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Thread: What abilities needed to be semi-independent

  1. #1
    Senior Member elarson's Avatar
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    What abilities needed to be semi-independent

    I have a friend who is 6 months post-SCI. He is in assisted living right now and not very happy. I am wondering what general abilities are realistic for him trying to live semi-independently with some help from a PCA.

    I don't know his exact level of functional capability, but do know that he has reasonable upper body strength. He is currently cath'ed but looking to start rehab again to wean off the cath. He also needs help with transfers.

    Any general pointers for someone who will not have a lot of assistance from friends and family, but can probably get some assistance for a PCA a few hours a day?

    Also, he is still only at 6 months, but as someone who has experienced the long rehab times for stroke, I am trying to encourage him to get a decent wheelchair. He is currently using a rented depot chair. I have suggested that he consider a used chair off E-bay, but he is not very open to this idea because he feels strongly that he will be walking soon. Should I be encouraging him on this or not? I don't want to discourage his recovery, but if he want's to live semi-independently, I think mobility will be very important.
    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

  2. #2
    What is his actual level of injury? Does he have strong biceps & deltoids, wrist extension, triceps? Did he not get any initial inpatient acute rehab???? Will he be going back for an inpatient acute rehab stay in a SCI specialty center, or just getting some outpatient therapy??

    Does he have funding for part time or full-time attendant care??

    Why is he trying to get off cathing?? To do what instead?? How about bowel care??

    How independent is he in transfers?? Bed turns? Dressing, bathing and other ADLs?? Cooking, shopping, and money management? Desk-top skills (use of computer and/or writing)?? What will he do for transportation (potential to drive and get a vehicle)??? Does he plan to go back to school or work?

    Does his insurance not cover purchase of a custom fit appropriate wheelchair??

    Even those with very high injuries (C4 for example) can live alone in a non-institutional setting if they have the ability to 1) direct the care needed from others and manage his attendant care needs, and 2) have the resources for paying for housing and PCA care.

    (KLD)

  3. #3
    Senior Member elarson's Avatar
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    I appreciate all your questions KLD. I think they are the things that need to be considered. I don't know the answers to most of them, but it is good to hear that this can be a realistic option for higher injuries than his, which I think is around C6, but I don't know his functional level.

    Are there any quidelines for when is the best time to decide on a wheelchair if there is still functional progression? Although he is only at 6 months, my feeling is that he would be better to start the process of getting a wheelchair sooner than later, even if eventually he may not need it full-time. The wheelchair would be covered by insurance. Living semi-independently will also mean a move across country, and I think he would be better to get the chair where he is already established, because I think he will have less help than he does now for organizing these things once he moves.
    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

  4. #4
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    Elerason, I am 10+ years post injury. My picture is maybe 2 months old. I do tons of my own therapy 16-20 hrs/week 5 days/week. Take the weekend off and start all over again. I live alone. I have a dog. I cook. I clean I even cut grass on ridign tractor. I do bot plow snow, but have thought. Am in process of attempting pass neurological issues in order to move forward attempting regain driver license. Help I receive is someone drives me to grocery store and doctor office. Pretty much want nobody doing anything for me. It may take time and do all of these things in pieces. It took me vey long but kept at it. I do tons of leg exercises on the floor, in the chair, standing and some walking with a walker. I still need to teach/learn leg retraction. My abdomen was a mess and a zillion operations. Even skin graphs that never worked. Even had "shit" bag that did not worked. That was removed, skin stretched and they sewed me up. DO NOT ALLOW fluid to build up from waist down. It takes a long time to remove and messes up a lot of other things. I got the fluid out and my legs look normal. I do wear athletic compression socks all day long.

  5. #5
    elarson, he should have been fit for, chosen and had ordered a good quality custom light weight wheelchair in his initial rehab. That is what is generally done in the States unless the person refuses to participate in the ordering if they go through rehab at a SCI specialty center. Is this person in the States or in Europe someplace??

    Where is he going to go back for the further rehab you mention?

    (KLD)

  6. #6
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    SCI and elerson, elerson stated attemting/hoping walking. That was me also, and the chair they put me in, a Quickie 2 folding, may hve been good for initial work, but was far from where I wanted to be. I have no idea how you get these things, initial-goal, all thinking on the same, correct, page with the initial things. My impression of eauipment, if you stay in it too long, your body become addicted to it. That addiction is incredibly difficult to then break. As you say, should be fitted, yes. And at least mine, even accounted home environment into that fitting. Just be fareful if that goal is walk.
    Last edited by rlmtrhmiles; 11-24-2012 at 11:48 AM. Reason: typo

  7. #7
    Senior Member elarson's Avatar
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    Thanks for everyone's input. My friend is in the US, and although he signed up for this forum, I don't think he has been active much in it yet. Because we are about 5,000 miles apart, it's hard for me to have a lot of details from him, and even if I did, I would not feel comfortable posting that without his approval.

    I know that while in acute rehab they did have someone fit him for a chair, but it was going to be custom hand built, which seemed a bit odd to me for a new user. He decided to wait a little while, and is now in assisted care. I would think that this new session of rehab would be a good time to dive into it again, and get something that fits covered by insurance, and hopefully the skills he needs to live semi-independently.

    I'm hoping that he is reading this thread and maybe will pipe in with more information.
    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

  8. #8
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    smahms, elarson, just as info, I was in ICU coma nearly 6 months initially. It took me 1-1/2 years just to get out of ICU from how messed up I was. For a very long time I did not even have skin on my abdomen. They took that off with all the issues. I had multiple skin graphs that never worked. I even have muscles removed from my abdominal area.

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