If you’re new to the world of cochlear implants, then you’ve probably been invited to attend a cochlear implant support group meeting on at least one occasion. In theory, they are supposed to be very helpful for those who are considering getting an implant, just recently got an implant, or know someone who is getting or already has a cochlear implant.
I have been invited to the support groups countless times. I always skipped the meetings because they usually interfered with my work schedule. Also, quite frankly, I never felt that I needed to go to one of the support groups. I had the support of my family, my boyfriend, my friends, and even my coworkers. That was more than enough support for me.
However, in the end of April I was invited to one of the support groups and told they were going to be discussing the Advanced Bionics Aquacase. I had just ordered an Aqua Case which was scheduled to be activated later that week. I was about to go to Disney where I knew there was a chance I’d be swimming, so I wanted to make sure I knew everything there was to know about it ahead of time.
However, I ended up being extremely disappointed.
90% of the meeting centered around dementia. It was incredibly depressing. It was all about various studies people have done that show their may be a connection between dementia and people with cochlear implants. However, nothing was ever able to be proven.It also mentioned that those who wear their cochlear have a lower risk of developing dementia than those who have the implant but don’t wear it. Again though, nothing was ever proven.
Another 5% of the meeting seemed to be filled with negativity. People who didn’t feel they were benefitting from their implants. Yet, it was kind of their own fault. Many times people forget that you need to work with your implant. It’s give and take. It takes time to get used to it. You need to practice with it by listening to all kinds of sounds, going over words, etc. If you don’t practice, you’ll never get better.
The last 5% was on what I came to the meeting for — the Aqua Case. It was a very unhelpful presentation. Basically the presenter showed me how to open and close the case, which I already knew how to do.
Overall, it was a very depressing meeting and a waste of my time. Had I have went to this meeting prior to getting my cochlear it may have even scared me away from getting it because I may have been too afraid that it would cause dementia later in life. Not exactly the best message you want to give to someone considering getting an implant. It sounds like someone didn’t think this through very well…
I know that the topics of the meetings change, but I still have a feeling I won’t be back to any more meetings any time soon. I am blessed enough to have an overwhelming amount of support from my family, boyfriend, friends, and coworkers. That has proven to be far greater than any “support” I can get from these so-called support groups…