by Joyce Kane
From the Editor: Joyce Kane is a positive person who strives to show the sighted community and blind diabetics that blind people can and do independently self-manage their diabetes. Joyce, like thousands of other blind folks in the National Federation of the Blind, knows that with training and opportunity, she can be independent and fully involved in the mainstream. Joyce Kane is Vice-President of the Southern Connecticut Chapter of the NFB of Connecticut, and Secretary for the Diabetics Division of the NFB of Connecticut.
Congratulations, Joyce, for the work you do in educating those around you about blindness and diabetes. Here's what Joyce says:
I went blind five years ago. I woke up after open heart bypass surgery, to total darkness.
I'd been on the heart-lung machine, of course, while the surgeons repaired the consequences of my diabetic small-artery disease - and there had been insufficient blood supply to my optic nerve. No one knew this would happen. They told me in the hospital the only way they could tell of this condition was by an autopsy, which I declined!
I spent three and one half weeks in the hospital; two of those weeks were spent in a rehabilitation unit. I left the hospital, five years ago, with no information on how a blind person with diabetes could handle self-management of the condition. I had understood this would be my husband and children's job from this point forth. I was leaving the hospital blind, recovering from open heart surgery, and on nine medications. I was 46 years old.
I had a visiting nurse, and in the couple of months she visited me, she taught my family members how to draw insulin and how to run the talking glucose monitor. Still no one offered me information on self-management.
Before I went blind, I had been the one responsible for taking care of my diabetes
management. I'd done this for 30 years. I was the best-trained person for taking
care of myself, for managing my own diabetes, and now I couldn't even draw up
my own insulin, or take all these medications in bottles that I now had no way
of identifying.
It took me another year to learn about the Count-a-Dose tactile insulin-measuring device, from another blind diabetic. This useful tool enables me to draw up, and accurately mix, my own insulins, without sighted aid. I have just received a Novo Pen, for giving myself Novolog insulin. Both of these devices make a clicking sound for each unit that is drawn up, and you can feel the clicking as well.
I have come a long way, and I have learned a lot about self-management of a blind diabetic. There have been some great tools I have found; one is a talking glucose monitor that can even tell you what kind of insulin is in that bottle. The Accu-Chek VoiceMate does that job for me.
What about my other medications? How can a blind person know which pills are in which bottle? People are developing talking pill containers, and I was asked to help with one, to be a "beta-tester," which means I used a prototype and reported back to the designer about any problems or improvements needed.
The device I worked with is called the Talking Rx. It holds a one-minute recorded message, and your prescription bottle sits atop it. With a push of a button, I now know what medication is in the bottle, how and when I should take the medication, the script name and number, the pharmacy, and the pharmacy's phone number. In the last two years, since I first received my Talking Rx, I am now totally back in control of my own medications. I even call in my refills and just play the Talking Rx for them, over the phone.
The biggest thing I had lost, five years ago, was not my sight, but my independence! Each of these things I speak of here has given me back a piece of that precious independence.
In January, 2002, I went up to the Connecticut state Capitol and testified in front of the Legislature, working to convince them of the need for insurance companies to cover the expense of talking prescription bottles for the visually impaired.
I am determined to educate people and medical professionals about devices like these. I have gone to diabetic support groups, nurses in towns, spoken to doctors involved in diabetic awareness events, and have had the opportunity to lecture to pharmacy students at the University of Connecticut and Northeastern University in Boston. If, in the future, they can help someone care for their own diabetes and blindness because they remember my words and the tools I showed them, then I have accomplished something.
When I went blind, there was a real lack of information about self-management
of a blind diabetic. This is something I am working to change. I have started
an information group meeting for all diabetics, on the Internet. It is held
twice a week on the audio-tips Talk Rooms. This is a place where you do not
have to know how to type, just pick up a microphone and speak. I hope to have
some guest speakers, to let you know about diet, new tools, and maybe a peek
into research. Maybe we can even get Ed Bryant, VOICE OF THE DIABETIC editor,
to talk to us about the VOICE. Check us out at http://www.audio-tips.com.
I started it the first week of last December, on Mondays at 3:00 PM and again
at 8:00 PM, Eastern Time.
I was determined from the beginning that my blindness would not get the best of me and so far so good. Independence is precious.