From: Benjamin Westheimer, 70631,60 To: All Topic: Most Feared Complication Msg #449611 Section: Complications [8] Forum: Diabetes+ Date: Wed, Jul 26, 1995, 10:00:19 PM As part of an article I am writing I wondered which of the complications most of us fear. I maintain it is blindness, but it has been suggested to me that this may not be true for the majority of diabetics. So, I put the question to all of you: WHICH COMPLICATION IS THE MOST FEARED? A partial list follows, in no particular order: Gangrene Amputation(s) Kidney disease & failure Retinal damage & blindness Mood swings Impotency/Loss of sex drive Heart disease ETC. Thanks for your input. -=Ben ------------------------------------------------------------------------------- From: Bruce Beale-SYSOP, 100345,3667 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #449618, reply to #449611 Section: Complications [8] Forum: Diabetes+ Date: Wed, Jul 26, 1995, 10:11:09 PM Severe hypo, severe dependency creating stroke -Bruce Beale, Heathrow, London, UK. ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Bruce Beale-SYSOP, 100345,3667 Topic: Most Feared Complication Msg #449630, reply to #449618 Section: Complications [8] Forum: Diabetes+ Date: Wed, Jul 26, 1995, 10:39:17 PM Thank you, Bruce, you are the first to comment. What do you think of blindness as a complication? -=Ben ------------------------------------------------------------------------------- From: Bruce Beale-SYSOP, 100345,3667 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #449892, reply to #449630 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 12:52:10 PM >> What do you think of blindness as a complication? << I would not like to lose my sight. Very few DM's completely lose sight most are left with some very limited vision. For most people with DM these problems can be helped even when the complications are very advanced. All my friends have been killed by heart disease. none have been killed by cancer, blindness, gangrene. Most of the gangrene I have seen has been in hospitals where people were being badly treated for stroke or recovering from surgery. A multi national WHO study of diabetes showed a 45% prevalence of cardiovascular disease in diabetics from the UK. So we all say "It is a quick painless death from a heart attack." Well it is not, most people would scream with pain if they could. So for an older, overweight person with diabetes one has to concentrate on the risk of stroke. Unless your partner is exceptionally wealthy he is going to have to dump you because caring for a huge lifeless bulk is very difficult indeed. So we in the Uk really do need to concentrate on heart disease and it is this complication that worries me most. -Bruce Beale, Heathrow, London, UK. ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Bruce Beale-SYSOP, 100345,3667 Topic: Most Feared Complication Msg #449988, reply to #449892 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 3:28:01 PM Thank you, Bruce. I am certain that this fear is very real IF it is a known quantity. Gangrene, amputation, blindness, etc. seem far more obvious and common. Add to that heart disease kills such a huge proportion of us, even the non-diabetics. Denial may be the thing that kills us ultimately. -=Ben ------------------------------------------------------------------------------- From: Glenda & Bill Braidic, 73543,2104 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #449730, reply to #449611 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 12:48:04 AM Ben, On the surface and selfish side, probably blindness. But overall my answer would parallel Bruces. What I fear most is being a burden to those I love the most. Glenda In the Pacific NorthWest 26-Jul-1995 21:28:36 PDT ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Glenda & Bill Braidic, 73543,2104 Topic: Most Feared Complication Msg #449759, reply to #449730 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 2:58:05 AM Glenda, thanks for your reply. I honestly couldn't imagine that blindness wouldn't be the number one fearful complication, but you make a very valid point. Stay tuned as others "vote". -=Ben ------------------------------------------------------------------------------- From: Phyllis J. Cross, 75754,2175 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #450994, reply to #449759 Section: Complications [8] Forum: Diabetes+ Date: Sat, Jul 29, 1995, 5:19:14 PM At present, having seen my mother lose most of her sight due to diabetes, and then totally from a stroke and living a confused and sightless life for over 3 yrs, I fear the same thing will be my fate. I am so like her in many ways. I am currently working on keeping my BG's in an acceptable range, taking glynase, and working seriously on a very high cholesterol level which includes very high triglycerides. The medication doesn't seem to help a lot, Lopid, but losing some weight and keeping up with a regular exercise program seems to help more. Got about 30 lbs. to go yet, and progress is so slow but I am persistent and losing 12 lbs. has made a big difference. My family doesn't seem to die with heart problems, but stroke is very prevalent. And I do have a real respect for my eyes. How could we use our computers, see our grandchildren, the beauty of nature, etc. without them? Sorry I wrote so much, but your subject is a good one and I am anxious to read more comments. Phyllis ------------------------------------------------------------------------------- From: Bruce Beale-SYSOP, 100345,3667 To: Phyllis J. Cross, 75754,2175 Topic: Most Feared Complication Msg #451007, reply to #450994 Section: Complications [8] Forum: Diabetes+ Date: Sat, Jul 29, 1995, 6:01:20 PM My goodness Phyllis, 12 lbs is terrific. You will be able to join Brooke and Holly's Hokey cokey Dancin team before long. (g) -Bruce Beale, Heathrow, London, UK. ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Phyllis J. Cross, 75754,2175 Topic: Most Feared Complication Msg #451024, reply to #450994 Section: Complications [8] Forum: Diabetes+ Date: Sat, Jul 29, 1995, 6:46:15 PM Phyllis, thank you for your comments. I will weave them into this article, if I may. Diabetes seems so simple (just take some pills or insulin everyday) that most people don't realize the depth of its treatment nor outcome. You shed some very needed light on that score. -=Ben ------------------------------------------------------------------------------- From: Kemp Randolph, 72370,3642 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #451216, reply to #451024 Section: Complications [8] Forum: Diabetes+ Date: Sun, Jul 30, 1995, 7:54:16 AM Ben, It's natural, I guess, to identify whichever complication, if any, seems most likely for oneself. (Which comes first, the fear or learning enough about one to fear it?) Not being close to any of the high bg caused complications, then surely a mentally crippling insulin reaction. Something that leaves you short of vegetative. I've seen half sentence descriptions of a few in Diabetes Care. Kemp ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Kemp Randolph, 72370,3642 Topic: Most Feared Complication Msg #451722, reply to #451216 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 12:48:15 AM Kemp, you may have hit the nail (one of them, at least) on the head ... whatever is most important to the individual that can go wrong will be the most feared complication. I do remember a blind friend of mine (congenital cataracts) saying she really doesn't mind and thinks that all the sights would just be distracting! She is a top notch programmer, by the way. -=Ben ------------------------------------------------------------------------------- From: Larry Lands, 70353,2773 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #449738, reply to #449611 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 1:32:12 AM Ben, Clearly, from the list, and in fact regardless of your list, I fear the Kidney problems. Hell I have many of the others already. Blindness would be pretty awful, since much of my life is visually centered, but then I've already had 8 eye surgeries, so I've faced that one for a long time. OTOH if you've ever seen a dialysis area in a hospital, it'll pretty much scare the hell out of you. I corresponded with a lady in Oregon a couple of years ago who's kidneys began to fail, and after investigating the issue carefully she simply said no. She was incredibly lucky to receive a transplant before she got too bad, and is considering a pancreas transplant to go along with it too. After 31+ years of IDDM I do the best I can to take care of my kidneys, but there is only so much you can do. If they go, I'll very likely die. It's that simple. I heard a Nephropathy specialist bragging that fully 25% were still alive after 5 years. Doesn't sound all that positive to me! Larry L :-) [Ft Worth/TX] ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Larry Lands, 70353,2773 Topic: Most Feared Complication Msg #449760, reply to #449738 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 3:02:15 AM Larry, thanks for your comments. I am certainly seeing a different side of this disease. So far we have 3 votes (plus mine ...which I shall not count just yet). Out of the three, blindness is not the most fearful complaint. This is still hard for me to accept ...but given the problems that you have had I can easily understand why kidney failure seems far worse! Thanks and let's hope that none of us suffer from anything too severe. -=Ben ------------------------------------------------------------------------------- From: Bruce Beale-SYSOP, 100345,3667 To: Larry Lands, 70353,2773 Topic: Most Feared Complication Msg #449902, reply to #449738 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 12:53:09 PM >> I heard a Nephropathy specialist bragging that fully 25% were still alive after 5 years. Doesn't sound all that positive to me! << Larry, I am sure that the figures are much better now. It is an operation which is not performed until people are very ill. High mortality is to be expected. They only replace the kidneys not the whole clogged up network. -Bruce Beale, Heathrow, London, UK. ------------------------------------------------------------------------------- From: Ray Allison, 76075,1523 To: Bruce Beale-SYSOP, 100345,3667 Topic: Most Feared Complication Msg #449946, reply to #449902 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 1:36:06 PM >> replace the kidneys not the whole clogged up network. << What else gets clogged up? ------------------------------------------------------------------------------- From: Ray Allison, 76075,1523 To: Larry Lands, 70353,2773 Topic: Most Feared Complication Msg #449945, reply to #449738 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 1:36:05 PM Your thoughts mirror my exactly. I've developed several complications in the past two years, and the kidney disease is by far the worst. I was diagnosed quite late, so my BUN and creatin were already very bad. In my opinion, every IDDM patient should have a 24 hour urine screening for total protein every year. Ray ------------------------------------------------------------------------------- From: Bruce Beale-SYSOP, 100345,3667 To: Ray Allison, 76075,1523 Topic: Most Feared Complication Msg #449984, reply to #449945 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 2:45:08 PM >> IDDM patient should have a 24 hour urine screening for total protein every year. << More important for overweight NIDDM's. -Bruce Beale, Heathrow, London, UK. ------------------------------------------------------------------------------- From: Sue Stevens, 71746,145 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #449763, reply to #449611 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 3:29:04 AM Hi, I just had right hand surgery this afternoon,so I'm typing slowly. I have to say blindness.I'm already legally blind in my L eye and will be in my R if I lose another 10 degrees. In addition I have double vision frequently.Right now I;I've had it for 6 days with no break. It's very annoying! I cherish the vision I have left. Stroke or any paralysis would be a close second. Sue ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Sue Stevens, 71746,145 Topic: Most Feared Complication Msg #449989, reply to #449763 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 3:28:03 PM Sue, I am sorry you have had so many complications. Blindness seems so on- goingly difficult to deal with. I certainly don't want to be a vegetable nor a burden to anyone. I actually did not consider being hit with a stroke until Bruce mentioned it, even though I have known it is one of the results of diabetes. Arggh! What I keep re-learning. All the best to you and a speedy hand recovery, too. -=Ben ------------------------------------------------------------------------------- From: Corky Courtright-SYSOP, 76326,1673 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #450140, reply to #449611 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 7:15:12 PM Ben, For myself it has to be blindness. For my family I most fear any complication that would make me totally dependent on others. Tnx, Corky ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Corky Courtright-SYSOP, 76326,1673 Topic: Most Feared Complication Msg #450407, reply to #450140 Section: Complications [8] Forum: Diabetes+ Date: Fri, Jul 28, 1995, 11:47:08 AM Thanks, Corky. I am getting quite a lot of very interesting opinions. I would have BET that blindness was the most feared complication, but apparently there are very strong feelings that other complications take precedence. -=Ben ------------------------------------------------------------------------------- From: Juanita Beeson, 74652,1210 To: Corky Courtright-SYSOP, 76326,1673 Topic: Most Feared Complication Msg #451104, reply to #450140 Section: Complications [8] Forum: Diabetes+ Date: Sat, Jul 29, 1995, 11:24:04 PM Being blind wouldn't make you totally dependent--unless you chose to be. Trust me! ------------------------------------------------------------------------------- From: Corky Courtright-SYSOP, 76326,1673 To: Juanita Beeson, 74652,1210 Topic: Most Feared Complication Msg #451243, reply to #451104 Section: Complications [8] Forum: Diabetes+ Date: Sun, Jul 30, 1995, 9:48:09 AM Juanita, I'm sorry that I didn't make myself clear. I meant that blindness was "my" most feared complication and that I was more concerned from my families point of view about some other complication, such as a stroke, that would make me totally dependent. I know that an individual can be quit independent in spite of blindness but I don't think at this point in my life I would be willing to try. Tnx, Corky ------------------------------------------------------------------------------- From: Juanita Beeson, 74652,1210 To: Corky Courtright-SYSOP, 76326,1673 Topic: Most Feared Complication Msg #452113, reply to #451243 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 10:28:28 PM Actually, I think you'd be suprised at what you could endure and adapt to if you had to. ------------------------------------------------------------------------------- From: Corky Courtright-SYSOP, 76326,1673 To: Juanita Beeson, 74652,1210 Topic: Most Feared Complication Msg #452437, reply to #452113 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 1, 1995, 1:41:11 PM Juanita, I have been surprized many times over the last 16+ years at what I could endure and have managed to adapt well enough with all the things that ail me to allow me to continue my life. I have thought many times that that would not be the case. I don't wish to test my endurance further. Unfortunately, I have no control over that. "All things come to pass". Tnx, Corky ------------------------------------------------------------------------------- From: Juanita Beeson, 74652,1210 To: Corky Courtright-SYSOP, 76326,1673 Topic: Most Feared Complication Msg #453608, reply to #452437 Section: Complications [8] Forum: Diabetes+ Date: Thu, Aug 3, 1995, 9:29:09 PM Here's hoping that all your future surprises are pleasant. ------------------------------------------------------------------------------- From: Corky Courtright-SYSOP, 76326,1673 To: Juanita Beeson, 74652,1210 Topic: Most Feared Complication Msg #453845, reply to #453608 Section: Complications [8] Forum: Diabetes+ Date: Fri, Aug 4, 1995, 9:40:07 AM Thank you Juanita. ------------------------------------------------------------------------------- From: shula,manchester,u.k, 100417,1501 To: Juanita Beeson, 74652,1210 Topic: Most Feared Complication Msg #451558, reply to #451104 Section: Complications [8] Forum: Diabetes+ Date: Sun, Jul 30, 1995, 8:53:02 PM >> Being blind wouldn't make you totally dependent << juanita are you speaking as someone with sight impairment ? i cannot see you to find that out ! shula -shulabeth,manchester,u.k ------------------------------------------------------------------------------- From: Juanita Beeson, 74652,1210 To: shula,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #452114, reply to #451558 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 10:28:04 PM Well, if you think about it, none of us can see any of us to find out what our physical attributes--or the lack there of are. Here at the forum, we're all on an equal playing field. ------------------------------------------------------------------------------- From: shula,manchester,u.k, 100417,1501 To: Juanita Beeson, 74652,1210 Topic: Most Feared Complication Msg #452283, reply to #452114 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 1, 1995, 3:11:05 AM >> none of us can see any of us to find out what our physical attributes-- << juanita on the other hand i see it works to some disadvantage if one is not aware or the options open. i would love to hear just how many people using the forum use text readers or voice entry. if any at all? how can we make it possible or easier in any technical way. i speak soft and low, but i know with a hearing impaired person i should look directly at them and enunciate better. if we are fortunate to have all our senses and functions intact we cannot be aware of the needs of those in lack. best to ask or be told, and of course to listen. a level playing field is not of much use if we cant begin to play, no matter how well intentioned are our benefactors. shunaive -shulabeth,manchester,u.k ------------------------------------------------------------------------------- From: Juanita Beeson, 74652,1210 To: shula,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #453609, reply to #452283 Section: Complications [8] Forum: Diabetes+ Date: Thu, Aug 3, 1995, 9:29:11 PM Actually, there are several ways to access the computer: through speech output, inlarging the print on the computer screen, and with braille. As for me, I'm a speech user. ------------------------------------------------------------------------------- From: shulabeth,manchester,u.k, 100417,1501 To: Juanita Beeson, 74652,1210 Topic: Most Feared Complication Msg #453724, reply to #453609 Section: Complications [8] Forum: Diabetes+ Date: Fri, Aug 4, 1995, 5:04:01 AM >> As for me, I'm a speech user. << juanita we have had a close friend call by over the weekend. it was always possible she might end up living with us, and that now seems more probable. her eyesight is diminishing but she is a competent office administrator, about to retire. we expect to upgrade our own pc with another - do you have any general advice - we expect she may get a great deal out of this form of access. i might also gain by it in other ways. in other words what do you use? shumole -shulabeth,manchester,u.k ------------------------------------------------------------------------------- From: Juanita Beeson, 74652,1210 To: shulabeth,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #454369, reply to #453724 Section: Complications [8] Forum: Diabetes+ Date: Sat, Aug 5, 1995, 9:15:05 AM Shumole: Since your friend still has some vision, it would probably be best to explore some of the large print screen review programs. Two of the most popular of these are: Zoomtext Plus and Lpdos. You might want to visit the Disability forum (section 5,) and browse around in the library for a review of the screen access programs there. Also, you may find a demo copy of program or two to download and play with. Also, just ask for some feedback from some of the members in that forum. They'll be more than glad to share their knowledge with you. As for me, I'm using Vocal-Eyes 3.0 with the Reading Edge, which serves as a speech synthasizer and a stand alone scanner. Oh, btw, is your friend getting her eyes checked often? Do you know what is causing the decrease in vision? Since she's near retirement age, there's a good chance it's caused from macular degeneration a common cause of blindness in older people. Good luck, and let me know what you find out! ------------------------------------------------------------------------------- From: Bruce Beale-SYSOP, 100345,3667 To: Juanita Beeson, 74652,1210 Topic: Most Feared Complication Msg #454427, reply to #454369 Section: Complications [8] Forum: Diabetes+ Date: Sat, Aug 5, 1995, 12:01:01 PM She needs to contact the Disablement resettlement officer quickly. she is entitled to 25,000 pounds of computer equipment free and gratis. Also Association of Disabled Professionals 01924 270335 Dial UK 01302 310123 -Bruce Beale, Heathrow, London, UK. ------------------------------------------------------------------------------- From: shulabeth,manchester,u.k, 100417,1501 To: Juanita Beeson, 74652,1210 Topic: Most Feared Complication Msg #455241, reply to #454369 Section: Complications [8] Forum: Diabetes+ Date: Mon, Aug 7, 1995, 6:30:26 AM >> Since she's near retirement age, there's a good chance it's caused from macular degeneration << juanita thankyou for your detailed comment on your arrangements. some of the things you mention will be different for the uk market, but its a fine start. i did visit disability forum a while back and grabbed a few sample things - its a confusing field, and i was trying to get a feel for it - pardon the pun. jean, the woman i mentioned is an old friend of joyce whom i live with. so i had to ask details. its enough for me to know she helped joyce out at a critical time long before i entered her life. jean remains single and has a large house - we have made gestures she is welcome to share with us if we move on to a larger resdence. apparently she had a hemorrhage with a detached retina about 10 years ago. she is now 57. over here she can retire at 60. they couldnt save it in an emergency admission to our eye hospital on the day it happened. they also warned the remaining good eye was at risk. she is not one to admit she has a problem either. so bruce beales comments are valuable and we can only hope they might be heard. she works as senior administrator in a large school, mostly on macs if anyone wants to know. our current ibm pc canot cope with sound - the hard drive is overfull, and ram is low at 4 megabyte. it is really a case of what happens if we upgrade, which we might do over the next year. i notice that even some basic computers now come with more than just multimedia. these things should be commonplace, not add-ons - which is why i approve of macs - who try and package most options first, not later. my own mother had advacing glaucoma when she died at 54, and that was through having diabetes most of her life. my own eyesight suffers from bad strabismus - i had an injury as a child that leaves one eye a lot weaker. i used to use contact lenses a lot - hard ones. because jean used to wear these and sleep in them on occasion joyce tends to blame them for the damage. jean did continue to use them too, and now manages with fairly poor sight. jean is not diabetic to our knowledge. nor is joyce. we both use good opticians - very bad pains i have recently had behind my good eye seem to be a result of medication for high blood pressure - really a good sign but alarming..in case you dont know i am 44 and just diagnosed - most likely type 2. i have an annoying wait to see a good opthalmologist whilst my sugars settle. the most common problem i get with stress or sugars is diplopia. this pc is laregly configured for anotehr family member - richard - otherwise i would reset the reader i am now using - he also sets brightness tooo high. in a short whil i may own this as we get a second one - which could easily have text reading options. our main city libaray has 'kurzweill' text to speech readers which scan any loan book, within a sight impaired section. you hear these as you walk down a main corridor. in amomgst all these fearful 'complications' its nice to know there are other ways of coping - howver clever we are , or careful we are still vulnerable, especially to genetic whim. shufumbler -shulabeth,manchester,u.k ------------------------------------------------------------------------------- From: Sue Stevens, 71746,145 To: shulabeth,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #455611, reply to #455241 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 8, 1995, 3:17:12 AM Shu, Hi. 2 things.First, Why do you have diplopia (double vision) and is it constant / intermittent and when both eyes are being used or can you cover one eye and it still occurs? About your friend--I too lost my vision (all but 10 degrees) in my good eye a few years ago. I had surgery in the "bad" eye==(only 30 degrees left) and was very upset when the good eye bit the dust. Like your friend, the doctors kept reminding me that I now had an increased risk of my new "good eye" going blind.They estimated it at about a 50/50 risk. I went crazy with worry for a couple months.I wont say I never worry anymore but I realized it did no good. I wasn't getting all out of the vision I had left by fixating on what I might lose.My visual fields have been stable at the 10/30 situation. Sue ------------------------------------------------------------------------------- From: shulabeth,manchester,u.k, 100417,1501 To: Sue Stevens, 71746,145 Topic: Most Feared Complication Msg #455789, reply to #455611 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 8, 1995, 4:38:26 PM >> Why do you have diplopia << hi sue there was a part thread on this a few months ago - one of our very special members is a senior here - mary peacock,[73663,3624] whom i met during that discussion - i wonder if we can rescue that file somehow - dm & diplopia or something around may [ hint hint james] [our expert techie] or it may already be stored somewhere as a file.mary is about to go through some suregry so she may not be easily available - i know i regret losing touch so easily . [tell you what - i'll set up a call - look for 'catching up' in section 3] i had a firework go off in my right eye when i was about 8. theres actually a small burn mark in the white part. i imagine thats an irritant whne the eyeball tracks around, and a sloppy socket muscle has resulted. about 8 or 9 years ago - which could well be when i started getting dm problems but undiagnosed i was working round the clock as a community project manager - this involved socialisng in bars till 2 or 3 am as we neared completion after each day. my eyes started going completely out of focus. whenever i am stressed lately i get double vision, but i have always had some double vision that has been corrected with spectacles well designed. i have worn contacts for may yeras too - hard ones help. if you look straight at me i will look straight at you, and after 10 or 20 seconds my right eye will wander off some say it has its charms. mary, i and an expert in some optical field batted around diplopia being a complication of dm. i think we concluded not - but i have at least one english medical text that says it arises from rapidly changing blood sugars i certainly dont get double vision with one eye covered, nor do i get true 3D vision very easily . i strain to stay focusssed really - the eyes are offset too so i cannot hang shelves straight. i do get occasional things like haloes around lights and fuzziness - these may be scratches in the eye i guess - less common without contacts - i used hard ones - they corrected the astigmatism better.i do get focussing problems with an without glasses with wonky sugars. i have lower color range - dullness in the bad eye. of cousre the good one is strained more. i have had significant pians in the good one or rather behind it in the last few months now i am getting sugars stabilised. my general vision is good - its mainly my fear that i might follow my mother with glaucoma - my blood pressure has been very high - which is not good for anything - and that is more of a worry than the diabetes cos i could go out like a light, literally. i do plan for bad vision and use good lighting where i can - i try and optimise things - having rest , sleep and having defocussed activities matters - i listen more to tv than watch it, and enjoy radio programs. i enjoy a great deal of music - as to the subject of this thread - i feel i could live with it somehow. you dont seem to mention pain - thats a worse issue - i have had constant pain at various points in my life - age lets me cope with new changes in a more mature way i hope - this comes from having survived graet illness in my teens, too i enjoy each extra day, and it is cumulative.blind people can be fun to be with because they have a whole different world to participate in. they may not agree - sometimes one can get tired of a sighted world too, however. how are you about that aspect? shushu -shulabeth,manchester,u.k ------------------------------------------------------------------------------- From: Brooke Disbrow-SYSOP, 74627,3163 To: shulabeth,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #455798, reply to #455789 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 8, 1995, 5:10:01 PM Shu, There is a discussion of diplopia called DIPLOPIA.THD and one on generally blurred vision called BLURVISN.THD, both in Library 8. Brooke ------------------------------------------------------------------------------- From: shulabeth,manchester,u.k, 100417,1501 To: Brooke Disbrow-SYSOP, 74627,3163 Topic: Most Feared Complication Msg #456004, reply to #455798 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 8, 1995, 11:13:22 PM >> is a discussion of diplopia << yes i realise now - i downloaded two copies ate the same time when it first was available tthhaannkkss -shulabeth,manchester,u.k ------------------------------------------------------------------------------- From: Brooke Disbrow-SYSOP, 74627,3163 To: shulabeth,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #456022, reply to #456004 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 8, 1995, 11:41:11 PM Shu, You're welcome! Brooke ------------------------------------------------------------------------------- From: Sue Stevens, 71746,145 To: shulabeth,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #456038, reply to #455789 Section: Complications [8] Forum: Diabetes+ Date: Wed, Aug 9, 1995, 12:16:14 AM Hi, I didn't mention the pain in my right eye because it seems to be unassociated with the diplopia. I've had the stabbing and aching type of pain in my right eye only, for about 2-3 years it's terrible but seems to be giving me a break now and again. We assume the pain is neuropathy.I had it in my legs for about 4 months. That's gone now. I have corneal neuropathy--my Dr. can run Q-Tips across my eyes and I can't feel a thing. My diplopia occurs in either eye or together intermittently. You apparently have a more typical muscle induced diplopia.Mine is corneal. I saw my corneal specialist last week and at the time my left eye was double. He said my cornea was all roughed up with SPKs.It leaves a very "wrinkled" surface to look through. It's very foggy and distorted. The bad thing is I never know when it's going to happen.It usually occurs about 50% of the time. It's worse of course when it hits both eyes at once.It always happens when I exercise or am outdoors when it's cold. I'll try to look for the thread you mention. Thanks Sue ------------------------------------------------------------------------------- From: Juanita Beeson, 74652,1210 To: shulabeth,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #456914, reply to #455241 Section: Complications [8] Forum: Diabetes+ Date: Fri, Aug 11, 1995, 6:43:05 AM Sounds like you're taking a crash course in adaptive technology and eye diseases! From what little I know about macs, they've had screen enhancements for quite a while. ------------------------------------------------------------------------------- From: Juanita Beeson, 74652,1210 To: shulabeth,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #456915, reply to #455241 Section: Complications [8] Forum: Diabetes+ Date: Fri, Aug 11, 1995, 6:43:06 AM Sounds like you're really doing some research. From what little I know about macs, they've had enlarged fonts quite a while. ------------------------------------------------------------------------------- --------- From: Ray Bowler, 72733,1531 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #451116, reply to #449611 Section: Complications [8] Forum: Diabetes+ Date: Sun, Jul 30, 1995, 12:23:14 AM > So, I put the question to all of you: WHICH COMPLICATION IS THE MOST FEARED? > > > Amputation(s) Amputations any day. --Ray B. ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Ray Bowler, 72733,1531 Topic: Most Feared Complication Msg #451131, reply to #451116 Section: Complications [8] Forum: Diabetes+ Date: Sun, Jul 30, 1995, 1:31:09 AM Thanks, Ray. Yours was the first vote for amputations, actually. For me it is blindness, but for most others it seems to be becoming a burden on their family. ...and a smattering of other responses. This will make for an interesting article, methinks. -=Ben ------------------------------------------------------------------------------- From: Dave Groves-Wizop, 76703,4223 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #451493, reply to #451131 Section: Complications [8] Forum: Diabetes+ Date: Sun, Jul 30, 1995, 6:56:08 PM I guess if one doesn't have a family, the fear of becoming a burden is mitigated. It never crossed my mind. Since I am a photographer and am also a major appreciator of visual arts in general, the fear of retinopathic blindness is high on my list, but the fear of trauma induced by hypoglycemia, having already happened to me, I must place uncontrolled hypoglycemia caused by DCCT highest on my list. ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Dave Groves-Wizop, 76703,4223 Topic: Most Feared Complication Msg #451724, reply to #451493 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 12:48:21 AM Dave, thanks for your input into this most vexing question. My article is taking form (though not yet on paper) as more people voice their opinions. I will put this out on the INTERNET to see what I get back ...though I don't expect it to be much. I remember well reading of at least one of your HG events. I have had a few, none nearly so severe ... but one, at least, did scare me due to its completely unpredictable nature. I was at a 38bg only an hour after being in the 118 range and had only NPH in me about 1 hour beforehand. Never did figure out the whys or wherefores of that one. But I am sure glad that Debbie was there to tell me to test ... my conscious mind KNEW I could not be low!!! -=Ben ------------------------------------------------------------------------------- From: Dave Groves-Wizop, 76703,4223 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #452192, reply to #451724 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 11:50:23 PM Ben, You are talking about the auto accident or the psychological diagnosis? ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Dave Groves-Wizop, 76703,4223 Topic: Most Feared Complication Msg #452240, reply to #452192 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 1, 1995, 1:09:04 AM A good way to end the article, methinks. Thanks, -=Ben ------------------------------------------------------------------------------- From: Jack CS Pedersen, 76630,3053 To: Ray Bowler, 72733,1531 Topic: Most Feared Complication Msg #451302, reply to #451116 Section: Complications [8] Forum: Diabetes+ Date: Sun, Jul 30, 1995, 1:11:14 PM Ray: As an amputee (due to accident many years prior to DM), this is a far more acceptible condition to me than vision loss! Jack Pedersen/OR ------------------------------------------------------------------------------- From: John Davis, 73455,43 To: Jack CS Pedersen, 76630,3053 Topic: Most Feared Complication Msg #452222, reply to #451302 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 1, 1995, 12:32:12 AM I too have to agree with blindness as the most feared complication. If I had to I could do without a hand/arm or leg/foot (would not be happy but as I said elsewhere, You do what you got to do) but part of my "life plan" is to do alot of traveling by car. My wife can't do that kind of driving and I can't afford to hire a chauffer and Greyhound won't pull my camper so...... ------------------------------------------------------------------------------- From: Ray Bowler, 72733,1531 To: Jack CS Pedersen, 76630,3053 Topic: Most Feared Complication Msg #453572, reply to #451302 Section: Complications [8] Forum: Diabetes+ Date: Thu, Aug 3, 1995, 7:28:22 PM > As an amputee (due to accident many years prior to DM), this is a far more > acceptible condition to me than vision loss! This is interesting, since, as I point out to Ben in another message, I have dealt with blindness in others to the extent that it is not as much a problem as is amputation with which I am not familiar. Could it be that we have problems with that which is unfamiliar? I need to do some thinking. Thanks for your comment. --Ray B. ------------------------------------------------------------------------------- From: Bruce Beale-SYSOP, 100345,3667 To: Ray Bowler, 72733,1531 Topic: Most Feared Complication Msg #453695, reply to #453572 Section: Complications [8] Forum: Diabetes+ Date: Fri, Aug 4, 1995, 2:01:04 AM Ray, I often feel that people put of what is going to be perhaps inevitable for far too long. I have seen many people completely incapacitated and having most painful dressings for two years or more get sicker and less competent. Finally the foot comes of and within a couple of weeks they are hopping around looking and feeling very much better. -Bruce Beale, Heathrow, London, UK. ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Ray Bowler, 72733,1531 Topic: Most Feared Complication Msg #451723, reply to #451116 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 12:48:18 AM Ray, thanks for your input. May I ask what it is about amputations that is so fearful for you? I am not being nosey, I just would like to know how you came to your conclusion. Thanks, -=Ben ------------------------------------------------------------------------------- From: Ray Bowler, 72733,1531 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #453571, reply to #451723 Section: Complications [8] Forum: Diabetes+ Date: Thu, Aug 3, 1995, 7:28:17 PM > I just would like to know how you came to your conclusion. Ben, This takes some thinking and so the following is my feeling at the moment and is very much subject to change. First thing that comes to mind is that I know how to cope with blindness and what aid is available. I have a daughter who is visually impaired (legally blind). There is a wealth of help for this which can mean mobility and ability to handle life. With modern technology I can even do a lot with the computer. On analysis the first thing that bothers me about amputation is the pain of the process of the surgery. The second is that I am physically impaired to a great extent by heart problems and am often frustrated by not being able to do things which I used to do easily. There would be a whole new set of problems to deal with in getting used to this situation. I know the problems of blindness and how to cope. But then I don't really want either and so will work at having good control. --Ray B. ------------------------------------------------------------------------------- From: shulabeth,manchester,u.k, 100417,1501 To: Ray Bowler, 72733,1531 Topic: Most Feared Complication Msg #453725, reply to #453571 Section: Complications [8] Forum: Diabetes+ Date: Fri, Aug 4, 1995, 5:04:04 AM >> visually impaired (legally blind). There is a wealth of help for this << ray i have just asked this question of juanita beeson in this thread, can you please add a few lines on what your daughter uses for computer access? shula -shulabeth,manchester,u.k ------------------------------------------------------------------------------- From: Ray Bowler, 72733,1531 To: shulabeth,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #455122, reply to #453725 Section: Complications [8] Forum: Diabetes+ Date: Sun, Aug 6, 1995, 10:17:09 PM > can you please add a few lines on what your daughter uses for computer > access? My daughter is legally blind but has some vision so her situation is different from that of a person who is completely blind. Because of her situation I have had to deal with all of the ramifications of blindness and also have come to know some people who are completely blind. My daughter puts her face close to the screen and reads it slowly. She also plays the piano the same way. I have found that there are programs which will enlarge the letters on the scree and there are magnifiers which attacth to the monitor and go over the screen. You probably already know about the computers which read the screen and tell the person in words what is there. Good luck in finding more out. --Ray B. ------------------------------------------------------------------------------- From: shulabeth,manchester,u.k, 100417,1501 To: Ray Bowler, 72733,1531 Topic: Most Feared Complication Msg #455991, reply to #455122 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 8, 1995, 11:12:01 PM >> Good luck in finding more out. << hi ray hopefully, when this thread is stored as afile - like it no doubt will be - it might stand as aresource listing too. you may have noticed other comments i make elsewhere in this thread. i use an offline reader which automates the retrieval of messsages and sending out replies like this. one of the features of navcis is that it has a way to enlarge the text automatically but mainly between other users of the program. one member who has been through a transplant procedure - beverly dieball uses a laptop - i think from a hospital bed - when her msgs go past the text is about an inch high. i cant remmeber offhand but most any computer program will enlarge text easily - this system is probably very nice for an olr, but i havent begun to use it in this way - what i wouldnt mind knowing is whether there is an optimised font for sight impairment use. some while ago in the 50s or 60s i think it was a firm of architects who made up a lettering system - or fonts that make up the ones used in traffic signs and there is something similar for airports - these are stylised simplified letters that are very clear to reda ta spped and in poor light. its very sad that we need to deal with these things if they are ever preventable - i mean in diabetes control - yet we cant be 100% right in every case - why make life harder for anybody though - we have gone through 100s of shareware fonts for dtp work and its very challenging to find something nice and restful for our eyes - its something we dont really consider until its too late. is your daughters sight liable to deteriorate more? nb have you anything like a swinging arm to bring the screen nearer to her without stretching her body? [hey, thanks for commenting,ray!] shusquint -shulabeth,manchester,u.k ------------------------------------------------------------------------------- From: Brooke Disbrow-SYSOP, 74627,3163 To: shulabeth,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #456027, reply to #455991 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 8, 1995, 11:41:20 PM Shu, It's all stored so far. Brooke ------------------------------------------------------------------------------- From: shulabeth,manchester,u.k, 100417,1501 To: Brooke Disbrow-SYSOP, 74627,3163 Topic: Most Feared Complication Msg #456080, reply to #456027 Section: Complications [8] Forum: Diabetes+ Date: Wed, Aug 9, 1995, 1:52:25 AM >> all stored so far. << yep. looks like a real box office hit this one -shulabeth,manchester,u.k ------------------------------------------------------------------------------- From: Brooke Disbrow-SYSOP, 74627,3163 To: shulabeth,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #456152, reply to #456080 Section: Complications [8] Forum: Diabetes+ Date: Wed, Aug 9, 1995, 8:07:27 AM Shu, Plus, Ben is writing a column/article based on it, which is why he asked the question in the first place. Brooke ------------------------------------------------------------------------------- From: Ray Bowler, 72733,1531 To: shulabeth,manchester,u.k, 100417,1501 Topic: Most Feared Complication Msg #456806, reply to #455991 Section: Complications [8] Forum: Diabetes+ Date: Thu, Aug 10, 1995, 11:11:26 PM > is your daughters sight liable to deteriorate more? > > nb have you anything like a swinging arm to bring the screen nearer to her > without stretching her body? Thanks for asking. Her vision is a birth defect. Some of the nerves in her eyes didn't develop at all and the eyeball itself is not the normal shape. I hadn't thought of the swinging arm for her monitor. I should have because I have my monitor on one at work. Thanks for the suggestion. This is an interesting thread. --Ray B. ------------------------------------------------------------------------------- From: shulabeth,manchester,u.k, 100417,1501 To: Ray Bowler, 72733,1531 Topic: Most Feared Complication Msg #456880, reply to #456806 Section: Complications [8] Forum: Diabetes+ Date: Fri, Aug 11, 1995, 5:06:30 AM >> This is an interesting thread. << ray we can make it more interesting again - do you realise that in extended space exploration legs arent necessary in a weightless environment? i read around this subject as part of a general interests in science. things we view as essential are an encumberance in different environments. what i was researching posited that we would need at some time to adapt human beings to need by genetic mutation if we were to inhabit other planets - and certainly to outlast long hibernation periods - maybe i am alraedy ahead on that in the way i pass out after a heavy meal northern ireland has a wel known blind press photographer - he sits in readiness in pubs/bars until a joke is about to be understood or a fight to begin on the neraby tables then he 'freezes' the action by pointing and clicking at just the right moment. in liverpool there is a radio presenter who visits people who have odd hobbies or collections - this males it more pleasurable for the radio audience who are also 'blind' - the enthusiast will not just say "the clock on the wall there", but " the gold and red clcok with ornate gilt edges, and a mother of pearl face with black scroll hands about 2 feet high set in a walnut case about a foot deep " - do you get my meaning. i view people with different abilities as inspiring - new ways of doing things better - we all need doors that open easier, and signs that are easy to read. as a acyclist i benefit from paths that are also used by wheelchairs and vice versa, and wheelchair racers are just another form of cyclist with impressive skills and ideas. do we really use what we have anyhow - i can spend hours looking at a few flowers and i can spend more just touching gently and ofcourse smelling the subtle or broader differences. many pass this by - wastelands are intensely fascinating. nor would i wish anyone to lose any sense of body part - its just taht we view life in a closed way - pain has its own definiet function - but not continuous pain - i dont want more of the litle i have had from time to time. its like a close friend i have who is 59" high and i am 69" we both want to be where the other is, but it makes us both more interesting to others. and to each other - she has children that i dont but also a big extended family who drive her nuts - i have had a more adventurous life but envy her connections. dare i say that the title of this thread could have been the most 'tolerable' complication - i feel uncomfortable in saying i am afraid of something i know little about - a friend is worried and concerned about using an insulin pump for the first time - i wouldnt bat an eye on that or if i ever needed to inject - my current complication is terrific tummy problems - we might gladly swap places i suspect. i probably fear kidney problems or liver breakdown . the mortality is an issue there - maybe if we also said conditions one could live with somehow.lets talk about what we could swap for also. most of the problems disabled people have is how others accept them and how they [ i best say we] are patronised or treated condescendingly . in north england a social worker course has its students strappped in a chair for a day, given glasses with taped over lenses, played loud muzak to and only led to the toilet very four hours - just so they know what life might be like for the old people they may get to care for in homes. shuprovocateur -shulabeth,manchester,u.k ------------------------------------------------------------------------------- From: David Yolleck-SYSOP, 75430,1732 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #451266, reply to #449611 Section: Complications [8] Forum: Diabetes+ Date: Sun, Jul 30, 1995, 10:51:19 AM I vote for ETC., whatever that is. David ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: David Yolleck-SYSOP, 75430,1732 Topic: Most Feared Complication Msg #451725, reply to #451266 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 12:48:22 AM Your vote is counted. -=CTE ------------------------------------------------------------------------------- From: Hanny D. Budnick, 74031,77 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #452131, reply to #451725 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 11:26:04 PM Hi, Ben - most feared complication? I think my body is already working on it: I am VERY involved in dance and do a lot of teaching - and I have bilateral polyneuropathy in my feet... I hiked the entire Appalachian Trail (more than 2,300 miles) in one season and did not even have one single blister - and now this nagging reminder that my diabetes has endowed me with permanent leather stockings which are too tight... What's a hiker and dancer without functioning feet??? Hanny ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Hanny D. Budnick, 74031,77 Topic: Most Feared Complication Msg #452241, reply to #452131 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 1, 1995, 1:09:06 AM Hanny, poignancy will score you points every time. Take care. Yours is a unique perspective into the complicated issue of complications. -=Ben ------------------------------------------------------------------------------- From: Larry Lands, 70353,2773 To: Hanny D. Budnick, 74031,77 Topic: Most Feared Complication Msg #452778, reply to #452131 Section: Complications [8] Forum: Diabetes+ Date: Wed, Aug 2, 1995, 1:44:20 AM Hanny, I too am a big time dancer, and also have had severe bilateral peripheral neuropathy for about 12 years now. It's definitely a lot tougher when your feet give you no feedback as to what's happening. I'm quite competitive in the novice class, and can hold my own in the Jack & Jill events in Push (aka West Coast Swing) here in the north Texas area. Being in Ft Worth I'm also pretty good at 2-Step, 3-Step, Progressive Double Two, Shuffle, Waltz, and Swing, with a few other variations thrown in. Last year I came *very* close to losing a foot, and it was a terribly anxiety filled time for me. Still, I've adapted to all my other maladies and I'm sure I'd do so again if I had to, as badly as I'd hate it. (Dancing is my only real exercise these days) So Kidney problems are of much worse concern to me, since generally speaking they are fatal and that'd pretty well cut off ALL my dancing! Larry :-> [Ft Worth/TX] ------------------------------------------------------------------------------- From: K & M Dare-Gentile, 75401,3566 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #451846, reply to #449611 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 10:20:29 AM Hi Benjamin... I have been following this thread and am finding it to be quite interesting .. and the source of much food for thought. (Not to mention being a doorway to discussion with my husband, Michael.) At one time I might have thought blindness would be the end of the world for me, and I continue to fear the devastating effects it would have on me and my family. However, 9 years ago, when I had my first round of laser surgery for proliferative retinopathy, I was forced to start dealing with the possibility/likelihood that I will someday have to face the reality of severe visual impairment. I coerced my opthalmologist to give me a number to give me a sense of how serious a problem I was dealing with. He said five years. Well, it has since been 9, and vision is still good. One of the things my family did to help us deal with this was to get involved with the 4-H Seeing Eye project. My children raised two Seeing Eye puppies through the program, and we all felt very connected, knowing directly the importance of this wonderful program. I have somewhat formed a mental set to deal with this eventuality. I hope. A few years ago I developed a foot infection that required almost a year on IV antibiotics (off and on), 3 hospitalizations, the eventual amputation of part of my toe, and as a result QUITE limited mobility for the year. Then last year I managed to break my foot, and not know it for some time....I have severe neuropathy...resulting in another few months of couch potato existance. I am normally a quite active person ... I ride horses, raise goats, have 6 ACTIVE kids that I homeschool, plus an assortment of 8 or so other animals ... so I was devastated, to say the least. I love walking. It has to be my favorite release of tension and frustration (after riding, that is, but walking is easier to fit in at a moment's notice), and there's nothing like the rush I get after a brisk walk or a lively ride ... goes a long way to making me mentally and physically on top of the world. Being restricted from these things was one of the most depressing things that has ever happened to me, and I would, at first thought, place that as my most feared complication .. immobility due to amputation, neuropathy, etc. Then, thinking about it, I realize that I am already living with what I feel to be the most devastating complication of diabetes ... the effect on the people around me and the resultant depression. As I try to tell my five year olds that Mommy can't deal with their game of 500 questions when my BG is 50 and dropping, and I lose my temper, my anger towards this beast rages, and my feelings about myself deteriorate. When I yell at my husband when he pushes me to make a decision about dinner, and I am dealing with trying to level and assess my basal rates and would rather not eat at all, I rage inside. I lived as a single parent for nine years. My son is now 20, and I have many regrets about his reality when growing up...in many respects having to grow up quickly because of the circumstances presented by my condition...having to be aware enough to help Mommy if she didn't realize she was low, putting up with my mood swings (and my bouts of depression and anger). You get the picture. The psychological impact of this condition on the individual and significant others takes a terrible toll in my estimation. I fear its impact on my children...their children in turn. How will my diabetes impact on their decisions in life? Decide not to bear children because of the genetic factor? Have to change life dreams or plans due to an ill or incapacitated mother? Have feelings of anger or doubt about self as a result of being confronted one too many times by the fury of mom's lows or highs? FWIW you now have my thoughts on this subject. I appreciate your raising the issue and the opportunity for this forum to share some important feelings and fears. Getting things out in the open, finding out how much you have in common with others ... very valuable experience! BTW, what is the anticipated destination for this article? I would be most interested in reading this article. You will share it with us??? Peace...Karen -K & M Dare-Gentile ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: K & M Dare-Gentile, 75401,3566 Topic: Most Feared Complication Msg #451893, reply to #451846 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 11:53:16 AM Karen, your eloquent description of life as a diabetic is quite poignant. I hope you won't mind me sharing it? May I use your name, too or do you prefer to be anonymous? I do intend to submit this article to Diabetes Interview, Forecast and will publish it on-line both here and the INTERNET. I used to have a regular "News from the NET" column in DI, but a disagreement between the editor and me has kept me from continuing until recently. I do thank you for the "doorway to discussion" comment, no better reason for raising the question can be made. Your comment about the effect on the people around you and the resultant depression, the effects on your 500 questioning child during bouts of low bgs AND how your self image/ability deteriorates is brilliantly clear. Thank you. -=Ben ------------------------------------------------------------------------------- From: K & M Dare-Gentile, 75401,3566 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #451986, reply to #451893 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 4:58:13 PM Ben... You're welcome. Thank you for your most kind reply. Yes, you certainly may use my response, as well as my name if you so desire...I don't think there is anyone out there who requires that I maintain my anonymity. Although, hanging out with this sometimes rowdy crowd....who knows what will be in the future? I'll take my chances. I am very well acquainted with Forecast...having subscribed for over 30 years...but I am unfamiliar with Diabetes Interview. What kind of publication is this? Obviously you are a writer. I assume diabetic, from your initial post in this thread. Any other history you care to share? What other kinds of writing do you do besides diabetes? As I said previously, I'll be most interested in reading your article. Good luck. Peace...Karen PS ... I believe you said in your post that at the outset of this survey blindness was your greatest fear? Where does this complication stand in the ratings at this point? Just curious. -K & M Dare-Gentile ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: K & M Dare-Gentile, 75401,3566 Topic: Most Feared Complication Msg #451990, reply to #451986 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 5:27:03 PM Karen, I will certainly use your posting. I mostly write about Diabetes these days, but use a lot of my "finger" time to write proposals. DI is a fine publication out of San Francisco. If you want a free issue, call their 800# and tell them you heard about it from me and want to have an issue to mailed to you. It is a far superior monthly to Forecast, in my opinion. (800) 473-4636 Thanks for the posting again and the permission. -=Ben ------------------------------------------------------------------------------- From: R. Rubinstayn DDS-SYSOP, 100101,2665 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #453513, reply to #451893 Section: Complications [8] Forum: Diabetes+ Date: Thu, Aug 3, 1995, 5:36:14 PM Ben, >> I do intend to submit this article to Diabetes Interview, Forecast and >> will publish it on-line both here and the INTERNET When the article will be finished, if you want, I can translate it to French and you may even be published in "Equilibre" the journal of the French diabetes association. - Robby (France). Type 1 since '84 - ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: R. Rubinstayn DDS-SYSOP, 100101,2665 Topic: Most Feared Complication Msg #453565, reply to #453513 Section: Complications [8] Forum: Diabetes+ Date: Thu, Aug 3, 1995, 7:15:27 PM Far Out. I haven't ever been published in French, as far as I know. Thanks for the offer, if it is on line here, you download it as long as my copyright is included in the article. -=Ben ------------------------------------------------------------------------------- From: R. Rubinstayn DDS-SYSOP, 100101,2665 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #454795, reply to #453565 Section: Complications [8] Forum: Diabetes+ Date: Sun, Aug 6, 1995, 4:55:18 AM Ben, The final article is in the lib? What is the name? - Robby (France). Type 1 since '84 - ------------------------------------------------------------------------------- From: Jody A. Dickey, 76746,2131 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #451966, reply to #449611 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 3:29:16 PM Hi Ben, Blindness...It was reading the pamphlet at the eye doctor that got me out of denial to get the official diagnosis. Second choice would be kidney failure. Jody ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Jody A. Dickey, 76746,2131 Topic: Most Feared Complication Msg #451991, reply to #451966 Section: Complications [8] Forum: Diabetes+ Date: Mon, Jul 31, 1995, 5:27:05 PM Thanks, Jody. I will put you amongst the eye/kidney folk. May I use your comment & name? -=Ben ------------------------------------------------------------------------------- From: Jody A. Dickey, 76746,2131 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #452457, reply to #451991 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 1, 1995, 2:28:17 PM Hi Ben, Permission granted to use name, comments, etc. Jody ------------------------------------------------------------------------------- From: R. Rubinstayn DDS-SYSOP, 100101,2665 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #452340, reply to #449611 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 1, 1995, 9:54:16 AM Ben, >> Gangrene Amputation(s) Kidney disease & failure Retinal damage & >> blindness Mood swings Impotency/Loss of sex drive Heart disease Kidney problems and blindness (in that order). One can live with an amputated member, with mood swings etc (even with being blind, I know, but that is an idea that frightens me!) I suppose, one gets used to being blind too... - Robby (France). Type 1 since '84 - ------------------------------------------------------------------------------- From: Bruce Beale-SYSOP, 100345,3667 To: R. Rubinstayn DDS-SYSOP, 100101,2665 Topic: Most Feared Complication Msg #452431, reply to #452340 Section: Complications [8] Forum: Diabetes+ Date: Tue, Aug 1, 1995, 1:23:21 PM >> one gets used to being blind too... << Robby, I am not sure a blind dentist is going to get much business. -Bruce Beale, Heathrow, London, UK. ------------------------------------------------------------------------------- From: R. Rubinstayn DDS-SYSOP, 100101,2665 To: Bruce Beale-SYSOP, 100345,3667 Topic: Most Feared Complication Msg #454801, reply to #452431 Section: Complications [8] Forum: Diabetes+ Date: Sun, Aug 6, 1995, 4:56:04 AM Bruce, >> I am not sure a blind dentist is going to get much business. I haven't thought of that :( My incapability insurance might pay me some money but... I think that I'll stick to my tight control ;) - Robby (France). Type 1 since '84 - ------------------------------------------------------------------------------- From: Bruce Beale-SYSOP, 100345,3667 To: Ray Allison, 76075,1523 Topic: Most Feared Complication Msg #450080 Section: Complications [8] Forum: Diabetes+ Date: Thu, Jul 27, 1995, 6:20:21 PM Ray, I work at a Regional Transplant Centre. Very few NIDDM patients get offered, or are even considered for a transplant and I do not think any obese NIDDM would even get to the centre. Organs are in desperately short supply. Availability is something of a lottery. We get very few Type 1's these days for transplants and that is because our standard of DM care in Europe is streets ahead of yours in the States. Chronic disease does not respond very well to an insurance based service. A NIDDM is often first dx'd as a DM because he is showing signs of renal failure. Type 1's rarely have complications at dx. The complications have often been caused by the dreadful high fat diets we were on for so long. We aim to give all Type 1's a urine test every quarter and if albumin shows we would bring them back for 24 hour urine collection. Your countries care of people suffering from chronic disease is very poor indeed. It compares very badly with many of the poorest countries in the world. Having said that Chile has a higher standard of adult literacy than the UK so we have plenty of faults. Most countries in the world have a far higher standard of medical care for a much lower share of the GDP than the States. You have simply got to loosen the stranglehold of the insurance companies. -Bruce Beale, Heathrow, London, UK. ------------------------------------------------------------------------------- From: Bruce Beale-SYSOP, 100345,3667 To: Ray Allison, 76075,1523 Topic: Most Feared Complication Msg #450325 Section: Complications [8] Forum: Diabetes+ Date: Fri, Jul 28, 1995, 8:21:07 AM >> most IDDM's have had diabetes a mucher longer period of and therefore more time to develop kidney disease << Ray, Many NIDDM's have had DM for up to twenty years sometimes more without the disease ever having been dx'd. The dx comes about as a result of their going to see a doctor about a complication of the undx'd dm. -Bruce Beale, Heathrow, London, UK. ------------------------------------------------------------------------------- From: Ann B. in Puyallup WA, 76413,2114 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #454973 Section: Complications [8] Forum: Diabetes+ Date: Sun, Aug 6, 1995, 5:56:27 PM For me, kidney failure, with amputation a close second. But they're all scary. This may sound odd, but heart disease worries me the least. Probably because I'm more afraid of miserable living than of death. Ann ------------------------------------------------------------------------------- From: Dema K. Hudson, 102261,330 To: All Topic: Most Feared Complication Msg #456063 Section: Complications [8] Forum: Diabetes+ Date: Wed, Aug 9, 1995, 12:53:10 AM FYI--I just returned from a several day vacation with my "significant other" whohas had diabetes for 45 years (51 now). He has been blind for 24+ years. If given five wishes, regaining his sight would not be among them. Number one is, however, reversing any other damage caused, particularly to his kidneys. We had a great time--I get to walk his guide dog at night when we stay in unfamiliar places. We do keep pretty strict schedules, and he is diligent in his bg management..usually tests 4-6 times a day. His kidney function now is better than 10 years ago, and he would say he's had a great life! Mine has certainly been improved from our relationship, and his blindness is a minor inconvenience to us both. Much more important is our differences in need for privacy and what time to go to bed. Occasionally he has had really low bg. I can tell now and get the orange juice, but he lives alone very successfully..much less stressed out than I am.. ------------------------------------------------------------------------------- From: Benjamin Westheimer, 70631,60 To: Dema K. Hudson, 102261,330 Topic: Most Feared Complication Msg #456074, reply to #456063 Section: Complications [8] Forum: Diabetes+ Date: Wed, Aug 9, 1995, 1:24:11 AM Dema, thank your for this perspective on having DM complications. Would your friend have felt this way before he lost his sight? I have an article in the hopper on what complications people fear the most and would certainly like to use your perceptions, if that is acceptable to you. -=Ben ------------------------------------------------------------------------------- From: Dema K. Hudson, 102261,330 To: Benjamin Westheimer, 70631,60 Topic: Most Feared Complication Msg #456393, reply to #456074 Section: Complications [8] Forum: Diabetes+ Date: Thu, Aug 10, 1995, 12:10:16 AM Ben-An excellent question; I'll ask him tomorrow. Feel free to include comments. How can we get a copy of the article? ------------------------------------------------------------------------------- From: Hanny D. Budnick, 74031,77 To: Dema K. Hudson, 102261,330 Topic: Most Feared Complication Msg #456162, reply to #456063 Section: Complications [8] Forum: Diabetes+ Date: Wed, Aug 9, 1995, 10:27:08 AM Hi, Dema - thank you so much for your post about your cuddle-mate! I have met a number of blind folks, born blind or having become blind sometime during their life, who lead VERY gratifying and productive lives and have adapted to their special challenges in - to an outsider - most amazing ways. I have also met a woman who turned vegetable when she became blind. A highly intelligent person, a musician with perfect pitch, refused to learn Braille (the instructors were sooo condescending...), gave away her piano and organ, never learned how to negotiate her living space (how many steps before you turn to avoid running into the wall) and buried herself in her misery, refusing any and all help. So, it is very encouraging to hear about a blind person whose first wish would go for relief of other complications of diabetes! Hanny ------------------------------------------------------------------------------- From: Dema K. Hudson, 102261,330 To: Hanny D. Budnick, 74031,77 Topic: Most Feared Complication Msg #456397, reply to #456162 Section: Complications [8] Forum: Diabetes+ Date: Thu, Aug 10, 1995, 12:20:11 AM Hanny-Thanks for the response. It isn't always a breeze, of course, and condescension is probably my most difficult thing to deal with. Dennis has learned to let anger and negative thoughts go--I, however, get furious. That prob'ly helps nothing--today, for instance, I was irate with his school ennabler/counselor--she treated him as though he had very little ability to plan his life, although he has close to a 4.0 GPA. However, I try very hard not to interfere with his dealing with issues himself (most difficult for me). I hate to hear stories like your friend who isolated herself. Perhaps Dennis could offer some support to others--I'll try to get him in forum discussion next time he's at my house.