Looking For Info/Advice

[Salgal]

My brother was an active Air Force Major when he had a mountain bike accident last September that has left him paralyzed from the shoulders down (C3-4 - I can't find anything with an Asia coding). It's been a long haul - five weeks in an ICU in Alabama with fevers and pneumonia, being trached and getting a stomach tube, then airlifted to the V A Hospital in Cleveland, Ohio, where there is an SCI Unit. He came there with a bed sore, which is healing but sooooo slow. He had surgery to relieve the compression on his spinal cord in October and got some slight feeling back in his left arm shortly after the surgery and nothing since. He has begun to come to grips with the situation and just recently was able to get into a chair and get out of his room for the first time. I have been able to get him a voice-activated phone and recently a voice-activated computer to help fill his days. Just looking for advise on others in his situation and their experiences. He is unmarried and I plan to have him live in my home when he's released which is a ways off yet.

Sally Randall

[SCI-Nurse]

Sally, so sorry about your brother's injury, but glad that you have found this site and that he has your support in this painful rehabilitation. It is unfortunate that he got the pressure ulcer in the acute hospital. Are they talking about surgery to get it closed? Have they tried VAC therapy? How is his nutrition, weight, blood proteins, etc. right now?

He is fortunate to have the resources of a VA SCI center which will not be forced to discharge him too soon (as often occurs in the private sector). This is an important time for him and his family to learn all they can from both the rehab team and the other more experienced SCI inpatient and outpatient vets. He needs to get involved in PVA and work actively on his benefits with the PVA NSO. If he has not yet met this person, get his case manager to put you both in touch.

Has his line of duty and medical board been completed and signed off? The sooner he is discharged from the service the better so that he can get his full VA benefits. He does not have to wait for this for his vehicle benefits or HISA allowance though. Be sure to get a home evaluation immediately if not already done so you know what may need to be done to your home to make it accessible for him. I would hesitate to make major changes though, as it is likely that he would be able to live on his own eventually with attendant care once he gets his full VA benefits in place (pension and A&A, fee-basis, etc.).

Be sure they are planning on getting him an ECU for use at home that will allow him to control his hospital bed, integrate with his computer, control TV/radio/fan/lights, even unlock front door and control curtains.

Be sure that the VA vocational rehabilitation counselor is working with him. He has a lot of skills already that he could convert into meaningful work or volunteer activity. As a service connected veteran there is no financial disincentive for going back to work, so this is wide open for him.

As soon as you can, get him on-line here too. We have a number of other members who have similar injuries.

Please let us know what specific questions you might have that we can help with.

(KLD)

[Salgal]

Thanks for getting back so quickly. They have tried different things with the bed sore and surgery had started to be talked about, but it seems to be healing better now so I think that's on hold. He was temporarily retired and we turned down his retirement in order to go directly to VA so he is already getting those benefits. I have had some contact with the PVA and am awaiting the home study before I do any remodeling. I do understand there are grants available for several things for him. I plan to give him the web site address when I visit him this weekend. One question I have is I have Power of Attorney now to pay his bills; this will expire in September. Is a guardianship a better and/or long-term solution? What do most single people with his type of injury do to insure someone is able to pay their bills and take care of things that require a signature?

Sally Randall

[SCI-Nurse]

Most people with SCI manage their own financial affairs. He can renew the financial power of attorney if you want as a back-up, but there is no reason he cannot manage this himself. Guardianship is used for those who are not competent to manage their own affairs....I would not go down this road with him as it would give him the message that he is dependent and not an adult. He can manage his own affairs...for example, paying his bills on-line should be no problem at all. Being in charge of those aspects of his life that he can manage is important part of his feeling control his life. Treating him as a child or an incompetent adult could have a serious negative impact on his self esteem.

He should have gone to the VA for his care while active duty. If this was not offered, the
AF violated regulations that require active duty military personnel with SCI to be referred for care within the VA SCI system within 3 days of their injury, and does not require discharge from active duty status first.

He should be actively working with the PVA NSO. At our center they come by several times weekly and see all new injury patients within 3-5 days of admission. They are invaluable resources to be his advocate to assure he gets all the benefits to which he is entitled.

(KLD)

[This message was edited by SCI-Nurse on 05-15-04 at 04:06 PM.]

[Salgal]

Thanks. He does have a lot of his bills already on auto-payment from his checking account. I just didn't want the current Power of Attorney to expire and have him be in a bind all of a sudden. Now that he is finally able to get out of bed, things are starting to look up a little. I have given him the web address so hopefully he will log on and begin to find things that are helpful to him as well.

Sally Randall

[Salgal]

What is the Asia rating that I see people talking about?

Sally Randall

[SCI-Nurse]

ASIA is an acronym for American Spinal Injury Association, which developed the internationally used system for categorizing the level and completeness of spinal cord injury. The level is determined by a very specific way of testing key muscle strength and sensation, and the ASIA scale (A,B,C,D or E) by very specific criteria for completeness. To accurately describe the injury, you would say the level and completeness of injury (for example, C7 A, C5 D, T7 B, etc.).

You can find a more detailed explaination of this here (http://carecure.rutgers.edu/spinewire/Articles/SpinalLevels/SpinalLevels.html).

(KLD)