[Diabetes-Talk] future CGM and pump accessibility

[Bridgit Kuenning-Pollpeter]

Verlyn,

You can certainly send letters and emails to tech companies, but the reality
it's not likely to do much. Blind diabetics have been trying for years to
get fully accessible devices, and it's not happened.

That being said, there's no reason a blind diabetic requires daily sighted
assistance or moving to a care facility to manage their diabetes. I'm
totally blind and independently manage my diabetes. The Dexcom CGM is fully
accessible if using the smart device app. You can also use a Prodigy Voice
glucometer, which is fully accessible and made for blind diabetics. And FYI,
even if using a CGM, you do still need a glucometer to calibrate and for
emergencies if your CGM isn't working for some reason.

Pumps are trickier as current models no longer have work-arounds except
perhaps the Omnipod. Veronica can tell you more about it. Those of us using
pumps have a hard choice in a couple of years; either return to insulin pens
or find daily sighted help for using a pump, which is not an option for many
of us. Pumps use to have work-arounds we could work with to be able to
independently use a pump. While not accessible, many of us made it work. But
as I said, these pumps are no longer being made, and current pumps don't
support nonvisual work-arounds at all.

That being said, using an insulin pen is accessible. I used to use pens
before switching to a pump 16 years ago, and it was accessible. There's a
dial at the end of the pen, and it clicks with each turn, indicating how
much insulin you're dialing up. It varies with each pen and type of insulin,
but when I used them, my Novolog pen was 1 unit per turn. So each time it
clicked, I knew I could count how many units per click.

My husband and I are both blind and have 2 children. We live on our own,
manage work, family and home without sighted assistance. I became blind 16
years ago from an infection, and in that entire time, I've been managing my
diabetes without sighted assistance. The only time I use sighted help with
my pump is when I need to make changes to my basal rates. Otherwise, I'm
able to do everything on my own.

I cook, clean, take care of my kids in addition to work and enjoy my hobbies
and interests. We love to participate in community events and activities. We
go to the gym several times a week. With the holidays upon us, we have so
much planned for our family, including hosting a Friendsgiving in a couple
of weeks where I will make several dishes myself, most from scratch, because
I love cooking and baking, grin. It's completely possible to do these things
without sight. It can take some trial and error figuring out what works best
for your situation, but reaching out to people here and perhaps finding a
local National Federation of the Blind chapter, you can meet other blind
people living active, "normal" lives and discover there's life after
blindness. Connecting with other blind people will help you find tools and
methods to make your life easier nonvisually.

If you have questions or comments, please let us know here.

Bridgit

-----Original Message-----
From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Verlyn
Baldwin via Diabetes-Talk
Sent: Saturday, November 9, 2019 11:24 AM
To: diabetes-talk at nfbnet.org
Cc: Verlyn Baldwin <letsdanceintx at gmail.com>
Subject: [Diabetes-Talk] future CGM and pump accessibility

Hi,

Please advise me as to the best direct ways to make an impact to get the
manufactures to make their CGM's and pumps accessible for all levels of
disabilities.

It has been suggested by my local Medtronic's representative that letters to
Medtronic CEO's would be the best contact.
She suggests this as they are the ones that make the decisions which
upcoming products to focus on. Obviously Medtronic's has many lines of
products in addition to their diabetic line.

Also, another concern I have is my continued care in regards to management
of my diabetes as I become unable to do so independently. My research thus
far has given me two options. 
One to train and hire assistance (which in reality is cost prohibited) or
move to a supportive care facility in Chicago. The later will not allow
occupants to have any other animal than a guide dog. I have had a cat for
several years which assists me in emotional support. This is verified by my
doctors.

Your comments and suggestions are appreciated,

Verlyn Baldwin
letsdanceintx at gmail.com


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