Roberta's Journey to Hearing Begins on Friday!

We'll be there!  So exciting!  So excited!  But nervous too!  More later!

Happy Mother's Day!

My daughters amaze me!  One is a mom - and a great one at that!  The other is not a mom, sadly; she'd be a great mom too!  They have showered me with many blessings throughout their lives.  This Mother's Day is no exception!

Andrea has started a new blog called "Eye Can't Hear You!"  (http://eyecanthearu.com) to provide information and personal history to the hearing and/or visually impaired.  This is her post for Mother's Day!

If you are a Mom with a disability, take the time to thank your mother for all she did for you…

If you are a Mom with a child who has a disability, thank you for doing all you do…

Eye Can’t Hear You! would like to wish all the moms out there a Happy Mother’s Day.

_________________________________________________

To All the Moms with Kids/Adults with Special Needs

 You were there for me through thick and thin

You never gave up when I was sick

When you were told I had special needs

You knew I was special, and you are special to me.

I know why you were chosen . . . for your capabilities.

You are my teacher, advocate, and taught me many abilities.

You cry and smile when I succeed.

I want to thank you for all you do for me.

Because you are special, the most special Mom for ME!!!

(Family Network on Disabilities http://fndfl.org/)

So true and so special!  I'd like to think I helped along the way - for both daughters are self-respecting and other-respecting fully-functioning adults who hold responsible jobs, manage themselves and their family, and now are helping others through blogging and in many other ways.

If you have an interest in resources, aids, info, and hope for those with visual or hearing disabilities (or both), I hope you'll follow her blog - she posts every day! (More than I can say for this blogger!)

Stay tuned to this blog, as we are about to embark on an exciting journey with Roberta, who will have surgery on June 7 for a cochlear implant! I plan to document that along the way!  Hope you'll follow along with us!

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Reality Check! Update!

The good news:  
The irritation in Roberta's eye appears to be a scratch on the surface of her eye, probably due to soap in her eye after crying over a sad movie.  It wasn't a meltdown as first thought, but rather just the sadness of "Steel Magnolias."  Bad choice for the moment!

More good news: 
Her vision today at the check-up was 20/25....even better than the day following surgery!  And she maneuvered so much more easily at her job as school psychologist today, now being able once again to see all the way down the hall, recognize faces at a distance, read lips at a distance, not have to wear sunglasses in her windowless office or in her sunny home.  She navigated with ease and is thrilled about that!

The reality:
There are so many things operating that can affect RP, and everyone with this condition is different, and so is the rate, extent, and progression of disease.  We KNOW that she'll have to have YAG laser surgery as a follow-up at some point.  Could be a year; could be a month post-op.  This surgery and its risks are described here.

There is the risk of CME (Cystoid Macula Edema) or swelling of the retina or macula after cataract surgery.  Here is info about that.  The critical period for this swelling is between four and six weeks post-surgery.  The risk of retinal detachment remains for up to six months.

For those of you who have had cataract surgery (but not RP), there are some of these risks for us as well, but most people - who are generally MUCH older than Roberta) - undergo cataract extraction with no or few complications.

I think that the benefits for Roberta outweighed these risks, but now the surgery is DONE, her vision has improved significantly, and she is delighted with the results.  She has undergone a miracle to restore much of the central vision she has lost over time.  She has experienced TODAY with this improved eyesight; she/we (her father and I) will take one day at a time along with her (though at some distance - like 850 miles!)  She will learn to value each day in the moment and not look back.  And if tomorrow that changes, then she needs to be grateful for the blessings of these days right now.  I pray the good times will continue to roll for a long, long time!

RP and Cataract Surgery

People with Usher Syndrome face progressive hearing and vision loss.  The vision loss is due to Retinitis Pigmentosa (RP) that causes increasing loss of peripheral vision, while the central vision - for the most part - is unaffected by the RP.  That doesn't mean that the central vision can not be affected by other visual acuity issues.  Near- and far-sightedness can usually be corrected (or somewhat corrected) with glasses or contact lenses.  But cataracts are more common with RP at a younger age than with normal-sighted folks (like me!)

There is controversy and lack of consensus as to whether or not cataract surgery is advisable at all for patients with RP.  In fact, our daughter's retinal specialists have STRONGLY advised against it!  However, the retinal specialists she's seen, while long well-known in their field of research, are just that.  They are not clinicians; they don't deal with the reality of one's life or the functionality of vision based on the personal, professional, social/emotional life of their patients.  So....after consulting with many, by phone, email, in person, and doing extensive online research, she went to a highly recommended cataract surgeon who has experience with such surgery on RP patients and has, in fact, done a number of them against the recommendation of our daughter's retinal specialists - with success!

Roberta made this decision herself, deciding to go forward with the surgery and take the risks associated with it to have a chance at extending her work life, which had become severely impacted quickly over the last 8 months, due to loss of acuity, extreme sensitivity to lights and glare, and distorted images from the affected eye.  I think when a hearing-impaired person who relies heavily on lip-reading can no longer do that across a table, it's natural to want to do anything to improve that.  Imagine the frustration of struggling to hear AND see when just months before, you had a good handle on the disabilities imposed by this condition.  Usher Syndrome is an inherited condition, caused by both parents carrying a recessive gene for it.  Our daughters both have this syndrome, Type IIC, with absolutely no known history of it on both sides of our families.

So....the surgery took place last Wednesday, a simple procedure that had us in and out of the surgery center in very little time.  She was alert (no conscious sedation) and pain-free when we left there, and she was immediately thrilled with the results.  A follow-up appointment the next day revealed that her vision was 20/30 unaided in that eye as opposed to the 20/200 pre-surgery with her contact lenses.  WOW!  WOW!  WOW!

We left her yesterday to return home, feeling comfortable that she was OK to be on her own and to return to work today.  So far, so good.  Stay tuned, however, for the follow-up to this story, for there is an issue today for which she is going to see the surgeon.  Not sure what's up, but if you're reading this, please continue to pray for her.  I'll report once I know more, or you can follow along on FB.

A Special Book and Author

Many thanks to a new neighbor / court reporter who took a workshop on transcription for the hearing impaired and then loaned me a book, highly recommended, on which the workshop was designed and the author was the presenter.  The author describes her personal journey from hearing to profound deafness and back into the world of hearing as a result of a Cochlear Implant (CI).  Author Arlene Romoff calls it a "modern day miracle" in her second book, Listening Closely.  This is actually the second part of her journey, documenting the demise of her first CI and a reimplantation as well as her progression to becoming a binaural hearing person once again.  I have been moved to order her first book, Hear Again.

Ironically, the hearing aid dealer we dealt with in RI, when we were in the throes of FOUR hearing-impaired ears, called his business "Hear Again!"  While visits there were always traumatic for me, he and his wife and staff ran the most welcoming service, always made me laugh, even while dealing with difficult life and life term  events.  I will always be grateful to the late Reno Bellafiore and his family.

And it's important to realize that while we were struggling to deal with the realities of our children's hearing loss in the 70s, others were in the process of developing the so-called "bionic ear."  The results of those scientists, researchers, and medical personnel are that CIs have become more and more perfected and available to restore "hearing" to deaf and hearing-impaired individuals across the world.  I had always hoped there would be something in my lifetime - and certainly within my daughters' lifetime - that would make it possible for them to "hear!"

It's important to realize that CIs do NOT correct hearing, not in the way that eyeglasses can correct vision (sometimes), but that one does actually have to learn to hear again.  Arlene Romoff, in her well-written and informative books, describes sensitively and in great detail the process by which one relearns to hear and communicate with the hearing world.  The social/emotional components of the transition are handled equally as well.  It is a fascinating read for anyone considering a CI, or for those, like myself, who travel the journey along with their afflicted offspring.

As one of my daughters has committed to CI implantation next June, I am most interested in reading Arlene's story.  I posted about her books on FB yesterday and then searched for her within that venue.  I found that she has a personal profile but not a business page.  I sent her a message along with a friend request, which she immediately accepted, visited my Scarf It Up FB page (and "liked" it).  As we began a dialog via FB messages, I informed her of my interest in her story and told her of my daughters' Usher Syndrome and that they manage a FB Community called, Usher Me In.  She immediately "liked" that page too, and I hope she'll be a follower and contributor to that effort.  Thank you, Arlene!

Also somewhat ironically, as I was driving home from work at my co-op gallery, I heard on the radio a report about a bionic eye that has been developed in Australia, for use in RP patients.  Somehow I knew 40 years ago when we first started this journey that there would be assistance for the likes of my daughters, and hopefully I will personally see and hear and experience all this for my daughters!

The Frustration Continues!

Life can sometimes feel like a living nightmare soap opera!  Just when you think things are status quo - after accepting what is over a period of time - a new kick comes into play.  In the last week, there have been TWO such knock-downs, one for each of our daughters:

• One learned that her hearing has declined significantly in one ear.  Consideration of cochlear implant has been advised, which she is very reluctant to consider.
• The other learned that cataracts are the cause of her diminished vision.  Surgery in the case of RP patients is riskier than the norm, and the opinions on their treatment are varied and horribly confusing.

Both have jobs they can't afford to lose and parents who can never stop worrying, particularly as WE get older and realize that we can't take care of their needs forever!  I guess this is a constant for most parents.  We've spent the last week researching the best retina specialists, cataract specialists, and comparing the two major brands of cochlear implants.  Confusing and exhausting!

Any personal recommendations will always be appreciated!

There IS Hope!!!

I've been remiss and haven't posted here for quite a while.  Life and other stuff (like the stuff I make!) have gotten in the way.  But always I come back to the issue of Ushers Syndrome - because it affects my life through my daughters.  They are both amazing women with fulfilling lives who seem to deal well with their condition(s).  It takes just an incident or posting on FB or blog posting or conference call to bring the whole thing home again - for me!  But I don't live it EVERY single day of my life.  I admire my girls and all those who have vision and/or hearing issues - for the struggles they most often endure silently every single day of their lives.

I listened on Monday to a conference call/visual presentation by Heidi Rehm of the Harvard Medical School, on the "Why's" of genetic testing for Usher Syndrome, the reasons for the cost, and the time it takes to secure the results.  Is it worthwhile?  Absolutely!  Very costly, yes!  But just today I was alerted to a new research study approved by the FDA for US Type 1b.  So that means that it is very important to KNOW what type of US one has - to be able to be included in the study.  We know that our daughters have Type 2, but we DON'T know which one.  It will be important to know in order to be able to avail themselves of studies down the road.

So much has transpired in the world of genetics for US in the last 22 years since Roberta's diagnosis.  Progress comes slowly, but there is hope, and I always want to hold onto that.

Then I read on FB of Roberta's mishap at school and was devastated for her.  No long-lasting physical ill-effects but the emotional ones wear on and on.  It hurts so much when a mom can't FIX what hurts!

And this morning I caught up on my reading of DoubleVisionBlog, in which twins are undergoing an unusual Eastern medicine treatment for RP, and so far the results are outstanding.  And scary!  And so well-written.  Fear of hope is explored as well as some details of this extraordinary treatment process.  I urge you to read it if you have any interest at all in RP (retinitis pigmentosa).

Let there be hope - as fearful as that is!