is amazing how weak the body becomes after traumatic injury.
We had a benefit for my brother after his accident. It was at his favorite bar/dance club. Three bands played, free. There was someone at the doorway to collect entrance fee, I think it was twenty dollars. There was an auction, with things friends had donated, that people had fun bidding for. There was a ping-pong tournament, there was dancing. A very good friend mc'd the affair and gave people an idea of costs of rehab, wheelchairs, etc. One good idea was the placing of a scrapbook at the entrance so people could write down their well wishes and thoughts, my brother really enjoyed that since he couldn't be there. Someone even set up their video camera so he could see everyone. Remember, the more fun everyone has, the more money for her benefit! We had fliers all over town, in the paper, on the radio. The bar itself made more money that night than they ever had! The benefit raised about $25,000.00, which really helped with buying a wheelchair van. Some people who didn't have funds, gave chits with a service on it- like help with modifying his home, building a ramp, bringing a meal, grocery shopping, etc. Jim's friends were certainly good friends, like you have been. We started a special bank account, so people could continue to contribute as they could, still had contributions up to 6 months later. Be sure to get her parents involved, their generation of friends will likely want to contribute also and have maybe more to contribute than college age. No offence, please, just being realistic! Good luck! Debra

[kate]

Tammy, you're a good friend. Some of us know firsthand what it feels like to have somebody like you advocating for us while we're overwhelmed--and I'm speaking now for Heather's family. When my husband got hurt, knowing that we had friends out there willing to cover our backs was HUGE.

Do her parents know about this site? It's so important to have information, and there are lots of parents here . . .

Could anyone tell me what my friend is going to need when she gets out of rehab that her insurance does not cover? Does insurance pay for ramps, wheelchairs, voice-things for the computer, etc?

[SCI-Nurse]

Tammy, this is very individual based on the specific insurance policy. If there is any plan for a suit against the other driver or for coverage under their insurance, this also needs to be taken into consideration.

Based on that, it is a rare insurance company (other than VA or worker's comp) that will pay for the following:

Van (if she plans to go to work or school, DVR may help with this, but not always)

Modifications to the home (ramping, elevators, ceiling track lifts, stair glides, bathroom modifications, addition of second exit for safety, etc.)

ECUs (environmental control units) to run a computer, dial/answer the phone, run a radio, operate bed controls, etc.

Computers and computer modifications (although as above, may be covered by DVR)

Very few insurances will cover any of the attendant care she will need at home, although she may have some time-limited (a few hours daily) initial coverage for in-home nursing care. This rarely is continued more than a few weeks after discharge from rehab though.

Most insurance will pay for a wheelchair and cushion, although they will usually try to avoid paying for the type of chair she will probably need (very expensive), and may not pay for a replacement or repairs as actually needed. They will usually pay for a portable (wheelchair mountable) ventilator, but often not for a back-up power supply and sometimes not for a back-up ventilator for the home. They will usually cover medications and supplies (except Medicare). Many insurances will not pay for bathroom equipment either (grab bars, commodes, shower chairs, raised toilet seats, etc.) Some will cover arm braces, others will not. Some will cover a back-up wheelchair (manual), some will not.

Have you heard where she is going yet? Have they appealed the Craig decision by the insurance?

Once she gets to a good SCI center, her case manager and therapists should be able to find out exactly what will and will not be covered. Then you can plan to hold some fund raising activities to address those items that are not covered. Just be sure that any fund raising is done in such a way that you do not interfere with her eligiblity for SSI, Medicaid or other need-based programs.

(KLD)

[lilsister]

Tammy, just like the nurse said-different insurances cover different things. If you have the benefit, put the money into a special account in the bank, other than her immediate family. If they have to use any Medicare for her expenses that benefit money could preclude some services. I'm hoping the family has a lawyer by now, he/she could advise on this. Obviously, the account has to be held by a trustworthy person or put into a special trust that isn't invaded by Medicare/Medicaid. Just to give you an idea..we were refused a back-up manual w/c, shower chair, any exercise related machines,any computer renovations,etc. A shower chair costs about $1500.00, so you can see that these things are costly and the benefit would help tremendously. As the family becomes more knowledgable in sci and her status evolves, they can decide what is best. Sometimes just modifying the house so she can go home is the most pressing, and getting a good wheelchair. A good rehab will steer them to what she will need.

Update: Its been a month since the accident and Heather is still in the ICU. She has not been moved because the insurance company is giving them a hard time. I guess they are fighting to get her to Craig. She got her halo removed and is now wearing a neck brace. She can eat apple sauce and little things. She can also kinda whisper words. Does anyone know why she has to wear the neck brace now? When they take the halo off does that mean her neck is stablized? Does it hurt when the halo is taken off? Also, if she is eating isn't that a good sign? Will she ever be able to eat whatever she wants? Since she is whispering does that mean there may be a possibility that she will be able to breath on her own? They did do a test to see if she could breath on her own and she cant. I am going to see her thursday or friday...so I will probably have more questions then.

Thanks!

[Wise Young]

Tammy, I assume that she is still on the ventilator. This is the reason why Heather is whispering. There is probably a leak valve on the respirator that allows air to go from the tube upward (as well as downward) and the air passing through the vocal cords produces her "voice". It can probably be adjusted to be stronger but if it is enough to communicate with, that is good.

Weaning off the ventilator is frightening because Heather has had a machine pump air in her for the past month. She will be short of breath. She should understand that it is always like that and that shortness of breath itself helps stimulate the phrenic system (the part of the nervous system that is responsible for breathing) to be stronger and produce greater activity. If she is able to get off the ventilator, this will allow her much greater flexibility in terms of places to do rehabilitation in and also greater independence. It may take several tries and many days for the weaning process. Support by family and friends is crucial during the process.

Many people on this site have been involved in fundraisers. The most important part of fundraising is communication, getting the word out to Heather's friends, family, and others who have have known her. It is very useful to have a web site that information can be placed regarding heather. It is also important to make sure that you have a good list of all the addresses, email, and telephone contact information, so that you can let people know.

Wise.

[SCI-Nurse]

Does anyone know why she has to wear the neck brace now? When they take the halo off does that mean her neck is stablized?

1 month is very quick to remove a halo. They usually stay in place for 10-12 weeks. It takes at least 3 months for the bones to heal sufficient to be strong without a brace. The other brace she is in now will probably be continued at least another 1-2 months.

Does it hurt when the halo is taken off?

It is usually not very painful since scar tissue has surrounded the halo pins. It will pull and be uncomfortable, but this goes away very quickly. It is usually done without any anesthesia or sedation. Putting the pins in can be painful, and is usually done with sedation or anesthesia.

Also, if she is eating isn't that a good sign? Will she ever be able to eat whatever she wants?

As long as she has had swallow studies to prove that she is safe to eat with her tracheostomy, this is good, although it does not indicate any neurologic return. It is better psychologically and physically to be able to eat normal foods. I would suspect that as long as she has the tracheostomy that they will have her on certain soft foods only, but down the road most people with a trach are allowed to eat all regular foods.

Since she is whispering does that mean there may be a possibility that she will be able to breath on her own? They did do a test to see if she could breath on her own and she can't.

There are several possibilities (it is difficult to tell without more information). They could be trying her on an uncuffed trach, which is what most people with chronic tracheostomies on ventilators learn to use. She could have a leaky trach balloon such as Dr. Young described, or they could be trying her on a "talking trach" or Passy-Muir valve which allows a person to talk when the balloon is deflated for short periods. Many people who cannot breathe on their own (like Christopher Reeve before his recent surgery) can talk. The biggest advantage of this is her improved ability to communicate and be in charge of her own care.

It would also be important to know what kind of "test" was done to determine she cannot breathe on her own. Simply taking her off the ventilator and seeing what happens is not a definitive test, nor is an EMG of the phrenic nerve or even fluroscopy of the diaphragm. Can you find out what test they did?

Has her family gotten an attorney yet? It sounds like she needs one. She needs to get out of ICU and into an appropriate SCI rehab program now. Delay is not appropriate and could have many adverse consequences.

(KLD)

I went to see Heather tonight. She is looking really good. She told me that it hurt really bad when they took her halo off and that she has had a non-stop headache for the past weeks. She ate a little bit of a porkchop tonight and she has been eating a few other things. Last week they were having problems with her heart. She passed out a few times and she said her heart beat 3 times in one minute. Because of this she now has a pace maker. Her mom said that everything is moving very slow with the rehab center. It is for sure that she cannot go to Denver. I am guessing the insurance declined her the second time. They are now looking at a place in philadephia. (Shriners maybe?) Does anyone know about this place? Heather was telling me that her first night in the hospital cost $50,000!!! I cannot believe the charges! She also said that her insurance wouldnt let her go to Craig b/c its 300,000 dollars to go there. That is unbelieveable! She had her nurse show me her burn on her arm tonight. The first hospital she was at put the IV in wrong or it broke--I am unsure. It caused 3rd degree burns on her arm and it is a big black spot. Her legs and feet are also twitching. What does this mean? Also, why can't she hold up her head or keep it straight without a pillow holding it up? Will she ever be able to move her neck? I am not sure what test they did to see if she could breathe on her own. I know they did a test to see if there was any movement in her diaphram and there wasn't. I think they were going to take her off the trach and see if she could breath. I am sure they have an attorney by the way Heather was talking. She said they have to do something so they can pay all the bills. I am in the process of looking for a hall that will donate a night so we can have a benefit for her. It wont be until the spring/summer because I am in school. I have talked to a friend's dad about having his band play at the benefit. I think that with everyone helping we could pull it off. One more question....if I were to start a website for Heather how would I do that? Is there a charge?

Thanks!

[Wise Young]

Tammy, Shriner's in Philadelphia is the largest center for children with spinal cord injury in the world. Randy Betz, who is the chief of staff of Shriner's at Philadelphia, is a good friend and, in my opinion, the best and most compassionate doctor that I know. If she can get into Shriner's hospital, that would be the best place for her. It is a great place.

Wise.

[SCI-Nurse]

I believe Shriner's Hospital do not take anyone over the age of 16, so I doubt this is what thy are talking about. I would suspect they are considering Magee Rehabilitation Center in Philidelphia. I would also ask about Shephard Center in Atlanta and Kessler in New Jersey, as well as RIC (rehab Insitute of Chicago). It is so critical that she go to the right center for her rehab. $300,000 sounds like a lot of money, but they would spend just as much at the wrong program (if not more) and would end up with more preventable complications in the long run that would cost them much more than this. Delaying sending her to rehab is not saving them money.

Unfortunately at her level of injury bradycardia (very slow pulse) is not uncommon, esp. with procedures such as suctioning. Have they implanted the pacemaker or is it still external? Some people get past this, while others do need the implanted pacemaker. This is not a big surgery, and is usually not even noticed by the patient after it is in place.

The attorney should be pushing the insurance company too...not just going after the person who hit her in the accident.

(KLD)

[Wise Young]

KLD, I agree. I was surprised at the mention of Shriner's. However, I know some "kids" who still get their care from Shriner's even though they are over 16, because they started there, I suppose. I also think highly of Shepard.

Tammy, has there been any consideration of Kessler? They do take ventilator-dependent patients who are age 17 or higher, I believe. If Heather's parents needs somebody to talk to about the best places, they may want to talk with Patricia Morton in our Center. She has a lot of personal experience with several of the centers. They can call my office and ask for Patricia Morton.

Wise.

Wise Young, Ph.D., M.D., Professor II & Chair
Department of Cell Biology & Neuroscience
W. M. Keck Center for Collaborative Neuroscience
Rutgers, the State University of New Jersey
604 Allison Road, Piscataway, NJ 08854-8082
tel: 732-445-2061, fax: 732-445-2061
email: young@biology.rutgers.edu

[marmalady]

Tammy, you certainly are getting the education of a lifetime! And what a great friend you're being. When my son was injured, he had good friends who stuck by him from the beginning, and I called them his 'angels'. You truly are your friend's angel, also.

No matter where your friend goes for rehab, she's going to need the pro-active support of her parents, and she herself should learn everything she can about her care and rehab. Starting that education now, will only help in the long run. If you like, we can give you links about care issues such as skin, bladder/bowel, dysreflexia and rehab issues. Just let us know. Also if you can get her parents on board here, it would be great.

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

I am having trouble with where to put the money I raise for Heather. A person that works with me made crosses that say "Every time you see this cross, please be reminded to pray for Heather" We are taking donations for them. I am also collecting stuff to sell. Do I really need to get a lawyer? I am just a kid I have no idea what I am doing. I don't want any of this money to go to the lawyer or the hospital. I want it to go for the things that Heather needs and can't get with her insurance, such as a back up vent. Everyone tells me to go to the bank and ask them, or the court house. I also hear that if I set up a Special needs trust fund I need a lawyer. WHY? I just want this to all go to Heather. I am really confused to what I am supposed to be doing. I am new to this so I could use some advice! If anyone has done this before, if you could please help me out it would be great! Thanks!

[marmalady]

Hi, Tammy - Take a deep breath - it's confusing, I know, to any of us who have been through this.

A Special Needs Trust is the only absolute way the money collected can be protected from her insurance, medicare/medicaid, or SSI. The initial costs to set one up vary from state to state, but finding a lawyer who is versed and experienced in setting up these kinds of trusts really is essential, and worth his fee, which is usually just a one time fee. The wording of the trust is very specific, and is a powerful document that will protect her money from being spent out in medical costs that would otherwise be covered by her insurance or medicaid/medicare.

That having been said, it also depends on how much money you envision you will be raising, if her family is going to donate money for her, and if there is going to be an actual insurance settlement of a large amount of money. If you're only talking a few thousand dollars, you might want to just go to a bank - and take someone with you, if you feel you don't know enough to talk with the 'banker' types. You could set up a money market account at a bank or a place like Charles Schwab - you CANNOT set it up in your friend's name, tho - it would have to be in your name or in the name of a family member.

Hope that helps a little - please feel free to ask more, if you have further questions.

Again - you are a wonderful friend!

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

Well, I plan on doing several fundraisers plus a benefit next summer. I don't know how much this will bring in, so what should I do? I can't afford a lawyer. I could put the account in my name with one of her sisters name on it right? Would this cause her sister to have to claim the money that is there under her name? Like for taxes?

[marmalady]

Yes, any monies you deposited would have to be reported as income for tax purposes.

Tammy, the lawyer who sets up the trust would be reimbursed from the monies deposited in the trust. I know, it seems a shame to 'give' money to a lawyer from the monies you've raised, but I can't stress enough to you the importance of getting the language of the trust correctly. In our case, we also had to enlist the help of the attorney to get the settlement money from the insurance company into the trust, without medicaid intervening to get what was 'due' them. Also, if there is going to be a lawsuit, the family will need an attorney for that.

I would suggest sitting down with the family and discussing all this with them. It's possible that they may have some ideas about starting a trust fund, and it will probably be a family member who becomes the 'trustee', or the person who manages the trust.

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

[SCI-Nurse]

You have to be so careful not to do anything that will result in her loosing any eligiblity for Social Security or for Medicaid. This has to be done right, or it is better not to do it. Are there any family friends who are attorneys who might help?

Another option would be to do the fund raising through this organization. They take care of all the paperwork, protect the eligibility and do this for 10% of the funds raised. Initially set up for funding transplants, but lately have added catastrophic disability to their client list:

http://www.transplantfund.org/

(KLD)

I went to the bank today and they say I can open an account (checking) under my name and put her name as the person that would get the money if something happened to me. I would not be taxed b/c it doesnt make interest. They also say I can put trust for heather on the checks or something like that. Does anyone know if this is okay? It doesnt sound like a bad idea...I will not be using Heathers ssn so it will not have to do with her. Please Help! Thanks!

[marmalady]

Hi, Tammy - What you're describing is similar to how we collected and deposited monies while we were in the process of getting the trust set up. I wouldn't use the word 'trust' unless there is actually a trust set up. And I wouldn't use her last name at all on the account.

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

I went to the bank today and opened an account under my name. I think that is the only way I could have done it. The lady at the bank said someone else may be setting a trust fund up for her so when I am done collecting I can add my funds to it. That way I wouldn't have to get a lawyer and stuff like that. I did go see Heather today. She is doing very good. She said something about looking at the rehab place in Georgia and may be getting closer. Hopefully, whatever is taking so long gets worked out soon so she can go to rehab. I can't wait to get her on here to talk to you guys. Everyone has been so nice to me! My boyfriend and I are setting up an ebay account to sell stuff to make money for her. I know it sounds funny but I made $20 selling 3 of my shirts I never wore! Some people from a local church are donating items that they do not need/want anymore. If you would like to see how that is going...go to ebay and look for 4Heather. That will probably be our selling name. If it is not I will write back and tell you the name. We want to make a website for her...so if you are like bidding and want to see where your money is going you can click on it. Does anyone know if there are places where you can get a free webpage? I do have one for school..but I won't have it much longer. I will keep everyone updated on that. (so everyone can see her pictures--i am sure the men will like that--she is really pretty) http://sci.rutgers.edu/forum/images/smilies/smile.gif

I just wanted everyone to know that Heather is leaving soon from the hospital. She is going to Georgia! She is pretty excited. She said she will be leaving this coming week or next.

[SCI-Nurse]

So, is she going to Shephard or to Warm Springs? I hope it is Shephard as this center would best fit her needs. Will you be able to visit her there?

(KLD)

She is going to the Shephard center. I am not sure I will be able to visit her. She said she is only going to be there for 4-6 weeks. Thats not very long. How will she learn everything in such a short time? If she gets any movement back is this where she will most likely get it back at?

[SCI-Nurse]

Tammy, yes that is very short for a rehabilitaton stay. With her level of injury, I would expect her to need at least 6-8 weeks of rehabilitation. This is something else that may have to be appealed to her insurance company. Shephard can help with this though.

With this development, it is very important that her family make some definate discharge plans for bringing her home. This may speed up the need for your fund raising. Home modifications may be needed right away (depending on how wheelchair accessible her home is) and she will definately need attendant care (and ideally a van with a lift and tie-downs).

Most neurologic return occurs in the first 3 months post injury, but can continue (usually at a slower rate) for 2 years or more. The therapy she will get at Shephard will not be able to make her get return, but should maximize what she has. Most important is the teaching she (and family members) will get while she is there so she can learn to maintain her health for the long run. I hope her family has identified who will be helping with her care at home, and these people can arrange to be at Shephard for sufficient training. She should be able to direct all care, but of course will not be able to demonstrate it.

Let us know how this progresses, and get her on-line here when she has learned to use a computer at Shephard.

(KLD)

[reifers]

Tammy, my son went to Shepherd Center 1/23/03 for 4 weeks and he came home much more independent than when he left. I cannot say enough good things about Shepherd. He was in the "Day Program" where he lived in an apartment across the street and the bus picked him up everyday for rehab. When he went it had been 5 months since his injury - he went to a rehab center in our state initially because I was not familiar with Shepherd. They sent him home in diapers and totally dependent. After being home a month I contacted Shepherd. I wish he had gone there in the beginning! As far as visitation, they really encourage support, and believe me Heather will need supportive people like you - there are very few that are supportive over the "long haul". You are to be commended!

Okay everyone..Heather's leaving tomorrow! After about 7-8 weeks in the ICU she finally can go somewhere that is going to help her. She will not be living in an apartment will she? What kind of program will she be in since she is on a vent? They are saying atleast 6 weeks now. Does anyone know of any discount airplane tickets or hotels for Georgia?

[betheny]

Tammy-

Try cheaptickets. com, if you can fly off hours or on a Tuesday, you can often find a deal there. Good luck-Beth

[SCI-Nurse]

Contact her case manager or social worker at Shephard. They will have a list of motels that give a discount to Shephard family members/visitors. Also check out Travelocity.com and Expedia.com for ticket prices.

I would expect that she will go first to their intensive ventilator unit, then after her evaluation will be moved into the more formal inpatient rehabiliatation program. Don't worry...they will not put her in an apartment by herself. A day program is only appropriate for someone who has already had rehab, and is either self-care or has a family member competent to do their care for them. She is not yet at this stage.

I am excited she is going. Have her join us as soon as possible. Get to know her team members, even if only by phone (she will have to give specific permission for them to share any information with you).

(KLD)

[Wise Young]

ECUjunkie, I moved your post concerning Q-control ECU to the Computer Forum (link (http://carecure.org/forum/showthread.php?t=12737)). Wise.

[This message was edited by Wise Young on 01-12-04 at 04:03 PM.]

[Chim-Chim]

I am at shepherd often. I would be happy to check on her for you?

Let me know.

Chim-Chim--I would REALLY love for you to check on her for me. I haven't been updated since she left for Shepherd last week. I have written her an email and some letters. Why do you go to Shepherd often? Do you live in Atlanta?
Thanks!!!

[Chim-Chim]

Tammy - I will check on her for you and give you an update. I will be there either sometime this week, but on Saturday for sure.

My husband was injured in 2002 and rehab'd at Shepherd. We do live in Atlanta and he still works out, swims, and has therapy at Shepherd. He is there at least 3 days a week, sometimes more!

I see her name is Heather - please feel free to give me more info -room #, maybe her parents name, etc. You can email me directly @
heidirmartin@hotmail.com

I would love to be of some help to this wonderful care cure group!

[Chim-Chim]

Heidi

[Chim-Chim]

Hi Tammy,

I met Heather and her mom yesterday. I let them know what a good friend they have in you.

I have seen so many (new) patients on a vent, so I didn't know what to expect when I went to see her. I'll tell you something - she looked GREAT. I am not just saying that to be kind, her color was wonderful, she was sitting up in her chair. I was impressed. And this was around 5:30 in the evening, after what I am sure had been a long day of therapy.

I left them my number in case they need anything while here in Atlanta. I am sure I'll bump into them again in the future.

You can write her:
Shepherd Spinal Center
(her name here)#211

2020 Peachtree Rd.
Atlanta, GA. 30309

[SCI-Nurse]

Chim-Chim, thank you for being so thoughtful and visiting Tammy's friend. I am sure you will be an invaluable resource to both of them.

(KLD)

Thank you very much for visiting Heather! So, you think she is doing pretty good? When you were there could you hear her voice? I know that they were going to have to test done to see why she didnt have a voice yet but I didnt hear what the results were.

[Chim-Chim]

You are welcome. Yes, I thought she looked great. I could tell what she was saying, but it was a whisper.

I am thinking maybe she has scar tissue or the hospital who put her trake in scratched her vocal cords. I think this is common, and hopefully will heal. Shepherd will have speech therapy for her. My husband had a hard time talking after his surgery, but he was never on a vent.

Please let me know if I can help any further. I will keep in touch. We are actually on a ski trip with the Shepherd therapudic rec. group right now, in Breckenridge. I have let the TR leader of Shepherd know about Heather, hopefully we can keep up with how she is doing.

I was wondering...how does someone deal with thier injury when they come home from rehab. Do they ever fully adjust? Without movement are there still things they can get involved with? Does anyone on here have a high injury that might be able to tell me how they deal with it? (And also tell me if they have regained any movement and how long after injury) Thanks!

[Steven Edwards]

Hi Tammy,

I have a C3 injury... coming home was a bit different, and I don't think anyone ever fully adjusts. I just learned to live with it day-by-day and see it as a temporary obstacle that will be overcome.

-Steven

[SCI-Nurse]

Tammy, there are many things that a person with a high injury can still do, even if on a ventilator. She will learn much about this at Shepherd.

I know a number of people with similar injuries who are in school or working, several with their own businesses. Some spend a lot of time on their computers. Some do volunteer work. They all go to concerts, to museums, to sports events and out to eat at restaurants with families and friends. Some participate in sports like power soccer or sailing. Several have married since their injury and have families. There is so much that a person can do with the right technologic aids and supportive families and friends.

Now is the time to start looking at what fund-raising you can participate in, with the input from the Shepherd staff regarding appropriate equipment purpose goals. A van and an ECU (environmental control unit) come most immediately to mind as technologic aids that can really help to improve the quality of life for someone with an injury such as your friends. These are rarely covered by insurance.

(KLD)

[espousal]

Tammy,

A guy I know in town has a complete C3 injury and is still very involved in many things. He's 15 years post injury. I bumped into him at the grocery store last week. He was in a hurry because he was hosting a party/seminar at his home that evening.

Pre-injury: He was one of the best all around athletes around. Excellent skiier, marathon runner, par golfer, etc. He was a doctor of dentistry.

Post-injury: He's still a doctor of dentisty. Now he runs a consulting/management company for area dental firms. Works every day and heads across the border for a gambling trip nearly every weekend.

He tells me that he spent the first couple of years post injury focused on improvement/cure, then realized that in the meantime he had to get back into productive society. He seems very well-adjusted.

I was wondering if anybody on here has ever written a letter to buisnesses asking for donations for a benefit. I am getting ready to write a letter and I am unsure of what to write.

[Wise Young]

Tammy, write it straight out. It doesn't need to be fancy. Explain who you are and why you are requesting donations. Provide them with some materials indicating that this is real and legitimate. Include your have your name and address and telephone number, so that they can contact you. Indicate what the money will be used for.

wise.

Heather has to use morse code to talk on the computer or email. Is there an easier way to do this?

[Wise Young]

Tammy, as soon as Heather can speak, she can use voice control. Until then, there are many other devices, including head mouses to press an onscreen keyboard. We have a number of people on this site who use voice-activated computer systems to use this site. I am posting this to the Computer Forum where our CareCure Computer Experts can answer this question in greater detail. Go there through this link (http://carecure.org/forum/showpost.php?p=58846) to see the answers.

Heather still does not have her voice back. Is there a reason for this?

[SCI-Nurse]

There are two possible reasons for this.

She can have damage to the actual nerved used for voice (laryngeal nerves). She also might not be tolerating using a "talking" trach or uncuffed trach tube that would allow speech (with major adjustments in the vent settings). This should have been discussed with her by her Shepherd physicians. What have they told her?

How is her rehab progressing otherwise? Does she have an anticipated discharge date and plans? Have you been able to arrange any of the fundraising you discussed?

(KLD)

She has been home for a while now. She is supposed to get her wheel chair next Monday. Her mom stays home and cares for her. She has not gotten any movement back...and its been about 4.5 months. I have done some fundraising. I had a huge yard sale with donated items. We did really well with that and plan on having another soon. The benefit is planned for Heathers b-day June 19th. Things for that are coming along very slowly. We are trying to get donations right now...which is very time consuming. Anyone would will be in the St. Louis area June 19th is more than welcome to come. Heather really wants to be there if everything works out for her. They are just waiting for her wheelchair so they can fit it with a van. Any suggestions on cheap vans?

[SCI-Nurse]

There are several good ways to find used vans...and you can save quite a bit this way as depreciation is significant the first year. Check on these resources:

1) Check with local rehabilitation centers, or the PVA chapter in St. Louis. They often know about used vans for sale.

2) Check with local adapted van vendors. Often they have clients who are selling their older vans when purchasing new ones.

3) Check out www.disableddealer.com (http://www.disableddealer.com)

4) Check out eBay motors at www.ebay.com (http://www.ebay.com) (search under "wheelchair van")

The National Veterans Wheelchair Games are in St. Louis this year, June 15-19. It would be great if you could get her to see some of these events. Spectators are admitted free. She might be most interested in meeting some of the vets who have higher level injuries and may be vent users too. Check out the Wheelchair Ralley and Power Chair Slalom as well as Power Soccer if they offer it this year. There will also be a free equipment expo on June 15th. You can get more information here:

http://www1.va.gov/vetevent/nvwg/2004/

(KLD)

[Meg1]

What type of fundraiser are you holding in June? In July we are holding our first annual fundraiser to help my brother Dennis. It will be a day of golf and dinner after.

All three of my brothers and father are avid golfers, along with many of our friends and family. The day will start with lunch for the golfers, golf, cocktails and dinner after.

We will have different contests for the golfers, sponsors for the lunch, cocktail hour and dinner. We are having auctions and raffles during dinner with items we are collecting from lots of different sources. We are collecting sports tickets, tickets to museums, clothing from local stores, wine from local stores, weeks at vacation homes donated by the owners, theater tickets, sports memorabilia, dinners from local restaurants to name a few. I am sure you are tapping all of the resources you can to make it a success. I know how hard it is to coordinate and organize, I am doing most of this right now. If you need ideas, please let me know or if you have some good ideas you would like to share on your end, I would appreciate it!

We know a lot of people who are not golfers but are coming to the dinner or are donating in leu of attending. We have created a 'brochure' for the event along with a bio of Dennis for people who may not know him or how his life has changed. If you would like to take a look at what we have done, let me know.

Much of our family lives in the Chicago area and are holding a fundraiser there also. It will be held at a local pub in June, tickets are $25 each to attend, there will be food and drinks donated by local companies, raffles for participants and hopefully fun had and money donated. This one will be much more simple than what we are planning out here, but everything will help!

So much money is needed for his daily living, changes to our parents house, the van, equipment, supplies, etc. We are so hoping it will be a success and I truly hope your event is also.

If anyone is in North Jersey July 22nd, you are welcome to attend! If you would like details, please let me know.

[woman from Europe]

What is a fundraiser? Sounds very strange to me. Please answer because I have read it many times here.

[Meg1]

A fundraiser is an event you organize and hold in hopes of raising money to help out, in our case my brother with all of the different types of bills needed to be paid.

Insurance does not come close to paying for all of the equipment needed for daily living and if you do not have quite a bit of money I think most people need help paying for 'stuff'.

There are dozens of different events you can hold to help raise money. We chose something that is of interest to my brother and many other family members and friends. Golf and a dinner are our bag!

[woman from Europe]

Thank you for the answer http://sci.rutgers.edu/forum/images/smilies/smile.gif

Here we get most of the equipment for free, as long as the doctor said it is necessery. It still not so easy, long time to wait and a lot of work to get it. And many times the doctor and the users do not agree what is necessery http://sci.rutgers.edu/forum/images/smilies/confused.gif

The benefit we are holding is a dance and dinner. A local band is going to be playing. We will also have raffels for baskets and a few silent auctions. We are still trying to get everything together. We are not having luck on food donations. It just seems like everything is moving so slowly.

[Meg1]

Tammy,

I know things can be tough to organize and get going. Have you formed a 'committee' for the event? If you can do so and give specific people specific jobs to take care of.

As far as food, have you tried local delis or bakeries? Some grocercy stores may also be of help, pizza places may be helpful also. I am sure you have tried to cover these places and it is not easy to keep going into stores to aske the same thing over and over, but in the end I hope it all works out.

Have you developed any type of flyer or brochure for the event? Sometimes it makes it easier to get donations this way. We created a brochure along with a bio of Dennis to give people an idea of who Dennis is and what he has gone through the past nine months - along with what is ahead.

Let me know if you need any help or ideas....