Thread just for us old Type-1 diabetic insulin pump wearing Spyder Ryders

[OverHillAndDale]

Nearly 20 years I slowly became aware I was being honked at, I’m still not sure precisely for what. My Honda was way in the red line and I was in first gear. I didn’t know where I was or how I got there, and it slowly dawned on me I was in a serious insulin reaction. Fortunately, no harm was done other than to my self-confidence and to some other driver’s nerves.

Technology has improved a lot since then, but not utilizing the tools we have to prevent that sort of circumstance is inexcusable. Although a sensor may alert you to highs and lows, you can’t hear the alerts when ryding, and when the pump vibrates you may not be able to feel it. And, you certainly may not be able to tell if it is an alert worth pulling off the road and checking. In winter ryding gear, it might be too late before you notice and respond to a potential event. Stopping every few miles and performing a finger stick is not viable, particularly wearing gloves and riding gear. However, I’ve finally assembled a set of components and settings that I believe has greatly reduced the probability of this ever happening again. (I’d like to say “virtually eliminated”, but I don’t want to tempt fate…)

I wear a MiniMed pump and use the EnLite sensors. I recently purchased the Uploader, which transmits the pump’s blood sugar readings to my cell phone (unfortunately, it only works with iPhones at the moment but I’m sure that will change soon). I know there are other brands of sensors that will also work, but using this combination allows me to monitor my active insulin.

I have my phone mounted in a RAM X-Grip on the right handlebar (see pic - it's dark but clear). To make this work, I also have a USB connector on my dash. If the iPhone is charging AND is left playing music (I keep iTunes playing in the background software), the screen won’t lock. I also purchased a small stylus, so I can tap the screen even when I’m wearing full fingered gloves. I have it mounted with just a small amount of Velcro where I can easily retrieve it in gloves to tap the screen if I need to (just above emergency flasher on ride side, see pic).



When I first start the motor, I set iTunes playing at a low volume and open the MiniMed screen. With the phone mounted vertically, the MiniMed screen will display

• my current blood sugar reading,
• the relative speed at which my blood sugar is changing, and
• the amount of active insulin.

And, if the display dims I can see this at any time with a single tap. Since cell phones don't do well in bright light, I look for opportunities like going under an overpass or ryding under trees.

When the screen dims out, a touch with my finger (or with the stylus I have velcroed in place) will make it bright again.
This is not a distraction as it is not necessary to glance at the phone more than every 5 minutes or so, as that is as often as it refreshes. So far, this has kept me apprised not only of eminent danger, but keeps me watching trends so I know when to relax, when to pull off and bolus, when to open the bottle of sweet soda I keep handy. More than once I’ve caught my BS sliding downwards when I didn’t expect it, or heading up enough I decided to pull off, test of blood sugar with a meter and bolus accordingly.

I'd love to hear what others do to keep their blood sugar at a safe level while ryding.

[Bob Denman]

On April 5th, 2016; I celebrate 51 years as a Type I...
I also have been using a Medtronic pump (Since 2000), and am hooked up to the Enlite sensors as well.
BEFORE any ride; I check my Blood Glucose level. (I calibrate the sensors when I get up in the morning, at 2:00 pm, and at bedtime. During the middle of the day; I'm normally close enough to a calibration, that the monitor's reading are very accurate. If a long ride is planned; I'll eat, and let the glucose levels go high...
I can feel the pump vibrate (When I've ignored enough alarms... ), so I'll often wait until a fuel stop, before addressing a high BG alarm...
I don't have a smart phone, so I just use "close-monitoring", at any opportunity that I have...

Oh! When I arrived in Springfield for SpyderFest 2013; my BG level was at 494... I've made some adjustments to my routine since then!

[OverHillAndDale]

On April 5th, 2016; I celebrate 51 years as a Type I...

Bob - I think we talked about this before, I celebrated (strange word) 51 years in January of this year.

I'm glad you're on the sensors. Even a short-term BS near 500 is bad, but infinitely better than a dangerously low one. After I had my heart valve replaced, the attending physician ignored the settings I'd given him and I was in the 500s for a solid week.

[Bob Denman]

As your blood glucose levels rise; your resistance to the positive effects to the insulin will also rise...
Once I reach a reading of 225; I have to double the dosage of insulin necessary for a correction..
(Normally: 1 unit of Humalog will drop my 40 points. If I've over 225; it decreases to only a 20 point drop)
I'm "button-happy"; as my endo describes me!
I'll plug in correction dosages all day-long... and THEN have to go eat something, in order to catch a low BG situation!

[OverHillAndDale]

Yeah, watch it drop, eat lot, watch it climb then bolus. Repeat until you're 30 lbs overweight...

[Bob Denman]

[Bob Denman]

Between the two of us; we've had 102 years of this...
Are we having fun yet?

There's GOT to be some more Type I diabetics in here: we'd love to hear from you!

[PatriotRider]

just a note that the iphone can be set to never auto lock or screen save if that's what you want

settings...general...auto-lock...never

when I want to monitor my FOBO while riding, I set it to "never" and mount my phone on my RAM mount with a techmount Tech Gripper

[Rando]

Our 10 year old grandson is type 1. Been that way since he was 2. Life is not fair! He also has Celiacs, gluten free diet.

[OverHillAndDale]

I was 9 when I became a type 1. I'm nearly 61, and although there have been a few bumps I still have working eyes and kidneys, and I'm on the Spyder forum! And, technology is MUCH better now than then.

With what is currently available in the way of pumps and sensors, not to mention what's to come, your grandson will suffer much less than Bob and I have.

[Bob Denman]

Randy,
I got caught by it at eight and a-half...
Today's treatments are SOOO much better, that he's going to be just fine!

Oh!! There are tests going on right now with a potential cure... They have found a way to encapsulate stem cells that have been configured to produce insulin. By doing this; the body's immune system can't destroy them.

http://www.columbian.com/news/2016/f...have-found-it/


By the way; the pump on the left is from 1961!!

[Bob Denman]

Tell your endocrinologist about this...

http://www.upi.com/Health_News/2016/...3171455301644/

[Rando]

Thanks!

[Bob Denman]

For (almost) 51 years; I've been hearing that a cure is only... "five years away..."

[tobor9]

I'm also on a pump(MM723) but i'm a Type 2 that having a smoke a pancreas that retired a couple of years before i did and makes no insulin,so i don't know if i am a t1.5 but my Endo. says i'm still t2 what i call a IDT2(insulin dependent t2)Because of this i don't go low often. Having a pump and a is a great combo,I just hope my Tremors don't get worse,i have ET(essential tremors)that sometimes causes my hands to shake bad and is hard to be shady on throttle and steering ,life's a B***th.

Soon to be 62 and Sofia and i ryde everyday as we don't own a car,so life is Good!

[IdahoMtnSpyder]

Randy,
I got caught by it at eight and a-half...
Today's treatments are SOOO much better, that he's going to be just fine!

Oh!! There are tests going on right now with a potential cure... They have found a way to encapsulate stem cells that have been configured to produce insulin. By doing this; the body's immune system can't destroy them.

http://www.columbian.com/news/2016/f...have-found-it/


By the way; the pump on the left is from 1961!!

Do you have to wear the pump at night also? Or does it depend on the patient's specific situation? Does your BG vary much during the night since you're not physically active nor eating or are those factors offset too greatly by the lack of insulin production or injection?

I worked with a guy several years ago who was Type 1. He was pretty sure it was the effects of agent orange in Viet Nam that did his pancreas in. He tested 5 or 7 times a day and shot himself about every time I think. When a decent pump became available it sure improved his quality of life. They're a great therapy for an unfortunate condition. I'm Type 2. It was caught during a dieting clinical study. The doctor watched as my BG steadily when up and then crossed the threshold, which back then was still set at 140. I've been on meds ever since and have been fortunate to keep my BG down in the 120 to 130 level. I think I could be classified as a moderate diabetic. I hope I never get to point of needing insulin. It's a two edged sword. You need it to live, but too much can create real problems too.

The size of the pump and the time frame almost parallels the development of cell phones, and transistor radios!

[tobor9]

Do you have to wear the pump at night also? Or does it depend on the patient's specific situation? Does your BG vary much during the night since you're not physically active nor eating or are those factors offset too greatly by the lack of insulin production or injection?

I worked with a guy several years ago who was Type 1. He was pretty sure it was the effects of agent orange in Viet Nam that did his pancreas in. He tested 5 or 7 times a day and shot himself about every time I think. When a decent pump became available it sure improved his quality of life. They're a great therapy for an unfortunate condition. I'm Type 2. It was caught during a dieting clinical study. The doctor watched as my BG steadily when up and then crossed the threshold, which back then was still set at 140. I've been on meds ever since and have been fortunate to keep my BG down in the 120 to 130 level. I think I could be classified as a moderate diabetic. I hope I never get to point of needing insulin. It's a two edged sword. You need it to live, but too much can create real problems too.

The size of the pump and the time frame almost parallels the development of cell phones, and transistor radios!

Yes we ware them 24/7/365,mine is only off when taking a shower or changing my set(15min every 2 days) I love my pump and wold never be without it,unless they come out with a cure. Like the once you get the hang of it ,it's wonderful!

[J48cruiser]

Have the same set up with the Mimi med and the up loader before a big ride try to level blood sugar and not take in carbs and drink a lot of water and luckily I fee a low coming on be have juice boxes handy


Sent from my iPhone using Tapatalk

[Bob Denman]

Do you guys feel it, when your Blood glucose levels drop?

I don't... It's one of the long-terms effects: hypoglycemic unawareness.
I could be talking to somebody in my office; check my sugar, and it's at 40!


I know a couple of "IDT2" diabetics. If your C-peptide tests show that the pancreas is producing no insulin; you're a candidate for a pump.

And wearing the pump ALL of the time is actually about the easiest thing to do; it sure beats taking four or five insulin injections each day...

[tobor9]

Do you guys feel it, when your Blood glucose levels drop?

I don't... It's one of the long-terms effects: hypoglycemic unawareness.
I could be talking to somebody in my office; check my sugar, and it's at 40!


I know a couple of "IDT2" diabetics. If your C-peptide tests show that the pancreas is producing no insulin; you're a candidate for a pump.

And wearing the pump ALL of the time is actually about the easiest thing to do; it sure beats taking four or five insulin injections each day...

Bob,I also have hypoglycemic unawareness do to some of he drugs I take, but don't go low to often luckily ,I hate lows. I have not meet any other IDT2's in person or on line,we seem to be ignored by the support pages.

[OverHillAndDale]

I'm unaware of whether or not i have hpypoglycemic unawareness. I've started seeing a kind of sparkly pattern(very poor description) in my vision while it's dropping, but still often miss it. My doctor recently told me not to try to keep too tight a control because while highs damage blood vessels and nerves, repeated lows damage the heart. A real loose/loose.

As far as wearing the pump 24/7, I've gone from it bothering me all night to where I semiconciously move it around while I sleep and don't think about it. I love/hate it alarming all nigh, but that does allow me to respond to highs and lows.

I agree with you Bob - we live at constantly 5 years from the cure. Kind of like when me kids used to tell me they were "about" to clean their rooms.

I went on a pump in 2000, and my control went from awful to awfully good in a short time. It is a lifechanging product. Not perfect, still with risks of short term and long term complications, but infinitely better than trying to maintain tight control with shots.

An aside - when I was 9 I read one of the Joslin clinic books on diabetes my mom had bought, and it stated that doctors could keep most young diabetics alive until they were in their thirties. I was elated, I thought "Man, I'll be sooo old when I die".

[Bob Denman]

I went on a pump in 2000, and my control went from awful to awfully good in a short time. It is a lifechanging product. Not perfect, still with risks of short term and long term complications, but infinitely better than trying to maintain tight control with shots.

We must have gone to different High Schools together...
I got my 508 pump in 2000.
Prior to the pump; my BEST A1c was 10.5
Right out of the blocks: I dropped it to 6.2

[OverHillAndDale]

Twin Sons of Different Mothers ImageUploadedByTapatalk1455545633.053367.jpg


Sent from my iPhone using Tapatalk

[Bob Denman]

[OverHillAndDale]

just a note that the iphone can be set to never auto lock or screen save if that's what you want

You're correct, and that is a more effective solution than the awkward one I'd devised. Thanks.


Between the two of us; we've had 102 years of this...

Bob - your story and mine, which we've discussed in pieces before, seem to be incredibly parallel. Someday we definitely need to meet.