October 17th, 2008 by Dr. Val Jones in Patient Interviews
Tags: Anti-phospholipid antibody syndrome, Aspirin, Emergency Medicine, Family Medicine, Hematology, Internal Medicine, Lovenox, Low Molecular Weight Heparin, Lupus, Neurology, Physical Medicine And Rehabilitation, Physical Therapy, Podcast, Polycystic Ovary Disease, SLE, Stroke, Systemic Lupus Erythematosis
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Deanna and Rebecca Sherman
As many as 15% of Americans have a blood disorder (called anti-phospholipid antibody syndrome – APS) that can increase their risk for blood clots and stroke. While these antibodies are especially common in people with certain auto-immune diseases like SLE (systemic lupus erethematosis – or “lupus”) quite a few people have them without ever knowing it. In fact, most people with APS remain asymptomatic their entire lives – but for an unlucky few, the disorder can cause devastating consequences.
I interviewed Rebecca Sherman about her recent stroke caused by APS. Listen to the podcast here.
Dr. Val: Tell me about the events leading up to your stroke.
Sherman: I was a young, healthy 32-year-old with no idea that I had anti-phospholipid antibodies in my blood. One morning when I was washing my face at my boyfriend’s house I suddenly noticed that one side of it was frozen. I was standing in front of the bathroom sink and I fell to the floor with the washcloth in my hand. I couldn’t walk or talk – the whole right side of my body didn’t do what I wanted it to do. So I threw the washcloth at my boyfriend’s head (with my left hand). Luckily my aim was good (he was asleep in bed) and the bed was near the door to the bathroom – the cold, wet object caused him to jump out of bed and find me. Read more »
July 16th, 2008 by Dr. Val Jones in Celebrity Interviews, Patient Interviews
Tags: Bladder Cancer, Cancer, News, Oncology, Research, Urology
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Bob Schieffer is broadcast journalism’s most experienced Washington reporter. He has covered Washington for CBS News for more than 30 years, and has been the anchor for Face The Nation (one of the longest-running news programs in the history of television) since 1991. I had the privilege of interviewing him about his bladder cancer at the CBS studios today. It is Bob’s sincere hope that his story will inspire others to seek medical help at the first sign of bladder cancer, and also gain comfort from knowing that they are not alone.
This is part two of our interview series. Click here for part one.
Dr. Val: Do you have any advice for patients facing bladder cancer?
Schieffer: Bladder cancer is a very insidious disease, you can have it for a long time without knowing that you have it. At the first sign of blood in the urine, you need to go to the doctor. I think men are often reluctant to go to the doctor, and their tendency may be to attribute blood in their urine to a muscle strain of some kind. But waiting is a dangerous proposition. When I think of my own situation, I realize that even waiting another week or two could have put me into a whole different risk category and I might not be where I am today.
Cancer research is such an evolving field – that if you can keep yourself alive today, there may be a cure tomorrow. That’s the good news about this. The bad news is that we spend about as much on cancer research in a year as we do on one day in Iraq. I don’t know anyone in the cancer community who doesn’t believe that if we invested enough money in it we’d find cures.
Dr. Val: Was it hard for you to speak publicly about your cancer?
Schieffer: Tony Snow and I became really good friends, and we both felt that we had an obligation to talk about our conditions in order to promote cancer awareness. Hamilton Jordan was also a good friend of mine, and he devoted his life to raising awareness. He survived 5 cancers though the 6th one got him. I was a very private person before all this started, and when Hamilton found out I had cancer he called me and said that I really needed to get out and talk about it because I have the opportunity to have an impact on so many people.
As it turned out, I went on Don Imus’ radio show one morning and talked about it, and soon afterwards Wolf Blitzer asked me to be on his show on CNN. I must have received 600 emails from people thanking me for talking about my situation – some were glad to know how to recognize potential bladder cancer, and others told me they no longer felt alone in their cancer experience because they knew that I was going through it too. At that point, I thought to myself that speaking out about my cancer might have been the most important thing I’ve done so far as a journalist. If one person goes to see their doctor when they first notice blood in their urine, then I may have had a part in saving a life.
Bladder cancer is a “below the belt” disease and people are reluctant to talk about it. I think it’s really important to help people get past this barrier. It is nothing to be ashamed of, there’s nothing wrong with you as a person – it’s just that a certain percent of us are going to get bladder cancer.
Dr. Val: How do people get plugged in to the cancer community to get the help they need?
Schieffer: What I’ve noticed is that when you get cancer, you become acqainted with everyone else who has it. There’s a kind of natural networking that occurs when you participate in meetings and events. However, I’d encourage people affected by bladder cancer to go to the Bladder Cancer Advocacy Network. The founder, Diane Quale, left her job as an attorney to create the advocacy group after her husband was diagnosed with bladder cancer. She has raised hundreds of thousands of dollars for the cause, although sadly her husband lost his battle with bladder cancer a few weeks ago.
Hamilton Jordan told me this, “You have to take control of your disease. Nobody is going to be more interested in it than you. It’s your life, so you’re the one who has the most invested in this. Just Google ‘bladder cancer’ and learn as much as you can about it.”
When you go to a doctor, especially with cancer, it’s invaluable to get a second opinion. I got a second opinion from a wonderful physician at Johns Hopkins, Dr. Mark Schoenberg. And Dr. Schoenberg told me this: “A doctor is like a good craftsman. A good craftsman is always happy to show his work to other craftsmen. It’s the guy who isn’t really sure what he’s doing who doesn’t want to discuss his work with somebody else in the field.”
Dr. Val: What’s your bottom line about cancer?
Schieffer: Cancer is not something to be embarrassed about. It’s something that happens to us and needs to be dealt with. When the doctor tells you that you have cancer, it is not the death sentence that it once was. Cancer research is advancing every day and we’re finding new ways to fight the disease. There’s no need to say, “I have cancer — this is it” but rather, “I have cancer and what do I need to do about it?” And then you have to do it.
*Visit the bladder cancer center at Revolution Health*This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
May 19th, 2008 by Dr. Val Jones in Patient Interviews
Tags: Alzheimer's, Family Medicine, Geriatrics, Neurology, News, Research
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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.
May 13th, 2008 by Dr. Val Jones in Patient Interviews
Tags: Bi-polar, Hospitals, Podcast, Psychiatry, Relationships, Research
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Therese Borchard is a vibrant author, editor, and mother of two. She writes a critically aclaimed blog called “Beyond Blue” at beliefnet.com, which is devoted to supporting people who are living with bipolar disorder. Therese’s writing is engaging and humorous, as she normalizes the experience of mental illness through her own lens of motherhood. Revolution Health salutes Therese for her compassion, and I hope you enjoy getting to know her through this interview:
*Listen to Podcast*
Dr. Val: Tell me about the circumstances surrounding your diagnosis of bipolar disorder. What was it like when you received the diagnosis for the first time?
Therese: I’ve struggled with depression most of my life, though college was when I first started taking medication and came to terms with the diagnosis of major depression. However, I had a much harder time when I realized that what I had was actually bipolar disorder. This was really difficult for me because my aunt was the only person I knew with bipolar and she took her own life when I was 16. So I had a lot of resistance to that diagnosis.
In fact, I ended up seeing 7 different psychiatrists, went through 2 hospital stays, and tried a total of 23 different medications.
Dr. Val: What’s the story behind the 7 psychiatrists? Were you not connecting with them?
Therese: I strongly advise people with bipolar or anyone struggling with depression to find the right doctor. For me it was going to Johns Hopkins, an academic center that has the best research and an outstanding team of doctors. My bipolar symptoms were not clear cut or “textbook” so it took a team of specialists to really help me find the best treatment path.
Dr. Val: What have you found to be most helpful (therapeutically) to keep you feeling balanced and in control?
Therese: My three staples are diet, exercise, and sleep, because I think that with any illness you just have to make those a priority. Obviously, finding the right doctor and the right medication is important too. Another key component to my recovery was connecting with a greater mission – I see that as my blog. Reaching out to others gives back to me every day. When I read a biography of Abraham Lincoln (he struggled with major depression, but didn’t have meds back then) I was struck by the fact that he focused on the emancipation of slaves as a positive way to get through his depression.
Obviously, a good therapeutic relationship with your doctor is important, as well as finding the right medications for you when/if needed.
I’ve found Dr. David Burns’ book, “Ten Days To Self Esteem” to be really helpful. It’s a work book that you can use as a journal. He asks you to list all your distorted thoughts, how they’re distorted and then how you can think differently. For example, we sometimes engage in mind-guessing, like “Oh he hates what I just said…” when the person isn’t thinking that at all. This book is really good for people with mood disorders.
I also regularly engage in prayer, and as a Catholic it’s really important to me and my healing.
Dr. Val: What advice do you have for people living with bipolar disorder?
Therese: You have to surround yourself with people who understand your illness because it’s so easy to be hard on yourself and adopt an attitude of “I should be able to get over this problem” and then feel deflated when it doesn’t magically disappear. It is so much easier when you have friends around to remind you that bipolar disorder is an illness like arthritis or diabetes – that it can be disabling and it’s not your fault.
Bottom line: Work as hard as you can on your diet and exercise, use light therapy as needed to help elevate your mood, and educate yourself as best you can about your illness.
Dr. Val: You mention diet as an important factor. Do you follow a special diet or do you just mean ‘healthy eating’ in general?
Therese: Mostly I’m talking about a healthy diet with lots of fiber, fruits and veggies, lean protein and whole grains. Caffeine and sugar are dangerous and alcohol can really mess up psych meds. Everything nowadays seems to have high fructose corn syrup in it. I try to stay away from highly processed foods and white flour.
Dr. Val: Do you believe that there is a stigma associated with bipolar disorder? How can that be reduced/removed?
Therese: The stigma does exist. I read a recent article about celebrities basically saying that antidepressants sap your personality, creativity, and sex drive. They make it sound as if people with bipolar disorder are doomed to live a dull and mediocre life. Other articles, like those about Britney Spears, are so negative. They make you think, “Oh God, this woman is never going to be normal.” The media really does bipolar disorder a disservice. Why not say that 70-80% of people with bipolar recover completely and do beautifully? They live very fruitful and productive lives. I have a hard time with how the media presents mental illness in general.
I also find that when I tell people that I have a therapist appointment their eyes sort of bug out. But it shouldn’t be shameful, it’s no different than going to a doctor’s appointment. We have to continue to work on tolerance and acceptance for mental illness.
Dr. Val: What role can online communities play in the management of daily life with bipolar?
Therese: Online groups have proven to be beneficial to those suffering from depression. Sharing your story is therapeutic in itself. Also the anonymity offered by online groups can make sharing stories and struggles more comfortable. For people who live in remote areas or who don’t have access to transportation, online groups offer the best way to connect with others.
Dr. Val: How do your coping mechanisms change when you’re struggling with mania versus depression?
Therese: Some of them are the same, like getting good sleep, eating healthy foods and exercising. I have two little kids so I watch the movie Cars a lot with them. And I like what one of the characters says in response to a question about steering around curves. He says, “in order to go left, you need to turn right, and in order to go right, you need to turn left.” I always remember this when I’m manic or depressed because it’s counter-intuitive.
When you’re depressed, the last thing you want to do is to get yourself involved in life, and get up and get moving – but that’s exactly what you need to do. When you’re manic it’s so easy to say, “This is so great, I’m on a roll, let’s go all night!” It’s hard to shut down your computer and say, “No, I’ve worked enough, now it’s time for bed.” But that’s what you need to do.
Dr. Val: Is there any bipolar-related information or service that you’ve always wished you could get from the Internet but doesn’t exist yet?
Therese: I wish there were an Amazon.com type directory online where you could find therapists, doctors, partial stay hospital programs, and support groups in your zip code, and read reviews from others about them. A one stop resource center would be great!
Dr. Val: You work at Belief Net – tell me a little bit about what the spiritual side of the bipolar journey. How has spirituality played a role in your healing?
Therese: I grew up as a very religious kid and my “OCD” made itself manifest at a young age. I remember that when I was in fourth grade I wrote a book for my mom and her prayer group friends about how to get to heaven. I look back and laugh at that now because it probably listed things like looking at the sacred heart and praying the rosary 15 times.
But on a more serious note, when I was deeply depressed and feeling suicidal the thing that kept me from taking my life was the thread of hope that God was there. If I didn’t have that I don’t think I’d be here. I often asked God for signs of His presence during that horrible times, and believe it or not, I always received them.
*Full Interview Available Via Audio Podcast*This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
May 6th, 2008 by Dr. Val Jones in Patient Interviews
Tags: Brain Cancer, Cancer, News, Research
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Cameron J. Mitchell was diagnosed with a glioblastoma multiforme (or GBM, an aggressive form of brain cancer) over four years ago. The prognosis for this tumor is usually grim, as most people succumb to it within 4 to 18 months of diagnosis. However, Cameron got involved in a clinical trial for a promising new therapy and has beaten the odds. Since Revolution Health was founded partly in response to Dan Case’s battle with a GBM (and I had the opportunity to participate in the Race for Hope to benefit Accelerate Brain Cancer Cure last weekend), I thought it would be great to highlight Cameron’s story. Cameron also happens to be a close friend of one of our staff at Revolution Health.
Dr. Val: Tell me about how you were diagnosed with a brain tumor. What symptoms did you have? What led up to the diagnosis?
First of all as you can imagine getting the news is like being hit by a truck. You think, “this just can’t be happening to me.” And of course the “why me?” scenario comes into play.
My initial diagnosis came after having a bout of seizures, both grand mal and partial. After a series of tests and procedures they determined that the ongoing problem was the result of a brain tumor. The typical protocol requires 6 weeks of radiation along with oral chemotherapy followed up with a visit to your oncologist to determine a plan of action.
Dr. Val: How did you find out about the Duke clinical trial?
Being that the “plan of action” did not have a very favorable outlook I asked my oncologist, “What would you do in this case?” He suggested I contact the Duke Brain Tumor Center. He actually made the initial call. Later that night I received a call from Dr. Henry Friedman saying that they could help. By the end of the week I received a call from Dr. John Sampson telling me that he was working on a specific clinical trial. As long as I could meet some prerequisites I would be eligible to participate. A lot of thought and pondering goes into that decision: “Is it the right one?” “What if it does not work?” But at that point nothing else had been proven, so my wife and I decided that I have nothing to lose to give it a chance.
Dr. Val: What have the treatments been like for you? Do you have any advice for other patients with GBM?
The treatments are an ongoing, once a month procedure, and I travel from Michigan to North Carolina for them. So it definitely is a huge sacrifice but at for very worthy cause. Having MRIs every two months can create a lot of anxiety not knowing if the tumor is back or not.
The four main pieces of advice I could give to new GBM patients are: 1) Get as much as information as you can. Ask lots of questions. 2) Keep a positive attitude (SO IMPORTANT). 3) Keep a strong group of supporters like family, friends and especially spouse. 4) Remember that this is NOT your fault.
There are a lot of very good sites out there on the internet for advice. But one thing to keep in mind, some of them are a little outdated. The better sites allow you to ask questions.
Dr. Val: What advice do you have for family members and loved ones of those diagnosed with a GBM?
Family members must be informed about what is going on. Under absolutely no circumstances should they be left out in the cold. Most patients find out early that their spouse has at least as much (if not more) difficulty dealing with this disease as the patient.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
