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Thread: Wiggling Toes, C3-C4 Injury for Senior

  1. #11
    Senior Member
    Join Date
    Oct 2011

    Home Care + Vent Dependent

    I am trying to do an "analysis" on Home Care since my Dad really wants to go home - I'm worried since I know very little about medicine and health, but I'm doing as much research as possible. The Hospital doesn't recommend that I try it since my Dad is vent dependent and will require 24 hour care and registered nurses.

    I'm trying to call the Medicare reps but have been waiting for over 2 weeks and each rep tells me something different.

    Any advice? is there a good thread to read?

  2. #12
    Your dad needs to go to an inpatient specialty SCI acute rehab center first. I would strongly recommend Santa Clara Valley Med center. They are expert in this, including training you & other caregivers and all the logistics. Call them.


  3. #13
    Senior Member
    Join Date
    Oct 2011

    Sensation in Arms - Wiggling Toe Senior

    Thanks for the recommendation to call Santa Clara.

    At about the end of week 5, my Dad indicated that he felt sensation - primarily in his arms and that he can feel it "sometimes." He has feelings on the bottom of his feet (when I do an amateur reflexology). Also, a nurse mentioned that his eyes "flew open" when she grabbed his toe and she told me that he had indicated to her that he could feel this. He also indicated that the medication is affecting his ability to feel. This encouraged him greatly -- I mentioned this to the Doctor who checks his feeling - she uses her latexed finger and a sharp point (little stick) -- but he failed the test -- he was exhausted at the time and after she left, he fell asleep.

    Is the "sometimes" sensation normal or a good sign? Could a person feel kneading and not a sharp stick or finger? Would the pain medicine affect his ability to feel?

    I am dismayed because I was able to cheer up my Dad, especially when I told him about the wait time for the swelling to go down -- and, he indicated that he wanted to recover. But, according to a nurse, a Doctor recently told him that he would never get off the vent and asked "do you want to be like this for the rest of your life?" My Dad has yet to get a peg -- so, according to the nurse, the Doctor told him "if you want to be like this for the rest of your life, choose to get the peg."

    I saw my Dad after this conversation, and he was obviously in anguish.

    At first, the Doctor told my family that they would know the first week if my Dad could move again -- now, they are saying that if he doesn't move within the first 3 weeks, it's definite.

    dear SCI Nurse - you had mentioned a few weeks to months for the swelling to go down in the spinal cord... is there any document which I can download to show my Dad?

  4. #14
    Quote Originally Posted by Joey_SF View Post
    He is in San Francisco. I don’t know if his doctors are experts.

    The spasms have started, so it’s difficult to show the doctors anything.

    The doctors are encouraging him to choose not to live – I’m devastated! I’ve stated that I've read literature seems to indicate 4-6 weeks and sometimes more – I spoke to a woman who told me that it took three (3) months for the swelling to subside - but they're saying that he's complete and the best case scenario is to be like C Reeve and so, it's best that he choose not to live. He is not being given any medication to help with the swelling – he has only been given pain killers and blood thinners.

    One of the doctors initially spoke about moving him to an acute rehab center, but he also recommended that he choose not to live due to his age. Worse, the doctors are standing by his bedside and saying that he’ll be this way for the remainder of his life – and, now, my Father seems to want to die!

    No, he’s not a vet.

    Please give me your kind advice.

    I take offense to doctors stating the bold part above, that being in Christopher Reeve's condition is not worth living. I'm in that condition, though I'm much younger than your father.

    I don't want to give you false hope, but life is NOT necessarily bad, just because someone has a high-level SCI and is vent-dependent (I'm not the only positive example). Granted, I don't know how age impacts things, but regarding his ability to potentially wean from the vent, typically that has much to do with the level of injury. At C3 or lower is technically where one needs to be in order to have the ability to regain spontaneous breathing. But perhaps if he's a C1-2 incomplete, the "incompleteness" could give him access to his diaphragm.

    But even if it he cannot wean on his own, your father could be a good candidate for a diaphragmatic pacing system (DPS). I tried the DPS without success, but I'm truly complete and 14 years post SCI, and your father could be incomplete, based on the sensation in his feet (I have none). It is probably too early for weaning and/or DPS discussions, but here's an extensive thread about the DPS if you're interested:

    God bless!

    Bill Miller
    Last edited by BillMiller823; 11-16-2011 at 01:38 AM.
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  5. #15
    Yes there are different tract and they are separate so you can have no movement or sensation to sharp touch but be able to feel temperature , deep pressure or vibrations.

  6. #16
    Senior Member
    Join Date
    Oct 2011

    Another good rehab

    Q: Is it common to have sensations "sometimes" and not at other times? Is it a "good sign" that he can feel kneading more than a sharp prick?

    Q2: I will try to re-apply to Santa Clara - what is the 2nd best?

    Q3: I am checking into the phrenic pacer... thanks!

    Sorry, I didn't mean to offend -- yes, I noted the constant comparison to Christopher Reeve. Statistics indicate that elders fare much worse with SCI, especially the first year.

    By the way, I love "hope" -- in speaking to other persons who were going thru their individual "recovery," they often lost hope, but their family never lost hope... and this was what helped them.

    Any recommendations re computer or software or hardware to help my Dad to communicate since you're obviously doing an incredible job of this?

  7. #17
    Hi Joey, sorry for the delay replying.

    You didn't offend me with the Reeve comparison; I was offended by doctors telling you that such a condition isn't worth living. I believe that is a personal decision that should only be made by someone in the condition -- AND only after TRULY learning what he/she can and cannot do in such a condition (which requires rehab and beyond). More is possible than most realize, which is one reason for the existence of my personal website, and why I wrote this on it: (I'm planning to update that page overnight tonight)

    Regarding question one, can your Dad feel surface sensation either with the sharp object or soft cotton (I think that's how the ASIA test is administered)? Is that the type of sensation that's coming and going?

    You said he has spasms. Does the "kneading" cause spasms -- could he be feeling spasms and not surface sensation? I ask because that's what I feel. I can tell when certain body parts are moved if it induces a spasm. I can feel the tremor vibrate my body, but if it starts with a particular leg, I sometimes cannot tell which unless I see it. Make sense?

    Even if I don't spasm, I can sometimes tell when my limbs are being moved even though I cannot feel anything below my neck. If I'm in my chair and you lift my arm, which causes my torso to shift, I can tell my torso shifted. Ditto if you move my leg in bed, for another example.

    I cannot answer question two.

    Question 3... the thread I linked in my first reply above discusses two different types (one more than the other) of pacing methods, both of which have merit. I encourage you to checkout both options to see which might be best for your Dad, if needed.

    I'm glad you haven't lost hope. That's big, as you have discovered.

    Regarding communication... there are options. Whether breathing independently, on a pacing system, or still on a vent (like me) unless your Dad has complications I'm not aware of, then I would think he should regain the ability to talk, and hopefully talk well. But learning to talk well or mostly "normal" like able-bodied people is not an instant or super easy process to learn or get comfortable with (especially with a vent). But I believe it's doable for the vast majority of people, i.e. high-level SCI or a vent doesn't usually prohibit speech (except when a vent/trach user is cuffed, which I can explain later if necessary).

    This requires some fairly significant explanation, but I'll continue under the premise that your Dad will be able to speak well eventually. Probably the best-selling voice software on the planet is Dragon NaturallySpeaking. There are three primary levels I believe, tiered by price and options, and by options, I mean the ability to write voice commands which can significantly improve the user's experience.

    I wish there were a current product that I could wholeheartedly recommend as being wonderful for people who need to operate their entire computer by voice. I say current because there is such a product, but it was originally designed for Windows 95 (that's not a typo) and is copyrighted 1993-1997 -- but I'm using it on Windows XP to dictate this (I'm able to do so because it was well-written to start with, and I've literally written thousands of commands to help it work well with newer programs and the XP operating system). It's called DragonDictate Classic Edition, but was abandoned in favor of the NaturallySpeaking products.

    But I know I cannot use this indefinitely, so I'm working to switch over to NaturallySpeaking Professional Version, which has full command-writing capabilities. I'm also using an add-on package of commands called KnowBrainer, which are designed to address many of Natspeak's shortcomings. If you contact support staff, in particular KnowBrainer creator Lunis Orcutt, people with significant physical disabilities can get KnowBrainer for free.

    I'm in graduate school and I'm hoping my Windows XP computer will last until I can get many of my commands added to KnowBrainer to help me transition to the new software. Even though Natspeak can be operated completely hands-free, there are many frustrations in particular for people who cannot use the mouse or keyboard in conjunction with Natspeak. I'm actually planning to call Lunis when I have a break from school and talk about the shortcomings I've identified and see how best we can get around them.

    Once I'm fully switched over, like Lunis, I'd be happy to give away my commands that could help others with disabilities operate Natspeak with fewer frustrations. If we could get the makers of Dragon to listen to us collectively (Lunis and others including CareCure members know Natspeak extremely well -- way better than me, certainly at my current level of experience with it) we could help them improve their software for hands-free use. But from what I've heard, most of the Dragon sales are for the Medical Version, and thus Nuance (the maker) is catering to that product. We'll see.

    At the very least, I should be able to add some (hopefully many) useful commands to KnowBrainer for Natspeak, but I'm still learning what KnowBrainer and Natspeak have and what shortcomings need to be addressed.

    Regarding your Dad, since he probably hasn't had any experience with voice software, he may not initially recognize the shortcomings of Natspeak and will simply learn to work with it as is. That's certainly a possibility.

    Sorry for the lengthy explanation, and I hope I don't sound arrogant or anything. The reason I'm still using DragonDictate is due to the frustrations of trying to switch to NaturallySpeaking. But I know I need to switch soon, and hopefully this computer will last to help me transition. I had a very knowledgeable friend try to help me put DragonDictate Classic on Windows 7 without success.

    God bless.

    Bill Miller
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

  8. #18
    Senior Member
    Join Date
    Oct 2011

    Looking for Hope

    Hi Bill,

    Sorry for this late reply. I have been so frustrated with the rehab hospital where my Dad was transferred to.

    It seems that my Dad is being "ignored"... with the coming of winter, he only had a hospital gown and a sheet for the first five days when he entered the facility (I feel guilty for not noticing), poor oral care, no cough assist (we told all patients with similar conditions had a cough assist, except my Dad), therapists arrive late and leave early (for example, in a scheduled 30 min PT session - the therapist did an approx 4 min worth of range of motion), more sad stuff. He was uncharacteristically lethargic -- the comments are "he looks like he's sleeping... and after all, how old is he?"

    After our insistence on x-rays, they discovered that he had pneumonia. They just finished the first round of antibiotics last week -- and accidentally, started him on another round about two days later.

    There's a lot more (long sad story).

    The doctors had stopped the vent weaning when they discovered the pneumonia. But, a report was submitted to the case manager/insurance stating that he won't be able to be weaned off the vent during his stay.

    My Dad was so eager to try to improve and to recover in rehab -- and, he is now very discouraged.

    1) Would the pneumonia (also my Dad is slightly anemic and this has worsened since he entered rehab) effect his ability to breathe and wean?

    They tell us that insurance policies dictate that he must transfer to another facility. I've been told by a Doctor that their conditions are worse than the current rehab hospital.

    Santa Clara rejected him -- the feedback is that he can reapply if his condition improves.

    Right now, he's just recuperated from pneumonia and very discouraged.

    2) What can I do?

    I've been at the hospital every day - trying to help with oral care, remind them to do cough assist, learn to do range of motion, massages, reflexology, ...

    I'm frustrated because I don't know what I'm doing -- and, I really want good physical therapy for my Dad.

    Someone advised cheerful topics?

    My Dad's mind is very sharp (so, he aced the math questions which the speech therapist asked) -- but, he's starting to lose interest such as not even wanting to listen to music... so, I wonder about how to keep his mind active... card games?

    My Dad's strength is his mind... and hope.

    Btw - I certainly don't think that you're arrogant. I wish that I could meet you.

  9. #19
    Senior Member
    Join Date
    Oct 2011

    Speaking and Eating

    Hi Bill,

    Kindly let me know - you had mentioned that it's possible to speak easily if not on a cuff... what did you mean?

    Also - my Dad has started to "eat" -- just a few teaspoons of apple sauce, nectar, and recently water. He did well... but, the speech therapist claims that my Dad tires easily and feedback is that it may be difficult for him to be able to eat for "sustenance" and perhaps, only for "recreation." Is it merely a question of exercising the swallow and tongue?

    I'd appreciate your kind answer.


  10. #20
    Hi Joey,

    Sorry for the delay replying.

    Regarding your first reply above, question one, yes, having pneumonia would affect the ability to breathe and attempt to wean. Pneumonia is essentially secretions (with "bugs") in the lungs and it can decrease strength and make breathing more difficult. Plus, I think weaning attempts are typically postponed if someone has pneumonia.

    Question two, from what you wrote, your efforts are wonderful and on target. It's not easy, but you're trying to help as best you can, which is all anyone can ask (and sometimes more). I'm sure your father is grateful whether he recognizes your efforts or not.

    Regarding games to keep his mind active, I love Sudoku. Maybe you could be your father's hands while he solves puzzles? If you don't know what I'm talking about, the dollar store sells Sudoku books for $1 and you can learn/play online: (incidentally, ignore the record times on that website; clearly some people solve the puzzles, and either print or write down the solutions, then restart the game so that they can post incredible times, for the level 4 puzzles cannot typically be done in under two minutes like some claim).

    Maybe other CareCure folks can offer additional suggestions.

    Regarding speech... he can only speak with the cuff deflated, and until he is quite medically stable, I don't think they will consider giving him a cuffless trach. So, deflating the cuff is the only option. But deflating it should coincide with a vent volume increase to account for the air being exhaled out his mouth and/or nose, and the quantity "used" for speech. It isn't necessarily easy. It can make the person dizzy. It requires effort to get accustomed to. But ultimately learning to talk again is worth it. A speaking valve can help also, but isn't typically used right away when someone is first trying to get acclimated to learning to speak again.

    I hope this helps and can clarify further if needed.

    God bless.
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

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