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Thread: Uncle With New SCI - I'm Clueless

  1. #1
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    Uncle With New SCI - I'm Clueless

    I've been looking this site over for the past hour or so and I'm simply amazed. I'm so glad I've stumbled onto this and look forward to finding some much needed information.

    I live in So California and my uncle lives in Wisconsin. In mid-August 2008, he woke up and discovered he could not get out of bed. Long story short, it was discovered he had a staph infection in his spine and after completing emergency surgery (twice), doctors have stated he will most likely never walk again. He has been in the hospital and rehab since then and is scheduled to come home next Wednesday.

    My uncle is single and has no children (he is 53 yrs old) and was recently diagnosed as diabetic. He has one sister and one niece living in the same small, rural town as he does. The niece has stated she really doesn't want to help, and his sister has a tendency to demand things be done her way and is treating my uncle as if he has lost his mind in addition to the use of his legs.

    I feel so helpless being 2400 miles away! I've done research on benefits he might qualify for, but whether my aunt takes this seriously is entirely different matter. Does anyone have advice or suggestions about what I can do long distance? If I could, I would seriously consider taking time from work to help out but I just can't at this time.

    Thanks!

  2. #2
    Glad you are looking out for your brother..You will find this site very helpful. Anything you are wanting to know you will most likely find here.

    At what level does your Uncle lose function at? Any bladder or bowel control?
    Life is like a box of chocolates, you never know what you're gonna get.

  3. #3
    Good job finding us. Since you aree so far away, best bet may be to get your uncle to Carecure?

  4. #4
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    Thanks for the quick replies!

    I'm not sure about exact location of the spine, but my uncle says he can't feel anything from the bellybutton down. So, no bladder or bowel control. He has learned to use a catheter (not sure about the spelling), and he is currently working on the bowel. My mother (it's her brother and she also lives in California) and I were getting very concerned about how this was progressing, but after reading through the posts here I am much more at ease.

    I really do think these forums could provide quite a bit of help to him, but unbelievably he does not own a computer! I have done some research, and have found out that he can get computer equipment for low cost, so perhaps he and I can chat about that. I really think he could find some great resources online!

  5. #5
    Is your uncle a military veteran by any chance?

    Does he have insurance?

    Was he employed?

    Can he get more outpatient therapy once he is discharged from rehab? Where is he doing his rehab???

    With a paraplegic injury he should ultimately be totally independent. Outpatient therapy may be helpful, and if his insurance can fund it or (less desireable) home health therapy, and perhaps initially some nursing home care until he is fully independent, that would be one option. Another would be for him to move to CA, but that may be a problem if he is employed or has to use Medicaid for his health care.

    Make sure that someone has helped him to apply for SSDI. The rehab social worker should have done this already.

    Is his home wheelchair accessible, or can it be made so?

    It would be unusual for a spinal cord abscess to reoccur, as long as the original abscess and source of infection were drained and treated. Diabetics often get these abscesses related to diabetic foot ulcers. Is that the case for him?

    Please come back and ask questions. We can help.

    (KLD)

  6. #6
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    Quote Originally Posted by SCI-Nurse View Post
    Is your uncle a military veteran by any chance?

    Does he have insurance?

    Was he employed?

    Can he get more outpatient therapy once he is discharged from rehab? Where is he doing his rehab???

    With a paraplegic injury he should ultimately be totally independent. Outpatient therapy may be helpful, and if his insurance can fund it or (less desireable) home health therapy, and perhaps initially some nursing home care until he is fully independent, that would be one option. Another would be for him to move to CA, but that may be a problem if he is employed or has to use Medicaid for his health care.

    Make sure that someone has helped him to apply for SSDI. The rehab social worker should have done this already.

    Is his home wheelchair accessible, or can it be made so?

    It would be unusual for a spinal cord abscess to reoccur, as long as the original abscess and source of infection were drained and treated. Diabetics often get these abscesses related to diabetic foot ulcers. Is that the case for him?

    Please come back and ask questions. We can help.

    (KLD)

    Hi and thanks for responding!

    He is a vetran, and I know that there are individuals at the hospital that are helping him to investigate all the options open to him with Vetran's benefits and the VA, so I haven't done much research with that.

    My uncle does have insurance, thankfully. His employer has generously continued to pay his premiums and keep him insured. He is technically on a medical leave of absence from his job. Returning to his employment is questionable, as he installed garage doors. It's my hope that his employer might be open to finding some other way to employ him once he is able to return to work. But right now his health is his primary concern.

    I believe he can get outpatient rehab when he is discharged. I have looked up different programs provided by the state and there seems to be things he could be eligible for. He lives in a fairly small town, so I'm not sure what is close but the county in which he lives does have a Health Department that I've located that he can connect with to make an appointment with for more information. He is currently doing his rehab in Green Bay, WI.

    As far as his ultimate independence, this is what gets me irritated at my aunt who lives in WI. She has this impression that my uncle is going to be completely dependent on other people for the rest of his life, she doesn't "get" how he will ever be able to provide for himself or be self-sufficient. For example, he has talked of eventually modifying his truck so he will be able to drive one day. She doesn't understand how some one who doesn't have the use of their legs can possibly drive a car. She is afraid she is going to have to be a full time caregiver. My uncle is a fairly self-reliant guy and somewhat intelligent. I know he can get through this. He's going to need some help right now, of course, but he'll survive. I know he will.

    I doubt he'd ever consider moving to CA. He likes WI, his home is there, it's where he feels comfortable. I'd certainly welcome him, but I know he'd be a fish out of water.

    Yes, I know that he has already applied for SSDI. I believe he is to begin receiving benefits in March 2009. Just seems so far away.

    His home was not accessible. But some of the staff from rehab made a visit with him to the home and made an assessment of what needed to be done. My uncle is a bit resistent (I think a bit of it might be denial - it would be with me!), but his employer has actually taken on the task of making the home accessible and is currently working on that now.

    He told us he had a pain in back for several months. The doctor would only give him some pain meds for it. Supposedly nothing else until he woke up one Sunday morning and could not get out of bed. When he was taken to the hospital, the doctors stated the situation was beyond the technology they had, and transferred him to Green Bay. There they did emergency surgery to drain the abcess. They had to do it twice, and now it appears to be under control. There has been some speculation now that he has been re-using his syringes, however. I'm not certain this caused the abcess, though, and I'm not sure if the doctors are aware of this concern.

    The doctor and therapists have scheduled a family meeting tomorrow, and I've asked if my mother and I can join via conference call. My uncle was eager for this and the staff have agreed, so hopefully I learn more about what my uncle wants to do about his life and hear from the doctor and therapists what they think.

  7. #7
    He can get a lot of services at the Milwaukee VA SCI Center, and should get hooked up with them and get his eligibility settled. He should be a category 4 veteran regardless of his income, and can get the best wheelchairs, bathroom equipment, etc. through them. He should arrange to go there for an "annual" ASAP. The PVA can help him, and he can find his local PVA National Service Officer (NSO) here:

    Your aunt is wrong about his independence. He needs to not listen to her, and listen to the rehab people, and get on-line here ASAP. If he doesn't have a computer, perhaps he can get to the free ones usually available at the library, or perhaps his employer can help. He should also be linked up with Wisconsin Dept. of Voc. Rehab ASAP. Many people who have physical labor jobs can convert to estimating, dispatching or other aspects of the business end of the field. He will probably need to learn to use a computer at any job now days, so best to start ASAP on this.

    (KLD)

  8. #8
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    Quote Originally Posted by SCI-Nurse View Post
    He can get a lot of services at the Milwaukee VA SCI Center, and should get hooked up with them and get his eligibility settled. He should be a category 4 veteran regardless of his income, and can get the best wheelchairs, bathroom equipment, etc. through them. He should arrange to go there for an "annual" ASAP. The PVA can help him, and he can find his local PVA National Service Officer (NSO) here:

    Your aunt is wrong about his independence. He needs to not listen to her, and listen to the rehab people, and get on-line here ASAP. If he doesn't have a computer, perhaps he can get to the free ones usually available at the library, or perhaps his employer can help. He should also be linked up with Wisconsin Dept. of Voc. Rehab ASAP. Many people who have physical labor jobs can convert to estimating, dispatching or other aspects of the business end of the field. He will probably need to learn to use a computer at any job now days, so best to start ASAP on this.

    (KLD)

    I hadn't realized about the Milwaukee VA SCI Center - I will have him check into that. Thank you!

    We were able to have a family meeting via conference call with the hospital yesterday morning, and that went really well. I was able to speak to his social worker, his physical therapist, and his occupational therapist. Most importantly, my aunt was also at the meeting and was able to hear from those who are working with my uncle that once he gets into his chair he can just about everything he needs to. He still has some problems getting into and out of the chair, but they are working with him on that. Best of all, my aunt decided to stick around yesterday afternoon for his therapy and she told my uncle she was "absolutely surprised" at how much he is able to do for himself. In the 3 months he has been at the hospital, she has never witnessed a therapy session and has been letting her imagination run wild. I'm hoping what she saw yesterday will begin to change her thinking!

    The social worker said she will work with my uncle on some of the research I've done as far as looking into any programs he might qualify for - YEAH!

    Also, I found out he will have daily nurse visits for at least a month due to still having an IV for antibiotics, so that was comforting. He will also have in-home physical and occupational therapy sessions - 3x a week.

    I hadn't realized how worried I was, but I feel much more at ease knowing what his game plan is and knowing how he is going to move forward. I can't actually BE there physically, but it's not so much of a mystery. I know he can do it, but now I feel like I'm more onboard with it. And I know now he is not letting my aunt get him down - that's the best news!

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