[Diabetes-talk] Guidance on talking glucose monitor
Tamera
fidano at comcast.net
Sat Apr 3 18:28:29 UTC 2010
Well one thing for sure Mike can't possibly have an understanding is a
woman's hormones and how they affect our diabetes. But again maybe I am
wrong, perhaps he does have personal experience with such.
But it adds a whole extra dimension to fluctuating glucose levels.. and
again, no one woman is the same either.
But if we can share personal experiences and what has or has not worked,
rather then feeling judgment and being criticized for ignorance, lack of
experience or just wanting to get some others perspective on a matter of
dealing with blindness and diabetes... this DAN group might actually be a
good resource.
Tamera
--------------------------------------------------
From: "cheryl echevarria" <cherylandmaxx at hotmail.com>
Sent: Saturday, April 03, 2010 4:54 AM
To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
Subject: Re: [Diabetes-talk] Guidance on talking glucose monitor
> Being a president doesn't make you better, you have only been diabetic a
> few years, maybe you need a little more time to bake awhile on them, I
> have always tried new things before and after going blind.
>
> I think that is why I got along with Ed so good. Life is to short even
> when you live so long. Some people walk ever day living but not enjoying
> there life. Walk around with their heads in the sand and not there face
> in the sun.
>
> Yes you are the President, but at one time you just back John Carey's
> company and when I had an issue with them you told me to get off of my
> soap box when the company was wrong.
>
> A number of times putting people down.
>
> That is not how things work. That is why I love my little chapter here on
> Long Island, even if David Stayer our President disagrees with us on
> something, he is kind enough about it and not make people feel bad, and
> want to leave his chapter or talk list.
>
> To many people have written to me off list and said wow he said that to
> you or did you hear what he said all together I don't write on the list
> but when you posted cheryl you made sense.
>
> If we don't know what is out there how do we compare anything, wait until
> it is okay to do it.
>
> I have been a paid member since 2002 well I am not renewing this year.
> Wait I didn't pay last year, okay well I will not pay this year.
>
> I will stick to the list.
>
> Cheryl Echevarria
> Independent Travel Consultant
> http://Echevarriatravel.com
> 1-866-580-5574
>
> http://blog.echevarriatravel.com
> Reservations at echevarriatravel.com
> Affiliated as an Independent Contractor with Montrose Travel
> CST-1018299-10
>
>
> ----- Original Message -----
> From: "Mike Freeman" <k7uij at panix.com>
> To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
> Sent: Saturday, April 03, 2010 2:35 AM
> Subject: Re: [Diabetes-talk] Guidance on talking glucose monitor
>
>
>> Tamera:
>>
>> If you truly believe you have been put down, I hereby publicly apologize
>> as
>> I also do to Cheryl. In fact, I share the dissatisfaction that you and
>> many
>> others have with bg meters -- but I am dissatisfied with absolutely every
>> one on the market. What you chose to view as "put-downs" was more a word
>> of
>> caution. I think the jury is out as to whether the solo meter is more
>> accurate -- time will tell. If it is and if the firm manufacturing it has
>> not infringed patents -- an allegation I am in no position either to
>> affirm
>> or deny -- I would be the first to recommend it.
>>
>> Like you, I fervently hope that this list does not degenerate into
>> personal
>> attacks; neither I nor David Andrews would tolerate them. But we must
>> make a
>> distinction between expression of opinions -- even unto bluntness -- and
>> personal attacks. But *all* of us must be free to express our opinions
>> frankly and boldly for otherwise none of us will be in a position to
>> learn
>> new things. For instance, I just read in a post on ACB-Diabetics that the
>> Solo Meter claims to have more electrodes on the strip to try to ensure
>> that
>> we don't get erroneous readings from too little blood on the strip. If
>> this
>> is so, BRAVO! I suggested something like this to DDI 2 years ago. And I
>> also
>> (like many others) pointed out that the strip ejection mechanism caused
>> problems.
>>
>> I am in no position to comment upon your readings. AS I say, I'm not
>> satisfied with *any* meter readings of *any* meter. But my experience is
>> that with enough blood on the strip (and I have my lancet set on max), my
>> readings are pretty consistent. When I was trying to use a small sample,
>> I
>> had a helluva time with inaccurate readings and sent an Autocode back
>> because of it before I figured out what was going on. But, like much else
>> in
>> diabetes, Your Mileage May Vary (Y M M V).
>>
>> On another subject, it would be an interesting exercise to figure out if
>> meters and insulin pumps are covered under HR-4533. I haven't seen the
>> actual legislative language so I cannot venture an intelligent opinion.
>>
>> Mike Freeman, President
>> Diabetes Action Network
>> National Federation of the Blind
>>
>> ----- Original Message -----
>> From: "Tamera" <fidano at comcast.net>
>> To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
>> Sent: Friday, April 02, 2010 8:09 PM
>> Subject: Re: [Diabetes-talk] Guidance on talking glucose monitor
>>
>>
>> > Amen again! I left this list 2 years ago because of egotitistical
>> > opinionated response and the reason I came back inquiring about an
>> > update
>> > on
>> > the PV, is exactly my complaint when it first came out and was
>> > proposed...
>> > there were strip issues then and the eject strip mechanism I felt was
>> > a
>> > problem, if not already... on waiting to happen.
>> > Now, Kelly was responsive in getting me updated meters, but I still
>> > have
>> > to
>> > wonder and have had some confirmation on the accuracy of the test
>> > results
>> > from the PV. I have seen plenty of people who did not like the
>> > accucheck/voice mate, but in all God's truth... my a1C's were never in
>> > the
>> > range I get now with the PV, and according to it my testing's average
>> > is
>> > way off the A1C.
>> > Well, sure there can be operator issues but I am alone much of the
>> > time
>> > and I have to base my results on just that the meter, and the results
>> > are
>> > how I dose.
>> >
>> > What might be nice is if a president got some social skill training,
>> > I
>> > don't donate to the DAN, but won't either based on the posts from 2
>> > years
>> > ago and now. It might be a good idea for those who are members to
>> > seriously
>> > consider a network for diabetics is that of those who stay informed but
>> > also
>> > know how to respond without putting you down and degrading you and a
>> > human
>> > being... afterall, isn't that what the NFb is supposed to stand for
>> > So when is the next election for the DAN officers?
>> > no 1 diabetic is the same, we all have various levels of experiences
>> > with
>> > our disease and it varies as much with our singular lifestyles.
>> > therefore..
>> > there is no one resolution for us all... but sure would be nice to be
>> > responded to as credible human beings and get some better
>> > responsiveness, especially from our president?
>> >
>> > to developing a meter that not only is accessible but once again... is
>> > accurate as one might hopefully expect!!!!
>> > Tamera
>> > ----- Original Message -----
>> > From: "eileen scrivani" <etscrivani at verizon.net>
>> > To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
>> > Sent: Friday, April 02, 2010 7:03 AM
>> > Subject: Re: [Diabetes-talk] Guidance on talking glucose monitor
>> >
>> >
>> >> Mike:
>> >> I will address 2 of your messages in this one reply.
>> >>
>> >> First, the PV was promoted all over this list as having the NFB's
>> >> input
>> >> into the design and development of it if I am recalling correctly.
>> >> DDI,
>> >> if I am not mistaken, also were given some kind of
>> >> acknowledgement/award
>> >> at a national NFB convention. I did not say the NFB was given any
>> >> form
>> >> of
>> >> funding or monies by DDI, but if the NFB is promoting themselves as
>> >> having
>> >> played a large part in the PV's development, doesn't it set up in the
>> >> minds of many people how wonderful the NFB is and that they do so
>> >> much
>> >> good? It does work as an excellent public relations promotion and
>> >> image
>> >> builder for NFB.
>> >> I would think, since you've been the one to bring up the subject, the
>> >> two
>> >> images I stated could possibly prompt people to make more donations to
>> >> NFB
>> >> chapters/divisions and that's okay because that's good smart business
>> >> for
>> >> either a for profit corporation or a non-profit charity like the NFB.
>> >> Any
>> >> company/organization will play these things to the utmost for their
>> >> own
>> >> benefit & promotion. That is, however, a very different thing than
>> >> being
>> >> given money by the company developing the meter and I never, never
>> >> said
>> >> that happened! I did say it makes the NFB look good and it does.
>> >>
>> >> ACB, Huh? What does that have to do with anything in this
>> >> conversation?
>> >> Did I mention the ACB in any of my emails? Do you have some kind of
>> >> issue
>> >> with me that I am not aware of?
>> >>
>> >> Going back to some of your other remarks , you seem to have issues
>> >> with
>> >> the new Solo meter, because it wasn't done "under your watch!" Are
>> >> you
>> >> the only blind diabetic?? I think not. From what I have read here
>> >> both
>> >> Cheryl and Vinny have had contact with ADS and would think that both
>> >> these
>> >> people with long-term diabetes would have some excellent input on the
>> >> Solo
>> >> meter's design/development. They too are not the only other blind
>> >> diabetics, but seem to be open to giving encouragement to companies
>> >> that
>> >> want to bring new accessible meters to us.
>> >>
>> >> Isn't it possible that other blindness organizations have had input
>> >> into
>> >> the development of the Solo. There are medical providers that have
>> >> blind
>> >> patients and could have also had some good input into the development
>> >> of
>> >> this meter. The NFB does not know all that has gone into the design
>> >> of
>> >> the Solo. Frankly, so long as I have an accessible glucose meter that
>> >> is
>> >> both accurate and easy to use I could not care less how it came about.
>> >> Do
>> >> you know for a fact if the Solometer company has blind/vi/disabled
>> >> employees? Does it really matter if a blind or sighted person
>> >> programmed
>> >> the meter? What is important is that we, the end-users of the product
>> >> have
>> >> a quality device that does not impact our health negatively. It would
>> >> be
>> >> a good thing to have some say into how a meter works or what it does,
>> >> but
>> >> I have the impression that ADS & Solo are open to input from people
>> >> who
>> >> are using the new meter. What more can we expect with any accessible
>> >> meter?
>> >>
>> >> Oh, excuse me, but since I am only a mere mortal and not an NFB
>> >> Division
>> >> President, I'm only a diabetic of 41, almost 42, years, I can't know
>> >> as
>> >> much as you about these issues and the frustrations a blind diabetic
>> >> faces
>> >> in living with the disease as a blind person for the past 29 years,
>> >> right?
>> >> And, yes, it is my personal opinion that it is a very great disgrace
>> >> that
>> >> the number of accessible meters to blind diabetics has in the time
>> >> I've
>> >> been blind remained at negligible numbers. Again, diabetes is more
>> >> often
>> >> than not promoted in numerous studies, advertisements, and articles as
>> >> being the leading cause of blindness. Taking that into consideration,
>> >> it
>> >> remains shocking to me that there's only 2, maybe 3 companies taking
>> >> this
>> >> into account when developing meter after meter. Sighted diabetics
>> >> even
>> >> have choices into what color they want there glucose meter to be. In
>> >> today's business world, both economic consciousness and political
>> >> correctness are driving factors in what companies do and how they act.
>> >> Decisions to make a product that may not have high market demand,in a
>> >> case
>> >> like this is just "good business" practice. An accessible meter would
>> >> help blind diabetics to maintain good health, & reduce further
>> >> complications. Thus, costs to insurance companies, medicare and tax
>> >> payers would also be reduced.
>> >>
>> >> Eileen
>> >>
>> >>
>> >> _______________________________________________
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>> >
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>>
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