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!

Vision Walks! Fundraising for the Foundation Fighting Blindness!

My girls are amazing!  I am always proud of them but now more than ever.  They both decided it was time to get involved in fighting for their own cause.  The Foundation Fighting Blindness' Vision Walks to raise funds for research on a variety of blindness diseases and conditions seemed to be right up their alley.  They BOTH committed to doing something they've never done before - establish a "walk team," set fundraising goals, and solicit funds to support their respective walks.

Andrea is walking in Greensboro, NC this Saturday; Roberta is walking in Boston in late October.  BOTH have met their $$$ goals, raising a combined total of almost $4000.00, and both will walk with family and friends.  Andrea and her family made tie-dyed tee-shirts for their team members with the Usher Me In logo on the front.

My only regret:  I can't participate in either walk with them for a variety of reasons, but I will be there in spirit.  I've committed a percentage of my Scarf It Up! sales to this effort through the holidays.  If you'd like to see more of my work, please view my flickr pages, and if you're interested in purchasing anything, contact me via Facebook.  Many thanks to all those who have supported Andrea and Roberta in this effort and who have purchased my creations!

Musings of a Mom!

I've always tried to maintain a positive attitude towards most everything in life.  It is not because I am a person of faith or that my family of origin was positive in nature, or that I married a positive person.  These were NOT the case!  I guess, despite all that, I have my own sense of looking at life to uncover the best possible means to be happy or improve my own situation or that of my loved ones.  Considering the environment in which I've lived 60+ years, I manage to be positive most of the time.  And so it is in dealing with disability and family health issues that have been part of my adult life for 40+ years.

I do get depressed from time to time!  And I do take medication for periods of time when I need it.  And I do talk with a therapist on occasion - also when I know I need it.  In other words, I recognize the signs and symptoms, and I take care of myself.  I have to....because I am needed.  I can't help those in the family who need it if I am not whole and sane. (Tennis and my fiber art help too!)

Somehow, and this seems rather ironic, I've gained strength from the many setbacks our family has encountered.  For example.....the knowledge that one daughter would fail her DMV vision test and have to give up her driver's license - although we knew this was coming - was initially devastating.  A life-altering experience that has been characterized by relief, rather than angst.  I worried more about this lack of driving permission than her driving itself.  And she has dealt with it beautifully - hiring drivers for work, appointments, and errands, and prevailing upon friends and neighbors for other needs and entertainment.  I should have been worried about how safe she was (and others!), and so now I realize why she's experiencing this as a HUGE relief, rather than a HUGE burden.  And she's handled it with aplomb!  So proud!  I pray that our other daughter will accept her fate when it happens with similar equanimity.

Each person handles life's experiences differently.  That's a function of personality and one's personal philosophy.  How do I handle the various tribulations of my life?  Not always with aplomb!  Not always with positivity!  Not without falling sometimes!  And not without failing sometimes.  But I realize that I have a process that seems to work.  If shared, this process can perhaps help others in dealing with their own trials.  But that's where personality comes into play, I think.

Here's what I've done - even before I realized it was indeed MY process!

My initial reaction to adversity is not always good or positive or effective.  In an emergency (such as the many cardiac issues encountered with my DH), I am usually OK through the crisis and fall apart after the critical period is over.  With disability issues for my children, I am initially devastated, shocked, frightened, and immobilized.  I ALLOW myself 24 hours (but generally no more) of self-pity.  Sometimes it's hard to "snap out of it" (as some have advised!)  If it persists for more than a few days, then I know it's time to resort to other means - medication first and then arrange to meet with my wonderful, compassionate but direct LISW.  Generally by the time I get to the appointment several days later, I have snapped out of it, and embark on a plan to DO and COPE rather than STEW and MOPE!  This has proven effective in so many instances!  But this is MY personal plan - it will not work for everyone.

The most important thing is to find the resources and help to develop strategies that WORK for you!  For some, this might be faith in God, prayer, support groups, involvement in disability organizations, writing, helping others, presenting, educating, or any number of other engagements that WORK!  Helping others always works wonders, so if you're reading this and having difficulty dealing with Usher Syndrome, low vision, hearing loss, any other form of disability, disenfranchisement, disaster, or distress, consider these possibilities and SHARE them with others.

This blog is proving therapeutic for me but with the hope that it will perhaps help others too.  Comments welcome!

What can you see?

I've never asked my daughters this question before!  Since one of them is visiting us this week, I decided to now ask this question and one other.  We were sitting in our office area - she on the floor; DH and I in our respective chairs at our computers.  I turned to look directly at her and said: "Look straight at my nose and tell me what you see."  My elbows were resting on the arms of my chair, and I was about 5' away from her.  She could see my face and my extended elbows, the tops of my knees, and she was aware of the light from the window behind me and the stained glass disk hanging in the window.  She could NOT see my legs below the knees, the floor, the top of my computer cabinet, or anything on the wall above it.

Retinitis Pigmentosa
ONE of the aspects of Usher Syndrome

The limits of her field of vision shocked me.  I'm not really sure why because we knew that she had recently had to give up her driver's license because she could not pass the visual field test.  She "never saw the moving light at all!"  Normal peripheral vision is close to 180 degrees.  Hers is about 30, so we're told.

This prompted my next question - one I have been reluctant to ask, but she willingly answered.  "Are you relieved to no longer be driving?"  I had thought her need to give up driving would be a crisis, a critical life-altering experience to which she would VERY slowly adjust, find her drivers as necessary, and go into some type of immediate - and understandable - depression.  Instead, she has been more pro-active than usual, found people willing to provide services in her home (the hairdresser, the dog groomer, the speech pathologist), found drivers for work, back-up drivers when needed, friends and neighbors to drive her to shop and to attend to daily needs, and SHE IS VASTLY RELIEVED!!!

I had no idea how stressful driving had become for her.  She had for several years given up driving at night and in rain, but honestly, she and I had driven several times in recent years between NC and New England, sharing the driving almost equally.  She never drove in the NY - DC stretch, but who likes that stretch of 95 anyway?  I NEVER felt uncomfortable with her driving or concerned for her or my safety.

Well, all that's behind her now, and she has handled the changes with aplomb.  It has not been a crisis; it has been a gift.  By her own admission, she manages things in her life much better on a deadline and so her driving needs have been addressed and arranged - all before her vacation in NC!  I am immensely proud!

A "Funny" thing happened at the dentist......

Well, you wouldn't think anything "funny" would happen at the dentist, but indeed something did that offers possible hope for low vision sufferers.  I had broken a filling on a Friday night - great timing!  Fortunately it didn't bother me, but on Monday I called and got an almost immediate appointment.  Wasn't even dressed when I got the call-back.

So I'm sitting in the waiting room reading Our State magazine, a beautiful publication that I vow to subscribe to.  There is an advertisement from an eye specialist/researcher/optometrist in WILMINGTON who has developed treatments for various eye diseases and conditions, primarily macular degeneration.  I am intrigued, but also skeptical.  What legitimate medical person actually advertises?  So I ask the receptionist if she could make me a copy.  When she sees what it is, she says, "Oh, he's my doctor!  And he's wonderful!"  And he's the doctor of the dentist too as well as a number of other staff members.  He had his practice near the dentist's for many years until moving to Wilmington.

I can't wait to get home to check him out on the Internet.  And here is what I found: Dr. Edward Paul has in fact "successfully treated individuals with Macular Degeneration (AMD), Diabetic Retinopathy, Albinism, Stargardt's Disease, Optic Nerve Disorders, Nystagmus, Myopic Degneration, Macular Holes, Retinitis Pigmentosa, PXE, Strokes, and many other eye conditions that cause Low Vision."  And he offers free phone consultations.

I called!  Although he seems to specialize in macular degeneration, he does indeed work with retinitis pigmentosa patients.  They were able to arrange an appointment while Roberta is visiting us next week!  While I am somewhat cynical by nature and hold out no expectations from this consultation, I am very interested to know how he works, what he has to offer, how he's measures his success, and if there is some hope to restore enough vision to enable Roberta to recover and retain her license for a while longer.  We shall see (no pun intended!), and I will report back afterwards.

Oh....and my broken filling was easily repaired - no drilling, no root canal, 20 minutes, and done!  An interesting morning!

VisionWalk!

Both daughters have gotten themselves fully engaged right now in the fight against blindness.  Both are participating in the Foundation Fighting Blindness' VisionWalks, one in Greensboro on October 1 and one in Boston on October 29.  They have set up their teams and are looking for team members and supporters, those who'd like to walk (and get their own sponsors) and those who can't be there to walk with them but who would like to make a donation on their behalf.

Andrea's page is here!  Roberta's is here!  You might recognize these photos from their personal pages.

If you are so inclined and would like to donate to a cause that funds research for all degenerative vision disorders, you will find links on their respective pages.  At this time, there is no treatment or cure for Usher Syndrome, and research funding is needed.  Your support, in prayers, thoughts, and deeds, will all be appreciated by our family and so many others who suffer from Usher Syndrome and other deaf/blind issues.

Thank you so much!

The SECOND Diagnosis!

Roberta was four months old when we learned that Andrea was hearing impaired.  It was indeed a difficult time.  And I felt immensely alone!  (Absentee husband due to his career change goals and subsequent grad program required long days of travel to Boston and back; when he WAS home, he was holed up in the basement studying!)  We needed to learn quickly how best to promote communication skills in Andrea, and I still had to care for an infant.

And I was desperate to know that our baby had normal hearing!  Testing began almost immediately - at my insistence.  So at 4, 7, and 11 months, her hearing tests were "inconclusive!"  Small comfort there!  The axe fell at 13 months on a day I will never forget (but I do forget the date).  What I remember most was how I reacted once in the car with the two girls.  I completely broke down and sweet Andrea said to me, "Mommy, what's wrong?"  The only way I could make a 4 year old understand was to reply, "Roberta needs to wear hearing aids too!" to which Andrea said, "Oh, goody, now she'll be like me!"  How sweet!  But for a mom, this was devastating news.

So once again, thanks to the Willie Ross School for the Deaf in Longmeadow, MA, we received training in assisting our children with language acquisition, speech and articulation through play, and other activities to encourage and enhance communication.  Willie Ross was an oral communication school for the deaf, so we were naturally encouraged to teach our children the tools for oral language, rather than signing.  What did we know?  N O T H I N G !!!!

But as preciously stated, this decision turned out to be the best one for our girls - they will tell you so today.  I'm not sure how that will play out in the future, if/when they are no longer able to see well enough to read lips, but it was correct then and still is.

The early years were tough!  When Andrea was five and Roberta 2.5, we moved from MA to RI - where my husband finally found a job in his new field of hospital administration.  Three+ years of little income (I substitute taught on occasion) were fraught with tension of newly discovered child disability, absentee husband, career change, and now a move to a state where we had no family, no friends, no ties at all.

But the move to Cranston, RI was a blessing!  We landed in a cute little neighborhood with lots of kids and friendly neighbors who became fast friends over the years.  Children of all ages played together on the street, in our homes, and the families socialized frequently.  It was safe and fun for all of us!  Although there was a neighborhood school, where Andrea attended kindergarten for a few months, services for the hearing impaired were provided at another local school, so that was arranged for her first grade.  Roberta went to the local YMCA for preschool.  Mrs. Jean Wilson was the invaluable teacher of the deaf through most of the girls' elementary school years - in a pull-out program - for speech and language and as liaison between us and the teachers.  It was wonderful!  And she was the mom-substitute for me.  I could call her at any time with questions, concerns, etc.  And Mrs. Hoffman was Roberta's pre-school teacher for three years.  She was another godsend!

Mrs. Wilson passed away when Roberta was still in her care in elementary school - a sudden and very untimely death.  We all mourned her passing forever - since the replacement left something to be desired, and neither the girls nor I liked her very much.  Thanks to Jean Wilson, both girls were quite independent and by that time needed less assistance and instruction.  Besides....both girls at this point HATED both the replacement and the very obvious attention and impression being taken out of class made on their classmates.  So while IEPs were always in place for both of them through their public schooling, they availed themselves less and less, and that worked!

The constant interaction with neighborhood kids, who accepted them wholly and helped them in every way, was a bonus.  I am forever grateful to Mary Joan and Earl, Linda and Joe, and Marcia and Joe for their tireless support of our family.  And the move to RI brought me to a mother's group at the RI School for the Deaf that changed my life, even though the girls were never schooled there.


To be continued.......!