So one of the first questions most people ask once they find out about RP is:  What is the cure?  And, of course, if anyone is reading this who has been diagnosed with RP, you probably remember the grim advice from your Opthamologist:  prepare to go blind.   Living in today’s day and age, however, we are not satisfied with the information given to us by our doctors because we have a keen understanding that their knowledge goes only as far as the information they themselves have researched.  And with the ridiculous amount of information available on the web these days, the potential to find some piece of information– some study in a random, far-off place that our doctors may not know about yet– is just enough to make us feel empowered to find our own answers.And so begins the ominous, tiresome search for treatment– some magical herb, vitamin, or implant that will bring an end to all the stress, pain, and fear of the future.

When conducting an online search on treatments, there is quite an array of information about trials, treatments and current research studies– from preliminary studies to human trials.  Yet there are also quite a lot of opinions, warnings, and debates.  I went online the other night simply to research one particular treatment– Dr. Yu’s Acupuncture treatment in Vancouver, BC — and before I even realized it, I had been on the computer for 3 hours– till 1am.  And it was with sore, screen-tired eyes that I trudged up to bed, my shoulders tight from hunching over my computer and my mind filled with far more questions than answers.

This was not a first for me.  I have been sucked in by this nebulous search before– it always starts off with a glimmer of hope and ends with a sense of confusion– is there anything out there worth trying?  Which research funds are worthy of my donation?  Which alternative medicine is worth my time and $?  Which treatments have side effects and which are worth the risk?  These questions can be exhausting.

That tiresome evening of research sucked me right into “cure mode”, which most people would think would put them in a state of hope.  But for some reason cure mode usually does the exact opposite to me– I find myself more depressed, more anxious and more distraught over the disease.

So does this mean I should never do research and simply focus on the Psychotherapy i started recently, which is helping me work on accepting my vision loss, or should I fight it?  Does it have to be one or the other?  And does hoping for something different necessarily mean I can’t accept what is?

I have “met” a number of people online who focus all of their attention, 24/7, on finding a cure.  I go on certain forums and see the same people on them all the time– people who must spend every minute of their free time talking about a cure.  I am not judging people who do this or saying it is wrong.  Maybe they’ll find something I won’t– or they’ll find it first.  Maybe being in constant cure mode is completely healthy for them.  It’s just interesting how people deal with RP so differently; I’ve also met several people who are nearly blind from RP who spend absolutely none of their time searching for a cure.

One of these persons is a mentor of mine and someone I really admire.  He has very little vision left, is a successful attorney, and has never once mentioned RP research in the many conversations I’ve had with him.  He chooses to focus more on making adaptations that allow him to live his life well.  He knows braille, has mobility training, and has adaptations that allow him to use the latest techology– computers, cell phones, etc.  He is very involved in the National Federation of the Blind and also serves on a special board appointed by the President that examines disability law as it pertains to blind people.  For him, he would obviously love it if a cure were to come along, but he doesn’t spend his life waiting for it.

For me, I think there does need to be some sort of combination of the two in order to be okay mentally– to have hope but not to constantly live in an obsessive cure mode.  That fine line into obsessiveness is probably different for everyone.  I think for people like me it might mean limiting our online research time to one hour a week– the same amount of time I’m spending at counseling.  For others it may mean going full force into cure mode for a week or so and then taking a few weeks off (who knows the too-good-to-be-true cure that might surface on the web after a few weeks vaca!)

Note:  My sister’s and my research on Dr. Yu’s RP treatment is actually looking promising for us.  Please stay tuned for more information about our upcoming plans, which will be shared in future posts.

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3 thoughts on “Sucked in by the Search for a Cure

  1. Hi Joy. I loved reading your garage sale post. Holy cow those pro garage-salers are relentless! We’ve had to hold them at bay before. I wanted to let you know I appreciate you and your sister writing this blog. A friend’s teen daughter is living with RP from childhood so I sent her your blog address. I thought she would be encouraged through your stories as adults and foresee a hopeful future for her daughter.

    Next sale, feel free to tell everyone to back off until you’re ready and anything they hold up and pester you about costs $100 unless they bring it to you!!

    • Thanks Joni! I’m so glad that you sent Laurie to our blog and hope meet her daughter, Emily, at some point. And most of all, I really do hope this blog is encouraging to her and Emily. Thanks for reading my post, and I will take your advice for the next garage sale (which won’t be any time soon!) Joy 🙂

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