Wednesday, December 17, 2008
More and more famous people are going to be diagnosed with dementia and Alzheimer's. Maybe that's what it will take for it to get some more attention in the media and from the government.
(screenprint of original article)
Thursday, December 11, 2008
But as I spent more time trying to communicate with my father’s ghost, I realized something horrible. Something that stayed with me when I woke up, even as the other details of the dream faded away.
My father’s ghost still had Alzheimer’s.
That is not how it is supposed to be. If you have dementia, when you die, you get everything back. You have to. You die and you go to the Elsewhere bar and have a drink. Whatever it was your soul was supposed to learn (or teach you) by stripping away your memories and your personality, you learn it and have a good chuckle, and then you hold the door for some newcomers (8 per hour, just from the US).
You don’t come back as a sad, demented ghost.
I don’t know what in my psyche triggered that dream and I can only hope that it was wrong.
(cross posted to my Shamanic Musings blog)
Tuesday, November 25, 2008
It's been a year today since I saw my dad. Tomorrow it will be a year since he died. That means, somewhere around the time I was putting Nutter to sleep, the anniversary of the last time my dad seemed to know who I was passed. It seems so far away, but I know that's because I spent so many years saying goodbye to my father and missing him when he was right there in front of me. One good thing about a long goodbye is that your mourning is totally different.
When my black cat died in 2006, unexpectedly, it was like part of me had been ripped out. I spent months crying and it was a year before I got another cat (not a replacement cat). I spent 18 months saying goodbye to Nutter, and although it was awful to take him into the vet and have the needle put in his leg and see the light go out of his big, pretty eyes, I didn't cry for weeks or even days. I still have my moments (like right now) when I miss my silly white kitty, but I'm okay with the fact that he died. He was 15 and he had cancer and he was done. He told me he was done and I honored that and let him go.
By the time my dad died last year, he was done too, and watching him die was like a battle. I can't even go back and re-read that section of this blog. It was horrible to have my cat killed (and face it, even though we say "put to sleep" and it was a gentle, painless act, at the end my cat was dead and I signed the paper making it so), but it was more horrible during his last days to watch the cat suffer, and to try everything to fix him and not be able to make it better for him—except to offer him that final needle. It really did stir up memories of last year and watching my father suffer with no hope of recovery.
I know I've said it before but why is a human allowed to suffer yet we can easily end the suffering of an animal, a lesser creature? If there was the slightest chance he could have woken and been my father again...oh how I would have fought for treatment. Instead the only treatments prolonged his pain. I can only hope that long before his body gave out, my father's mind and soul had fled to the Elsewhere Bar. No one should have to live for weeks in a body with a fever of over 100, with a broken and bleeding mind, burning up from an untreatable infection. I can't imagine how much physical pain he must have been in. Maybe that's why I was so intolerant of Nutter's final days. We took him to the vet and tried a last ditch treatment, which didn't work and left my kitty sprawled on the floor crying in pain, still unable to eat, hardly able to breathe. The very next morning, I made the call for his final appointment. No way was I letting that go on, as they say, "until nature took its course." I spent too long last year watching Nature's ineptitude with my dad.
I have so many wishes about my father’s death. I wish that he had died from that heart attack the year before (the same heat wave that killed my black kitty, in 2006). The hospitalization for the stent implantation sent him on a long spiraling journey to his death. We would have ranted and raved of course, saying he had more good years left in him, but he didn't. He had maybe 6 months (that next spring is when he started getting really violent) and "good" is relative. I wish that when he hit his head at the nursing home and the doctor told us he wouldn't survive the night, that he hadn't survived not only the night, but the next 6 weeks. His true, horrid suffering started then--with the seizures, the massive brain damage, the ongoing bleeding from the heart drugs (for the damn stent), and of course the lovely MRSA that finally did him in, although it took its time doing so.
I wonder if the resentment and anger over how my dad died will ever fade. I can get over that he had Alzheimer's, even though he got it way too early and his life was cut short. But the actual manner of his death, how he looked…I haven’t been able to put from my mind. The nursing home did the best they could keeping him comfortable and I hold no blame in my heart toward them. I hate that hospital though.
A new interview with Terry Pratchett, the author I like so much that got diagnosed right after my dad died, just came out. He says he has Alzheimer's but it's actually posterior cortical atrophy (which is some kind of weird variant, I guess). He's having trouble getting dressed and driving but he's still writing. I just read his newest book, Nation, which isn't part of his Discworld series. He was diagnosed partway through writing it. I didn't count how many times the book made me cry. It's not about someone with dementia--it's about two children from different cultures coming together to rebuild civilization after a tidal wave--but it has themes of social isolation, and descriptions of being a grey ghost in the world, unable to communicate with anyone. I wonder if he wrote any of it consciously as a metaphor for his condition? It also has a rather unhappy ending, in that what you WANT to happen doesn't. Rather like how Stephen King ended the Dark Tower series--the only way it could end, but not the happy and desirable outcome. Pratchett claims he has a few more books in him before the darkness takes him, and I hope so. Although the Discworld books don't have an overarching plot like the Dark Tower did, I still want to read more of them. Maybe Pratchett will try to come up with an ending, but I hope not. I hope that when his mind does leave this world, it goes there, to the back of an elephant standing on some turtles (or is it the other way around?) and he becomes a living part of Discworld and for him it goes on forever.
I guess that's all anyone can hope for, whether they call it Heaven or crossing the rainbow bridge or going to the Elsewhere Bar, that it goes on forever and no one's in pain anymore. To quote Kurt Vonnegut: "everything was beautiful and nothing hurt".
(screenprint of Terry Pratchett interview)
Since I last posted, saying I was putting Nutter to sleep, I also lost Zeebo and Onnie, two of my parrots. Zeebo died a couple of weeks after Nutter, with no warning. He was a hybrid and they don't live long--his sister was ancient at 16 and he was 15. A couple of weeks later, Onnie left me too. With no job, I can't afford necropsies, so I don't know what killed them, only that I feel very, very bad. My pet cemetery box has grown to be a pet cemetery shelf, I have so many tins of ashes. Ironically, on that same bookshelf are all my Discworld books.
Friday, September 26, 2008
Since August 2005, I have lost 3 parrots (Gwennie, Goober and Prism), a cat (Zen) and a father (the presumptive subject of this blog), plus a job (Connecticut Publishing). My white cat is going to be put to sleep tomorrow, if he survives the night, and my sure-thing job ended without warning, so let's up that count to 2 jobs and 2 cats. Plus my health is still not what it should be--I was nearly immobilized by my leg going bad in the spring, although it's better now due to nearly constant therapy.
Last year, when I was watching my father die, my friend asked me how I got out of bed in the morning without being crippled by grief. I told him honestly that if I gave in, even for one day, and called in sick to my life, that's where I would end up--in a bed the rest of my life, unable to get up and face the world.
There is good among the bad, of course. I've been named a Featured Blogger at Wellsphere:
So anyone who goes there searching for information on Alzheimer's will have access to my blog posts. I've got a few articles in my archive that I want to write about and hopefully I'll get to them over the next few days. So many new treatments seem to be coming out. Too late for my dad, but I try to think that it's not too late for someone else's dad (or mom, husband, wife, etc.)
Tuesday, September 09, 2008
Sharing with any who might be interested:
On behalf of Medicare, I’d like to invite you to a unveiling Ask Medicare, a new caregivers initiative from the Centers for Medicare & Medicaid Services (CMS), that will be held at . (See below for more information about the initiative.)* I came across your blog while researching caregiver blogs for this project and I found your relationship with your father very touching and relatable. Several years ago I helped my mother care for my grandmother in hospice at our home so I recognize some of the challenges and questions that you’ve addressed here; I hope that this new site will prove a helpful resource for other caregivers out there. I feel really good about being involved with this project and excited to see an institution like Medicare make an effort to reach out to citizens in a way that makes since for how normal people live their lives.
Here’s the basic info on the launch (sorry it’s long but I found it all important):
During the Webcast you’ll have the opportunity to submit questions related to caregiving that may be answered by Kerry Weems, Acting Administrator of CMS, as well as other leading experts from organizations including the , the National Alliance of Caregiving, and AARP. We will also be unveiling the new Ask Medicare Web page, www.medicare.gov/caregivers. This web page will provide updated, easy to use information and tools to assist caregivers in talking with their loved ones to make a family plan and in making informed healthcare decisions about a variety of topics from Medicare coverage to technology updates to emotional support.
How can you be a part of the conversation?
1. Register for the live Webcast here. The Webcast will be held to 1:00 PM EST.
2. Share this opportunity with readers. Perhaps you could mention the event in a post and let your readers know we are welcoming all interested eyes and ears to be a part of the initiative. If you’re interested, we can send you a link to a countdown widget that you can add to your page leading up to the Webcast and that links to the event registration page.
3. Ask your questions. Submit your questions related to Medicare and resources needed for caregivers using the form available on the Webcast registration page. You can also submit your questions during the Webcast using a similar form on the specified link.
4. Share your story. We are collecting caregiver’s personal stories that could be shared with our readers. Tell us your experiences as a caregiver and your advice for others. I’ve attached a letter from my colleague Wendy Davis with more guidance, if you are interested.
*Ask Medicare was developed in consultation with caregivers and partners to provide answers to common problems and address a wide range of questions about caregiving. We're reaching out to caregivers who can provide helpful feedback, interact with leaders of this initiative, and ultimately feel confident sharing this resource with their readers. CMS is the US federal agency which administers Medicare, Medicaid, and the State Children's Health Insurance Program.
I hope you’ll be able to join us for the launch and provide your reflections on the new site. Getting feedback from bloggers who attend the launch is going to be priceless going forward in making the site practical and valuable.
Please contact me with any questions leading up to the launch or if you would like to be more involved.
p.s.- Here’s a link to our Blogger Code of Ethics for your reference. At Ogilvy, we take this code very seriously and want to express the value we see in maintaining a mutual relationship with those we reach out to.
360 Digital Influence
Ogilvy Public Relations Worldwide
1111 19th Street NW
Thursday, August 21, 2008
In honor of my dad, I re-wrote ee cummings' famous poem "buffalo bill's defunct":
who used to
drive a calm oceangreen
and sell onetwothreefourfive chevysjustlikethat
he was a quiet sweet man
and what i want to know is
how do you like your blueeyed boy
(unfortunately I can't seem to maintain the proper line spacing to match the original)
Thursday, July 31, 2008
Daily pill that halts Alzheimer's is hailed as 'biggest breakthrough against disease for 100 years'
A daily capsule of rember, as the drug is known, stops Alzheimer’s disease progressing by as much as 81 per cent, according to trial results. Patients with the brain disorder had no significant decline in their mental function over a 19-month period....
It is the first time medication has been developed to target the ‘tangles’ in the brain that destroy nerve cells, leading to deteriorating memory.
The drug helps to disrupt this process, preventing the formation of new tangles and loosening those already created.
...Eventually the drug could be used to stop the disease in its early stages before symptoms have even appeared, it is hoped....The drug works by dissolving the tangle of tau fibres which releases waste products that kill nerve cells, and by preventing the fibres from becoming tangled.....The trial was a Phase 2 study, which checks the safety and efficacy of the drug, but if a large-scale Phase 3 trial due next year repeats the findings, the drug could be available for prescribing by 2012. At the same time, the research team is investigating a way of diagnosing Alzheimer’s at its earliest stages when tau tangles are first being formed in the brain.
People may have these tangles in their 50s, long before symptoms develop, and the researchers hope the drug could be used as a preventive treatment.
I'm not even sure what I could say to comment on this. I hope it's true. By 2012 I'll be well on my way to being 50 and my dad was diagnosed at 62--meaning he probably had his tangles way before that. I honestly believe he had the beginning stages of AD when he was around 55--would that be tangles in his 40's?
I hate living in fear.
And of course, the article was about Great Britain's availability. Are they even looking at approval for the US yet? I'll have to look into it more.
Monday, July 21, 2008
So we got to talking about dementia and things related to it. I told her if I had to go back in time, I’d tell my mother NOT to allow my father to undergo the heart surgery he had in September 2006. So many bad things can be traced back to that procedure. It’s the first time he was abused in a hospital setting (tied up). It made him ever more paranoid about going places, always full of fear he’d be brought back to that hospital. And of course, the blood thinners he was put on caused his brain bleed to be out of control. The out of control brain bleed put him in that semi-coma, so he was catheterized, and got a UTI, which got MRSA in it, which killed him.
Too simplistic, I realize, but there is a direct connection.
Of course, if he was still alive, would he still be home? Or would my mom be forcing herself into penury so the government would pick up the tab? Or would he have had a heart attack and died?
Which takes me to my next scenario. If he had died having that heart attack while mowing the lawn 2 years ago, he never would have beaten up my mom. Never would have gotten MRSA and suffered for weeks. I would not have to have told the doctors to change his medications so that he would hurry up and die and not suffer anymore. I would not have that on my conscience.
Of course, if that had happened, and no crystal ball had told me what my dad’s future would have been, I’d be ranting that he was still healthy and able to communicate and we should have had years more with him. And it totally would have sucked for me if my cat and dad died the same weekend.
But I guess these sorts of musings tell you that you never know what the future holds, and as bad as present may seem, the future could be a lot worse if this didn’t happen.
Wednesday, May 28, 2008
1. Problems with judgment (such as trouble making decisions, bad financial moves)
2. Less interest in hobbies or activities
3. Repeating the same things over and over (questions, stories or statements)
4. Trouble learning how to use a tool, appliance or gadget
5. Forgets correct month or year
6. Trouble handling complicated financial affairs (such as income taxes, balancing checkbook)
7. Trouble remembering appointments
8. Daily problems with thinking and/or memory
If you answer yes to two or more questions, seek help from a qualified doctor.
My father had 3 & 4 for a long time, and he also had major speech problems, which isn't on the list, and that's when my mom took him to the doctor. Not after we heard about his raspberry bushes for the 150th time, or his complaints that he couldn't use the computer.
But of course who thinks of dementia until it's too late? We need this information to go out to EVERYONE.
(screenprint, PMID: 16116116)
(You may have noticed that I have started including the PubMed references for the original studies, when I can find them. I use this tool at work now to verify references, and it's also great for finding medical articles.)
Elderly people with dementia who are given antipsychotics, even for a very short period of time, are more likely to end up in the hospital or even die....However, the problems underlying the need for such medications, behavioral problems such as aggression and agitation, are very real, and the alternatives to antipsychotics are limited...
Yeah--treat the aggression and maybe kill the patient, or allow the patient to harm or even kill someone else? That's a conundrum. And yes, I'm being sarcastic.
According to information gleaned from medical records, community-dwelling adults who had recently received a prescription for a newer antipsychotic medication were 3.2 times more likely than individuals who had received no antipsychotic therapy to be hospitalized or to die during 30 days of follow-up.
Of course, my dad was on them for at least 6 months before he died, and he wasn't given them only when he went into the nursing home. Honestly I don't believe they contributed to his death.
(Screenprint; PMID: 18504337)
Obesity may boost dementia risk by up to 80%
Researchers at the Johns Hopkins Bloomberg School of Public Health have found that being obese can increase the risk of Alzheimer's disease by as much as 80 per cent.
Their analysis of published obesity and dementia prospective follow-up studies over the past two decades shows a consistent relationship between the two diseases. ...Based on a pooled analysis of their findings from 7 of the studies, baseline obesity compared to normal weight increased the risk of Alzheimer's disease by 80 percent on average.
The team further concluded that being underweight also increases the risk of dementia and its subtypes. ...from "Obesity and central obesity as risk factors for incident dementia and its subtypes: a systematic review and meta-analysis" was written by M. A. Beydoun, H. A. Beydoun and Y. Wang. (PMID: 18331422) (article screenprint)
80%!? 80%!! Just shoot me right now. My father was overweight until he was diagnosed, but he wasn't obese by any standards--he had a big beer belly kind of gut. He had thin arms and legs.
Supposedly just having a 1st degree relative with AD gives you a 50% chance. Increase that by 80% and I might as well invest in long term care insurance right now. Totally depressing.
I'm having a bad week, of sorts. Tuesday at 6:45 a.m. someone hit my parked car and took off, leaving it pushed 6 feet forward with almost $2,000 worth of damage. My husband saw the truck, but didn't get the plate. Yesterday we drove around in the area and guess what? Found a truck--two blocks away--of the right size, shape, color, and brand, and it had a big old hunk o' damage in the front. The police will be knocking on his door, as they've already inspected the truck and seen that the damage matches my car. Jerk.
My grandmother is being a brat. My mom invited one of my friends over to her house for Memorial Day hot dogs and hamburgers. My grandmother barely greeted her and sat all through the meal with the "puss" face on, not talking to anyone. She was angry because my mom went to the Peabody Museum to see the Mexican art exhibit there, and had lunch with me and my friend, leaving her alone. She is really back on the "you can't leave me alone" kick. My mom dealt with being a caretaker for 3 years with my dad. My grandmother doesn't need a caretaker. She doesn't want to LIVE alone, fine, but that doesn't mean my mom can never leave the house. My mom can't get a job. Hell, she can't even take a walk without my grandmother bitching. It's totally not working out, and of course my grandma's apartment and her furniture and car are all gone so there is no going back My grandmother wanted this arrangement and all she does is complain.
Monday was the 6-month anniversary of my dad's death. I did not realize it until Tuesday. I'm glad. Is that awful, to be glad I forgot to be sad on that day? I've been sad so much for him. I want to think of him in the Elsewhere Bar, hoisting up a glass, maybe with some veterans. I hate that I have to drive by the nursing home where he died every day on the way to work, but I guess that's one way to numb myself, right?
(I've got some spare time tonight, so I'm blogging like mad! Enjoy.)
Pam McDonald, author of The Apo E Gene Diet: A Breakthrough in Changing Cholesterol, Weight, Heart and Alzheimer's Using the Body's Own Genes, contacted me to offer a free article on treating and preventing Alzheimer's through a specialized diet.
You can contact Ms McDonald through her website.
Here it is. I hope it will be of interest and benefit.
The ApoE Gene Diet – An Integrative Medicine Approach to Disease Prevention.
Introduction To The Apo E Gene
We all have the Apo E gene (pronounced by saying each letter, A - P - O - E). This gene plays a key role in our body's internal environment and is a determining factor in the development of chronic disease, especially heart disease and Alzheimer’s disease.
Keep in mind – Heart disease and Alzheimer’s disease are two inflammatory diseases. Our goal is to create a "gene-supportive environment" (GSE), based your individual Apo E genotype and reduce inflammation in the body specifically in the arteries, heart and brain.
The Apo E gene occurs as three variations, or alleles, in humans: Apo E 2, Apo E 3, and Apo E 4. Since genes come in matching pairs, we each have two alleles of every gene, one from each parent. If you received an Apo E 2 from one parent and an Apo E 3 from the other parent, your genotype would be E 2/3. The six possible combinations of Apo E gene pairs are E 2/2, E 2/3, E 3/3, E 4/2, E 4/3, and E 4/4.
How Your Apo E Genotype Affects Your Health
As you can see from the table below, the most common genotype, Apo E 3/3, is found in approximately 64 percent of the population. It is considered the “neutral” Apo E genotype. Combinations that include either the Apo E 2 or Apo E 4 are considered “alternative” expressions of the more common Apo E 3 pairing. People with Apo E 2 or 4 alleles will process foods differently from the way in which an Apo E 3’s body will.
The APOE Gene Diet can help prevent Alzheimer's disease and Heart disease.
The specific pair of Apo E genes you inherited from your parents greatly influences your predisposition to certain illnesses, including heart disease, vascular dementia, Alzheimer's disease, Parkinson's disease, and cancer. For example, persons with the Apo E 4/4 genotype could have up to a 90 percent chance of developing a chronic illness such as Alzheimer's disease. Maintaining an optimal diet and lifestyle for your particular Apo E genotype is known as maintaining a "gene-supportive environment" (GSE), and doing so can dramatically reduce your risk of developing these chronic illnesses. That's why the Apo E Gene Diet was created.
The Apo E Gene Diet
The foundation of the Apo E Gene Diet is a nutritional plan that focuses on eating the optimal percentages of "The Big Three" - carbohydrates, fats and proteins - for your specific Apo E genotype. One diet does not fit all because each Apo E genotype processes foods differently. There is a unique optimal combination of carbohydrates, fats, and proteins which creates the ideal diet for each of the six Apo E genotypes. Creating this optimal balance in your diet provides the foundation for your good health.
The Apo E gene has been shown to be the number one factor affecting how your body uses The Big Three macronutrients or food groups, and this influences the possibility and severity of developing certain diseases. It is extremely important to eat the right balance of carbohydrates, fats and proteins for your specific Apo E genotype.
The Apo E Gene Diet is not a diet in the typical sense of the word. With the Apo E Gene Diet, we use the word "diet" to mean a series of specific recommendations for individual nutrition and other environmental factors, such as exercise and stress levels, to name a few. The goal of the Apo E Gene Diet is disease prevention and a healthy life; it is a personalized plan for your Apo E genotype which will guide you in choosing the optimal:
• fat content with the correct types of fats
• carbohydrate content with the correct types of carbohydrates
• protein content with the correct types of proteins
• caloric content for your needs
• amount and kind of exercise appropriate for you
• balance of stress and relaxation in your life
• quality of mental and emotional environment
• type of energy and intentions you allow into your life (the spiritual component)
Most of the existing dietary recommendations are based on the assumption that one diet plan is appropriate for everyone. Because of that assumption, those diets fail to accomplish long-term weight loss or optimal disease prevention. We are not all the same. In reality, diet and exercise recommendations must be individualized, beginning with a person's genetic foundational recipe.
The Apo E Gene Diet focuses on an individual’s genetic recipe, creating dietary and exercise recommendations for each of the six possible Apo E genotypes a person can have. No other program does this. In addition, the Apo E Gene Diet takes into account the whole person (physical, emotional, and spiritual) in creating a gene-supportive environment which promotes a healthy life, free of chronic illnesses.
The Optimal Diet and Lifestyle For Your Apo E Genotype
So how do you create the optimal diet and lifestyle for your particular Apo E genotype? There are three steps.
1. First, consider reading The Apo E Gene Diet: A Breakthrough in Changing Cholesterol, Weight, Heart and Alzheimer's Using the Body's Own Genes by Pamela McDonald.
2. After reading the book, you can make an informed decision as to whether you want to know your Apo E genotype. Finding out which Apo E genotype you have is done through a simple cheek swab test or non-fasting blood test (more information on testing options).
3. Once you know your Apo E genotype, follow the diet and lifestyle plan outlined in the book for your particular Apo E genotype.
Following these three steps will support you on the path to a healthy life, free of chronic disease.
My experience in supporting patients in implementing the changes
required by the Apo E Gene Diet has led me to develop a number of general
recommendations that apply to all, regardless of their particular genotype.
Recommendations for Implementing The Apo E Gene Diet
In order to make changes in a current lifestyle, the following general
recommendations will help you be successful in those changes.
• Use the principles of integrative medicine that:
• take into account the whole person—body, mind, emotions, spirit,
environment, and lifestyle
• emphasize a supportive, caring, therapeutic relationship
• make use of all appropriate therapies, both conventional and
• use culturally appropriate, natural, effective, minimally invasive
interventions whenever possible
Find a practitioner who is:
• trained in integrative medicine, since nutrition and exercise are
two very powerful tools of integrative medicine
• committed to a healthy lifestyle, self-exploration, and self-development
You will then be guided and supported in:
• stimulating your body’s innate healing with foods that match its
• utilizing all three food categories (fats, proteins, carbohydrates) in
an optimal balance for your genotype (unless a medical condition
• focusing on foods that do not cause inflammation and are easily
assimilated, metabolized, and cleared by your body
• counting all calories (if weight is an issue)
• choosing natural, whole (that is, unprocessed) foods whenever possible
• utilizing routine blood chemistries and physical evaluations to
make adjustments as treatment progresses
• implementing the exercise program that is best for your individual
Apo E genotype
Apo E Gene Testing—Should I Do It?
Apo E gene testing offers the beginning of improved health and a happier life for many people. Once you know your Apo E gene type, a clear personalized dietary, exercise, and general wellness program provides you with the key to preventing heart disease, Alzheimer's disease, and many other chronic illnesses.
However, we recommend that you be tested only if you are willing to follow the personalized diet and lifestyle program that creates the most supportive environment for your Apo E gene type.
The decision to be tested is a very personal one. Some people want to be tested to learn the appropriate diet and lifestyle for their particular Apo E genotype, thereby minimizing their risk of developing chronic disease. Other people prefer not to know their genetic predisposition toward certain chronic diseases—clearly, this test is not for them.
The best way to make a fully informed decision as to whether you should be tested is to read the book, The APO E Gene Diet, by Pamela McDonald. Otherwise, there are several basic questions that you can ask yourself when considering whether you want to be tested:
1. Why do I want to learn my Apo E gene type?
2. Once I get my results, am I willing to follow the recommended diet, exercise, and wellness program best for my gene type?
3. Who is going to support me in undertaking any lifestyle change program?
If you do decide to be tested and embark on our APO E GENE DIET and HearthHealth Watchers™ program, we offer guidance and a unique collection of tools for a sustainable lifestyle that will bring you a renewed sense of health and wellbeing. A holistic assessment and life-balancing program, the Wellness Inventory, will help you gain personal insight into your state of physical, mental, emotional, and spiritual wellness. Personalized telephone consulting rounds out the program.
Pamela McDonald FA,FNP Integrative Medicine Fellow.
Wednesday, May 14, 2008
Periods of lucidity? Yeah, those are great. And such a period would certainly last long enough for this guy to stand trial. After all, people with AD respond so well to stress, strange environments, strange people, and lots of questions. Instead of going to school, these shrinks should live with (not just "observe") someone with AD. They'd learn a LOT more. Or just ask any of us.
Follow up to the local story: The man who stabbed his wife as part of a failed murder-suicide plot was deemed unfit to stand trial. (Surprise, surprise). I also found the original story; an onlooker tackled the old man after he attacked his wife and foiled his plan. (combined screenprint)
In other news, a vaccine similar to the one my dad tested, while it dissolves plaque, doesn't fix damaged neurons or help gain memory. The test was done on elderly dogs: brain autopsies showed that although plaques had been cleared from multiple brain regions damaged neurons remained. (screenprint)
But you can just smoke a joint and even if pot really doesn't help AD, you'll be too busy standing in the junkfood aisle at Food Bag with extreme munchies to care. (screenprint)
Sunday, May 11, 2008
Yesterday I was in BJ's (a warehouse store) and I saw my dad's best friend. He came over to talk to me and ask how we were doing. He said, "I miss Bob," and he had such honest grief on his face that it was just heartbreaking.
Friday, May 09, 2008
The first one is a few months old, but I didn't see it earlier: Killer of Alzheimer's wife held. The gist: a 77 year old man, whose 82 year old wife was in a nursing home with advanced AD, walked into the nursing home and shot her in the head and chest in front of everyone and then called the police and turned himself in. This is after 8 years of watching her deteriorate. I cry for him, because I don't blame him one bit. (screenprint) My dad only lasted 3 1/2 years. Five more years of that and I might have felt like shooting him, poisoning him, anything to make his (and my) pain stop.
This one is even worse, if that's possible. No charges against elderly man in shooting death. In this story, an old man with AD killed his wife and then went searching for her.
Drew Waldron, 87, ...shot his wife, Theria Waldron, also 87, once in the head with a handgun some time before 5:30 a.m. on March 28. The woman's body was found in the master bedroom of the couple's home ....The day of the shooting, Waldron was seen by staff of a nearby convenience store. They reported to deputies that he appeared confused. Responding deputies said Waldron reported that his wife was missing and when they accompanied him home, the deputies found the woman's body.
After reviewing his medical history, they had him put into a nursing facility and not charged. (screenprint)
What I want to know is, will stories like this ever not make me cry?
Wednesday, March 19, 2008
As I posted back in October, Terry Pratchett, one of my favorite authors, has early onset AD. Here's an update.
He was diagnosed last December with a rare form of early-onset Alzheimer's, or posterior cortical atrophy, in which areas at the back of the brain begin to shrink and shrivel. "I have a rare variant," he says."I don't understand much about it but apparently it means I'm going to be me for longer. Apparently if you're going to have Alzheimer's it's a good one to have. That's lucky, then..." The hugely successful author - incredibly he has sold around 55 million books in 33 languages and is the second most read author in the UK after JK Rowling - recently donated £500,000 to the Alzheimer's Research Trust.... He was, he says, furious with the diagnosis. "Apparently I reacted to this situation in a reasonably typical way, with a sense of loss and abandonment with an incoherent, or perhaps I should say, violently coherent fury that made the Miltonic Lucifer's rage against Heaven seem a bit miffed by comparison. It's a nasty disease, surrounded by shadows and small, largely unseen tragedies. "It seems pretty obvious to me that if you're out meeting people, breathing in lungfuls of fresh air, getting your blood coursing around your body, you're going to be a lot better prepared to deal with something like Alzheimer's than if you just stay at home watching TV and moping," he says. "You can't out-run the train but you can run and, who knows, if you can keep running for long enough, someone might find a way of blowing up the train."
Please, god, blow up the train.
"People don't know what to say, unless they have had it in the family.
I know Patty will weigh in with her spiel on how we have to focus on defeating AD now...before it goes those 10 million....and 30 or 50 million people join our ranks, blogging and reading about what this hell on earth is like.
By 2010, projections say there will be 500,000 new cases of the mind-wasting disease each year, and nearly one million new cases annually by 2050, the report estimates....
Right now, there are 10 million caregivers providing care (to the 5.2 million Americans afflicted with AD), many of them family members, at enormous personal cost...(A)n expanded circle of people ... are affected by this disease. It's not just the person with the disease. It's not just their immediate caregiver -- it's the children and grandchildren....
Medicare currently spends more than three times as much money on people with Alzheimer's and other dementias than it does for the average Medicare recipient. In 2005, Medicare spent $91 billion on people with Alzheimer's and other dementias. By 2010, that number is expected to climb to $160 billion, and by 2015, to $189 billion annually...
What else can I even say? You're here reading this; you can imagine a world with even more Alzheimer's in it.
An ugly world, one I don't want to know.
In other news, I have a new job! Full time, great pay, as a Production Editor at an office only a couple of miles from the nursing home where my father died. I could have visited him every day if I had had this job six months ago.
Wednesday, March 12, 2008
If both your parents have Alzheimer's disease, you probably are more much likely than other people to get it....
42% of children of dual-AD parents who had reached age 70 had been diagnosed with AD as part of this study, "greater than you would expect in the general population in that age group". But it doesn't saw WHAT you should expect.
In the general population, risk for the disease begins to rise at about age 65, with the number of people developing the disease doubling every five years beyond that....
(There is a) roughly one in 10 chance that the average person will develop the disease.
But is that 10% chance at age 65, doubling every five years? Or is that over a lifetime? This article is very poorly written.
To those of us with Alzheimer's parents or loved ones, I don't think any of this comes as a surprise.
Thursday, March 06, 2008
Thursday, February 21, 2008
Joan Gershman, 59, does not mince words when describing how Alzheimer's disease has affected her marriage. "For 34 years, we were partners, lovers, friends -- and all of sudden I am living with a monster," she said of her husband, Sid, 65, who was diagnosed in 2005.
I wonder if he hurts her like my dad did my mom? She always had bruises. And my dad would see them and ask who did that to her. He never believed it was him.
For Gershman, keeping it all inside took its toll. People in her support group rarely spoke about Alzheimer's emotional effect on marriages, so she started the Web site thealzheimerspouse.com. An average of 750 people visit the site each day, and she has heard from spouses around the world.
750? I'm happy with my 50 or so a day. I need to set my sights higher, apparently. Although it doesn't matter. If only 1 person comes a day, and that person feels better because s/he visited, that's what counts.
The woman struck and killed while walking across Interstate 91 Monday evening has been identified as Patricia Carruthers of Wallingford....Carruthers was in the early stages of Alzheimer's disease and apparently had walked away from her home...sometime before 6 p.m. Monday...
(I)t appears as if Carruthers had wandered across the southbound lanes and into the northbound lanes, where she was hit by at least one vehicle, and maybe a second....
Carruthers, 63, was a former lawyer and a former teacher at Pond Hill School.
She held a bachelor's degree and master's degree in education from Southern Connecticut State University and had earned her law degree from the University of Connecticut School of Law in Hartford in 1989.
Just goes to show that keeping your mind active doesn't stop AD, does it?
(P)olice were still trying to determine the sequence of events in the accident.
Police said there were two vehicles involved -- a tow truck and a tractor-trailer -- but it is still unclear exactly what happened.
Screenprint of news article
Her obituary is online and it turns out I knew one of her sons in high school. I'd say it's a small world, but it's Wallingford, after all.
Tuesday, February 19, 2008
Medicare won't pay hospitals for errors
Almost every condition they are no longer paying for my dad had, and the combination of those conditions are what killed him.
It's a new way to push for patient safety: Don't pay hospitals when they commit certain errors.....
Even when a hospital makes a preventable error, it still can be reimbursed for the extra treatment that patient will now require. Some errors can add $10,000 to $100,000 to the cost of a patient's stay.
Or kill them. Like my dad. :(
(O)ne in four hospitalized patients is outfitted with a urinary catheter. The tubes trigger more than half a million urinary tract infections a year, the most common hospital-caused infection.
Check. My dad had a UTI caused by being catheterized for months, starting when he was tied up in that awful emergency room without food, water or medicine for all those days.
Yet many patients don't even need catheters...and many who do have them for days longer than necessary....(N)early half of hospitals don't even keep track of who gets one.
Beginning Oct. 1, Medicare no longer will pay those extra-care costs for eight preventable hospital errors, including catheter-caused urinary tract infections, injuries from falls, and leaving objects in the body after surgery. Nor can hospitals bill the injured patient for those extra costs.
My dad had everything on that list except foreign objects left in his body after surgery.
Next year, Medicare will add three more errors to the no-pay list; ventilator-caused pneumonia and drug-resistant staph infections are top candidates.
We all know that my dad died of a drug-resistant staph infection from a cathether-induced UTI, after a hospital-caused fall.
On the one hand, this idea seems great to me. Punish the hospitals for giving shitty care! But in the long run, who is going to pay for these errors? They will just raise the prices of everything. No hospital is going to "eat" all that money.
Hospitals screw up, badly, all the time. A friend of mine who is a nurse was telling me a couple of weeks ago that while she was on vacation, someone from her emergency room called to say "we just killed a guy, what do we tell the family?" They forgot a critical step in the guy's care, and by the time they figured it out and went to rectify it, he was dead. Horrifying. If I make a mistake at work, a coupon might get printed with a wrong expiration date, or someone's name is misspelled, or there's a typo in a headline. If she makes a mistake, a person can be hurt or even killed. Not a job I want to have.
Tuesday, February 12, 2008
Over 1.3 Million Americans are cared for through hospice each year, and there is a daughter, son, brother, husband, or friend acting as a family caregiver for each patient. The emotional challenge of caring for a loved one during the last few weeks can be draining and extremely stressful without support and help.
AGIS.com has partnered with the Hospice Foundation of America (HFA) to offer expert advice and information on end-of-life issues for caregivers. This new addition to the AGIS eldercare portal showcases HFA’s unique expertise in caregiving issues involving terminal illness, grief, emotional pain and other complex issues associated with the last months or weeks of a loved one’s life.
HFA’s Ask the Expert section is located at: http://www.agis.com/community/Ask-The-Experts/hfa/
AGIS End of Life section is located at: http://www.agis.com/eldercare-basics/Support-Services/End-of-Life/
AGIS’ new information section includes information on comfort through treatment of illness-related symptoms, hospice care and grief. Individual sections on the site feature additional information on solace and grief management strategies for both caregivers and ailing loved ones that enable practical and comforting solutions for every step of the process. The new AGIS interactive HFA “Ask the Experts” section enables families to find specific answers to personal challenges easily online.
While no one can ever be fully prepared for the emotions and situations that come from caring for a dying loved one, HFA and AGIS desire that no family caregiver will ever have to face this time alone.
Thursday, February 07, 2008
So send me your suggestions, anything you can think of, however obvious it might seem to you.
If you want to be credited, tell me how. I have no problem with putting links to your (relevant) blog or website. This will be free--I don't plan on making money from it in any way (although I will plug the Unforgettable Fund of course).
Comment on THIS post or email directly to me (geverabert at yahoo dot com).
I just feel like I have to do something. I'll collect ideas for a few weeks and then put it together.
An advanced imaging study has captured the fact that amyloid plaques, the harbingers of Alzheimer's disease, can develop in just 24 hours.
That means between yesterday and today, you go from being okay to having Alzheimer's. Just like that. I'm sure it takes a while for the damage to show up in your actions, though.
Once the plaques develop, damage is evident in nearby nerve cells almost immediately...
"Knowing that plaque occurs quickly implies that something initiates it," (Dr. Bradley Hyman) said. "That is the next question to be answered."....
The studies showed that nerve cell changes associated with Alzheimer's disease appear within days. The results confirm suspicions that plaque formation is a primary event in the abnormal cell activity that underlies Alzheimer's disease.
It makes me think of things I've read about the Black Death in medieval Europe. Some strains were so virulent that you went to sleep healthy and "woke up dead" as they say--getting it and dying overnight. Scary to think AD comes on that fast...and to have it happen that way, there does have to be a trigger, right?
Tuesday, February 05, 2008
Doctors pushed electrodes deep into a man's brain during surgery in an effort to control his appetite. Once the electrodes were stimulated, vivid memories were unlocked of an experience 30 years earlier.
The article doesn't say that they have actually TRIED this on anyone with AD. Personally, I don't think it sounds like it has much promise. #1, AD isn't about "forgetting", it's about physical degeneration of the brain. Dead neurons, plaque, etc. Can an electrode make the neurons grow back? #2, from what I understand, doctors are VERY reluctant to go inside the skulls of living AD patients and muck around with their already screwed-up brains. "Pushing electrodes deeply" sounds messy and imprecise and not like it would work well even on overeating, except in the case maybe of those Prader-Willi people who have no sense of satiety and eat themselves to death.
about me: I've been feeling lonely and cut loose in the 2 or so months since my dad died. Maybe I miss the drama of having a dying father and all the attention I got when he died. But it seems to me...maybe I'm crazy...that people are avoiding me now that he's died. The same people who couldn't pledge enough support during those two horrible final months have vanished. I finally said something today to one of my best friends about it...she expressed guilt over neglecting me, and said it wasn't because my dad died, but she really didn't give a reason. And that's just how it's been. People I used to see once a week (or more) have dropped to every other week...once a month....can it really be I haven't seen some of these people since my dad's memorial service? Yes, indeed, that is true.
Having never lost a parent before I'm not sure if what I am going through is normal or not. I am sad, true, and often at odd times (usually when I am driving long distances alone, especially if I end up going past the exit for the nursing home), and at those times I might leak a little around around the eyes, but I'm always ALONE when that happens. I don't have crying breakdowns around other people. There's no reason for them to avoid me. Or maybe they just all got their fill of me in October and November. Who knows.
Thursday, January 31, 2008
The study my dad was in involved dissolving plaque and making new plaque not stick, and we had been told it was promising and would be available to the general public in a few years. Perhaps that drug was one of the other types mentioned at the end of the article; I'm afraid some of the medical jargon is beyond me.
A once-promising pathway for research into preventing and treating Alzheimer's disease may have been derailed by a surprise chemical finding...Scientists in laboratories around the world have been investigating drug candidates called amyloid inhibitors, which many experts believed could keep proteins such as amyloid-beta from sticking together in brain tissue.....
A team of chemists at the University of California, San Francisco, found that these candidate drugs form large, unwieldy clumps themselves, rendering them useless as targeted therapy against amyloid in the brain....
In other words, the drugs lose their ability to migrate to the brain to fight amyloid plaque. They also give up their targeted specificity against amyloid....
(A)ntibody-focused strategies aimed at eliminating plaques, or treatments focused on easing the downstream effects of amyloid buildup (still have potential).
(I)t's still not certain whether protein plaques even cause Alzheimer's and other brain diseases, or whether they are merely byproducts of the disease process.
All that money and work, for nothing. I hope these researchers can find something more promising to work with.
(Screenprint of article as accessed 01-31-2008)
Wednesday, January 23, 2008
I can't argue and scream and cry and say my dad got cheated out of a year--or 5, or more. Someone else's loved one gets that extra year, right? I've always believed that for every life cut short, those years go to someone who lives a long time. Heath Ledger, for instance, who died yesterday at 28, gave years to someone else, somewhere. Or so I believe. Maybe my dad's extra time will go to Terry Pratchett. I'd feel good about that.
An estimated 24 million people worldwide have the mental confusion marked by memory loss and problems with orientation that signals Alzheimer's disease and other forms of dementia.....Women lived for 4.6 years compared to 4.1 years for men. There was nearly seven years difference in survival between the youngest and oldest, with people aged 65 to 69 living 10.7 years and those over 90 living 3.8 years, the researchers found.
So I guess the estimate of my dad living 9-11 years wasn't that far off after all.
And although I am sad that he's gone, his last months were miserable, and if he had lived another year as he was in October and November, it would have been joyless for him and for us, and cost my mother everything she owned.
Screenprint of article.
Friday, January 04, 2008
When I drive, I have too much time to think, and my thoughts turned down that awful road: what if I get Alzheimer's? I mean, obviously I'm going to kill myself, right? I can't put my husband through that, and we have no children, I have no siblings, there'd be no one at all to help him with me. And he is not very nurturing to begin with.
And the next thought is how? I had a friend who said if she got it, she'd take a bottle of sleeping pills, go sit in her car in the garage with it turned on, and drink a glass of wine and listen to her favorite music until she fell asleep. It sounded very peaceful. But would it work? (Not that I drink wine. I'd be out there with my diet caffeine free Pepsi.)
So I thought, I'd better go look into joining the Hemlock Society. And gasp, they don't exist anymore. WTF? I am not in favor of teenage angst suicide, but if you have a terminal disease, or you're old and past your sell-by date and have no one who cares about you anymore, you should be able to check yourself out.
Evidently their duties have been taken over by a group called "Compassion and Choices" which doesn't have quite the same ring to it. And there isn't even a Connecticut chapter; they just refer you to the corporate office.
I just feel so old, and I didn't even battle AD myself. I only watched my father do it. I'm not even 40, but in the past few months my temples have gone gray and my hair has thinned from stress. My mom aged about 10 years. I just wonder physically what it's done to us. I read somewhere that Alzheimer's caregivers have drastically shortened lifespans, in accordance to how long the caregiving went on. So this disease didn't just take my father. It's stolen part of my mother's life too, and probably mine.