Dear Amanda,

I am so sorry to learn of your father's injury. I know it is overwhelming.

I am an information specialist at the PRC. I can send you our new injury package of information that can give you some direction and knowledge so that you and he can make informed decisions about choosing a rehab facility, home modifications, etc.

Please let me know if you would like to receive this information as I would be happy to send it to you.


My email address is dlowich@christopherreeve.org; my phone number is (800) 539-7309 x7202.


Sincerely,
Donna 

Hey Amanda~

So sorry to hear about this. It's hard to swallow at this point, but this is a life-changer, not a life-wrecker. Nothing comes quickly at all, but in time you and your Dad will reconstruct your life according to the new realities. And as hard as it is to believe right now, most of us end up having really great, fun productive lives. 

What you need to do now is figure out what you can control and what you can't. You CAN be there everyday for your dad. You CAN help organize the house for when he comes home. You CAN ask for help from the counselors at the hospital (Help for YOU - not your Dad!). You CAN keep pestering us with questions and concerns. 

But you CANNOT control his personal recovery. You CANNOT control 'making the guy who did this to him' pay. You CANNOT control curing spinal cord injury. 

So my best advice is get busy with the CANs and dump the CANNOTs. You'll be plenty busy - Believe me!

Amanda I am so sad to hear about your dad. I have to tell you this though. You came to the right place to seek direction and assistance. Your going to have to muster up all the strength you and your family, including your dad, to pull through this one. But you can do it!!! You can Go Forward!! Let Donna send you that New Injury Information Package and don't hesitate to give her a call. I too am a spinal cord injury survivor. But I quickly found out  I couldn't do it alone. I needed help and guidance. And that's what the Reeve Foundation provides. That was 10 years ago. I am now a Family Peer Coach that's there for people when they need us to help answer questions and show support. Its a nationwide network of people that are there to guide you every step of the way. There should be information about it in the package. In the meantime we are all here to help. Your not alone. I hope all the best for your dad and you hang in there. You can do this.

Hi Amanda-

I had this same experience with my wife 8 years ago. Our lives have now changed to the point that they are the new normal. But I remember those first days. It was terribly confusing because it is a whole change to your life.

Depending on the level of the spinal cord injury (can you tell us what it was?) your father will ahve certain abilities he will retain, and others he will lose, and perhaps soem he will regain with time and therapy. Also, a lot depends on your financial state. There are a lot of advisers out ther and each case is different.

When my wife was injured I began a path of learning, and I did a lot of up front investigation to find out who and what could help. I have folders full of dead ends, and a closet full of bad equipment that worked for others but not for her. Her are some things to look into right away:

- You will not be able to care for your dad completely on your own.  If he has insurance, you can get some day care assistance. We hire a person who comes in for my wife every day, and we pay them out of pocket, and fill out all the paperwork as we are now domestic employers. You can hire an agency to do that for you, but they charge about double what you can get somebody to do it for if you are willing to do the hiring and paperwork.
- If you belong to a church, they are usually quick to jump in and help. there are folks there who are retired, or even youth groups who simply live to help others. Don't be afraid to ask. When my wife was first injured, we had a daily rotation of ladies from the church who came over to assist until we got on our feet. They did cleaning, meals, etc. When the normal sinks in, they will not last, but the temporary help is priceless while you get on your feet.
- Most states have an assistance program that helps folks who get injured in car accidents. In Texas it is called DARS, and they will provide funds to buy things and even rehabilitation services that insurance will not cover. They work with the insurance company, wheelchair vendors, etc. to make everythign come out right.
- You will need to find a good PMR doctor, and stick with them. That stands for Physical Medicine and Rehabilitation. Usually these people will find their way to your father while he is in the hospital. Be careful not to get one who simply likes to prescribe drugs. We have ejected two previous ones who had that attitude. As a result, my wife is currently drug-free except when she gets the normal illnesses.
- Get him in a starter SCI rehab facility. they will show you and prepare you for what he is going to need according to his level of injury. He will become his own encyclopedia of what has to be done so he can direct any help to avoid some of the new things he will have to deal with. They educate you for this.
- SCI patients dump a massive amount of calcium immediately after their injury. They don't know why, but it is a fact. It causes Osteoporosis, and kidney stones within the first couple of years. Be prepared for either or both. Get your father on a diet and supplements to increase bone mass, as well as in a standing frame to keep the loads on his bones. That drives calcium uptake in the bones and keeps him prepared for recovery.
- Find a good rehab center to get him into that allows use of a gymnasium. In Austin, we use one at Health Soufh that allows use of a Functional electircal Stimulation (FES) bike that keeps muscle mass up by shocking the muscles in a pattern that makes them ride a bike with their own muscles. Phenomenal for cardio workout.
- Whatever you do, keep the exercise up- that is the main thing he now needs.
- Be prepared for Skin problems (from sitting in the same spot all the time), bladder infections (unless he has bladder control he will use a catherter, and it comes with the territory). We use cream of tartar made into a tea, and have now avoided bladder inrfections for two years. It can be bought in a grocery store. KEEP ANYBODY AWAY that has a cold. the last thing a quad needs is a cold. You will learn why I say that.
- Get him out of the hsopital as soon as you can and keep him out of hospitals whenever you possibly can . Use them only for emergencies. Hospitals are pits of infestation ,a dn give infections every time you are in one. I do not allow nurses to touch my wife- I keep a caregiver ther at all times to be certain they wash before any contact. And I have sigend several "Against Medical Advice" forms to get her out of the hospital and home where we have the euqipment to care for her.
- Be prepared to lose a lot of the help who start out with good intentions. Mosat people do not realize what the involvement is and a desire to help can quickly wane when they see what is really invovled. Also be prepared to get own with your own life. You did not indicate your age, but unless you are already married, you cannot let your father's injury become yours. That is the main reason to get others involved as I have discussed.
- There will have a heavy buyrden from Insurance to get through. Not sure what Obamacare is going to do to that, but your father will soon be on Social Security and Medicare if he is not already. At his work, if he had short-term and long-term care that should cover before those kick in. Check into those.
- Also, check his life insurance policy. Many have disability clauses that pay out when a person is disabled .
- Don't forget to sit down with your auto insurance company to see what they take care of.
- Be prepared for his health insurance company to "subrogate" much of what you might receive from the auto insurance claim. Their coverage allows them to do that. They put themselves first-named on recovery of any funds to cover what they have to pay for at the hospital.
- Do not go after the other person for vengence, but DO go after their insurance to get a settlement. Get a lawyer to help with that. I don't like lawyers, but sometimes they are necessary. Oh- and jkeep those lawyers away from your doctors if you want to continue to get great medical help... just a hint. Doctors and lawyers are not a good paring.

That's a good starting point. There's a lot more. I could write a book, but simply don't have time because I work every day. Don't be afraid to ask others. This is new to all of us and technology and medical discoveries are helping more every day.

I thougth about just offering my symapthies for your position (I certainly do feel for your plight), but you have a lot of things to do. Get cracking and things will get better. Better to stay busy when these things are going on. So, I thought it best to give some technical guidance. Hope it helps.

Steve

Hi
sorry to hear that ,i dont know wether to call it a mess though.coz we have no idea what is mess or bless.consequences always says that.
just keep cool and try to show ' what has happend, is not that serious'.. focus on what you can do right now at home.. avoid bed sores by using airmat on bed plus turning him to sides every 3-4 hours and also use roho on wheelchiar.. you may sometimes lose control but you're able to get it back by saying ' God ,what can i do right now ' then do what you can.. it may seem hard at first but it wont be after just a little while.. prayers to you and dear dad..keep your hope alive if you believe that God has surrounded  you....Email: elvis1498@yahoo.com

My dear Amanda, I hope you can tell from all the replies you've gotten that you contacted the right people.  As Stephen said, if you let people know a little bit about the state your dad lives in, his insurance/work situation, it will help share planning ideas.  Stephen gave you a good starting list.  Your dad hopefully will work off the vent before he comes home.  He's only a month from his injury, and he hasn't started rehab yet.  You should make sure you have a real lawyer who understands SCI, and isn't one that found you or you found on tv.  If your dad knows a lawyer, or there's a family referral, start there.  They need to help plan for his long term, life long needs.  They also will need to help set up any settlement so that the funds will not affect any Medicaid funds he may eventually qualify for.  Because no one knows what the Affordable Care Act is exactly, it's difficult to plan for it, but if funds paid to him are set up in a Medicaid Trust, he should be cool.  Also make sure that you get set up with a Financial and Medical Power of Attorney if he didn't have a recent one done.  If he served in the military and is a vet who was honorably discharged, especially if he served during any war period like VN, Desert Storm, Desert Shield, since Sept. 11, 2001, then he is likely entitled to Veteran Benefits that help pay for medications, hospital care, in home care which may pay you to care for him under Aid and Attendance Benefits, and other money that is not deducted by Medicaid.  You should contact your county Veteran Benefits Office for help.  They will need his service number to get things started.

If home modifications are needed at your home, there are programs in most counties and cities that are reduced or free through Habitat for Humanity, or the Housing Authority.  Also some local groups like the Shriners, police/fire associations, unions and such will help with modifying homes to make them accessible.  There is a group that helps with home modification, and I'll get you a message about them if you need it later, where architects help modify the bathroom and kitchen in homes for free with community help.

Breathe deep.  Understand the first three, six and twelve months are the most intense and overwhelming.  But people here have advice, direction and suggestions.  And Amanda, how are you?  Look for a support group of caregivers in your area to talk to, it really helps.  It's all right to be scared, anxious, at a loss, confused, angry.  The law will take care of the person who hit your dad, let them.  Save your energy for yourself, your dad and your family.  You are a good daughter and you have a lot ahead of you.  Move forward, don't look back.

Hi Amanda,
I am the mother of a 24 year old son who was involved in an auto accident 18mths ago.  He too suffered a spinal cord injury - at C5.  He was in the hospital for 16 days and then Went to Brooks Rehab hospital in Jacksonville, FL.  After his neck surgery he could only shrug his shoulders - no other movement.  When he was discharged from Brooks 5 weeks later, he was wiggling 2 fingers.  I was an emotional wreck!!!  We live 3 hrs from Jacksonville and our county has no nuero rehab.  So I chose to quit my job, and temporarily move to Jacksonville.  Leaving my husband and extended family all "at home".  It has been very difficult emotionally and physically dealing with this on my own.  You have received some very good advice from everyone here.  This site is new to me but I have already found LOTS of good information.  The BIGGEST thing I can say is "take care of yourself".  If your dad is like my son - he will want ONLY YOU to take care of him.  I explained to Chris that someone else had to know how to take care of him - just in case I got sick or something else happened that might keep me from him.  So his dad has also learned all of the things required to care for him.  
I hope your dad has a good attitude about what is happening to him - that is half the battle.  Chris has had the BEST attitude in the world.  He has said from the beginning that he was just happy to be alive and that he would learn to live with whatever life had in store for him.  If you have other family around ask for their help - DON'T try to do it ALL if you don't have to. Make a job chart/ schedule!!  Ask each friend or family member to "commit" to a certain time to relieve you or to a particular job - grocery shopping, cooking, laundry etc.  This whole experience is still new to us.  I just wanted the doctors to "fix" my son, so we could go home and resume our lives!!  I was a little angry in the beginning when I realized that wasn't going to happen.  
The others are all correct - every few months things will get easier (or you just work out plans and routines that make it seem that way).  
If you want to talk more please feel free to email me: Terrie1252@gmail.com
Would like to hear more details about your situation and followup on how things are going for you.  
Oh by the way - My son now has 80-85% use of his arms and hands, has movement in his legs and feet and has "walked" 30-40 ft. using a "dash away" walker.  We have been participating in the Brooks rehab outpatient program for 16 mths - they have been amazing!!