Mar 26, 2009

Comments on Facing Alzheimer's A Personal Story

ABC Nightline did a short segment on Alzheimer's. The shows primary focus was on Meryl Comer and Terry Moran.

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I thought the show was very powerful and focused.

It really delivered two messages: how completely devastating Alzheimer's can be; and, the uncertain fate of the offspring of Alzheimer's sufferers.

The show tackled a very important issue -- Would you take the test to determine if you are genetically predisposed to Alzheimer's.

The show was very honest and candid. It showed the reactions of both Terry Moran and Meryl Comer when they received their Alzheimer's test results. There really is no way to describe in words the looks on their faces. If I can obtain the video I will put it up here on this website.

Nightline should rerun that show in an earlier time slot. I believe it would do a lot of good and have a dramatic impact on viewers. I know it would give those of us living Alzheimer's from the front a sense that through the efforts of reports like this one--help is on the way.

The following are viewer comments:
Thank you for sharing your story. My mother passed away in July from complications of Alzheimers. Like most people we knew nothing of the disease at onset. Although we knew something was wrong we thought it was just aging. We were wrong. Had we known some of the early signs to look for we could have gotten treatment sooner and maybe delayed her decline. Since her death I have struggled to understand the disease that took her from her family. I had no idea it could be genetically linked. Now, like you, I want to know if the gene is present for me. Although my brothers and sister are in their early 60's and show no sign of the disease as yet, I know that not all childern will carry the gene. Would a positive diagnosis change the way I live my life now? Definitely. I am afraid for myself and my daughter.
Posted by:
BittyBat 8:12 AM

I am a 44 yr old female and have this terrible disease in my family. Most recently my mother passed away 4 yrs ago, my mother's sister before her and my grandmother as well. I am sure that I know my fate, but my question is this - If I were to be tested and I am found to have the genetic markers before actually being diagnosed with the disease, what does this do to my ability to secure affordable insurance or would insurance companies use this against me to deny coverage?Terry, Thank you for sharing your story.Ellen
Posted by:
EllenD411 9:24 AM
In 2005, it was proven that the brains of people with alheimers had low insulin levels. In 2009, a researcher in St. Paul Minnesota developed a nasal spray of insulin and within 20 minutes of use, it improved brain function. Here's the kicker. Insulin is cheap and not a money maker, so the fear is, drug companies will not fund the research to get it FDA approved. It is heart breaking to see my mother and know, that a simple squirt of insulin in her nose, could help her and may have prevented where she is at now with alzheimers because it cost so much to get the nasal spray approved. They feel that alzheimers may be type 3 diabetes. If anybody who reads this can help get this study underway, please do.
Posted by:
littledogs2cute 9:20 AM
Thank you for sharing your story. I think watching a loved one suffer this horrible disease is the worst emotional torture one can endure. My grandmother and mother suffered from this affliction. We all thought Oma was senile, that's what they called it then, senility. Mom saw this coming so she prepared herself and us. Mom passed in November 2008. My worst fear is the thought that my daughter and son will have to go through the emotional and physical pain of watching me succumb to Alzheimers or some other form of dementia. I pray that someone finds somthing to help. Maria 3/36/09
Posted by:
kuby6g 7:58 AM
thank you Terry for sharing with your viewers the personal side of tonights story. For nine years I have cared for my darling husband. Just this month I had to place him in a SNF so he could get the care I am no longer able to provide. Every day when I go to visit him I watch him slowly slipping away from me and can do nothing to slow down or stop this dreadful disease. His life has little or no quality left to it and personal dignity is a thing of the past. I applaud your bravery and wish you the best. There has to be some way to get more money poured into the necessary research which will put a stop to this disease. Please do what you do best and continue to air programs on this subject in hopes that some miracle will occur if not to cure the disease, then to make it possible to prevent it. Keep fighting and tell us how to help.posted by:Shebamom Mar.25
Posted by:
shebamom1224 3:31 AM
Terry, THANK YOU from the bottom of my decade-long sole-caregiver-for-my mom-with-AD heart for this most unselfish and brave effort tonight on Nightline. Am moved beyond words (not easy for me for whom words come easy). Not only our healthcare system, but both family and institutional caregivers are ill-equipped to deal with those affected so tragically by this insidioius disease process affecting too many, and counting. I am consumed with anger and frustration at the daily assault on human diginity to my beloved 80's mother by well-meaning (for the most part) assisted-living facility paid caregiving staff and her fellow residents. We desparately need better training and educational tools available to include a heavy dose of sensitivity training for those going down this lonely, confusing last road in their life's journey. I would appreciate your network's delving into this crucial area of care more thoroughly, giving it the national platform and attention it so richly deserves. Regardless of their 'stage' or 'level' of involvement, inside EVERY person with Alzheimer's, there are at least remnants of SOMEBODY there who needs love, reinforcement and understanding, not just placation and custodial efficiency. Easy to do, it isn't, but necessary to face straight up with intelligent compassion, it is. I've missed few Nightline segments since long before that master-of-understatement and most enjoyably articulate Ted Koppel retired. You, Cynthia and Martin are doing a great job! A tribute to the quality news program that Ted developed years ago. Keep up the good work!- A faithful viewer, fan and daughter/caregiver of her mother with Alzheimer's disease.
Posted by:
deadi9 2:49 AM
Terry, just the very word Alzheimers ignites a sickening punch right into my gut. With other terminal diseases, and I consider Alz. in this category, there is at least some reality to "one's" final curtain call. Yet this disease deprives the inflicted of that very moment, and sadly keeps the physical body as a candle with the flame long burned out. I have witnessed Alz. first hand with a loved family member, and remember crying myself to sleep at nights wishing for some way to release that trapped spirit within. For me, this went on for over 16 years. I hope you will use every effort you can muster to bring this to the forefront of research and development towards a cure. Best wishes, Richard Birchard, San Francisco, CA

Original content +Bob DeMarco

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