October 12th, 2008 by Dr. Val Jones in Celebrity Interviews
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Davis Phinny
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Davis Phinney has won more cycling races than any other American. He is charming, articulate, handsome, and requires a deep brain stimulator to keep him from experiencing incapacitating tremors. Davis was diagnosed with Parkinson’s Disease at age 40.
I attended the Parkinson’s Action Network 15th Annual Morris K. Udall Awards Dinner in Washington DC last week. Davis was interviewed by Diane Rehm and I recorded the conversation for my blog readers. It was an exceptional interview.
Davis explained how he was initially diagnosed – he felt tired, slow, experienced foot cramps and began tripping more frequently. As a young, seemingly invincible athlete who worked long hours, he assumed that he was just tired and in need of a massage. Eventually his symptoms became so persistent that he went to see a physician. After many tests and many different doctors examined him, a retired neurologist made the diagnosis. Davis says that it was a tough blow to his family. He felt as if he were Superman, now saddled with a permanent kryptonite necklace. Read more »
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.
April 29th, 2008 by Dr. Val Jones in News
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We’ve been conducting a series of opinion polls at Revolution Health, some of which have turned up interesting and surprising findings. This one caught my attention (there were 392 respondents):
What one factor would most improve your health?
- 23% Less stress at work
- 4% More time to cook
- 18% Being in a happier relationship
- 31% Getting more sleep
- 22% More time to work out
I thought it was very interesting that SLEEP is perceived by our viewers as their number one most important health intervention, more important than exercise, relationships, or stress reduction.
Does this result surprise you?
I suspect that there was selection bias at play since the poll appeared in the sleep disorders section of our site – but it was also featured in non-sleep related areas of Revolution Health.
Anecdotal for sure, but interesting.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
April 13th, 2008 by Dr. Val Jones in True Stories
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I received a panicked call from my younger sister today. She is the mother of one-year-old identical twin girls, born slightly prematurely. During her pregnancy she had a problem with twin-twin transfusion syndrome and had to lie on one side for many weeks to ensure that both girls received an adequate blood supply. She delivered by Cesarean section and fortunately both girls have been doing well. That is, until a few hours ago.
My sister described an episode in which her daughter was in the bathtub and suddenly had one of her pupils become very large. It remained dilated for several minutes, which caused her to call her husband in to take a look. He confirmed that the eye was dilated and they decided to call me right away because they’d heard that a dilated pupil might have something to do with concussions or head injuries, though the little girl had not had any recent trauma to her head.
I tried to get a full history from them – they said she was acting “totally normally” – the usual peeing, pooping, eating checks were fine. They said she was sleeping well, not vomiting or lethargic, and that her pupil had now (after several minutes) returned to normal size. They said her fontanel was not bulging, and when I asked them to shine a light in her eyes they both constricted immediately.
My sister asked me, “what could this be?”
Ugh. I’m not a pediatrician, nor an ophthalmologist, but I do know that asymmetric pupils are usually an ominous sign. All I could think of was “space occupying lesion” but I didn’t want to scare my sister unnecessarily. All the other history sounded so reassuring (the child was well, with no apparent behavior changes, the eye had returned to normal, etc.) that I had to say that they should get in touch with the pediatrician on-call.
And here’s where things got confusing. My mother called me by coincidence just after I hung up the phone with my sister. She had been visiting with the babies for a full week, and slept next to their cribs during their vacation. I told my mom about the pupil issue, and she started relaying some potential “symptoms” that she had witnessed over the past week or so. She claimed that the baby had indeed vomited recently, that her behavior was different than her twin (more irritable and emotionally labile) and that her sleep patterns were also disrupted.
Now I was more concerned – was this early hydrocephalus or maybe even brain cancer? Would I be responsible for missing a diagnosis? I was thousands of miles away from the infants and trying to piece together a story from historians with different observations. So I called some pediatrician friends of mine and asked what they made of this. One said – “anisocoria is a concerning symptom in an infant, she needs a CT or MRI to rule out a tumor pressing on her eye nerve. She should go to the ER immediately.” The other said that since there were no other current symptoms, and the eye was back to normal, it should be worked up by an ophthalmologist as an outpatient.
What a bind to be in – I have some witnesses describing very concerning symptoms, others suggesting that everything’s fine except for a fleeting period of pupil size mis-match. I have dear friends suggesting everything from an immediate ER visit with sedation of the child and a head CT or MRI to watchful waiting and distant outpatient follow up. And I have my sister relying on my judgment (as a non-pediatrician) to tell her what to do.
Here’s what I did – I got my sister and her husband on the phone and explained to them that I take their observation of pupillary dilatation very seriously. I explained that this is not a normal event, and should be followed up by an expert to make sure that there’s no underlying cause of the eye symptoms. I also said that the fact that the baby is acting normally and the eye is no longer dilated are reassuring observations. I told them that they should keep a close eye on the infant, and that if they see any hint of recurrence of the pupil problem, or anything out of the ordinary like vomiting, inconsolability, lethargy, swollen fontanel, fever, or strange body movements or seizures, they should go to the ER immediately. In the meantime they should alert the doctor on-call to the situation and discuss everything with their pediatrician during her next available office hours.
I hope that was the right approach. I will not rest easily until the baby has been fully examined by an expert. Being a doctor carries with it a lot of anxiety and personal responsibility – at any time of the day or night your peace of mind can be uprooted by an abnormal finding relayed to you by friend, family, or patient. And if anything goes wrong – or if interventions are not achieved at an optimal speed and accuracy, this question will forever plague you: “Should I have done something differently?”
Who knew that my relaxing Sunday afternoon would be turned upside down by a dilated pupil?This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
