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New to SCI and have lots of questions

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    New to SCI and have lots of questions

    I had developed paralysis from the waist down as a result of radiation necrosis, beginning with numbness and weakness in October 2002. Although I had been a patient of a clinical trial at the National Institutes of Health, the oncology and rehab teams were inexperienced with my progressive condition. I was referred to a rehab facility in Richmond, Virginia, but none of the therapists there had experience with spinal cord injuries. I had applied for Medicare, and although I was eligible for benefits, I did not meet the spend down criteria and my claim was denied.

    So, I realized that I could not afford to continue living in Virginia and decided to live with family. I moved to California in August and have been searching for a hospital/medical facility that would see me for primary care at low cost/free and refer me to a spinal rehab facility. My application for Medicare in California is still pending. I got to speak with an Info Specialist through the Chistopher and Dana Reeve Paralysis Resource Center and felt very encouraged.

    I was beginning to feel abandoned by the people at NIH as I didn't feel that the social worker or anyone else was going to go out of their way to help me get connected to medical system in Riverside county.

    The best recommendation I've had so far is to contact the SCI model system for California in Downey. Right now I'm trying to figure out how to integrate rehab into living in Riverside county. My wheelchair needs repair and I don't have transportation. Any suggestions?

    I'm sorry that you wound up with a spinal cord injury. I can't help as I'm not familiar w/ CA, but I wanted to welcome you and encourage you to feel free with any questions you have. What level is your injury? What type of repair is your chair needing? Is your family supportive?

    C5/6 incomplete, injured Aug. 2000
    Does This Wheelchair Make My Ass Look Fat?


      I think you are confusing Medicare and Medicaid (called Medi-Cal in California). Medicare is a federal program that you are eligible for only when you have been disabled for 24 months, and is not dependent upon income:

      Medicaid (Medi-Cal) is an income/needs based program administered by the county for each state. The state does get some federal money for this, but each state sets their eligibility and coverage (based on federal guidelines).

      If you live in Morena Valley, you have limited resources available. Are you saying you never received any inpatient rehabilitation, or that you did, but it was poor quality? Are you looking for an inpatient stay or an outpatient program with medical follow up?

      Programs I could recommend that are closer to you would include Loma Linda University hospital in Redlands and Casa Colina Rehabilitation Hospital in Pomona. Rancho Los Amigos (in Downey) is a wonderful center, but is a long way from you, and is having some problems with county funding and threats of closure. You may not be eligible for care there priority-wise since you do not live in Los Angeles County (it is a county hospital).

      I am assuming you are not a US military veteran. If you are, you need to get into the VA medical care system ASAP. Let me know, and I can guide you in this.

      You do not have COBRA from your previous job? How long have you been out of work? Has this been due to disability or illness?

      I would also recommend contacting your closest Independent Living Center (ILC) for some help learning about any benefits you might be eligible for. In California people with SCI are supposed to have their Medi-Cal applications expedited, but this does not help if you have assets or income over the allowed level. You can find your closest ILC at this site:

      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.


        the SCI is a result of chemotherapy/radiation necrosis the onset of which began Oct 2002 for treatment of Non-Hodgkins' Lymphoma in 2001. i've been disabled since 9/18/00 and receiving long-term disability from my insurance company. COBRA ran out and i have not been able to find insurance that provided extended care benefits i could afford so i could get either in/outpatient rehab. i had applied for SSI and approved for a closed period from 9/18/00 to Jan 2002. i was approved for MediCAID benefits for Virginia but my claim was denied since i didn't meet the spend down criteria.
        the rehab i received so far was an inpatient stay in Richmond, Virginia, one that was connected to a local hospital and treated surgery and referral patients for hip, knee, and foot injuries. there were no therapists with SCI rehab experience.

        i contacted the local ILC and was told to go to the Riverside county medical center and apply at the Medically Indigent Services Program desk.

        i would like to find a rehab center near me that would take me while my Medi-CAL application was pending as well as seeing a primary care physician. at this point, i really don't care whether i'm getting rehab on an inpatient basis or through an outpatient program. although i am living in moreno valley with family an outpatient program w/medical followup would perhaps be a better option. the SCI model system in Downey was recommended for the quality of care, but i would prefer getting rehab that's closer as long as the quality of treatment is comparable.


          thank you, Betheny, for your support. the SCI is incomplete due to radiation necrosis at T5-T6. the wheelchair is refurbished and was provided by a rehab facility in Richmond, Virginia, and followup arranged with the National Institutes of Health in Maryland and the regional rep for the wheelchair distributor. the chair was meant to get some parts replaced and some adjustments: a new backrest, one that was the proper height for back support, the springs on the left armrest, the leg rest angle to 70 degrees instead of 90, the brakes for the right wheel which don't catch when i'm going downhill and it is dangerous for me to travel alone. the wheelchair company was supposed to follow through when i moved from Virginia to California in August, but there has been none and no response to the calls and emails i've sent to the regional rep in Maryland.

          it's very frustrating right now and i feel i don't have any control and am just a nameless face.

          but, tomorrow is another day. i'm a Reiki practitioner and have been doing daily meditations and tai chi exercises to get myself through these trying times. i've also been studying hawaiian dance and culture (hula) for a number of years, so i try to keep in touch with my hula family in Virginia as well as my dance theatre friends in Hawaii. i am close to my family and although they are not able to help out financially since we all seem to be in some kind of financial crisis, they give a lot of moral support.

          my goal now is to get rehab, get walking, and get training as a massage therapist for a variety of settings. i've found the best school on the Big Island of Hawaii and expect to get enroll in the 1-year licensing program and work in Hawaii. since i'm from the Pacific, i can be close to my family and relatives in the islands.


            Um...I don't think you're supposed to use your brakes for slowing yourself down when going downhill. You can throw yourself out that way. They aren't meant for that, as far as I know. You don't want them to catch when going downhill....or else you might end up on your face.

            Don't piss me off or I'll run over your toes. [img]/forum/images/smilies/tongue.gif[/img]
            "Legs are overrated. You can still get laid." - Kevin Girardi, "Joan of Arcadia"


              actually, i meant taking hold of the wheels to slow myself down, not locking them by using the breaks. when i hold the wheels, i don't slow down and the wheels skid.


                HI On Oct 3 2002 I had a motorcycle accident I told them at the scene My back was broken all the precaution's were taken when I was flew to a trauma center in a helicopter the hospital did not think I knew what I was talking about so they went about my other injuries I had broken my back before and you know when it has happened again. they never gave me a MRI until almost 2 months later after I went through the rehab Just a general rehab they had me walking and all then when I was home I got a call saying I had a early app. with a orthopedic spinal surgeon. End's up I had a t-12 burst fracture. I lost control of my Bowels and bladder I am in retraining but I still can't hold them if it's a kinda strong I hav had a stress fracture in my left leg below the knee I was off it for about 6 week's but I used a walker since I don't have my balance and put all my weight on my left side and now my Left hip and pelvis are really hurting me!!! my injuries as follow's 3 broken toes chipped kneecap broken right pelvis broken shoulderblade !rst five rib's bruised right lung not to mention my back.. I also have nerve ending pain in my feet and bottom that almost makes it impossible to walk But I realize that I AM VERY LUCKY to BE WALKING I know most are not that forunate,, Can I expect pain from these for the rest of my life???? any help I would appreiciate Thank you!!!!!!!!!


                  Duge, I would recommend that you post your questions as a separate thread under the Care forum instead of in this forum. The SCI-Nurses can help you more there, and you will get more responses from peers there as well.

                  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.


                    In Califonia there is a program called Calif. Children's Setvices, which provides medical for young people 21 and under.


                      CCS is great, I had that till age 21, then after that, everything sucked.
                      May 2000, T4-5 Complete.