October 15th, 2008 by Dr. Val Jones in Announcements
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Alzheimer's A. Gala '08
I am so incredibly excited about this great news: the Alzheimer’s Association won first place in the American Express Members Project contest. Cardmembers voted for their favorite cause, and the early detection of Alzheimer’s disease project won the majority. The research grant is valued at $1.5 million.
I first became aware of this worthy cause when I attended the Alzheimer’s Association gala with Chris Matthews (thats us in the photo to the left) and had the chance to interview Patty Smith, a young victim (diagnosed at age 51) of this disease. She gave a moving speech about living with Alzheimer’s.
Here is an excerpt of my blog post about Patty:
What struck me most about Patty was her courage and determination. Although her symptoms were troublesome to her (she had some difficulty concentrating, remembering details of her past, and couldn’t offer robust answers to questions) she was prepared to be vulnerable in a very public way. I was moved by Patty’s bravery, and her willingness to sacrifice personal comfort for public education. Of all the important donors and benefactors at the event, Patty was (in my opinion) the one who sacrificed the most- because she was the one who was willing to expose her frailty to us all.
I know that the award will be put to good use and I certainly hope that we will soon discover a cure for this devastating neurological disease.
***
What’s the Chris Matthews connection? His mom died of Alzheimer’s disease and he moderated the event.
October 7th, 2008 by Dr. Val Jones in Medblogger Shout Outs
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Thanks to my friend and fellow blogger Bob Coffield for hosting me (during my homeless period) at the Healthcare Law Blog. Here is an excerpt of my post:
Today I viewed a TV ad sponsored by the AARP. It was promoting a remote alarm device that elderly people could use to notify EMS if they fall and need help. The ad featured a surprising statistic:
“One in three people over the age of 65 will fall down this year.”
That’s a pretty common occurrence, wouldn’t you say? It certainly argues for the need for those wearable alarm buttons.
But at the same time that these ads are running on television, Medicare is moving forward with their “never event” quality program. The initiative means that Medicare will not pay for the care of patients who experience a “never event” in a hospital – funding for that patient’s care will need to come out of the hospital’s budget. Medicare argues that they shouldn’t have to pay for medical errors such as “wrong side surgery.”
While I’m sympathetic to their perspective on wrong side surgery, the list of never events reaches far beyond the limits of medical errors to include things like mental status changes, infections and…
drum roll please . . .
Falls….
July 11th, 2008 by Dr. Val Jones in News
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Intel just received FDA approval for their new in-home monitoring devices. The press release notes:
The Intel Health Guide enables caregivers to provide their patients with more personalized care at home, while also engaging and empowering patients to take a more active and positive role in their own care.
Intel said the interactive guide integrates vital sign collection, patient reminders, multimedia educational content and feedback and communications tools such as videoconferencing and e-mail. It can connect to specific models of wired and wireless medical devices, including blood pressure monitors, glucose meters, pulse oximeters, peak flow meters and weight scales.
Now this is a good idea – imagine how much pain and suffering we can alleviate by intervening in illnesses before they become acute? For example, when a patient with CHF begins to decompensate, physicians can intervene before the patient experiences severe shortness of breath and requires a hospital admission via the ER. What about catching a hyperglycemic episode early on? What about a hypertensive emergency that has no symptoms until very late in the game?
Avoiding the hospital can reduce exposure to infections, medical errors, insomnia, stress, and disorientation. Early intervention in disease keeps people out of the ER, and saves money and resources – while improving quality of life for the patients. The data gathering tools not only empower patients to be as independent as possible for as long as possible, but they empower physicians to care for their patients more effectively.
Unlike services that are aimed at replacing physicians, this one is designed to make them more efficient and effective. One day I imagine that a primary care physician will be able to keep an eye on her patients on one web page – with input from all the terminals combined into a dashboard. Alerts can be set at customized levels for different patients, and with a glance of an eye the physician will be able to see which patients may need help.
This is a brave new world of real-time health communication, and with technologies like this one, we may be able to bridge the gap between growing care needs and decreasing care resources while actually improving quality to boot.
Personal, affordable, telemedicine for the chronically ill. Bravo, Intel.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
June 3rd, 2008 by Dr. Val Jones in Expert Interviews
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The following interview with Alzheimer’s researcher, Dr. Jeffrey Cummings, is a continuation of part 1…
Dr. Val: Tell me about the comorbidities associated with Alzheimer’s and how caregivers can prepare for them.
Dr. Cummings: Being a caregiver is a real challenge. It’s so difficult to take care of someone who may be incontinent, agitated, psychotic or depressed. All of these symptoms occur with increasing frequency as the disease progresses, and can challenge even the most devoted caregiver.
There are educational programs that can help to explain to caregivers where these behaviors are coming from, and can teach them how not to exacerbate the symptoms. For example, it’s important to avoid confrontation with the patient. If he or she doesn’t want to take a shower in the morning, then it’s better just to let it go.
Reducing friction between the caregiver and the patient has been shown to delay the time to nursing home placement, so there are behavioral interventions on the part of the caregiver that can be very beneficial.
Dr. Val: What can online companies like Revolution Health do to support patients with Alzheimer’s disease and their caregivers?
Dr. Cummings: We’ve learned that there are things that people can do to protect themselves against getting Alzheimer’s disease. This includes physical exercise (at least 30 minutes per day 3 times per week), active engagement in leisure time activities, eating a diet high in anti-oxidants (such as salmon, green leafy vegetables, and blueberries), avoiding head trauma (e.g. wear helmets while cycling), controlling high blood pressure, and controlling cholesterol.
It would be great if Revolution Health included all of these healthy lifestyle strategies in a comprehensive Alzheimer’s prevention agenda.
Dr. Val: Is there a role for the “brain games” movement in Alzheimer’s disease?
Dr. Cummings: That’s an interesting question – though I’ve seen very little data supporting brain games in particular. We do know that active intellectual engagement reduces the risk of Alzheimer’s disease, but once one has the disease, it’s less clear whether these kinds of programs can actually reduce progression. At the very least they may reduce agitation by active engagement of the patient, leaving less time for them to be unoccupied. I’d really encourage the people who are developing brain games to test them in well controlled trials. The games could be tested in the same way that drugs are tested.
*Listen to the full interview here*This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
May 19th, 2008 by Dr. Val Jones in Patient Interviews
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I met Patty Smith and her husband Jay at the Alzheimer’s Association gala in Washington, DC. Patty was diagnosed with early onset Alzheimer’s at the age of 51, and has devoted her life to raising awareness of her condition. She agreed to deliver a short message to the large audience, including political celebrities like Nancy Pelosi, Chris Matthews (of Hardball) and Newt Gingrich. I was able to spend some 1:1 time with Patty in a quiet press room prior to the event.
What struck me most about Patty was her courage and determination. Although her symptoms were troublesome to her (she had some difficulty concentrating, remembering details of her past, and couldn’t offer robust answers to questions) she was prepared to be vulnerable in a very public way. I was moved by Patty’s bravery, and her willingness to sacrifice personal comfort for public education. Of all the important donors and benefactors at the event, Patty was (in my opinion) the one who sacrificed the most- because she was the one who was willing to expose her frailty to us all. I became quite misty-eyed during this interview, as I witnessed a beautiful and brilliant woman slowly being robbed of her faculties (as was my own grandmother) by a relentless disease. I am honored that Patty took the time to tell me a little bit about what it felt like to be living with Alzheimer’s. My prayers are with her and her family.
Dr. Val: How were you first diagnosed?
Patty: I was working downtown on K Street for BB&T as one of their top consultants (I was 49 years old). But I slowly started missing some things and forgetting to follow through with my work. I remember being devastated when I was written up by my superior for poor performance. I decided to take some time off to figure out what was going on with my brain.
I went to see a neurologist who ordered an MRI. The MRI was normal because it was too early in the disease process to see changes. The neurologist then sent me to a psychiatrist to check me for depression. After several sessions, the psychiatrist sent me back to the neurologist saying “If this woman doesn’t have a neurological problem, I’ll eat my hat.” Then I had a PET scan which showed the Alzheimer’s disease. It took a really long time to get the diagnosis because no one thought of Alzheimer’s as a possibility for someone so young. Also there’s no history of Alzheimer’s in my family and my father is one of 17 kids.
Dr. Val: Did you undergo any genetic testing to find out if you carry a gene for Alzheimer’s?
Patty: Well, the neurologist ordered some tests on my spinal fluid, but unfortunately the person who tried to do the spinal tap missed so many times that we gave up because it was painful. [Patty’s husband adds: In the end the test results don’t make that much of a difference. You either have it or you don’t.]
Dr. Val: What is the most difficult part of being diagnosed with early onset Alzheimer’s?
Patty: The thing that frustrates me the most is that I lose my thoughts for a moment. They come back relatively quickly still. It’s hard to see it affecting my children. They’re 22 and 20. My diagnosis has been difficult for them but they’re taking it pretty well I think.
Dr. Val: If there’s one thing you’d like others to know about early onset Alzheimer’s disease, what would that be?
Patty: I’d like doctors to consider it as a possibility when they’re seeing patients with complaints like mine. It shouldn’t take years to get diagnosed. We have to break the stereotype of Alzheimer’s being exclusively a disease of the elderly. Younger people with Alzheimer’s get diagnosed with “stress” or depression, even though the symptoms are the same whether you’re 85 or 50 years old.
Also, I’d like more research funding for drug development. I’d like the FDA to move a little faster on getting the drugs out as well. I’m willing to volunteer for clinical trials, but I’m afraid that I’ll be placed in the placebo group, and I’d really like to get the drug.
Dr. Val: Are you taking any drugs now?
Patty: Yes, I’m on Aricept, Wellbutrin, and Namenda.
Dr. Val: Are you bothered by any side effects?
Patty: At the beginning we had to adjust the dosage of the Aricept because I was getting “night terrors.” I’d wake up in the middle of the night and sit bolt upright in bed and scare my husband half to death. Of course I didn’t remember any of it because I was still asleep. We cut the dosage of Aricept in half and the problem resolved.
Dr. Val: What are your plans going forward?
Patty: I’m going to continue helping the Alzheimer’s Association to raise awareness about the disease. Our healthcare system is not equipped to handle all the additional people who will be diagnosed with Alzheimer’s in the near future. We must get the message out so that we can prepare better. I’ll continue on giving speeches across the country for as long as I can do this.
*USA Today profiled Patty and Jay in an article published last year.*This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
