Severley Visually Impaired Diabetic

[Ca2910]

Hi,
I would like someones suggestion/opinion on the following.

I am type one diabetic on Humalog 200u/ml and Tresiba 200u/ml.

I am registered as blind (Not due to diabetes) and cannot see my insulin pen and my diabetes nurse has tried one pen magnifier that does not seem to work with my pens and she says they do not make any more types and that she recommends I count the clicks.
I have magnifiers from my hospital eye department however they do not work as the pens are curved and it distorts the numbers; my magnifiers work on electronic displays.

I currently have district nurses involved however they are deciding not to come as both DN and DSN have suggested I count clicks for each unit of insulin I give however I need high doses due to insulin resistance ( 78 UNITS Tresiba and 20-30 UNITS Humalog each meal plus correction doses)
They pulled my care package last weekend and I ended up in hospital as I could not count the clicks - I have come home yesterday and district nurse manager visited this morning and said I still need to carry on with the click method as there isnt anything they can do.

How do others manage with their diabetes and visual impairments ?

I live on my own and do not have anyone else to help me.

Does anyone have any suggestions or ideas as I really am at a loss and I want to be independent as I am only 19 years of age.

Connor

 

[ringi]

@tim2000s Do any pumps have a "voice interface"? Is anyone using a closed loop system using a "scream reader"?

 

[Ca2910]

@tim2000s Do any pumps have a "voice interface"? Is anyone using a closed loop system using a "scream reader"?

Hi Ringi, Thank You.
I did discuss an insulin pump with my diabetes team but it seems to be a question of them saying its harder work and more expensive and that I would need to gain control on pens before I Can be considered for anything like that.

It does frustrate me as I struggle to get control with pens as my vision is really bad - thank you again

 

[Antje77]

There are insulin pens with a flat electronic display on the top, like the novopen echo. I guess that would mean switching to novorapid or fiasp for your mealtime insulin, but it might be worth it, even when going back to U100 insulin instead of U200.
I don't know if there are any options for long acting insulin, but even if you can be independent with your short acting it might make a big difference in your daily life.
Good luck!

 

[Jaylee]

Hi @Ca2910 ,

Swapping the pen design to accommodate visual impairment & the challenges you describe would also annoyingly mean changing insulin. None of these manufactures seem to do "universal" cartriges & pens?
Have a look at the ClikStar basal pen from Sanofi.

The lense for the unit read out is flat, compared the convex nature of some pen read out lenses.
Sitting flat whith in the pen body. You might find a magnifier will enhance the readout without the bullseye cover distorting the image?

Hope this helps?

 

[Ermintrude775]

I can't remember where I saw it. Might have been on the shop on the diabetes.co.uk website or diabetes.org You can get a device that fits onto the end of your pen that works as a reminder for when you last took your insulin if I remember correctly it was a flat electronic display. Would this be of any use ?

 

[Ermintrude775]

Went and had a look. They were easy to find. https://www.diabetes.co.uk/shop/pens

 

[ringi]

Can you use a smart phone?

 

[NicoleC1971]

Hi Ringi, Thank You.
I did discuss an insulin pump with my diabetes team but it seems to be a question of them saying its harder work and more expensive and that I would need to gain control on pens before I Can be considered for anything like that.

It does frustrate me as I struggle to get control with pens as my vision is really bad - thank you again

Hi Ca2910, this sounds like a dangerous situation to me and I hope you can get to grips with counting clicks. Out of interest are you able to see bg results too?
I found ths link that may help although it is to a US web site but at least you can find a manufacturer's name to follow this up if you can get a grant for gear that will help you to be independent:
https://www.lssproducts.com/category/glucose-meters-and-diabetic-aids
CareSens seems to make a talking meter which takes Nexus strips
https://www.rnib.org.uk/eye-health/...d-eye-conditions/managing-diabetes-sight-loss RNIB PAGE on managing diabetes with sight loss (they also have a helpline).
I would also suggest getting advice from the helpline at Diabetes UK
Call: 0345 123 2399*, Monday to Friday, 9am to 6pm
Email: [email protected]
If you're in Scotland:
Call: 0141 212 8710*, Monday to Friday, 9am to 6pm.
Email: [email protected]

The longer term to consider is your insulin resistance which you may be able to reduce by diet. If you had to take less insulin then there would be less dosing errors but I don't know how independent you are in terms of food shopping?

 

[Jaylee]

OK, thinking outside the box, @Ca2910 .

If i understand correctly? the magnifier does not work with the pen shaft dosage read out, due to the convex lens covering it & distorting the image due the light reflected off the clear surface?

Bear with me.. This is a long shot.
Have you tried using something like a "polarized lense" over the magnifier? Thus helping with the definition of the dosage readout?

Here is my reason of thinking. https://www.revantoptics.com/blog/polarized-explained/

 

[Robinredbreast]

Hi,
I would like someones suggestion/opinion on the following.

I am type one diabetic on Humalog 200u/ml and Tresiba 200u/ml.

I am registered as blind (Not due to diabetes) and cannot see my insulin pen and my diabetes nurse has tried one pen magnifier that does not seem to work with my pens and she says they do not make any more types and that she recommends I count the clicks.
I have magnifiers from my hospital eye department however they do not work as the pens are curved and it distorts the numbers; my magnifiers work on electronic displays.

I currently have district nurses involved however they are deciding not to come as both DN and DSN have suggested I count clicks for each unit of insulin I give however I need high doses due to insulin resistance ( 78 UNITS Tresiba and 20-30 UNITS Humalog each meal plus correction doses)
They pulled my care package last weekend and I ended up in hospital as I could not count the clicks - I have come home yesterday and district nurse manager visited this morning and said I still need to carry on with the click method as there isnt anything they can do.

How do others manage with their diabetes and visual impairments

I live on my own and do not have anyone else to help me.

Does anyone have any suggestions or ideas as I really am at a loss and I want to be independent as I am only 19 years of age.

Connor

Hi @connor I found this which maybe of help. Counting the 'clicks' for such a large amount of Insulin wouldn't be ideal. Have you contacted the RNIB for help, advice and support ? Take care and I hope you find something that will help you.

Adaptive Devices for Insulin Measurement
There are several adaptive devices currently available that can help with insulin measurement if you are blind or have low vision. Please note: Always consult with your diabetes health care team before purchasing and using any adaptive insulin measurement device, including insulin pens.

1. For low vision insulin measurement

• Use a syringe magnifier in combination with a flexible-arm task lamp and against a contrasting background. Be aware, however, that syringe magnifiers offer minimal magnification.

2. For non-visual insulin measurement
Fixed-dose insulin measurement devices are appropriate for individuals whose insulin dosage remains consistent from day to day:

• The Safe Shot Syringe Loader from LS&S has one pre-set dosage step and is available in three colors (yellow, blue, and red).

Flexible-dose insulin measurement devices are appropriate for individuals who need to vary their daily insulin dosage, due to changing blood glucose levels and/or carbohydrate intake:

The Count-a-Dose insulin
measurement device
holding two insulin vials

• The Count-a-Dose from Independent Living Aids (pictured at left) accommodates a smaller dose (up to 50 units). It holds one or two vials of insulin and makes a distinctive click that can be heard and felt with each unit increment. It requires a B-D 50 unit/ ½ cc syringe.
• The Syringe Support from Maxi Aids accommodates a large dose (up to 100 units). A white, raised marking permits the user to differentiate each full turn of the calibrated screw. Each single full turn of the calibrated screw is equal to two units of insulin. It requires a B-D 100 unit/1cc syringe.

Insulin pens provide another non-visual measurement option:

The FlexTouch
insulin pen

Many are disposable and pre-filled with insulin, while others are refillable. All pens make a distinctive click that can be heard and felt with each unit. Individuals who require smaller doses can use a pen with a ½ unit increment.

A 2010 study provided evidence of the safe use of insulin pens by persons with vision loss, despite earlier disclaimers that persons using insulin pens could not do so independently without supervision. Insulin pens require a doctor’s prescription.

Each of the three insulin manufacturers make their own disposable insulin pens:

• The Novo Nordisk FlexPen and FlexTouch (pictured at left)
• The Sanofi Lantus SoloStar
• The Humalog KwikPen
• Diabetes Forecast provides a listing of all current insulin pens at Product Guide: Insulin Pens.

 

[ringi]

I thought there was a pen that could link to a smart phone to record the dose, but can't remember the details.

 

[Jaylee]

I thought there was a pen that could link to a smart phone to record the dose, but can't remember the details.

@ringi . The dosage still needs to be dialed up, before it gets stored into the LCD "marker" on the pen button as reminder after the injection of when it was last administered.

Have you used one of these devices.?

 

[Abigail18]

Hi
I have an insulin pen that has an electronic display on the end not because of visual impairments but because it shows how long ago you last injected. Could something like that be discussed with your DN?

 

[kitedoc]

Hi @Ca2910, 1). Has your DSN or DNM tried to count 39 clicks on the pen with Tresiba or even 15 clicks on the other pen say, with their eyes closed??
2). And can they even try to understand the anxiety involved. It is not as though one can do a recount!!
3). I reckon anyone put into that situation and under the pressure of no-one to check with, is going to have problems.
4). And they talk about insulin pumps being too expensive but what is the cost of having a district nurse visiting say 2 to 3 times daily?
5).And let me say despite what seems to have happened to you I am a great fan of nurses - but their primary job, as is your GP and specialist is to find the best solution for you, the best training, problem-solving etc.
6). Even perhaps you speaking with others in similar situations (where you and they agree to talk) to hear how they cope. They and you are the experts after all.
7). Others on this site will have local knowledge of who could be an advocate for you in this situation you are in.
8). And how to make a formal complaint about the way you have been treated.
9). And because letters and complaints take time where does your GP stand on this matter.?
Is he or she going to be happy that they have dictated to you that you should be able to confidently count up those many clicks without even even checking whether it is possible for you?
10).He or she should be helping you sort out a better short-term plan. If he or she is not going to help find another GP who will.
11). Just because the insulin pen manufacturers say it is possible to count clicks they are there to sell pens not deal with the difficulties.
12). And I assume you have a diabetes specialist who would have worked out for you the use of U-200 insulins as a way to reduce the volume and number of clicks involved.
If your specialist is just happy to relegate your troubles with administering insulin to the DSN, then he or she is a chicken.
13).As a doctor you stand up for your patient and not let a DSN unfairly pressure you.
Just as you expect a DSN to stand up for you if a doctor unfairly pressures you.
14). As the patient you should be included in sorting out a solution to your need for ways to accurately receive your insulin rather than having your care package pulled on the basis of two nurses who may see it as part of their job to cut costs.
15). The fact that you have had to go the hospital has probably wiped out any potential cost savings and that is their fault not yours.
A). GP maybe first for some help now
B). message to specialist
C). consider pens and other suggestions made on this forum at about the same time
D). Advocate contact
E). plus for meeting involving you
F). Complaint if no response and maybe MP informed
G). please keep posting
Best Wishes always

 

[Robinredbreast]

Hi
I have an insulin pen that has an electronic display on the end not because of visual impairments but because it shows how long ago you last injected. Could something like that be discussed with your DN?

It's an Echo pen, I have one. But being visually impaired, he may have a problem to actually see the amount. A specialist magnifier could possibly help ?

 

[evilclive]

It's an Echo pen, I have one. But being visually impaired, he may have a problem to actually see the amount. A specialist magnifier could possibly help ?

FWIW you don't want an Echo on the amounts being considered here (0.5u resolution won't help), but the novopen 5 instead. Still has all the problems.

I couldn't reliably dial up 78 units, but I can probably manage 10. So how about getting 7 pebbles. Dial 10 clicks, move a pebble over. Dial 10 more, move another. After the last one is gone, dial 8 clicks.

Not ideal in any way, but may be better than nothing?

 

[lilacpheonix]

Hi,
I would like someones suggestion/opinion on the following.

I am type one diabetic on Humalog 200u/ml and Tresiba 200u/ml.

I am registered as blind (Not due to diabetes) and cannot see my insulin pen and my diabetes nurse has tried one pen magnifier that does not seem to work with my pens and she says they do not make any more types and that she recommends I count the clicks.
I have magnifiers from my hospital eye department however they do not work as the pens are curved and it distorts the numbers; my magnifiers work on electronic displays.

I currently have district nurses involved however they are deciding not to come as both DN and DSN have suggested I count clicks for each unit of insulin I give however I need high doses due to insulin resistance ( 78 UNITS Tresiba and 20-30 UNITS Humalog each meal plus correction doses)
They pulled my care package last weekend and I ended up in hospital as I could not count the clicks - I have come home yesterday and district nurse manager visited this morning and said I still need to carry on with the click method as there isnt anything they can do.

How do others manage with their diabetes and visual impairments ?

I live on my own and do not have anyone else to help me.

Does anyone have any suggestions or ideas as I really am at a loss and I want to be independent as I am only 19 years of age.

Connor

Hi Connor I am Also Registered Blind and have a couple of friends whom are also severe sight impaired. I use Nova Rapid and Lavamier I am like yourself on high doses. I am in able to read dose even with aids so only thing available is counting the click. Yes it is frustrating when you get to about 40 or 50 and loose count and start over several times more. Tip the pens have a max turns of 60 units so if I take say 56 at night I turn fully to 60 units and just count back 4 clicks. My friend howere has bit more vision and he uses his smartphone live camera to show the numbers in the unit bit like a CCTV which he has also used. To great magnification effect but he uses his smartphone method mainly when he is out even uses that method for reading and filling forms in. But I can only do the click method unless I had a CCTV with a speech on. Humanware Prodogi has speech tad expensive but you might get funding.
They also do talking Glucose Meteres which I got through GP. But sadly not found anything other than counting the clicks yes takes lots of focus and concentration I have even counted 10 clicks put a lancet end cap on side as a counter for each 10 clicks. Sorry can’t be of more help. Good luck hope you manage to find a method that works for you.