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Early Onset Alzheimer’s Disease: A Profile In Courage

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.

Now That’s Cold

I spent my senior year of college abroad in Scotland. Between the fall and spring semesters I went on a ski trip to Austria, and in usual Val fashion did something klutzy out of enthusiasm. I was racing down a slalom course in a snow storm and was so excited to have finished without missing a wicket that I looked up at some bystanders to give them a thumb’s up and I tripped on a clump of snow and fell down. Unfortunately my binding didn’t release and I ripped some ligaments off my knee. I heard them pop too. It was quite gross.

Anyway, I was shipped back to Canada for a complex ACL repair procedure by the Olympic Ski Team’s surgeon (I was NOT Olympic material in case any of you had the slightest doubt – I was just in the right hospital at the right time). What followed my fine surgery was a not so fine follow up – in fact I didn’t get any physical therapy whatsoever, and had no idea about how to make my knee functional again. All I knew is that it hurt like heck and I didn’t want to move it. And I pretty much didn’t. Not for a month or so.

Now the healthcare professionals in the audience just winced at that. Not moving a limb for a month is highly inadvisable. My knee became contracted so that I couldn’t straighten it at all. I could barely bear weight on it and I relied almost solely on crutches. I didn’t know how long knees were supposed to take to heal so I figured everyone went through this crutch phase for months.

I returned to Scotland for my spring semester, and I can tell you that traveling alone with one functional leg, a pair of crutches, winter gear and two suitcases is no piece of cake. But the most memorable part of this whole debacle was when I received my new dorm room assignment: the room was on the 5th floor – no elevators. I pleaded with the dorm warden (a humorless, underweight Scottish man with extraordinarily greasy hair and snaggle teeth) to have pity on me and reassign me to a room on the first floor or maybe the second. He handed me the 5th floor room keys unflinchingly.

So it took me about an hour to drag myself and all my stuff up to the 5th floor. I was really in a lot of pain, and totally exhausted from the multi-stop flight overseas – hadn’t slept in about 36 hours. Of course the room was the last one at the end of the hall and no other students had checked in yet – the whole place was deserted because I’d come back early to see if I could get a more conveniently located room (thinking ahead).

When I got to my room I was nearly overwhelmed by the smell of vomit. Apparently the winter session kids had been using my dorm room for drunken partying and had puked on the mattress. I was so tired all I wanted to do was go to sleep but the options were the cement floor or the pukey mattress so I called down to the front desk. The warden picked up – I really couldn’t understand much of what he said in his thick brogue. I explained to him that I’d made it to my room but that the mattress was covered in vomit and I wondered if (now) I might be eligible for a different room. He said he’d come up to check on the mattress.

It took him about 40 minutes to show up. He made no eye contact with me as I limped after him into the room to show him the vomit. He looked at the mattress, smiled wryly, dragged it to the edge of the bed frame and flipped it over. Then he walked out of the room and went back down the stairs to retake his post at the front desk at the entrance to the building.

Now that’s cold.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.

Coping With Bipolar Disorder: One Woman’s Journey

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.

Pedometer Malfunction

This is day 2 of the Woman Challenge, and I’m supposed to take at least 10,000 steps a day for 8 weeks. So I got myself a pedometer and marveled at how sedentary I am. Then I dragged myself upstairs to a small stuffy white room (where my building has a treadmill and elliptical machine) and decided to make up the rest of my steps for the day (about 8000!) So I was jogging along, huffing and puffing, eyes fixed on a door jam, and at the 30 minute mark I checked my pedometer. I was at 3000 steps only. Now, my math isn’t that great, but I think I can do more than 1000 steps in 30 minutes of jogging.

On closer inspection, my pedometer had ceased counting. Argh! I started shaking it and I realized that there must be some sort of ball bearing inside, trapped like some helpless pinball in the recesses of the little metal box in which it lives.

So my question is this: does anyone know how to keep a pedometer functioning properly? Do I need to find a way to make more movement in the Y-plane when I’m jogging? Should I bob around or do the “funny walk” to keep the little thing from going into pinball “tilt” mode?

Maybe hubby was right – I need to find a sport that I’m good at.

Hrmph.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.

CBS Evening News: Vaccines and Autism

I’ve been following this story with interest and concern. A little birdie told me that Katie Couric has prepared a special report about the potential link between vaccines and autism for the CBS news tonight (May 12th). Sharyl Attkisson will be interviewing Dr. Bernadine Healy, former head of the National Institutes of Health, about her perspective. The CBS website has a 5 minute video clip now available on their site.

While I certainly agree with Dr. Healy that science must not be stifled, and that it’s fair game to research any environmental factor that could plausbily be related to autism, I am deeply concerned that the potential harm induced by vaccines (on kids with rare genetic disorders) will be generalized inappropriately and parents will refrain from vaccinating their children. We are already beginning to see Measles make a comeback (a disease with that can be fatal or cause irreversible brain damage) due to lower vaccination rates, and this trend may continue. Unvaccinated kids are not just a threat to themselves (because they’re at much higher risk for developing preventable diseases) but a threat to vaccinated kids as well, since vaccines are not 100% effective.

What do you think about the CBS segment? Watch it with me and we can discuss it here on my blog. Robin Morris, mother of a child with autism and a patient advocate at Revolution Health, will weigh in as well.

*Update: the full script is here*This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.

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