Categories

Category: Patients

The Case to Realign Parkinson’s Disease Research

By STEVEN ZECOLA

If asked, the leaders of the research organizations working on Parkinson’s disease would say that they have made tremendous progress and are optimistic on finding a cure for the disease. 

In truth, this viewpoint understates the magnitude of the challenge and results in insufficient resources being devoted to PD. Given the size of the challenge versus the available resources, most research studies today don’t even include finding a cure for PD as part of their objective.

The time is ripe to get everybody on the same page when it comes to the objectives, resources, and timelines for PD research.

What We Know About Parkinson’s Disease

Parkinson’s disease (PD) is a chronic, progressive movement disorder that affects the lives of almost one million Americans. Roughly 50,000 of the inflicted people die each year, often by injuries from falling.  The incidence of PD is expected to expand to 1.6 million in the U.S. by the year 2037.

The characteristic motor symptoms of PD are tremors, stiffness, slowed movement and impaired balance. Over time, people with PD also experience non-motor symptoms including changes in mood, problems with attention and memory, sleep disturbances, fatigue, and changes in bowel and bladder function.  PD has a considerable impact on the quality of life.

The cost to treat PD has been estimated to be $50 billion a year, split equally between the direct cost of care and the indirect costs of lost opportunities for the patients and caregivers.

PD is a complex disease which is thought to result from an interaction between genetic and environmental risk factors.  More than 20 genes have been identified as having an impact on the onset of PD.  However, genetic variation is estimated to contribute only about 25% to the overall risk of developing PD. Moreover, like the majority of neurodegenerative disorders, little insight is available on how specific sequence variations contribute to disease development and progression.

In short, the exact cause of PD is unknown.  However, we know that that there is more than one manifestation of the disease. We can also reasonably conclude that more than one single element or therapy will be required to cure the disease.

What We Know About Parkinson’s Disease Research

PD was first discovered and described by James Parkinson in 1817 in London, England.

In 1911, the efforts of Kazimierz Funk, a Polish biochemist, paid off with the identification of Levodopa as a potential treatment.

By 1970, the FDA approved the use of Levodopa combined with Carbidopa for the treatment of PD. Since then, this combination has remained the gold standard for treatment.

During the last 50 years, many attempts have been made to improve this treatment and avoid its long-term complications.  While several enhancements have been approved by the FDA and have helped patients, no treatment has cured or slowed the progression of the disease.

Continue reading…

Why I Seldom Recommend Vitamins or Supplements

By HANS DUVEFELT

People here in northern Maine, as in my native Sweden, don’t get a whole lot of natural sunlight a good part of the year. As a kid, I had to swallow a daily spoonful of cod liver oil to get the extra vitamin D my mother and many others believed we all needed. Some years later, that fell out of fashion as it turned out that too much vitamin A, also found in that particular dubious marine delicacy, could be harmful.

This is how it goes in medicine: Things that sound like a good idea often turn out to be not so good, or even downright bad for you.

Other vitamins, like B12, can also cause harm: Excess vitamin B12 can cause nerve damage, just as deficiency can.

Both B12 and D can be measured with simple blood tests, but the insurance industry doesn’t pay for screening. That is because it hasn’t been proven that testing asymptomatic people brings any benefit. In the case of B12, it is well established that deficiency can cause anemia and neuropathy, for example. But here is no clear evidence what the consequences are of vitamin D “deficiency”. A statistically abnormal result is not yet known to definitely cause a disease or clinical risk, in spite of all the research so far, but we’re staying tuned.

Continue reading…

Doctor-Patient Relationships: I Don’t Babysit – I Want to Empower

By HANS DUVEFELT

I have known doctors that cultivated a dependence among their patients by suggesting their health and safety depended on regularly scheduled visits and laboratory testing for what seemed to me stable, chronic conditions. People would come in every three months, year after year, to review cholesterol numbers, potassium levels and glucose or blood pressure logs and have a more or less complete physical exam every time. Patients would also get scheduled for rechecks of ear infections and other simple conditions I always thought patients can assess themselves.

Compare the effort on the part of the physician with that type of practice versus seeing stable patients less often, doing more urgent care, and being more available for new patients. The first approach seems comfortable, possibly complacent, and the second more demanding, but also more satisfying, at least to me. My goal is always to make my patients as independent and self sufficient as they can be. I don’t want them to be dependent on me in an unhealthy way.

It is a matter of temperament, but it is also a matter of stewardship and resource management if we see ourselves as serving the populations and communities around us.

Maybe it is because of my Swedish upbringing and education, but I would feel guilty if sick patients or even relatively healthy people don’t even have access to a personal physician if I were to spend my days over-monitoring stable conditions.

In this medically underserved state, don’t we have a responsibility to consider whether we are getting too comfortable in our chronic care routines? Patients check their own blood pressures and glucose levels. They could get in touch if their numbers worsen. Do we really need to bring them in to make sure they don’t stray when there are people in our communities without access to care?

I sometimes actually use the phrase “I don’t babysit”. I don’t necessarily use the word “empower”, but that is what I always try to do with my patients.

Continue reading…

Off Our Chests: No Secrets Left Behind

By CHADI NABHAN

She was a successful corporate lawyer turned professional volunteer and a housewife.

He was a charismatic, successful, and world-renowned researcher in gastrointestinal oncology. He was jealous of all breast cancer research funding and had declared that disease his nemesis.

They were married; life was becoming a routine, and borderline predictable. Both appeared to have lost some appreciation of each other and their sacrifices.

Then, she saw a lump, and was diagnosed with breast cancer. Not any breast cancer, but triple negative breast cancer. The kind that is aggressive and potentially lethal. The year was 2006, and their lives was about to change forever.

This is the story of Liza and John Marshall, who decided after 15 years of Liza’s diagnosis to disclose all, get all their secrets out in the open, and “off their chests”. They did so by writing a book that I read cover to cover and could not put down.

The authors decided to not only share their cancer journey as a patient and a caregiver, but also to share much of their personal and intimate details. They wanted us to know who they are as people, beyond patient and oncologist husband. We got to know how they met, when they met, and how they fell in love from the first sight. We got to know some corky personal details, and as a reader, I felt that I was part of their household. John shares how losing his mother at a young age to lymphoma affected him personally and professionally. We learn that they attend church every Sunday. Both are people of faith and they let us know how their faith helped them during these challenging times. Losing a dear friend to breast cancer took a toll and certainly made them less certain whether Liza’s fate would be any different.

They alternate writing chapters so that we get to know various events and stories from their sometimes-opposing points of view. We get to understand how a cancer diagnosis affects a caregiver, who happens to be a busy academic oncologist with little time to spare in between clinical practice and traveling for his work. At some point, John expresses resentment that all of the attention was being diverted towards his wife -the patient- and that he was left alone with few people caring how he felt and what struggles he was going through.

Continue reading…

“Tell Me More”

By HANS DUVEFELT

Words can be misleading. Medical terms work really well when shared between clinicians. But we can’t assume our patients speak the same language we do. If we “run with” whatever key words we pick up from our patient’s chief complaint, we can easily get lost chasing the wrong target.

Where I work, along the Canadian border, “Valley French” expressions tripped me up when I first arrived. The flu, or in French le flu (if that is how you spell it – I’ve never seen it in writing) is the word people use for diarrhea. Mal au cœur (heart pain) doesn’t mean angina or chest pain, but heartburn, a confusing expression in English, too.

But even if we are all English speaking, clinicians need to be careful not to assume common words mean the same to everyone.

I have seen many patients complain of anxiety, but not actually be worried about anything. A number of bipolar people have used the word anxiety when, in my personal vernacular, they are really describing pathological restlessness. I once had a patient complain of “nerves” but not have a worry in the world except for his hereditary essential tremor, which he assumed was a sign of untreated anxiety.

People often resist my labeling their symptom as chest pain, insisting that I am wrong about the location and the character of their discomfort. Instead, they might insist it is indigestion or prefer pressure, tightness or heaviness in their throat, epigastrium or even between their shoulder blades. “Chest pain is shorthand for all that”, I tell them.

I hear people use the word dizzy for a gnawing feeling in their epigastrium, and nauseous for a sense of early satiety after eating.

Continue reading…

The Pain Is In Your Brain: Your Knees Know Next to Nothing

By HANS DUVEFELT

A “frozen shoulder” can be manipulated to move freely again under general anesthesia. The medications we use to put patients to sleep for such procedures work on the brain and don’t concentrate in the shoulder joints at all.

An ingrown toenail can be removed or an arthritic knee can be replaced by injecting a local anesthetic – at the base of the toe or into the spine – interrupting the connection between the body and the brain.

An arthritic knuckle can stop hurting and move more freely after a steroid injection that dramatically reduces inflammation, giving lasting relief long after any local anesthetic used for the injection has worn off.

The experience of pain involves a stimulus, nerve signaling and conscious interpretation.

Our brains not only register the neurological messages from our sore knees, shoulders, snake bites or whatever ails us. We also interpret the context or significance of these pain signals. Giving birth to a long awaited first baby has a very different emotional significance from passing a kidney stone, for example.

I have written before about how we introduce the topic of pain to our chronic pain patients in Bucksport. Professor Lorimer Moseley speaks entertainingly of he role of interpretation in acute pain and also explains the biochemical mechanisms behind chronic pain.

TREATING PAIN WITH ANALGESICS

Even when we are awake, we can reduce orthopedic pains with medications that work on the brain and not really in our joints. A common type of arthritis, such as that of the knees, is often treated with acetaminophen (paracetamol), nonsteroidal anti-inflammatory drugs (NSAIDS) like ibuprofen or even opioids.

Continue reading…

Pledge to the Participatory Medicine Manifesto!

By THE SOCIETY FOR PARTICIPATORY MEDICINE

We are excited to announce that the campaign to pledge to the Participatory Medicine Manifesto is launching today — and we need your support!

Our Participatory Medicine Manifesto is a call to action for patients, caregivers and health care professionals to equally share decision-making and respect one another. 

We want you and your organization to help us fix a broken healthcare system from the ground up. We want to put democracy back into the culture of healthcare by enabling patients, healthcare professionals and caregivers to all have an equal voice. We need your influence to inspire people. We will list individuals and organizations that support the Manifesto.

Please view and sign the SPM Manifesto Pledge today 

We have designed a promotional campaign encouraging people to pledge to the Participatory Medicine Manifesto. As part of this campaign, we created a pledge form and social media toolkit for people and organizations to use in spreading the work about Participatory Medicine.

And spread the word to your colleagues and friends to help us reach our goal. After you pledge you will find the easy to use social media toolkit.

We greatly appreciate your help and support!

Eric Bersh, Judy Danielson, Kevin Freiert, Matthew Holt, Dr. Danny Sands, Amber Soucyall board members of SPM

Pledge Today! 

PS – Please share with your friends & followers!

The Art of Prescribing (Or Not)

By HANS DUVEFELT

I have learned a few things about prescribing medications during my 42 years as a physician. Some are old lessons, and some are more recent. I thought I’d share some random examples.

First: I don’t like to have to use medications, but when they seem necessary, I choose, present and prescribe them with great care.

CHOOSING MEDICATIONS

Medications are like people. They have personalities. With so many choices for any given diagnosis or symptom, I consider their mechanism of action, possible beneficial additional effects and their risk of unwanted side effects when selecting which one to prescribe. To some degree that goes against today’s dogma.

Blood pressure medications, for example, have what I call an A-list and a B-list. The A-list contains drugs with a proven track record of not only reducing blood pressure, but also actual heart attack and stroke risk. Why we choose from the B-list, the drugs that don’t decrease cardiovascular risk or actually increase it, is a little beyond this simple country doctor’s ability to understand.

ACE inhibitors like lisinopril and diuretics like hydrochlorothiazide are the two recommended first choices in this country. But the A-list also contains amlodipine, a calcium channel blocker and, further down, metoprolol, a beta blocker. I make those less favored A-listers my initial choice in two scenarios:

Amlodipine is my choice when I see a hypertensive patient who prefers a set-it-and-forget-it treatment plan. No bloodwork is required after starting it to monitor for kidney or electrolyte problems, so even if the patient doesn’t come back for a year or more, there is no real risk involved.

Metoprolol, which blocks the effect of the stress hormone adrenaline on the cardiovascular system, is what I talked my own doctor into prescribing for me. That was back in the day, when I was a hard working, somewhat Type A personality with high blood pressure. With the passage of time, life experience, weight loss and my transformative relationship with my Arabian horses, my blood pressure normalized and I didn’t need medication anymore.

Years ago, we all selected blood pressure medications according to the “phenotype” (appearance or general impression) of the patient: metoprolol if intense, hydrochlorothiazide if swollen, nifedipine if cold-handed, lisinopril If naturally hypokalemic (low potassium).

Continue reading…

This is Not Health Care

By HANS DUVEFELT

We use the word health rather loosely in America today. Especially the expression health care, whether you spell that as one word or two, is almost an oxymoron.

Health is not simply the absence of disease, even less the pharmaceutical management of disease. The healthcare “industry” is not the major portion of our GNP that it is because there is a lot of health out there, but the opposite. What consumes so much money and generates so much profit is, of course, sick care. The sicker people are, the more money is spent and earned in this market segment. It is a spiral, and a vicious one.

Health is a naturally occurring phenomenon, a state of perfection. Modern life has corrupted many natural, self-healing biological mechanisms and upended the natural order of things in our bodies – just the way it has altered our environment.

Our bodies are pretty ingenious in their ability to heal. When I crushed my finger in my garage door a few years ago, my disfigured fingertip, bisected nail and contused nail bed slowly regained their original shape, almost like a lizard grows a new tail. Yet in an opposite scenario, a person with scleroderma can lose their fingertip to gangrene without physical injury because of what we call autoimmunity – instead of self healing, our bodies can engage in self destruction. My fingertip could heal perfectly but some people’s skin or stomach ulcers fail to do so.

We intuitively seem to have accepted that, most of the time, nature takes care of itself if we don’t mess with it. And when temperatures rise, forests burn or species go extinct, we are quick to assume our industrial or agricultural processes are the cause.

Yet, we have this head-in-the-sand view of disease that it is a random occurrence, the sudden manifestation of ancient and rare genetic glitches or I don’t know what. The real answer is that much of it is a consequence of what we eat and otherwise expose our bodies to – how we produce and refine food, how we alter its natural properties and how we over- or under-consume basic nutrients.

Functional Medicine asks and answers many of these questions and promises to be the future of medicine. I believe in this, but I also believe that the sick-care industrial complex is powerful enough to severely slow down this revolution. I also believe the food industry will double down its efforts to continue misleading the public.

Continue reading…

The General Public is Meant to be Deceived: The American Food Conspiracy

By HANS DUVEFELT

Everybody knows how to operate smartphones and understands complex modern phenomena, but many Americans are frighteningly ignorant about basic human nutrition.

I am convinced this is the result of a powerful conspiracy, fueled by the (junk) food industry. Here are just a few examples:

Milk has been advertised as a healthy beverage. It is not. No other species consumes milk beyond infancy. Milk based products like ice cream and yogurt are on top of that often sweetened beyond their natural properties.

Fruit juices make it possible to consume the calories of half a dozen pieces of fruit faster than eating just one. Naturally tart juices, like cranberry, are sweetened the same way as soft drinks (high fructose corn syrup), and therefore no healthier than Coca Cola.

Things made from flour—like bread, crackers, boxed and instant cereal, pasta and snacks like pretzels or chips other than plain potato chips—raise blood glucose levels faster than eating table sugar: The breakdown of flour starts in our mouths because of enzymes in our saliva while sucrose doesn’t break down until it reaches our small intestine.

Sugary foods, even candy like Twizzlers, are advertised as “fat free”, which is a relic from the days when fat was believed to be bad for you. Many fats, like those in olive oil, salmon, tree nuts and avocado are extremely healthful.

Another example of tangential descriptions is when flour based snacks are promoted as “baked, not fried”. Flour is bad, no matter what you do with it and, in fact, the presence of fat slows down the blood glucose rise from highly processed carbohydrates.

Continue reading…

Registration

Forgotten Password?