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update on jim's eyes

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  • update on jim's eyes

    as some of u might know...jim has rp (retinitis pigmentosa) an eye disease that renders some blind. he was made aware of this when he was 33; though all throughout life knew something was not right. what this eye disease does is cause night blindness and tunnel vision. so basically jim sees what we would see by looking through a straw.

    he's dealt with it like a trooper and me...HA i'm strong, but i cry silently most of the time. never wanting him for a second to know how i feel inside. i've done my research endlessly hoping that there would some light at the end of this dark tunnel.

    jim has said to me right along "i can deal with this chair (19yrs this past august), but i can't deal with not being able to see" "what kind of life would a quad have with no sight" i come back with "it will be fine", but i know deep down inside what might lie ahead for us.

    u know the sad thing about this whole shitty situation. jim has become SO independent since i met him and also has become quite healthy. it's like shoveling shit against the tide at times. so my outlook now on life is to live for the moment and let nothing stand in our way.

    now that i typed a lot of what i had not intended to do...oh well needed to vent a bit. we just got back from a very long road trip. i took him up to connecticut and rhode island for 8 days; visiting my family and then onto pittsburgh for a wedding. i saved the worst part of the trip for last...his eye appt. at the cincinatti eye institute. i hoped that they would be able to give jim some hope and ease his mind. i wanted the best of the best for him.

    THEY DID...no his vision is not going to get better. unless of course gene therapy is approved and most importantly works. the good news is that the doctor seems to think jim has a mutant gene (well hell i knew that all along...hehe) ...his rp doesn't run in his family. this means that if he still has his vision at this age the odds r he will continue to see longer in life. u see most rp patients r blind by very early ages and sometimes go deaf too.

    we're home !! now just to take each day as it comes. i've made a promise that i will make it my mission to make sure he sees as much as he can of this beautiful country of ours. i'll fill u guys in when our next road trip begins. take care.

    stormie
    and in the end it's not the years in your life that count it's the life in your years. abraham lincoln

  • #2
    Damn, that's rough Stormie. It's great that he may retain the vision he currently has now but it's so crappy that he's lost even the slightest amount of vision while having to live with a high sci as well.

    A new abbreviation must be invented for such an occasion/circumstance and I think WARO has the perfect look. It stands for What A Rip Off.

    I really hope he doesn't lose more sight. I also hope the Docs can find a cure.

    Take care.

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    • #3
      stormie, so sorry to hear about Jim's vision problems. You are a real trooper though. Hang in there. Mike
      T12 Incomplete - Walking with Crutches, Injured in Oct 2003

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      • #4
        Well wishes to you both.

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        • #5
          Stormie - while I"m sure you would have loved to hear that Jim's vision could be improved, it is certainly good news that he is likely to retain the vision he has now!

          I'm glad you two had a nice trip, and may there be many more yet to come!

          Take care.
          Reality is merely an illusion, albeit a very persistent one.
          - Albert Einstein

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          • #6
            Stormie, hate to hear about Jim's eyes! will keep you all in my prayers!

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            • #7
              Gee whiz Stormie .... sorry to hear about Jim's eye troubles .... on the other hand the advances they are making with laser eye surgery now one never knows .. so there is always hope !!
              Take all the road trips you can manage ... coming at life from your perspective there is no way you won't enjoy every minute of them with Jim ... even if its just around the corner and down the block !!

              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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              • #8
                Hey Stormie

                Glad to hear you got a bit of good news.

                I admire your new outlook on life. I also kinda like your "shovelling shit against the tide" analogy ~ hehe. Geeze, it sure feels like that some days ~ well most days really.

                Here's to many, many road trips for you and Jim to enjoy together.

                We're moving into fall here, and the sights will be even more beautiful.

                Take care of yourself Stormie, along with Jim.

                Shelley

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                • #9
                  hi stormie and jim,

                  sorry to hear about jim's vision......i know squat about rp

                  did a quck search and found a couple things that may be promising

                  good luck

                  http://www.mdsupport.org/library/chip.html

                  http://www.medicalnewstoday.com/articles/23888.php
                  http://justadollarplease.org/

                  2010 SCINet Clinical Trial Support Squad Member

                  "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

                  .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

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                  • #10
                    My mother suffers from RP as well. She had poor night vision for years before the tunnel vision started to set in. She can still see well enough to work on quilts (her favorite hobby now) but she can't drive and has to be very careful when she walks because she can't see the floor.

                    My sister and I show no symptoms of RP, but I was recently diagnosed with early macular degeneration (MD). MD is kind of the opposite of RP, it works from the center of vision out instead of from the peripheral vision in like RP.

                    As I understand it there is a lot of research going into solving these vision problems via gene therapy and the like, so hopefully there will be some effective treatment for all of us soon.

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                    • #11
                      Hi Stormie:

                      I am a doc in ophthalmology in Denver. If your hubby is not taking vitamin A Palmitate for RP, he needs to consider doing this... of course... clearing any therapy with your docs is a good idea. The usual dose is 25,000 IU but it has to be vitamin A palmitate and not beta carotene. Studies done mainly at Harvard by Eliott Berson show this supplement slows down the progression of the disease in some patients.

                      Best,

                      Sieg

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                      • #12
                        Good luck Stormie & Jim

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                        • #13
                          Stormie, there are many researchers working on this disease (much more than spinal cord injury) and they are hopeful that stem cells may be able to replace the pigmented cells and the receptors. Wise.

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                          • #14
                            THANKS for all the replies !!

                            as for the vitamin A...jim has been taking that for 3 yrs. the doctor at the eye institute said if it were him he would be taking more, but he said if he were in jim's condition he would not. reason being possible liver damage down the road. i'm up for any feedback and advice so please tell me what u guys think.

                            so sorry i haven't been a part of cc like i would have wanted over the past couple yrs. i've just had a lot on my plate. hope all is well with all of u !! i think about u guys often take care and thanks again.

                            stormie
                            and in the end it's not the years in your life that count it's the life in your years. abraham lincoln

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                            • #15
                              Stormie... you can PM me with any questions or concerns...

                              Prayers are with you and Jim

                              Sieg

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