Terry's Thoughts and Threads: National Institute of Health

Showing posts with label National Institute of Health. Show all posts

Wednesday, July 4, 2012

Reputable Medical Websites

We have the internet at our fingertips. We have a medical condition that we know is a topic of some websites. Which sites do we choose? Which sites do we trust? And do we share with our doctors what we find online?

Today's internet users have to take ownership of their responsibility in assessing their travels through informational sites. This obligation remains whether one is seeking medical information, historical data, or current event coverage. Every website has a webmaster, an editor or program director who selects what will be uploaded to their page(s). All have their own agendas.There are plenty of search engines available to help you find a plethora of sites dealing with the topic you are researching: Bing, Google, Yahoo, and more. Innumerable data bases exist, and consumers must learn how to create a library of trust.

What are the keys to unlocking this treasure house of information? Begin with the url (the web address) and start at the end: most will end with .com, .org, .net, .gov, .edu here in the United States. Students are taught early to expect a .com site to be one sponsored by someone with an agenda, true or not, and .net as being like a co-op of users with a common interest. Urls with the suffix .org are most often linked with organizations like museums or other private institutions that have a reputation to maintain. Those with.gov are government sponsored which, depending on one's political outlook, may be a positive or a negative. And I learned soon enough as a teacher leading young adolescents through research projects online that the suffix .edu can be widely variable: .edu may mean it is hosted by a college publishing highly qualified, scholarly articles, or it may be a classroom site hosted by an elementary school and showcasing third grade student compositions with factual errors, neatly typed.

Medical issues are also addressed in a wide range of sites, and so may be no more reliable than one patient's personal journal, complete with singular bias, or a site filled with many chatters sharing their experiences and differing amongst each other in their replies. These sites may be both confusing and misleading to a person recently diagnosed just trying to 'get a handle' on the terminology and stages of a condition. Other websites may be owned and thus influenced by the large pharmaceutical companies producing and marketing specific solutions at great expense toward greater profits. Most medical information sites will responsibly remind readers to always check with their own doctors before accepting any advice or practices sponsored by the site.

I've learned a great deal about multiple sclerosis by reading at the National Institute of Health's site. I've also learned a lot of vocabulary, and gained second hand knowledge of many medications, at the NMSS message boards; I'm careful, though, to remind myself that they are personal stories that differ widely in viewpoint and in credibility.

Many doctors don't want to hear what you've learned at a website, reputable or not. They may be offended that in reading there you are less dependent on their professional knowledge. Yet they haven't the time to spend educating you about your condition at the level of detail that you may wish to be educated. Nor do they expect you to take medical courses at a university. This lack of professional information sharing within a doctor's tight schedule is what leads to patient frustration and reaching out to the internet for further information.

There are new sites appearing almost every day on every medical condition. Doctors haven't the time nor the interest in screening those sites for their patients. But they may have experience and knowledge of some sites that they believe are reputable, and it doesn't hurt to ask for a list that you can turn to when the doctor is not available.

The articles below are sites that I have found trustworthy, and have shared at my Facebook page for others looking for online resources. But I, too, must ask you to always check with your own medical team before choosing to follow a practice learned online.

And I'll remind you to go to my online store, or CreateSpace, or Smashwords, for a 50% discount on my book, Multiple Sclerosis, an Enigma. The links will be listed below the related articles.

Thursday, May 10, 2012

Rambling Thoughts and Loose Threads

It's time to catch up with you again. April was an extraordinarily busy month for Rick and me, and I want to share some of the highlights with all of you.

Early in the month, I went up to Maine to be a full time Nana, staying with my two grandchildren while their mum, my daughter, took a well earned vacation. Rick decided to stay here at home, but did Skype with me every morning and evening, which helped minimize the gap we'd feel apart from each other. Inevitably, he'd call when I was preparing a meal or a snack, breakfast, supper, or brownies. That is fairly unusual for me - cooking is something I stopped doing almost five years ago, when my menu and his became different from each other's. I was still teaching full time then, and bringing home the unending bag full of correcting and grading to do, and so he began cooking two meals each night. He never complained, and found ways to make our meals compatible. Whole grain spaghetti with tomato sauce for me, and regular pasta with meat sauce for him ... but brownies for both of us!

In Maine, having begun to feel more like my real self months earlier, I found myself up early in the morning to wake the kids for school ... making simple items on school days and French toast on a weekend morning. Suppers were easy, as my daughter had prepared and frozen some favorite meals, and all I had to do was heat things in the oven. It was a turning point for me ... a time when I became responsible again for others' foods, laundry, and transportation. And yes, I drove my daughter's cute little five speed manual transmission Chevy - fifteen years since I'd driven a standard! But like riding a bike, we never forget, and I only stalled twice when I forgot to clutch as I stopped at an intersection. Not bad for a Nana out of practice.

Upon returning home, I then had a two hour radio broadcast book discussion arranged by my friends at MSStation.org. But Murphy, who often plagues my daughter in Maine, apparently followed me home and exerted his Law on my evening. Both portable phones downstairs suddenly were inoperative fifteen minutes before the telephone conference was to begin. Not panicking, I calmly went upstairs with my laptop, and plugged it in there, and brought my pot of tea and cup and found a space on my bureau top for them. But the upstairs phone also had a tired battery, and began beeping for help. My husband interceded then, and said that we could go into my son's study and use his phone, which was a land line complete with cord-attached receiver. I resettled into his office chair, laptop now on my knees (thank goodness we'd bought a fan-cooled lap desk that plugs right into the computer's USB port. A very good $15.00 Clearance Deal!) Rick brought me a single cup of tea, for there was no room for the tea pot and cozy, and with a minute to spare I was ready for the conversation. Phew! (And, if you missed the broadcast but want to listen to the recorded book discussion, look to the right margin of this blog, and find the BlogTalk radio icon. My 'show' is the third one in the list. It really did take the full two hours, so settle yourself in with a cup of tea!)

A few days later we drove down to Washington D.C. We'd planned to make that trip over two days' time, stopping somewhere along the way, but traffic was cooperating and we were looking forward to spending some time in the city, seeing the monuments, before checking into the National Institute of Health for the Parkinson's Risk Study that I participate in every eighteen months. So we made the full drive in one twelve-hour day, and checked into the hotel just before bedtime. Up early the next morning, we shared the continental breakfast in the tiny dining area before walking to the nearest metro station and figuring out the ticket dispensers. In the city, we walked for hours and hours, seeing many of the veterans monuments, and one Smithsonian, and the Roosevelt and Jefferson Memorials as well. We ate lunch and afternoon snacks at outside tables as the weather was perfect ... high sixties with a bit of partly cloudy shade and a light breeze. We took the metro back to Bethesda, and on our walk to the hotel, we came across a French cafe, where we had delicious French food and fresh fruits for supper. We slept in the next morning, worn out from all our walking. Just before noon, we rose, packed up, and headed over to NIH, just a few miles from the hotel. We checked Rick into the family lodge, and me into the neurology inpatient room, and began our week there.

Five days later, many tests later, a few outdoor walks together between tests, and another packing, we set out for home. We left Bethesda after eating lunch one more time in the hospital cafeteria, and again planned to stop along the way rather than driving straight through, But as luck would have it, we were not in sync with any city rush hours, and as we were (were!) making good time, we continued on to the Massachusetts border stopping only for a quick supper. We would be home by eleven, we thought.

The Mass Pike was repaving, and had an odd traffic snarl of scores of eighteen-wheel tractor trailer trucks at the toll gates. The multi-lane highway comfortably had approached six open toll gates, only to find that immediately after passing through those gates, the highway was reduced to one lane, and no one seemed quite sure of which lane that would be. Arrows to go left, more arrows to go right, and all six lanes merged into one center lane within a quarter mile of those gates. We lost at least an hour there, and weren't home until 1 in the morning. Finding a bathroom between eleven and one was tricky, but we did finally find one near midnight. Again, Phew!

We slept in the next morning, and awoke to find we were already five days into May. The bills were due May 1st, (while we were still in Bethesda) and the pension for the month necessary to pay those bills had arrived in the bank account while we were away, and so we sat at the table late that morning and wrote checks and sealed envelopes. A few were late but forgiven, except for the car insurance, which immediately earned us a cancellation notice a few days later. I called our agent here in town, and told him the payment and notice crossed in the mail, and that we did the best we could, being away at the first of the month. He checked with the insurance agency, saw that they had received the payment and rescinded the cancellation notice, and we breathed a sigh of relief.

Today I had two doctor appointments locally, and scheduled a third with a new doctor (dermatologist) in Brighton for later this month; then I asked a fourth doctor's office to schedule my once a year osteoporosis infusion in the next few weeks, as planned. So we are back on the local circuit now, but had a great time in Maryland, and will go again in eighteen months.

Meanwhile, it's almost summer! Wow, what a quick season Spring was!

Before I go, I'd be remiss if I didn't tell you about the Mother's Day special offer for my book, Multiple Sclerosis an Enigma. I have created a new coupon code at Smashwords: for just under $5.00 you can purchase the download in any format: kindle, mobi, nook, sony, and many others. Just enter the discount code LY67U at this site: https://www.smashwords.com/books/view/152332 .

And please, if you have already read the book, let me know what you thought of it by writing a review here or at Amazon or Facebook or in email ... I would love to know what you thought! Perhaps you could share this site with your friends so that they can catch this discount before it expires on June 9th?

Happy Mothers' Day, all!

Wednesday, April 4, 2012

WEGO Health Prompt Day 4: Why I write about my health

Why do I write about my health? The answer to that question has changed through the years, as has my health.

In the years prior to diagnosis, I wrote more about my parents' health. They both experienced difficult health issues during the last two decades of their lives: a pacemaker for one, a new hip for the other, failing eyesight with age, cancer surgery for both, and then Alzheimer's and Parkinson's. I kept track of their symptoms, prescriptions, appointments (with my husband's help) ... I was their health proxy, and so I was in contact with their doctors (with my sister's help) ... and what symptoms I had myself took a back seat until their issues brought closure to their lives.

And then I wrote of my symptoms, fully expecting to follow my parents' path toward Parkinson's Disease. But along the way diagnostic tests, appointments, doctors' names and my own health proxy (my husband) became the topics in my journal. The completion of those tests led to the diagnosis of relapsing remitting multiple sclerosis. It was not what I'd anticipated, but it was what I got. And with it, I was given a prescription for a disease modifying drug, but no cure.

My journal entries darkened with anger, and trembled with frustration, anxiety, and fear. How could I have multiple sclerosis? No one I knew had ever had this diagnosis. How could I give myself an injection each night? How could I ask my husband, who had managed his own parents' illnesses, involving cancer, blindness, COPD and depression, as well as assisting with all my parents' care ... how could I ask him now to help me? How could I go into my classroom each day for another six years, and finish my career on my feet, with the dignity I'd worked so hard to preserve?

My writing helped me to realize that my disagreement with this diagnosis might be disputed by scientific evidence ... the lesions were there ... but my inner self believed that the diagnosis was wrong, and so the treatment was wrong. It was horribly expensive, and though I had a good insurance policy and paid only a small fraction of the thousands of dollars it cost each month, I knew that policy holders' premiums were going up each year, as was the price of my medication. I felt it was unnecessary; I felt it was wrong; I feared that, if it was wrong, it could be causing more damage rather than repairing anything. It made only vague promises of perhaps slowing the progression by 30%, but no guarantee for any one patient. And it interacted with my immune system, which worried me.

I was experiencing no relapses, but I attributed that to my change in menu and my loss of fifty excess pounds, the resulting lowered blood pressure and better energy levels. But through the four and a half years of this treatment, I became more depressed and more fearful of what it might be doing, and writing out those fears, and explaining with written words those disagreements and my rationale for them, I was able to make the decision to follow my heart and discontinue the treatments.

Had I not written my story, I may not have had the courage to follow my beliefs. I am no longer taking the injections with their prohibitive financial costs ... I no longer feel like a fraud carrying a diagnosis that didn't seem real, and I am feeling better each day. I recently walked five miles to raise money for MS research, and I have no reason to stop doing that.

Some say my feeling better is simply a placebo effect; I want to believe that I am better without the injections, and so I believe I am feeling better. But I say perhaps it was my own belief that the medication was doing me harm that made me weaken while taking it, and so not taking it has relieved that burden of worry, depression and anxiety that I had taken on myself. Who is to say whether they or I am right or wrong?

The experts in the study of multiple sclerosis are also conflicted; the assumption that treating the immune system will slow the progression is now being disputed not just by patients like me, but by doctors who are saying this may be a metabolic issue rather than an immune disorder; it may be related to the nutrients needed for healthy mitochondria, in which case my healthier diet was the right choice to make, and that is a validating statement for me. Vitamin D is finally being discussed more openly rather than being left unaddressed.

I will stay in the seven year Parkinson's Disease risk study with the National Institute of Health in Bethesda, if they will have me. There is some question as to whether my current prescription of anti-depressant will conflict with their protocol of testing, and so I may not be able to participate until I have been able to stop that medication. I will write about that in the weeks to come. If I am in their study group, their testing will show any indicators of Parkinson's Disease earlier than might be known if not in the study group. And contrary as it sounds, that medication treatment is one I would willingly take, in an effort to study its efficacy and benefit future generations of my family, and beyond.

I will continue to walk for MS, because I can. And in time I will begin to walk for Parkinson's Disease fundraising, for as long as I can. I still believe that is what lies ahead in my future. The tremors that I experience resemble those of my mother and father. Time will be the judge of whether that, too, is right or wrong.
For the month of April, I've renewed the discount at CreateSpace for Multiple Sclerosis an Enigma. To receive 35% off the regular

price, go to this link:

https://www.createspace.com/3711313

and enter this discount code at the checkout:VXXURQMH

Thursday, March 8, 2012

Just a Few Thoughts Midweek

X Class Solar Flare Sends ‘Shockwaves’ on The Sun [hd video] (Photo credit: NASA Goddard Photo and Video)March is a very long month in the classroom. It sits between February vacation and April vacation, and is the only month without a day off for a holiday. But often, we would have a snow day that relieved the heavy calendar. I was known in our school as the one who loved snow, loved cold weather, and loved surprise holidays. Most in the middle of winter yearned for warmer weather, sunny days, and heat. I hid from the heat, from the bright sunlight, and particularly from the humidity that accompanied those days. To each his own.

Since my retirement last June, I have not felt the need for an unexpected day off provided by Mother Nature. This winter has been very odd ... it is sixty-six degrees today, and I hear the sun is in a very active phase, with sunspots releasing particles that travel millions of miles per hour.

Boston's Museum of Science
I remember a school field trip to the Boston Museum of Science, during which we were treated to a video of sunspots and flares. I was struck with the similarity of sun flares and multiple sclerosis brain flares. We were told that the sun flares interrupted our satellites' transmissions, and could impact wireless communication systems here on earth. I knew that flares, or inflammations, in my brain could interrupt nerve messages, and could impact any part of my body's functioning, sending confused messages from brain to muscles.

Still resisting the diagnosis of MS but doing my best to participate in fund raising for research, I am signed on for two MS walks this spring, one at the end of March, and one early in May.

But between those walks, I will spend a week in Bethesda Maryland at the National Institute of Health, participating in a seven year study of people with a family history of Parkinson's Disease. Doctors conducting this study will monitor my blood, heart rate, brain activity, and reflex time. The visits to NIH happen once every eighteen months over the course of the study. I am, in that sense, a willing lab rat for their measurements and studies. The doctors are looking for early biomarkers that will help diagnoses of Parkinson's Disease to happen earlier in the progression of that disease. I still believe the symptoms I exhibit today are more like the early signs of PD than the relapsing/remitting symptoms of MS. If I am right, I am in the right place to benefit from their study, and to help them to complete their study, and benefit future generations' diagnosis and earlier treatment of PD. And I can feel good about being a part of that.

That's where my thoughts have roamed today. More reading and reviewing ahead!

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Wednesday, July 4, 2012

Reputable Medical Websites

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Thursday, May 10, 2012

Rambling Thoughts and Loose Threads

Wednesday, April 4, 2012

WEGO Health Prompt Day 4: Why I write about my health

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Thursday, March 8, 2012

Just a Few Thoughts Midweek

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