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    my sister

    Hi my name is Linda and I have a sister who in June had a spinal stroke and now is a para or some say a soft quad, she has use of her right hand and can move her right arm, she can move her left arm but has no use of her hand. My sister wants to die, she can find no reason to live, she has been out of Spaulding Rehad in boston since Oct 1, but has been in her local hospital 4 times since then, she is home now but just got home again, she is very weak, she has a bad uti, which she is receiving antibiotics thru iv at home for the next 2 weeks, she has recently got off anitbiotic for C-dif, 2nd round, came very close to dying from it a month ago. Her weight is down to 109 from a normal 126, food is not sitting right and she can not sit up straight it makes her feel like everything is squished inside, this is relatively new, she has a skin sore on her coccyx that is stage 4 if all that is not enough she has 0 will to live now, she is so sad and i do not know what else to do but listen and be there, obviously that is not enough or working, i have been reading so many stories on this site I gave her the link and i am hoping you will meet her and maybe we can help her somehow. Her name is Stella and she is not just my sister, she is my best friend. Thank you all so much, Linda

    Linda, I am so sorry to hear about your sister. The last 7 months must have been the worst you could ever have imagined for Stella. No one can prepare for this kind of situation, for the loss, pain, grief and confusion it brings. But thankfully you have found this site - it truly is a godsend and can provide you both with guidance and hope for a better future. Perhaps you can post your thread also in the NEW SCI section so that one of the SCI nurses can answer you, and of course others that have suffered similar injuries. Life does get better, but the first months are so difficult that you need all the help and advice you can get to show you how to make that happen. The important things now are for your sister to get rid of her sore and infection - these alone will wear her down. Hang in here for advice. Best wishes.


      What is her actual level of SCI and ASIA level? This should have been explained while she was a Spaulding. I don't know what a "soft" quad is, but if she has impairment of her upper limbs at all, she is not paraplegic.

      Who is providing her health care now? Is she seeing a physiatrist on a regular basis. Is she on antidepressants? Getting counseling? Both are commonly needed for some time after SCI. There is no shame in getting treatment for depression, and she sounds seriously depressed.

      With a stage IV pressure ulcer she should not be sitting at all. She should be on bedrest on a special mattress. She should also be seeing a wound care specialist and may even need some surgery.

      Was she working or going to school before? Everyone needs some goals and reasons to get up and going in the AM. Once her skin is healed up, what will she do with herself?

      Can you get her on-line here?

      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


        She has factor v laden, she had a spinal stroke in which they had to remove 700 cc's blood out of her spine, this was june 22, on the last mri her spine was still very swollen, they said she was a para, but she has no use of her left hand, she can lift the arm but thats it, her right hand is weak but usable.

        She was at spaulding rehab in boston, but got out on oct 1, she has been in Wentworth-Douglas hospital 4 times since then for c-dif and uti's, she just had an appt with a specialist regarding the sore, but she is not on bed rest, she is her chair all day long, they did order her a new seat to her chair.

        She has not been able to see a psychiatrist, every appt she has had since getting home she has been in the hospital when the time came.

        My father is paying for pca's to get her up most days and put her to bed, some days, her husband does the rest, her kids are kids and are trying, she has to ask them to do so much for her that they can lose site and be brats, but who wouldnt and i dont blame them, their life has been turned upside down.

        She had a great job at liberty mutual, she has been there for 18 years, she is 38 has been married 15 years has a 15 year old daughter and a 9 year old son, her husband is self employed and as you can imagine had not worked much since this happened in june.

        Stella's nutrional level is very bad, she can not eat much, and she is very weak, she wants to return to work but seems to be hospitalized every 3 weeks. Right now she has a nurse come everyday to give her iv antibiotics for a bad uti.

        i just called her and told her how i was in the chat room for an hour and that she need to come on tomorrow, so i am going to bug her until i get her on line,

        i have never felt so helpless, and i can not begin to imagine how my sister feels.


          ya, its pretty much been a night mare, its crazy, i think about how i get to leave her house and almost pretend for a little while, but she never gets to pretend, like you know when you get into bed at night and you move this way and that too get you know comfortable, she cant do that anymore, it blows my mind. I think about if she worries about fires or someone breaking in her house and she cant move, just cant move.......trying to comprehend all the changes that have taken place and the more changes to come....but getting her healthy seems to be an impossible feat. I will never give up finding ways to help her, i would give so much to see a real smile on her face, she tried hard to fake that thinkgs were ok, but you know sisters, you cant fool a sister, especially one that is so close, the up side of that is i know she can vent to me the down side of that is i know how bad she wants to die. I cant wait till 2010, 2009 is going to be a tough year.

          thanks for listening and caring


            Physiatrist (physician specializing in rehabilitation), not psychiatrist (physician specializing in mental illness). The former would be to help with her SCI issues such as spasticity, skin, bowel, bladder, etc. The latter would be the person to help her with her depression and medications for this.

            She should not be sitting. A stage IV pressure ulcer in her coccyx means it is to the bone. She could very well already have osteomyelitis there, which can lead to chronic sores and even sepsis. She needs to stay off it totally and see a good wound specialist.

            She should have a phone or ECU she can use for emergency help. She should have functioning smoke alarms and CO monitors. Ask your local fire department to do a safety assessment of her home. There are many things she can do to prevent fires and properly respond in emergencies such as this.

            What was her job at Liberty Mutual? Does she have her insurance through them too? Does she have a nurse case manager? They can help. She should be able to return to work for them, and sooner rather than later would be better for her.

            Again, what is her actual level of SCI and ASIA category?????

            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


              i asked her her level of sci and asia category, she said she did not know them, so that seems wierd to me, so i am going to talk to her and her husband tomorrow and get more info, she does have insurance thru liberty but i do not think she has a nurse case mangager, i will ask her about that too., I am sorry i misunderstood about the physiatrist, no i do not think she has one of them i am going to have her read all this and we will have to start doing some research, she lives in rochester nh. the wound specialist she went to showed her husband the bone, so i know the sore is too that point but i do not know anymore, i will though. She is never with out a phone if she is alone, and she is not alone very long. I think the fears at this point come from knowing she cant move, so it seems to magnify things that you didnt have to think about too much before. Have i said thank you to you, you are giving me so much to work with in such a small amount of time, it gives me some peace tonight, thank you so much


                Here you can find a list of physiatrists in NH:


                When you call, try to find one that is also board certified in Spinal Cord Medicine if possible.

                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


                  Hello, Linda
                  Welcome to CareCure. SCI is really a terrible thing, and here you will find many people who have been there and understand. It would be really good if you could get Stella to come here herself. Her husband is also welcome. It's OK to vent here, too.
                  My wife has a SCI. She found that seeing a psychologist helped her a lot in the first year or so after the injury. The acute sense of grief & loss and the frequency of panic attacks do lessen in time.
                  KLD mentioned it, but it's extremely important that no pressure at all be on her sore. That may very well mean no sitting at all until it is healed. Also it means keeping the sore from touching anything when your sister is in bed. Pressure sores can be killers.
                  - Richard


                    Being around others with similar situations helps. Hopefully, Stella comes to CareCure and gets her grove back (ya know I just had to say that ).

                    Depression is bio-chemical ... as long as we keep that in mind, all's okay! The infections and lack of nutrition are not helping her blood quality.

                    That coccyx sore can end her life if the bone is infected beyond control ... she needs a bone scan of that area ASAP and she needs to stay in bed and off of it (what kind of mattress does she use - it's a good idea to get an air mattress if you're going to be in bed for a long period of time.) Coccyx wounds are difficult to heal because of the proximity of skin to bone ... I had a flap surgery to repair it in 1988 ... I'm now 36 and it still holds with no further problems.

                    Does she have spasms at all? From your description, I'm guessing she's totally flaccid?

                    What did she like to do before she was injured?
                    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12


                      Linda, I don't have much to add to what the Dr's said already, he knows, but I did want to say how lucky your sister is to have you. It's important for someone who is buried so far into the depths of physical mayhem to have an advocate researching and helping her. Make sure her husband see's this site, he'll need some support too. so all I can really do is pray for your sister, you and her family. God bless.


                        Hi Linda,

                        Other people here have more similar situations to Stella than I do, but I can speak on the initial depression. It took me four concurrent antidepressants (well, three plus Ativan as needed for anxiety) before I started seeing the positive in life again. But once I did, and learned about my situation (I'm a vent-dependent quad, paralyzed from the neck down) I realized I could truly live like this and that life can still be good. Definitely different, but still good.

                        With Stella, I would encourage her to try to get healthy and see what life will be like when she's healthy for an extended period of time (at least several months with no significant issues; she can get there). I would ask her doctor about antidepressants, and try them until Stella has something that works for her. I didn't need my four antidepressants for too long, once I could see the positive that remained in my life, which most importantly, were family and friends that wanted to see me persevere. It sounds like Stella has that too, and though I'm not a parent, I would think she would want to live to see her kids grow up (and she can still parent and have a positive impact on their development if she chooses).

                        Another thing that helped me was the realization that, despite being vent-dependent and having no movement or feeling from below my neck, there are people in the world who are living with worse circumstances than what I have. I can elaborate with examples if asked.

                        God bless!

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

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


                          she is so lucky to have you, what a wonderful sister you are.
                          this is a great place you have found, and I hope that one day your sister will come meet us. there are wonderful people here at care/cure. most have been where she is now. you never letting up encouraging her is the most important thing ever. besides the hard facts she is dealing with, she will find her friends and maybe even relatives may disappear. it just happens. the lonesome part of it is the worst. isolation. sometimes its self infllicted sometimes just a part of the condition. her mind might tell her she does not matter any more, that she is a burden, that she is a freak. that its too much. I had small children to keep me knowing how to plug away at moving on. sometimes though, I would try to convince myself that theyd be better off without me. I was lucky to have someone around to verbally kick my butt into an attitude adjustment. she is lucky to have you. sorry you had to find us, but glad you did. welcome.


                            hi, my name is Stella. My sister found this site for me. She's my best friend. I'm a new parapeledgic. it's scary and depressing. I've been through so much since June I feel like I'm never going to get healthy. I want to go back to work but I can't seem to stay out of the hospital. I've been intibated, multiple collapsed lungs, multiple UTI's, c-diff twice. Once it was so bad they said I had less than a 10% chance to make it. It just doesn't end. I hate being in this situation.


                              Hello Stella and welcome to CC. It certainly sounds like you have had everything thrown at you in the last 7 months. Your immediate challenge though is to get rid of the pressure sore - as long as you have that your general health and wellbeing will be in jeopardy. Hang in here for the best advice on how to tackle it. Keep coming back for more information of even just to vent - that's what we all do. We're all here to help each other.