Looking Back

It has definitely been some time since I last made a posting on this blog. Things are happening so fast now!

When I look back on this whole process, I wonder what decision we would have taken had we known what a difficult journey all this was going to be. Just last Saturday I realised how stressful all this uncertainty and all this waiting has been on us, when Ivan started feeling extremely tense (Which is so unlike Ivan as he is generally the one who is in control of thingsL )

I feel that a lot of this was completely out of our control. We were at the mercy of the hospital staff and other general events. For example, we have not yet received a formal date for the operation, yet we have been told when it is going to be on the phone. The number of setbacks that we have had in this process was quite significant, and very very discouraging at times.

I know that at times I was a total pest phoning up the hospital and the CI Programme inquiring about the state of the progress of this operation. However the staff has been so helpful and supportive.

However I want to dedicate this posting to special family members and special friends who have shown TOTAL support. I have to say that most people who knew what we were going through had words of support for us, however some people really stood out in all of this. This journey would have been so much harder without their support. I also appreciate the support Ivan got from the Maltese deaf community. Some of these people are in principle against cochlear implants; however they still had good wishes for Ivan. Also the members of the Maltese cochlear implant group in Malta have simply been absolutely great. I cannot thank them enough for the messages of support that they gave me. It is people like these that make difficult times a little more manageable.

I am so happy for Ivan that he has got this opportunity to improve his situation!!!! Although this operation will not change any of my feelings for him, I am really looking forward to a very exciting ‘hearing’ phase of Ivan’s life. He really deserves this chance. In the meantime….I will try to stop looking at the calendar and counting the days to the operation.

I just read this mail on a forum - the Nucleus CI forum, available at forum@nucleusci. com and I thought I'd share it with people via this blog.

"I just heard that Cochlear will announce today at the Alexander Graham Bell Association for the Deaf and Hard of Hearing Convention the release of the Next Generation of Nucleus Freedom and FDA approval of Nucleus Freedom for N24 recipients (not yet approved by Health Canada)! N24 recipients will get packets of information in late July telling them how to upgrade to the Freedom. Also to be announced is information about the next generation of the Freedom which will offer disposable and rechargeable power and a new Mini BTE (behind the ear) in addition to all the other great things the current Freedom offers. "

Sounds interesting, especially the Mini BTE, as most Cochlear Implant speech processors are a bit bulky. What is also of interest is the mention of the rechargeable power packs, which are expensive at first purchase but give you about 2-3 years of service. I won't vouch for the veracity of this statement but if it is true, it's VERY interesting.

I Wonder...

Should I take my CD with Cavatina on it when I go for the switch on? Or shouldn't I? I would like to try out some music while I'm there, especially familiar music (it's important to make use of familiar sounds) - at the same time I'm afraid of a crushing disappointment should I not be able to follow it.

I haven't listened to any music for almost 3 years - it hurts too much to even try as I know it is a task doomed to miserable failure. I can honestly say that of all of the things that my hearing loss has savagely taken away from me, this is the biggest loss. Music was so much part of my life, even as my hearing started dying out on me and my inner ear ciliae started misfiring and fading away into nothingness.

I realised that my hearing was fading even more when I started straining to pick up new music, then I was just reduced to listening to just familiar music, then to music with a particular tempo and beat, now... nothing. I have a collection of CD's just gathering dust - I can't help wonder how many of them will actually be used once I'm implanted.

On one hand, I'm anticipating listening to the hauntingly beautiful melody, which was written by Stan Myers for the film, The Deer Hunter. On the other, I'm petrified that I might just end up with a vague, garble of sound like I do now when I listen to it. I tried to hear it a couple of months back when I borrowed a DVD of the film from a friend, and it broke my heart when all I got was, well, a sludge of of vaguely familiar sound that my brain desperately tried to fill in, from memory, with the actual sound of the music. When I closed my eyes and imagined I wasn't deaf anymore, I could imagine I was picking up the individual plucks of the chords and strumming of the strings - I could even imagine I was hearing the knuckles of the guitarist as he moved his fingers rapidly over the strings and the squeal of his fingers as he moved them up and down the strings on the fretboard.

The Deer Hunter happens to be my favourite film of all time and includes some of my favourite actors - including De Niro who is my number 1 favourite. It's beautiful, shocking even today let alone when it was released, and wonderfully acted, especially by De Niro and Streep.

Operation Date

I finally got my operation date! Mandy called the Cochlear Implant Centre secretary this morning, and she confirmed that my operation will take place on the 9th of August. I'm overwhelmed that it's so close, we booked our seats on the flights, and we're already set to go.

The only problem is that it will be in the peak travel time for tourism, and we had to book club class tickets for the outbound trip, with the return the usual economy. Flight tickets aren't exactly cheap at the best of times, and this makes them even more expensive. At times I feel a bit guilty that I'm burdening Mandy and Maria with these hefty expenses.

Mandy is, of course, over the moon with joy. She really wants this for me, she's my biggest supporter and I know I wouldn't have got this far without her. Anyway, we'll see how it goes, I'm going to keep my eyes very well opened for the information package that will come with the post!

Articles in the Times of Malta

I thought I'd add a couple of links to articles I found some time back in the Times of Malta, which is Malta's highest distribution newspaper. Joanne Bugeja and Doris Camilleri are both very much involved in the local Cochlear Implant Association.The story in this newspaper about their children can be found here.

The information about cochlear implantees in Malta, albeit rather dated, is to be located here.

The local association can be found at the following address:

9 Hospital Alley,Mqabba, MALTA
Phone : (+356)2168 9361
Fax : (+356)2168 3183

Large grant for CI Reseach

University of Iowa News
June 7, 2006
Iowa Cochlear Implant Clinical Research Center Receives $10 Million NIHGrant

The Iowa Cochlear Implant Clinical Research Center (ICICRC) at theUniversity of Iowa Roy J. and Lucille A. Carver College of Medicine hasreceived its fourth consecutive grant renewal from the National Institute onDeafness and Other Communication Disorders, part of the National Institutesof Health (NIH). The cutting-edge research supportedby this long-running grant has made the ICICRC one of the world's premier centers for cochlear implant clinical research.
The five-year, $10 million grant renewal will fund ongoing basic research, clinical trials and clinical outcomes research on cochlear implants in children and adults by researchers from the UI Carver College of Medicine and the UI College of Liberal Arts and Sciences Department of SpeechPathology and Audiology.

The center was established in 1985 when cochlear implants first became available and is directed by Bruce Gantz, M.D., the Brian F. McCabe Distinguished Chair and UI professor and head of otolaryngology - head and neck surgery, and Richard Tyler, Ph.D., UI professor of otolaryngology -head and neck surgery and speech pathology and audiology.
"The long-term NIH funding, now totaling $38 million over 25 years, allows ICICRC researchers to translate basic research on the auditory system into new cochlear implant technologies that improve speech understanding foradults who have become deaf as well as infants who are born deaf," Gantz said.

Gantz noted several important achievements that the center's multi-year studies have yielded: developing the "hybrid" cochlear implant that combines acoustic with electrical hearing; developing technology that allows measurement of auditory nerve response; pioneering the use of bilateral implants, which is becoming the standard of care; and improving music perception for implant users.

The hybrid implant, which uses electrical perception of high-frequency sounds while preserving a patient's residual acoustic hearing of low-frequency sounds, was developed at the UI and grew out of basic research funded by the grant. One-third of the 65 patients who have received these new cochlear implants nationwide have had the operation at UI Hospitals and Clinics.

"The hybrid implant can help a much larger population than the original cochlear implant because it can be used in individuals who have some residual hearing without destroying that ability, for instance those who have severe noise-induced hearing loss and those with severe high-frequency hearing loss due to aging. Both types of hearing loss are widespread in farmers and our aging population in Iowa," Gantz said. "By preserving residual acoustic hearing and combining it with electrical speech processing provided by the implant we can bring the patient's word understanding up.Preserving residual low-frequency hearing also allows the patient to retain music appreciation and to hear better in noisy settings," he added.
Gantz said the hybrid implant also will be useful for children who may have lost their high-frequency hearing because of chemotherapy for tumors, or children born with high-frequency hearing loss. Without being able to hear high-frequency sounds, these children cannot learn to speak clearly. The hybrid electrode may even allow patients to take advantage of potential future advances in regenerative medicine.

"Preservation of the inner ear is going to be important in the future because we think we will eventually be able to regenerate the inner ear,"Gantz said. "By putting a short electrode in an infant we may be able to safeguard the progenitor cells until such a time that the research enables us to use those cells to regenerate inner ear function."

A goal of the ICICRC is to refine the criteria for identifying patients who would benefit from the hybrid implant. Another fundamental advance produced by UI studies is known as the neural response telemetry system. This system, which allows measurement of the residual nerves in the ear, was developed at the UI and now is standard in all three FDA-approved cochlear implants.

"It lets us stimulate the hearing nerve and then measure the residual activity of the nerve through the implant," Gantz explained. "This helps us to 'set' the implant in young children. It also helps us measure the long-term effects of electrical stimulation on the auditory system to see if the residual neural function changes over time."

Gaining a better understanding of how the auditory system responds toe lectrical stimulation over time is an important component of the researchgrant. The UI team will follow 372 previously implanted adults and children and recruit over 100 new adults and children to look at the long-term impact of electrical stimulation on the auditory system.

UI researchers also have pioneered the use of bilateral cochlear implants --implants in both ears. Studies have shown that children given one standard cochlear implant can develop normal speech and hearing. Implanting a second device in the other ear helps with localization and hearing in noisy environments. Ongoing research will examine the advantages of bilateral implants in adults and children and of combining a standard implant in one ear with a hybrid implant in the other.
Another research project that promises future benefits is an effort by UI scientists to improve music perception and appreciation for implant users.

Researchers also will study speech in noisy settings and will investigate whether lowering the age at which infants receive an implant, from one year to seven months, improves speech and language development.
In addition to Gantz and Tyler, principal investigators on the ICICRC grant include Paul Abbas, Ph.D., professor and chair of the Department of Speech Pathology and Audiology and professor of otolaryngology - head and necksurgery; Carolyn Brown, Ph.D., professor of speech pathology and audiology and otolaryngology - head and neck surgery; Kate Gfeller,Ph.D., professor of music and speech pathology and audiology; Bruce Tomblin,Ph.D., professor of speech pathology and audiology; Christopher Turner,Ph.D., professor of speech pathology and audiology, and otolaryngology -head and neck surgery; and Marlan Hansen, M.D., assistant professor ofotolaryngology - head and neck surgery.

University of Iowa Health Care describes the partnership between the UI Roy J. and Lucille A. Carver College of Medicine and UI Hospitals and Clinics and the patient care, medical education and research programs and services they provide.

Visit UI Health Care online at www.uihealthcare. com.

STORY SOURCE: University of Iowa Health Science Relations, 5135 Westlawn,Iowa City, Iowa 52242-1178

CONTACT: Jennifer Brown, 319-335-9917 jennifer-l-brown@ uiowa.edu

BBQ Chicken

Well, nothing much to report, to be honest. Nothing has happened since the inoculation I had a couple of weeks back, and I don't expect much to happen over the next few weeks either (unless I get very unusually lucky, which I'm not!)

Anyway, in Malta it's BBQ season. We like to spend summer evenings swimming, drinking beer, and having barbeques with our friends and families. We're no different! Guess who ends up doing the cooking, but anyway...

I thought I'd add a post on the blog for a recipe I use for barbeques. It's quite nice, relatively sweet but not sticky.

2 Chicken breasts, divided into two and split open

2 tablespoons soy sauce

2 teaspoons honey

1 tablespoon red wine vinegar

3 tablespoons Red Vermouth (you can also use rice wine)

1 clove garlic, crushed

1 heaped teaspoon fresh ginger, grated

fresh ground pepper

Dash tabasco sauce

Pop the chicken into the marinade, making sure to turn it around in the marinade. I normally marinate for 24 hours.

Pop it onto the barbeque over medium coals, cooking it for about 12-15 minutes. brush frequently with marinade so the chicken remains tender.

Amy

You may have read about my recent inoculation against pneumococcal meningitis.

The following story put things in their right perspective and illustrates the reason why I really wouldn't consider doing the operation without this injection. My heart went out to this young lady, and I had to put this on my blog. My work's charity fund, which I am involved in, has donated a sum of money to her, and I urge you to donate something for her too, even if it is a small amount.

There is a very sad, moving story about a young lady called Amy, here in Malta, who ended up getting this terrible disease. Doctors made a very negative prognosis but against all odds she survived, albeit requiring the amputation of her legs below the knees and her fingers too.

The story is here. http://www.di-ve.com/dive/portal/portal.jhtml?id=232679

If you would like to help her, send an SMS (obviously from Malta) to:

For a Lm1 donation: 50617353 or

For a Lm2 donation: 50618067