[Diabetes-Talk] AIRA & pump questions

Wed Jun 26 20:18:54 UTC 2019

Believe me, I’ve given all the people I have dealt with at Medtronic a piece of my mind about the importance of them keeping a working pump on the market as well as giving those of us who are blind access to all the functions! They swear to me they are working on something that we’ll be able to use. And even if its the basic functionality I have right now I will be happy with that seeing the way all other manufacturers have gotten out of the field of producing insulin pumps and the discontinuance by Medtronics of the Paradigm series & 530G!

Yes, I am in agreement that the ability to use all the other features would be beneficial to us, its not a deal breaker for me. The thought of going back to having to inject is horrifying to me.

Eileen 

From: Cindy Ray via Diabetes-Talk 
Sent: Wednesday, June 26, 2019 3:59 PM
To: Diabetes Talk for the Blind 
Cc: Cindy Ray 
Subject: Re: [Diabetes-Talk] AIRA & pump questions

It isn’t just on Veronica to “make noise.” That is on all of us.

Cindy Lou Ray
Sent from my iPhone

> On Jun 26, 2019, at 2:46 PM, Veronica Elsea via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
> 
> Gary, how many times do I have to tell all of you that I am making noise and
> I am continuing to try. I had a meeting scheduled with someone last year and
> he died. Okay? I'm trying to find another contact. 
> Veronica
> 
> 
> "Guide Dogs, First Hand", Veronica Elsea's classic album is now available on
> iTunes, along with other music from her and from the Guide Dog Glee Club. 
> To learn more, visit:
> http://www.laurelcreekmusic.com
>                 Veronica Elsea, Owner
> Laurel Creek Music Designs
> Santa Cruz, California
> Phone: 831-429-6407
> 
> 
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
> gary-melconian via Diabetes-Talk
> Sent: Tuesday, June 25, 2019 8:55 PM
> To: 'Diabetes Talk for the Blind'
> Cc: gary-melconian
> Subject: Re: [Diabetes-Talk] AIRA & pump questions
> 
> Veronica, you are in the google neck of the woods.why don’t you make some
> noise about it if there are lots of  these health products that will begin
> to use google products in the future.just saying.  
> 
> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Veronica
> Elsea via Diabetes-Talk
> Sent: Tuesday, June 25, 2019 7:53 PM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: Veronica Elsea <veronica at laurelcreekmusic.com>
> Subject: Re: [Diabetes-Talk] AIRA & pump questions
> 
> I'm not sure what he's up to these days, but the NFB sure wasn't willing to
> name him or use him. I wondered if he was retired by now. But I as an
> individual sure don't have his ear. <grin> However, I know what bus and
> train people take to get to their campus. Heh heh heh heh heh! Don't think I
> won't. <grin> Veronica
> 
> 
> "Guide Dogs, First Hand", Veronica Elsea's classic album is now available on
> iTunes, along with other music from her and from the Guide Dog Glee Club. 
> To learn more, visit:
> http://www.laurelcreekmusic.com
>                 Veronica Elsea, Owner
> Laurel Creek Music Designs
> Santa Cruz, California
> Phone: 831-429-6407
> 
> 
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
> Bridgit Kuenning-Pollpeter via Diabetes-Talk
> Sent: Tuesday, June 25, 2019 7:38 PM
> To: 'Diabetes Talk for the Blind'
> Cc: Bridgit Kuenning-Pollpeter
> Subject: Re: [Diabetes-Talk] AIRA & pump questions
> 
> Voiceover, yes, is what Apple calls its screenreading program. But voiceover
> is also a generic term given to any text-to-speech program. But perhaps
> text-to-speech works best.
> 
> Uh, yeah NFB has connections at Google. Dr. Kurzweile is creative director,
> last I checked. Don't tell me contacting him is the "wrong" department. Like
> he doesn't know who to contact or what to say to get the ball rolling.
> 
> I love the mob idea. Tell me when and wear, and I'm there! LOL!
> 
> Bridgit
> 
> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Veronica
> Elsea via Diabetes-Talk
> Sent: Tuesday, June 25, 2019 9:25 PM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: Veronica Elsea <veronica at laurelcreekmusic.com>
> Subject: Re: [Diabetes-Talk] AIRA & pump questions
> 
> Bridgit, I did make a very valid proposal last year which I have mentioned
> here.
> Many devices are now coming out based on an Android phone, taking out the
> phone part. I wanted to establish a connection with Google's health division
> so that someone could be in a good position to mandate installation of
> TalkBack into every medical system so that the pump programmers could make
> use of it. But personally, I haven't landed on the right contacts yet. 
> Anil Lewis bragged, oh we know people at Google, but it wasn't the right
> division and of course, he never followed up and won't. 
> But you need to be careful about saying installing VoiceOver on pumps.
> VoiceOver is a specific Apple product and unless someone leases it from
> Apple, someone else would have to write the entire speech and gesture
> program from scratch. Even if the basic TalkBack module were installed in
> the pumps, someone would have to program the gestures to match the specific
> functions we need from the pump, all of them. That's not a teeny itty bitty
> task. Someone would have to make sure that it stayed updated as they changed
> the pump, which is proving challenging at times, even with Apple. I'm not
> saying don't do any of these things. I just find it helpful to think about
> the possible gotchyas ahead of time, insuring that the final product would
> work as well as possible. That's why I listed my points to consider with
> Aira.  He would know exactly whom to contact and what to say to get the ball
> rolling on something.
> 
> 
> But honestly, sometimes I fantasize about organizing a flash mob at some of
> these companies or something wild. But partly for my own selfish reasons,
> I'm certainly not giving up on getting access to the information and
> features of the latest diabetes management technology, however it happens. I
> think it's imperative that we have interim solutions while we're working on
> the ultimate goal. We just have to help these companies distinguish between
> interim and final solutions. <grin> Veronica
> 
> 
> "Guide Dogs, First Hand", Veronica Elsea's classic album is now available on
> iTunes, along with other music from her and from the Guide Dog Glee Club. 
> To learn more, visit:
> http://www.laurelcreekmusic.com
>                 Veronica Elsea, Owner
> Laurel Creek Music Designs
> Santa Cruz, California
> Phone: 831-429-6407
> 
> 
> 
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
> Bridgit Kuenning-Pollpeter via Diabetes-Talk
> Sent: Tuesday, June 25, 2019 6:26 PM
> To: 'Diabetes Talk for the Blind'
> Cc: Bridgit Kuenning-Pollpeter
> Subject: Re: [Diabetes-Talk] AIRA & pump questions
> 
> Joyce,
> 
> AIRA is a 24/7 service, grin.
> 
> I'm not saying AIRA doesn't have its uses and should not exist at all. And
> of course, since companies do refuse largely to make products accessible, a
> service like AIRA works for a lot of people.
> 
> My point is that we can't become complacent because of AIRA and Be My Eyes.
> We need to push for true accessibility more than ever before. Both can
> coexist, but we need to ensure us and companies arent' content to just rely
> on AIRA, which does have its limitations. Why have to call AIRA every time I
> need to do something with my pump if I could just do it myself with
> voiceover? Yes, for now, AIRA is here for us, but we need to fight to have
> accessibility with our devices too.
> 
> Computer programmer after computer programmer has said that placing a
> voiceover on insulin pumps wouldn't be difficult at all, and it wouldn't be
> as costly as companies want to complain about. The point is that companies
> will find any excuse to avoid accessibility. Artificial pancreases are
> supposed to be a game changer for diabetics, more so than pumps, but as you
> state, blind diabetics are completely excluded from this device. I think the
> NFB should consider legal action specifically for artificial pancreases,
> just as we have done with kiosks, online banking, BAR exams and a hundred
> other things. Why should our health suffer because we can't access the most
> current technology that will change diabetes?
> 
> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of
> blindhands--- via Diabetes-Talk
> Sent: Tuesday, June 25, 2019 6:15 PM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: blindhands at aol.com
> Subject: Re: [Diabetes-Talk] AIRA & pump questions
> 
> As far as I know AIRA is not available 24 hours a day.  I basically live
> alone.  So a good portion of the day I have no sighted help. My son drops in
> at Supper time and he is available for 30 - 45 minutes a day.  I don't feel
> dependent on using AIRA, but it is great to know it is there if I need it.
> 
> Bridgit
> 
> I have been using a pump only the last 2 years and the Dexcom for the last
> year.  It is the Medtronics pump, but I can tell you it took getting both of
> these devices working together for me to feel at ease.  Now as what was said
> on this list after juggling insulin for 60 years my Hemoglobine AC1 finally
> are at numbers that my Endourologist  and I are happy with.    Since I am a
> brittle Diabetic there is always room for improvement, but I had never been
> down in the 7 or as low as 7.6  in the past.
> 
> With as far as this division has gone and accessibility  isn't happening
> with the pump manufacturers where does that leave us blind pump users.  
> 
> I have heard about some day the artificial pancreas will be available from
> my doctors  in Yale New Haven for the last 50 years.  Well now that it is
> here and only to find out it isn't accessible to a blind Diabetic, I am not
> going to take this sitting down.    I really don't care how it becomes
> accessible, I will take the accessibility  any way I can get it.  Technology
> has jumped insulin pumps ahead and left us blind people behind.  The DAN
> Board has been trying to convince the pump companies to make their machines
> accessible for more than 15 years and it has fallen on deaf ears.
> 
> One way or the other we need to demand that we have accessibility as the
> sighted world.  After all don't we have the right to  reach for keeping
> ourselves as healthy as we  can be since Diabetes is the cause of  so much
> more effecting other parts of the body.  
> 
> Joyce Kane
> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Bridgit
> Kuenning-Pollpeter via Diabetes-Talk
> Sent: Monday, June 24, 2019 9:31 PM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: Bridgit Kuenning-Pollpeter <bkpollpeter at gmail.com>
> Subject: Re: [Diabetes-Talk] AIRA & pump questions
> 
> AIRA isn't the best way to make us independent. It's 24/7 help, but it's
> still sighted help for things that mostly could be made accessible in a way
> that blind people could do it without any sighted help. Forms can be
> formatted for online use; websites can be made accessible; devices can be
> accessible, etc. Sure, until companies get a fire lit under them, AIRA is
> here, but what's the incentive for companies to work on accessibility when
> services like AIRA exist? It's a catch 22. We need accessibility now, but
> now that we have AIRA, companies no longer think they need to think about
> accessibility.
> 
> -----Original Message-----
> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of d m gina
> via Diabetes-Talk
> Sent: Monday, June 24, 2019 8:05 PM
> To: diabetes-talk at nfbnet.org
> Cc: d m gina <dmgina at mysero.net>
> Subject: Re: [Diabetes-Talk] AIRA & pump questions
> 
> Joyce,
> I won't be at convention,
> Mike Henson wrote to me on ira list sharing that what we can't read, ira is
> there for us, and does help us stay mobile in anything we want to do.
> At no time does it make us less independent, if anything it makes us more.
> I do hope and know we will do our best to try to et companies to put in a
> chip for talking meeters.
> If they can do it for devices then what is one more device.
> Do let us know how the conversation works out.
> Thanks again,
> 
> Original message:
>> When this topic came up there seemed to be some chatter along with
> 
> So... In my opinion, it's not the best tool to give us independence. True
> independence would be possible if companies gave a shit (excuse 
> 
> BTW, this is not a negative comment on AIRA but on society in general.
> 
> Bridgitmy French) and worked to make products and devices accessible. And
> now with AIRA, it's not as likely they will.
>> opinions regarding the use of AIRA with a pump.  I said I would make 
>> contact with AIRA and I did.
> 
> 
> 
>> I contacted Glenn Takemoto, , Account Executive andhe told me that 
>> there has been some mention of insulin pumps.  He told me he would be 
>> at Convention in Vegas and he would be interested in speaking to some 
>> of the people who have been working for us blind Diabetic pump users 
>> to get insulin pumps accessible.
> 
> 
> 
>> If anyone is interested in making contact while at Convention, please 
>> send me a note off list and I will send you my conversation with him.
> 
> 
> 
>> Joyce
> 
> 
> 
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> 
> --
> --Dar
> skype: dmgina23
>  FB: dmgina
> www.twitter.com/dmgina
> every saint has a past
> every sinner has a future
> 
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