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son c5/c6 15 months post :(

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  • #31
    Originally posted by new dimension View Post
    I appreciate everyone's thoughts and have learned a great deal from CC but also find it overwhelming, scary and depressing at times. Need to limit my time on CC or I find myself consumed with worry about all the what if's.
    I am continually looking for inspiration...................
    Hi new dimmension

    Firstly I want to apologize for not being more sensitive to the fact that for a newcomer such as yourself that this can indeed be an intimidating and scary place .... you are dealing with the new reality that has become your life (and your sons) and some of us forget that it's a process .. that takes time .. unique to every individual ... life style, age, gender, son, daughter, significant other, culture, all factors affecting how we will deal with it all ...... we are all so fragile emotionally in the beginning ...... it can take many years .... we stall and move forward and stall again .... they are baby steps as Beth would say .... these are your baby steps ...... it's evidence that over time things will become a new normal and life continues some how .. those of us who have been living it for a while simply forget ..... maybe in some twisted way that notion will give you hope ..... that this moment too will pass and that it can be survived .....

    Visit CareCure in little bits ..... maybe just read for the first while until you're more ready .... I know of members that read for years before they became comfortable posting (and some that never do) its all fine .... you will be able to find the answer to almost any question just using the search function relating to almost any topic .... and when you are more ready for one on one support we'll still be here ..... whats most important from my perspective is that you remember we are always here and we're always available as a community to support you .... that you know you are not alone ..... if you allow it to happen sci can be an isolating experience.

    I hope that in time you will be able to glean from this site everything you need to learn to cope with this god forsaken injury .... if you are worried about being too public use the more private Caregivers forum .... there are (I'm sad to say) many Moms here who can completely relate to the feelings you may be wrestling with right now and if you're concerned about your son's privacy then use that forum .....

    Like any community there are a myriad of personalities to contend with and get comfortable with .....as you become more secure here you will find over time soul sisters and brothers .... and you will also find people you don't agree with or even get along with .... we share one common bond .... sci ... if not for that one fact we wouldn't even be here .... I pray that after you let a little time pass you come back a little stronger and a little more ready for all that CC has to offer ..... it can be a lonely road to travel .... by yourself .....

    I wish you all the best .....

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

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    • #32
      what to do now...

      he wants to walk!!!!!!!!!!!!!!!! From day to day he is not sure what he wants to do now. Our lease here is up in April and I think we both need a break. Two weeks ago he was adamant about not going home for longer than a visit but now that I have to search out our new housing etc. and commit he has softened on that. I know that going home (where we have only been a few weeks since the accident) would feel good briefly but than what, no good therapy, no special doc's, not enough college options, not enough special programs, not enough to do, places to go etc. if you are confined to a wheelchair. The winters are long and hard even if you are able bodied. To be honest he doesn't want to do much as long as he is in a wheelchair. Independence is key....we both know at 21 he needs space and I try to give him as much of that as I can. Trying to figure a way that he can be in control. Housing and reliable live-in care(I hope to stay nearby while things sort themselves out) are the main pieces. Anybody out there with good connections in San Diego??????

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      • #33
        What sort of connections? Can PW help?

        Here's a thought. There are various trials going on around the country. I did one in Houston, they suspended me over a treadmill and gradually increased the weight I was bearing.

        I walked out. Not well, but I did.

        I wonder if he'd be a candidate for these?

        Can't say without knowing his physical condition.
        Blog:
        Does This Wheelchair Make My Ass Look Fat?

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        • #34
          Originally posted by betheny View Post
          Right back atcha, John, although I don't agree with you about this issue. And yes, I'm a tough bitch.

          There is just so much to learn about living w/ sci. People do whine...it's not easy! But I remember watching clc, just to figure out how he got in and out of public places with these heavy Oklahoma doors. I was isolated until I started learning from the ppl that went before.

          And we're not all whining. Everybody has bad days sometimes, sure. But what if her kid is wondering if he can ever go to Isla Mujeres, Mexico, without his parents? How to get accessible concert tickets? What all the rest of CC is doing this summer? How hard it is to fly post-SCI? If quads go to law school? What the odds are of getting laid if you're a wheeler? If scientists are really working for a cure? What kind of digital SLR camera works best for a quad? Is waterskiing hard? What kind of shoes work best for an SCI bridesmaid? What do you say to people that tell you to pray harder? What supplements do you take? How do you get your protein?

          I've seen posts today on those subjects, just off the top of my head.

          He can read it here, and not have to reinvent the wheel daily.

          It's hard enough, without having to learn every step of every activity the hard way. That is where CC comes in.
          i just dont see it that way. u have never heard me whine not even when i was half dead, i did what i had to to fight back. if i saw some of the whiny dependant ppl i see here when i first got hurt, wow , it would have sucked.

          the way i see it is when u first get hurt u need to choose the road your going to take, hell yes it would be easier to use a pc, let someone dress u etc but that road is nothing but failure down the road. some ppl have no other choice but then there are the majority that you see here that think its ok to burden others those are the ppl i dont want nd's son to see. her son is not much older than i was when i got hurt, believe me i know how he feels. i was pushed hard..................thats what he needs.

          there is alot of good here, but not for a new injury.
          Bike-on.com rep
          John@bike-on.com
          c4/5 inc funtioning c6. 28 yrs post.
          sponsored handcycle racer

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          • #35
            B-connections - proven housing, live in pca etc.
            i know all the proper channels, I think, just looking for some "insider information"
            one never knows who knows who
            and as far as connections at PW......???
            the support other than the therapy, which is wonderful, is minimal if any
            they do supply a list of providers on their web site (google search)
            not there job I guess
            Please do not get me wrong Bryan's therapy at PW is great! That is what PW is there for and they do a great job at that. And yes they have that sort of weight bearing gate training at PW and Bryan does that and a less weight bearing one from time to time
            If we/I stay here longer I will make an effort to gather more resources for people traveling this road.........it would be soooo much easier, need to push hard myself
            F I agree with you...I need to push harder, both Bryan and myself!!!!!!!!!!!!!!!!!
            peace

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            • #36
              tell him to checkout youtube,,, chris cowell i think his name is,,, jut type quadriplegic transfer ad he`ll come up... but his youtube name is is name backwords...... he helped me out the most.... m still trying to tramsfer, but m gettin better, and dressing lower half is next... but this guys amazing...
              "With my lightnin' bolts a glowin'
              I can see where I am goin' to be
              when the reaper he reaches and touches my hand."

              Comment


              • #37
                Hi new dimension,
                I know it's been a while since your op, but I wanted to let you know (if you are still in Cali) that Life Rolls On is having another They Will Surf Again event on July 18th. It will be held at Zuma Beach near Malibu. I know that is a drive from SD but might be a worthwhile break for your son. They have all the adaptive surfing equipment that he would need to get in the water and have all the helping hands needed to teach him how to surf and pick him up when he falls (which does happen).
                I went surfing for the first time in May and it was a VERY freeing experience. If you have never seen this you can look it up on YouTube, just search "They Will Surf Again".
                Hope your son is doing well and gaining new things everyday!
                ~Mandy~
                SCI as a result of spinal surgery
                TiLite Aero Z!!!

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                • #38
                  Contact State Rehab for assistance with school find

                  some counseling and peer groups. There are many colleges in CA for your son to get support. A few JC's Deanza and Cabrillo. University of Berkeley is outstanding. If I can help with info PM me.

                  CA right now is in a financial crisis But there are some options. Contact state rehab in his area 1st for going back to school, Section 8 for Housing, and In-Home Support Services for care or Catholic Services.

                  If your son wants someone to rap with I'm here. Injured at 20 and going on 32 years as a SCI. It's not end of the world.
                  Lynarrd Skynyrd Lives

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                  • #39
                    Hi there...I saw the post awhile back about the problem with the wheelchair back and pressure sore...and couldn't find the post...so, posting here...How are things going? did the problem get fixed? just thinking about you! judy

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                    • #40
                      I just would like to say god bless you dad. I'm 34 yrs. Post. Broke my neck at 19. I saw how it tore my dad up, knowing he couldn't make it better. He hurt for me. All you can do is be there. My dads gone now but that love, concern, and trust never leaves me. God bless you dad.

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                      • #41
                        20 months ago my son broke his neck diving into a wave on spring break..c5/c6...after 6 months at Shepherd Spinal center he returned to college and is nearing graduation. He is preparing to take the MCAT's as he plans to apply to medical school. Don't let your son give up on his dreams...he still has a lot of living to do.

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                        • #42
                          My brother(21 years old) was in an accident 2 years ago and is inc c4-5. Well it was tough at first, but he gained back his independence through very hard work and is now back in School. There are many programs to help with this, so it is very possible but I agree with some of the other posts here that independence is key. Keep up the encouragement, don't give up.

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                          • #43
                            Originally posted by new dimension View Post
                            Thanks.......I agree to a point...
                            Without help returning to his own life (school) may be to far off.
                            I do agree with not bringing him to CC it is helpful but he has enough to deal with without having to here all the what if's.
                            We went to the "Meet the Scientists" symposium in Irvine yesterday hoping that would inspire him but I am not so sure what he came away with. I was inspired and know that staying healthy and living life while the cure is found is the only way to move forward...just can't get that through to him.....typical 21 year old..he has a mind of his own and an attitude that I hope will be beneficial in the long run on this journey .
                            Peace be with you...........
                            Therapy sounds like a good move here. If not with an individual therapist, perhaps some group therapy. At minimum, I'd suggest a peer support group. Also, if he could find a mentor (someone with an injury similar to his who has had time to readjust and move on with life) that may be another way to encourage him to think about how different his life can be in the future.
                            "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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                            • #44
                              I have a patient from the HEADNORTH FOUNDATION who has an SCI at the same level.
                              He does counseling. We both are in San Diego. Send me a PM ASAP or email me.

                              -Brad Marcus

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