“Although Florence Henderson’s otosclerosis was apparently treated at a time that enabled her to benefit more than me, her picture as well as those staring out from those frames in my surgeon’s office reminded me that my former doctor was wrong in telling me that I would be unemployable by the age of 50. I was 45 years old at the time, and the stapedectomy served me well for another ten years until I received my first cochlear implant. ” mw
Like many Americans, I was shocked to learn this morning that Florence Henderson had passed away. She was health-oriented, slender and a seemingly ageless beauty. Her time on The Brady Bunch seemed to make her the eternal “mom” in her orange kitchen for those who are part of Generation X. But her life touched mine in a way she will never know. Like me, she had otosclerosis and she led a proactive example of how we can focus on solutions rather than problems. She continued to perform, despite the hearing loss few knew of.
In this condition, the bones in the inner ear called the stapes, anvil and the hammer become “arthritic” and stop stimulating sound. In addition, the tiny bones break and form blockages in the ear canal. This condition is more prevalent in young women of child-bearing age, but still, there are many men who develop this condition. It is often hereditary, although many bypass inheriting this condition.
For over a decade, I entrusted my hearing healthcare to one doctor for my healthcare. A huge mistake. He ended up being the head ENT doctor at a regional hospital so I trusted he was a pro. He told me there was no hope for me and that I would be “unemployable” by the time I was 50 years old. I remember feeling like I wanted to scream and vomit at the same time. The truth was the Americans with Disabilities Act was about to be signed and there was already an operation called a stapedectomy which could have helped me. The otosclerosis continued to permeate my ears and damage my hearing.
Then one day a friend with hearing loss recommended that I try her audiologist located on the Grand Concourse in the Bronx. Melanie drove me to his office on a crowded Bronx street with cars double parked, — a neighborhood I remembered visiting as a child with my parents for school clothes at the famed Alexander’s. Richard Cortez, M.S. was a kind and intelligent man. As my hearing declined, he witnessed many visits that ended with sobs and resistance to acceptance of my new “self.”
One day, Richard Cortez asked me if I ever heard of an operation called a stapedectomy where an artificial stapes is placed in the ear canal. I hadn’t. He gave me a small card with the name Alan Austin Scheer, MD. He assured me if there was any hope of helping me, this man could.
Dr. Scheer was considered “the” doctor to see for stapedectomies, and he even patented the prosthesis device that would later be inserted in my left ear. As I entered his office uptown on Park Avenue, I noticed a” wall of fame” containing pictures of celebrities he had operated on. People like me who had otosclerosis. Florence Henderson was the first to catch my eye. Then Lorne Greene and others. Below the pictures was a tapestry of Biblical quotes a woman had put together as a gift of gratitude for his work.
The quote that always stayed in my mind was “…and in that day, the deaf shall hear…” Isaiah 29:18-20.
Although Florence Henderson’s otosclerosis was apparently treated at a time that enabled her to benefit more than me, her picture and as well as those staring out from those frames on the dedicated “wall of fame” reminded me that my former doctor was wrong in telling me that I would be unemployable by the age of 50. I was 45 years old at the time, and the stapedectomy served me well for another ten years until I received my first cochlear implant. Today, many people with the same condition would probably be treated with Cochlear’s BAHA or a cochlear implant. And to stress my point, Florence Henderson continued to thrive for decades after receiving her bilateral stapedectomies. After her operation, Florence Henderson formed a longtime association with the famed House Ear Institute as well as many other charities.
To me, Florence Henderson put a face on this little-known condition called otosclerosis and I thank her for that. To me, it was not a “wall of fame” in the end, but a wall of hope. Despite the fact that her death has come as a shock, she knew how to live well. May she rest in peace.
Meet Melanie Riordan, a woman with quite a story to tell!
In 2004, Melanie discovered that she had a brain tumor and her whole world came crashing down on her. All the “what ifs” ran through her mind. Suddenly, she felt it necessary to determine what she would do if her life came to a crashing halt.
She was in a relationship with a good man. The thought of dragging him into her crisis led her to confront him and end the relationship. He refused to let her go. He said he was in the relationship for the long haul, and besides he loved her. Not only did Melanie survive, but she thrived.
Melanie’s hearing was affected by the brain tumor, and she received a BAHA implantable device by Cochlear Corporation www.cochlear.com two years ago. She also enlisted the help of Canine Companions for Independence, www.cci.org, and received her first dog, Noah. Noah passed away in 2016, and Melanie received a second service dog named Bartram in 2016 as well. Both Noah and Bartram were always acutely attuned to Melanie and her environment. Noah, who was with her since 2004, always sensed the onset of a migraine headache related to her brain tumor. During one period, Bartram constantly nudged her to go outside the house, and he would even sit in front of the door so she wouldn’t be able to get back in. Shortly thereafter, it was discovered there was a slow gas leak in the house.
What follows is a question and answer session regarding her experience with dogs for the deaf. Even if you are not considering getting a service dog, this is an amazing tale.
As a recipient of a CCI Service Hearing Dog, can you tell us approximately how many commands the dogs are capable of responding to?
There are about 25 BASIC CCI dog commands that all CCI dogs know. Then depending upon the placement during/after advanced training will determine how many commands the CCI dog will respond to depending upon job role for the CCI dog.Some basic commands are as follows:
Bed: dog lies down on target
Car: dog loads into car
Here: dog returns to you
Down: dog lies down
Hurry: dog toilets
Jump: dog places whole body on top of object
Kennel: Dog will go into kennel
Let’s go: Dog moves forward with you
No/Don’t: Verbal correction to your dog
Off: dog will return all 4 paws to ground
Ok: dog is permitted to eat or drink
Quiet: dog stops barking
Release: dog is permitted to take break while performing (like to say hello to someone)
Shake: dog will extend paw towards person
Sit: dog places rear end on ground
Wait: dog will not move forward until you give command “here”
Some Alerting Sounds May Be As Follows:
Timer on Microwave
Beeper on Stove/Oven
Go get “name:”
With CCI hearing dogs you can use ASL as well. You must make sure you have eye contact when giving hand gestures to a CCI hearing dog.
As time goes on, you can add an unlimited number of commands.
Notable, CCI hearing dogs are the only dogs that are trained on escalators. This is good to know because many persons with hearing loss have balance issues. Also, the dog can help the recipient tell which direction a sound is coming from.
The CCI website describes a two-week training period for the recipient. Can you tell us what happens during those two weeks?
Classes run from Monday through Friday from about 9:00am to 4:30 pm. Saturday and Sunday are usually free days. The first day covers introductions, campus information, tour and expectations.
Classes are offered in both voice and ASL. If you don’t require ASL your chances of getting into a class sooner is sometimes possible. The wait list for training is two months to two years. CCI tries to match a recipient with an appropriate dog. Once in awhile a potential recipient is not considered an appropriate candidate. Essentially, participation does not guarantee the participant will be awarded a canine companion.
During the two-week training period the participant will have an opportunity to work with different dogs to see which one works best for him. Towards the end of the first week, he will be assigned a dog that will stay in the room with him. Each day there will be lectures, the recipient will be given a handbook and quizzes are given at the end of the day. There are practice field trips to get the potential recipient used to being out with the dog.
CCI provides free housing for recipients during the two week training. All campuses and rooms are handicap accessible, there is free WiFi and TV in every room and there is a central meeting room with a TV, — and there are washers and dryers. There is a gated patio area as well. They provide lunch, but you are responsible for breakfast and dinner and airfare to the site. They have campuses in both Santa Rosa, CA and Orlando, FL. There are kitchens provided if you prefer cooking to eating out. Each dorm has a dorm keeper that will be available to you by email/phone/text if needed. This person will be one of your first contacts when you arrive.
After a final exam, there is a graduation ceremony that will touch your heart. Here is a link.
You will be given the contact information of your puppy raiser with the option for you to contact them. Remember, the puppy raiser was with the puppy for 8 weeks and cared for them completely. You will also be given the contact information of the instructor and assistant if needed.
In addition, CCI will be available to the recipient for the life of your puppy. They will follow up with you to ensure the dog is receiving good healthcare and is generally well cared for. For instance, CCI is very strict on weight. If they feel a dog is being neglected they will take him back. Remember, CCI owns the dogs.
How do I connect to other CCI recipients?
Facebook and Yahoo groups are great connections to the CCI community. Once you graduate you can join the various support groups on Facebook. They have specific groups just for CCI hearing dogs and other service teams. They all share information, support, pictures, progress and help each other out no matter how far apart we may be.
The website states the average service life of a dog is 8 years. When the dog becomes “retired” is he or she returned to CCI or does the recipient keep him until his death?
If you feel your CCI dog can continue to work after 8 years then you can continue to be a team. My first service dog worked for 12 years. I retired Noah when I applied for my successor CCI dog. The option at retirement is that you can keep the dog as your family pet now or CCI will take back the dog and usually the puppy raiser will get first choice to keep or live with those that CCI has on a waiting list for a released service dog. Of course Noah, my first CCI hearing dog lived with us until he was ready to cross the rainbow bridge. He truly was an amazing dog. He passed away June 2016. He is missed every day!
CCI is always informed even after retirement of the dog’s passing and any issues as they keep all medical records up to date on all liters.
If a recipient is no longer able care for the dog due to illness or death, does CCI assume care?
If for any reason that the recipient can no longer care for the CCI dog then CCI will take back the dog. Depending upon the situation and timeframe the dog could either be placed back into training for another recipient or given back to the puppy raiser or someone on the waiting list for a released CCI dog.
You will sign a contract agreement with CCI on your last day stating all this.
Regarding healthcare and personal care of your dog, what might a recipient want to know?
You are entitled and allowed by law to write off on his or her taxes anything related to the service dog as part of YOUR medical care. So all vet visits, pet insurance, food, toys, dog beds, medicine grooming, etc. are covered. Even the trip to CCI including airfare/car rental are covered. If you decide to put up a fence, you can write that off as well. It is recommended the recipient get a good accountant and keep all receipts.
If you purchase pet insurance, there is usually a discount for service dogs.
What are some of the activities recipients and their dogs can enjoy to network, get involved and further spread the word about this wonderful organization?
CCI has various presentations that you can attend. Various seminars are held throughout the year that you can attend at your closest region or any region you wish. NJ and NY just recently had a “DogFest” that raised money for CCI. In NY it was held at the Medford Campus and in NJ it was held at the Edison Roosevelt Park.
CCI holds campus seminars that you are free to attend during various times and at any location. Instructors will be there if more help or reinforcements are needed. You can always reach out to CCI and if more additional help is needed they will work with you to make certain that you are always working towards a successful service team.
Is there anything else you feel is important to know before considering taking on the responsibility of a service dog?
Some may say wow! Two weeks of my time… Well it may sound like a lot to you but in reality it really isn’t enough time. You have to remember CCI dogs are learning from day one to be service dogs. For about 2 or 3 years they are being trained for their special roles. You then only get 2 weeks (really 9 days) to make that connection. Classes are intense and long even with breaks. Prepare yourself to the lead up time. Get enough sleep and rest while in training class. Don’t over do it a few days before you leave for team training as you feel it during team training. If there are time zone changes try to arrive a day earlier if available at the dorms to get settled in.
With that said, — be prepared to probably have the BEST thing that has ever happened to you ever when you get teamed with your CCI hearing dog. Your world will forever be changed! Who in the world would think that four paws and floppy ears would be your new lifeline to the hearing world. Can’t even describe the tremendous feeling that will fill your heart!
And oh yeah, be prepared for what I call the “magical fibers” of doggie hair that will soon become part of your home and daily wardrobe! Embrace it!!!
Thank you for being with us today Melanie and Bartram.
If you will be in Southern Westchester on Saturday, November 5, come meet Melanie and Bartram. Melanie will be a guest speaker for the Hearing Loss Association of America, Westchester Chapter www.hlaawestchester.org, Mercy College, Lecture Hall, 555 Broadway, Dobbs Ferry, NY. The meeting begins at 1:00 pm.
For those of you who already have a dog for the deaf, please feel free to share your experience with us by replying below.
This blog is about my own personal experience as a bilateral Cochlear Implant (Nucleus 6) recipient in Charleston, SC (USA). The intention is to chronologically capture details pertaining to post-op, activation, mapping, rehabilitation and acclimation of bilateral CIs to prepare others for this type of hearing solution. All participants are welcomed to share their CI journey to promote local and logistics awareness.