[Diabetes-Talk] Pumps and accessibility
Bernadette Jacobs
bernienfb75 at gmail.com
Wed Jan 4 15:41:56 UTC 2017
Good morning everyone
Let me say firstly, that I stand corrected. I guess, what I was really getting at, though, is often times when doctors tell us we have a diagnosis, they make it sound helpless like if they can't do anything then no one else can either. If they want to give you a hopeless diagnosis, they should tell you where you can get help. They don't half to give names of people or break confidentiality. But they can at least give you organizations or groups of people that can help you. If a doctor tells you are a rip tells you that blind people are using their pumps, they should tell you who you can contact for help. They should just tell you, "oh well people use our products all the time." Then they just drop you off and expect you to sink or swim. Most people would have no clue as to where to go. Quite frankly, I'm thrilled that Jamie contacted us to ask. Although I can't answer all the questions, and I never claimed to, there are many of you who can and I have learned from you. This is exactly my point. I may have stated my case wrong Yesterday, and I honestly apologize for that. It's just that my point is, if people talk to to us about pumps, they should be able to tell us where to get help if they can't help us. That would be the professional thing to do. However, seems to sum, doesn't make any sense to do that. Or, simply, they can't. But they really should. That's my point. And I'm sorry if anyone is angry. Have a great day.
Bern
Sent from my iPhone
> On Jan 3, 2017, at 2:24 PM, Bridgit Kuenning-Pollpeter via Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:
>
> Yes, me too. My A1-Cs were all over the place, despite my trying. Then I
> went on the pump, and they have remained pretty stable and in a good range.
> In 12 years, the highest A1-C I've had is 7.5.
>
> Off topic, but weirdly, when pregnant, I experience the best A1-Cs ever. Any
> other mommys experience this? With both my pregnancies, I have gotten my
> A1-C way down, usually ending up around 6. Not sure why this is, smile. My
> doctors find it interesting too.
>
> BTW, seven weeks to go before baby number 2 arrives, smile.
>
> Bridgit
>
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
> Veronica Elsea via Diabetes-Talk
> Sent: Tuesday, January 03, 2017 12:42 PM
> To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
> Cc: Veronica Elsea <veronica at laurelcreekmusic.com>
> Subject: Re: [Diabetes-Talk] Pumps and accessibility
>
> At the risk of one of those dreaded one-word replies on a list, Amen! <grin>
>
> Before going on the pump, I spent my first three years as a type 1 with an
> A1C hovering between 13 and 16. I was already blind before diagnosis. Within
> two month of going on my first pump, I had it down to 7 and I've never
> looked back. For some reason insulin just never seemed to obsorb like it was
> supposed to do. So I'll continue to fight through the current state of pumps
> and do the best I can. And by golly, if sighted people deserve the
> convenience of having the pump figure things out, then so do I. <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, January 03, 2017 10:33 AM
> To: 'Diabetes Talk for the Blind'
> Cc: Bridgit Kuenning-Pollpeter
> Subject: [Diabetes-Talk] Pumps and accessibility
>
> While I completely agree with you, Bernie, and it's totally true that no
> pump is fully accessible, I do think the comments made to Jamie were not
> that a blind user can use the pump never requiring sighted assistance, just
> that blind users do use their product, and are experiencing success managing
> their diabetes.
>
> I will say that the only time I require sighted assistance for my pump (and
> for what it's worth, I'm totally blind) is when adjusting basal rates, and
> that only happens maybe quarterly, and that's based on me. For other
> diabetics, basal adjustments could happen more or less frequently, but for
> me, so far, this is the only assistance I have with my pump.
>
> Wait, I do prefer to have sighted help filling cartridges. I do it on my own
> if need be, but I do prefer sighted help. I know Veronica fills her
> cartridges on her own though. I will have someone fill about a month's worth
> of cartridges for me at a time though. And for me, a cartridge last about a
> week.
>
> It's ultimately a personal choice to use a pump or not. Some have found the
> benefits immense, others, not so much. Some start on a pump and eventually
> go off it, not enjoying it as much as they originally thought. For me, the
> pump has given me the best control over my diabetes ever. I've been type 1
> diabetic for 31 years now and using a pump for 12 years. I started using a
> pump after I lost my sight. I love the insulin pump, and it has helped me
> better manage my diabetes. My husband is blind, and I do not have sighted
> assistance whenever I need it. So accessibility is important and crucial for
> me, like most of us. Despite the lack of accessibility that should not be so
> difficult to implement on a pump, I have made it work for several years now
> and I don't often require sighted assistance.
>
> I know this discussion goes round and round, but I feel like there has to be
> something we can do as a collective to make accessibility in medical devices
> more of an important issue than it is. Not sure what answers exist, and I'm
> sure it will take a lot of hard work, but it seems we need to be more
> proactive as a group to make accessibility in the forefront for
> manufacturers.
>
> Okay, my rant for the day, grin.
>
> Bridgit
>
> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
> Bernadette Jacobs via Diabetes-Talk
> Sent: Tuesday, January 03, 2017 8:50 AM
> To: Jamie Gurganus <jamielgurganus at gmail.com>
> Cc: Bernadette Jacobs <bernienfb75 at gmail.com>; Diabetes Talk for the Blind
> <diabetes-talk at nfbnet.org>
> Subject: Re: [Diabetes-Talk] Your new president...
>
> Jamie, my friend.
>
> Don't let any foolish pump wrap tell you that other blind people are using
> their pumps successfully and independently. There is not one totally
> accessible pump out there! And that's a fact! Even Veronica and Bridget and
> other blind pump you service out here will tell you the very same thing. My
> doctor has been wanting me to use a pump for years and years. Haven't found
> One that's totally and completely accessible yet. My husband agrees with me.
> He tells me the same thing. He says, honey there's not one accessible pump
> out there and I don't want you to go on a pump until there is. We may have
> to bite the bullet at some point, however. And when I do, the first thing I
> will do is post right here. You, my friend, are in touch with the best. So,
> still, don't let anycompany's pump REP Tell you that other blind folks are
> using their products successfully. Because there's not one of us out here
> The can't do something without sighted assistance. And that's a fact. Have a
> great day!!
>
> Bern
>
>
>
> Sent from my iPhone
>
>> On Jan 3, 2017, at 8:51 AM, Jamie Gurganus <jamielgurganus at gmail.com>
> wrote:
>>
>> Veronica,
>>
>> I am a new subscriber to this site and found it while searching for
>> other diabetics who are blind and use insulin pumps. Much like you, I
>> have been independently using an insulin pump for 18 years. I am
>> currently using the Accucheck Spirit, but Roche suddenly chose to not
>> sell any of their Accucheck pumps any more. And, like your Cosmo, my
>> Spirit has about a month left before completely shutting down on me.
>> I did visit my Diabetic Educator and looked at the options for pumps.
>> I also decided that the Animas products would be the best, although
>> not
> the perfect solution for me.
>> I also use the Dexcom G5, which my two teenagers help me use. Even
>> though it is inaccessible to me, I need to use it to help me detect my
>> llow blood sugars. I use my iPhone to know what my blood sugar is
>> when it
> alarms me.
>>
>> So, you and I are going to be learning how to use the Vibe together!
>> It will be a true test of how well I can memorize things at my age! I
>> hope that we can keep in touch and share our experiences of how we
>> are conquering our new pumps! The Animas rep assures me that they
>> have other individuals who are blind or visually impaired and
>> successfully using their pumps. However, he could not tell me how I
>> could contact these people. I am hoping to find help through Diabetes
> Talk.
>>
>> Jamie
>>
>>
>>
>> -----Original Message-----
>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On
>> Behalf Of Bernadette Jacobs via Diabetes-Talk
>> Sent: Tuesday, January 03, 2017 7:15 AM
>> To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
>> Cc: Bernadette Jacobs <bernienfb75 at gmail.com>
>> Subject: Re: [Diabetes-Talk] Your new president...
>>
>> Thanks Veronica!!!
>>
>> I certainly have to say, you and Bridgit have both taught me so very much.
>> I can't imagine myself using a KNFB reader for something like that.
>> Although I do love my KNFB reader, it doesn't come without its
>> limitations either. And, believe me I had to practice using it to
>> make it
> work for me.
>> I'm not perfect yet. I can use it to read some of my mail and the kids'
>> notices they bring home in their bookbags.
>> But, I'm not sure I'd attempt to use it fore reading an insulin pump?
>> I think I'd rather have something a bit more fool-proof. I'm not that
>> brave. Especially when my survival is at stake. Scary.
>>
>> Talk soon my friend and thank you so much for your vote of confidence.
>> This means a lot.
>>
>> Bern
>>
>> On 1/2/17, Veronica Elsea via Diabetes-Talk <diabetes-talk at nfbnet.org>
>> wrote:
>>> Bern, I echo the bitter-sweet congratulations. I assure you that we
>>> do not expect you to be Mike. <grin> I look forward to seeing how
>>> this list and organization will grow under your leadership. And yes,
>>> a definite group effort.
>>> I also look forward to seeing what the new technology will do. In the
>>> meantime, I am checking out the current pumps as my beloved Cozmo
>>> finally shrieked out its last system fault alarm. Yikes! Someone here
>>> mentioned awhile back that there was a blind person using an OmniPod
>>> with some sort of app. I found out that he was actually using a KNFB
>>> reader to try and read the screen. I'll probably end up with the
>>> Animas Vibe but I'm struggling to get around that notion of how much
>>> I'm losing compared to what I had.
>>> As for the artificial pancreas, I hope the technology it's based on
>>> is more accurate than what we have now. Eventually it would be nice
>>> to have to interact less with stuff, but I'm not so sure I want to be
>>> in the first round. <grin> Never say never though.
>>> In the meantime, boy do I appreciate having a place to share
>>> knowledge, to vent, to brag, to whine and to help each other. I
>>> really do appreciate all of you and look forward to accomplishing as
>>> much as we
>> can together.
>>> Onward,
>>> onward! Count me in!
>>> 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 Bernadette Jacobs via Diabetes-Talk
>>> Sent: Monday, January 02, 2017 8:45 AM
>>> To: Diabetes Talk for the Blind
>>> Cc: Bernadette Jacobs
>>> Subject: Re: [Diabetes-Talk] Your new president...
>>>
>>> Oh Bridgit!
>>>
>>> Thank you so kindly for your vote of confidence!! You're like a
>>> breath of fresh air!
>>>
>>> Only trouble is, for Medicare patients, I think that these things are
>>> so hard, as a matter of fact, too hard to get. You shouldn't have to
>>> go through denials and appeals and denials and appeals. Too bad the
>>> system is so broken!! We should not have to fight this hard to
>>> survive. Just makes me sick!! However, I will be anxious to hear more
>>> about the artificial pancreas. I'm always anxious to hear more when
>>> it comes. Talk very soon.
>>>
>>> Bern
>>>
>>>
>>>
>>> Sent from my iPhone
>>>
>>>> On Jan 2, 2017, at 9:50 AM, Bridgit Kuenning-Pollpeter via
>>>> Diabetes-Talk
>>> <diabetes-talk at nfbnet.org> wrote:
>>>>
>>>> Bernie,
>>>>
>>>> Congrats, even though it's a bittersweet congratulations. You will
>>>> do a fantastic job.
>>>>
>>>> On a sidenote, speaking of sharing and learning from each other, I
>>>> just
>>> want
>>>> to say that my doctor continues to bring up the artificial pancreas
>>>> and
>>> how
>>>> it will be available on the market within the year to all diabetics.
>>>> He believes this will revolutionize diabetes even more than insulin
>>>> pumps
>>> have.
>>>> He's eager and excited for the technology and for me to have the
>>> opportunity
>>>> to transition to one. Of course, I'm concerned about accessibility,
>>>> but nonetheless, this is exciting news, and I'm sure many of us are
>>>> excited about this technology.
>>>>
>>>> The device will use a CGM to constantly monitor blood sugars. As it
>>>> does this, it will automatically adjust insulin as needed. Little
>>>> interaction will be necessary for the device.
>>>>
>>>> More info about this is available online, but as I learn more, I
>>>> will continue to share.
>>>>
>>>> Happy New Year; may 2017 be fruitful for everyone.
>>>>
>>>> Bridgit
>>>>
>>>> -----Original Message-----
>>>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On
>>>> Behalf Of Bernadette Jacobs via Diabetes-Talk
>>>> Sent: Sunday, January 01, 2017 1:26 PM
>>>> To: diabetes-talk at nfbnet.org
>>>> Cc: Bernadette Jacobs <bernienfb75 at gmail.com>
>>>> Subject: [Diabetes-Talk] Your new president...
>>>>
>>>> Good Afternoon Everyone!!!
>>>>
>>>> Happy New Year!!!
>>>>
>>>> Firstly, I'd like to begin by telling you a little bit about myself
>>>> for those of you who don't know me. I'm aware, however that most of
>>>> you
>> do.
>>> I
>>>> am Bernadette Jacobs, formerly, about 18 years ago, Bernadette
> Krajewski.
>>> I
>>>> have been first vice-president now since, I believe, about 2007.
>>>> Don't hesitate to correct me if somebody out there finds me to be
>>>> wrong. At any rate, I did have a one-year break while Sandy Ryan
>>>> served just last year--2015-2016. Thank you Sandy.
>>>> Since the unfortunate passing of our illustrious and fearless leader
>>>> Mike Freeman's passing, I will do my best to serve you as our
>>>> Diabetes Action Network's president and your list moderator.
>>>>
>>>> I will warn you. I can't do this all alone, however. I need all of
>>>> you
>>> to
>>>> work with me and teach me as you have done about our conditions for
>>>> the
>>> past
>>>> so many years. Most of what I have learned about my own diabetes,
>>>> I've learned from all of you. You've been so gracious. But that's
>>>> what we're
>>> in
>>>> this thing for. Right???? Helping each other and taking care of
>>>> each other. So, I'd like to say, Welcome home and Happy New Year!!!
>>>>
>>>> I was diagnosed as a type II diabetic in about March of 1985. This,
>>>> of course, was before the age of "pre-diabetes." I have been
>>>> insulin
>>> dependent
>>>> since 1999 when My husband Bill and I were first married and I
>>>> became pregnant with the baby we lost in miscarriage. I have been a
>>>> member of
>>> the
>>>> Diabetes Action Network, (DAN) since its inception in 1985.
>>>>
>>>> My mother was a diabetic and I lost my mother to complications of
>>>> diabetes at the tender age of 13. She, herself was only 47. She
>>>> had three heart attacks, the third of which, resulted in her
>>>> passing. I remember it as if were Yesterday. When I came into DAN,
>>>> I told it's then president, Ed Bryant, that my mother was a diabetic
>>>> and died of complications. He gave
>>> me
>>>> that gentle kick in the seat of the pants, "And you are diabetic too..."
>>> Of
>>>> course, he also recognized I was in that old familiar river, "Denial???"
>>> Ed
>>>> Bryant, the gentle man he was, took me under his fatherly wing and
>>>> we
>>> worked
>>>> together up until his passing. Mike came in and we all continued on.
>>>> I must say, that his passing on December 24, shocked and deeply
>>>> saddened me just as it has everyone else.
>>>>
>>>> Now, everyone, I'd like to take this time to thank you!! For, it's
>>>> all of you who've taught me so much about the conditions that we
>>>> share together.
>>>> Taught me about insulin pumps, complications, and the heartaches
>>>> we've suffered together as well as foo the positive bits of news.
>>>> There are so many of you that I simply can't wait to hear about
>>>> something new you've learned, discovered and/or whatever else. It
>>>> simply warms my heart to the moon and back to hear from you as I
>>>> feel like we're such a great big
>>> family.
>>>> Isn't it wonderful??? I think it's phantabulous!!! SQUEEEEEZE!!!!!
>>>> i DO hope that all of you will continue to write in with all your
>>>> things, both good and bad so that we can all continue to share,
>>>> learn, and work
>>> together.
>>>> I'll miss you if you don't!!
>>>>
>>>> Until next time, take care and have a great day!!!
>>>>
>>>> Below, I'll be posting my Email, so that you can write me offlist
>>>> for anything strictly confidential you might need help with. I will
>>>> then
>>> share
>>>> my cell phone with you that we may continue our work together.
>>>>
>>>> Very Warmly,
>>>>
>>>> Bernadette M. Jacobs, (Bernie, Bern).
>>>>
>>>> _______________________________________________
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>>> r
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>>>>
>>>>
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>>>
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>>
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>
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