[Media Resources] Greater Delaware Valley MS podcasts

"Why Everyone Needs a Power of Attorney"
is the most recent program to be
broadcast and archived by the
Greater Delaware Valley Chapter
of the National Multiple Sclerosis Society.

I love to listen to podcasts, especially when they relate to some of my favorite themes or topics, like cooking or creative writing. The podcast/talk radio community was actually the first arena of media I pursued when I was given my MS diagnosis, and it has not been a disappointing journey.

One of the best podcast series I have found for learning more about MS comes from the Greater Delaware Valley chapter of the National Multiple Sclerosis Society. 

These are regular teleconferences recorded live, then archived to be enjoyed by anyone after the event is over. They usually feature one or more specialists in MS or other related fields and they cover, in depth, a particular category, such as "Clinical Trials and Progressive MS" or "Social Security Disability Application Secrets" or "Maintaining Cognitive and Emotional Health While Unemployed."

While their programs serve populations in Pennsylvania and New Jersey, their podcasts can be accessed by anyone, anytime, and for the most part, the content is up to date and relevant.

I have found some really good discussion here that's accessible to anybody who has MS or who wants to learn more about it, and the programs themselves are geared toward a general audience, so there isn't a lot of medical-ese to be confused by. Generally I have found the speakers they use are lively and interesting and personally motivated to do the work they do, so that's a plus.

You can download these episodes for free through iTunes or other podcast hosting services. They usually include a section at the end which is for the live participants to grade the quality of the presentation, so since I am always listening NOT live, three thousand miles away, I know to skip this portion of the end of the presentation.

National MS Awareness Month || What to look for in a medical team

When you arrive at a diagnosis for MS, it doesn't begin and end with one person. For my particular case, I saw my excellent primary care physician and nurse, multiple radiologists, an ophthalmologist, multiple phlebotomists, a neurologist specializing in MS, an orthopedist, a fluoroscopist and an electroneurodiagnostic technologist.

Obviously, MS is a whole-body kind of condition, and it requires lots of diagnostic procedures from lots of specialists just to arrive at a conclusive differential diagnosis.

To manage and treat MS require much the same kind of team.

My current team consists of my excellent primary care physician and nurse, my MS neurologist, my orthopedist and the phlebotomists, lab techs and radiologists who will conduct my regular MRIs and bloodwork to identify any progression of my disease, my chiropractor and my massage therapist.

There are others who I am thinking about adding to my team, including an occupational therapist to help me with organizational skills so I can keep on task with the busy-ness of my life as a working mom, a speech pathologist for all those times I trip over my words or only hear them in my head but not coming out of my mouth, and a neuropsychologist, to measure my cognitive function/dysfunction baseline, as this seems to be where my worst symptoms reside. Though I hope never to have to claim disability, this baseline diagnostic test is one of the things a claim would require, should I find it necessary to stop working due to cognitive dysfunction. (Ugh. I don't even want to think about it. But the planner in me says, yep, better do it now. It's the only objective way to measure cognitive downturns.)

There are still other kinds of specialists that could be very handy to one's MS team depending upon the kinds of symptoms they experience, such as the following:

Naturopath: A naturopath is a licensed health-care practitioner who borrows from both traditional healing methods, holistic medicine and modern medicine to treat patients. Their focus is on helping the body to help itself. They treat all medical conditions, can perform minor surgeries and can prescribe pharmaceuticals, though naturopaths generally focus on natural healing agents. For those who wish to proceed on a more natural path, a naturopath is a great idea.

Nurse Practitioner: If you have to manage regular injections, skilled nurse practitioners can really be your best ally. They can teach you how to give yourself injections, explain the whys and wherefores of the process and give you tips for alleviating discomfort and finding ways to care for the parts of your body where you routinely have injection sites. Some of the best medical professionals out there are nurse practitioners as they can be some of the best healthcare cheerleaders around.

Nutritionist: It's never a bad idea to look at diet as a means for improving quality of life. Eating better and avoiding foods that trigger problems in your body can lend themselves to increased energy, less depression and lighter or fewer exacerbations. Good nutrition itself does not cure or treat MS, but it can certainly make you feel better!

Physiatrist: This doctor specializes in nerve, bone and muscle disorders and rehabilitation and treats a wide range of problems that relate to major body systems.

Physical Therapist: This allied medical specialist helps to treat pain and to help patients to restore or improve mobility as well as to prevent eventual disability. A PT is probably better than the physical trainer at the gym because they are more likely to appreciate, respond to and customize their treatments with sensitivity to your disease condition. The concept of "powering through" MS might be lost on gym trainers who may not have training for special populations.

Psychologist: No question about it, MS can cause lots of psychological issues, including depression that is both a result of dealing with the condition and as an affective disorder all its own. When one's brain and body chemistry gets messed up, anxiety and depression are likely outcomes. A psychologist can also help an MSer work with family and loved ones to develop a healthy support system.

Researcher: If you work with an MS neurologist who has ties to clinical research studies, you may find yourself buddying up with a research team of lab technologists who work hard on the behalf of all MSers to find a cure. I have a friend who does this for a living and she's marvelous!

Social Worker: This could be an MSers number one advocate when they struggle to maintain working life and have a difficult time finding support among family and friends. These challenges happen more often than you think. A social worker can help find most any service an MSer needs to live as full and active a life as they are able.

I'm sure there are even more specialists out there who can help make up an MSer's support team. If you or a loved one has encountered a new diagnosis recently, it's worth looking into these helpers to maximize their expertise in ways that could really help you feel better and head off disease progression before it gets too serious.

Here's a great discussion about building your healthcare team at the National Multiple Sclerosis Society website.

Pissed off in quarantine

So I pick up my MIL from the nursing home and take her to the hair salon. This is 10 days ago. Then a few days later she (without telling anybody) has diarrhea. Like many elderly people (and yes, I am qualified to say this!), she puts off doing anything about it and thinks it will just go away, she doesn't want to be a bother to anyone. A few days later she is in the hospital with dehydration. Then, a few days later, I'm hit by a repeat visit with my arch nemesis, norovirus.

Norovirus is most commonly known as the driving pestilence among cruise ships. What people don't seem to know is that it is also practically epidemic in nursing homes. What people also don't know is that for someone with a compromised immune system, it takes the body nearly two weeks to shed norovirus from their bowel. Whee. For everyone else, it's two to three days.

Now I have norovirus and I'm holed up in my home, missing at least 3 days of work (more than $1000, probably more, will be gone from my paycheck, just like that, as I work per diem) and I'm frickin' miserable.

Most people think of me as the positive attitude MSer, but when I get sick because of something like norovirus, I get exceedingly cranky. Why wouldn't I be? I am already taking DMDs which give me gastrointestinal distress to some degree. Now I have heaped on top of that a ridiculously spastic colon. Plus the cilia lining my intestine are burning up. Plus my digestive system from the top of my stomach to my rectum aches like a sumbitch (like one big tender bruise). Plus I have no appetite. Plus I have a sour metallic taste in my mouth. And you should hear the way liquids rush through my pipes, like a noisy water slide, ending with me burping up something that smells like rotten eggs. What this all means is that I will be spending the next couple of days chasing bouts of explosive diarrhea with Gatorade and decaffeinated tea.

Oh sure, I could be glib and say that was the easiest 5-10 pounds I ever lost overnight, but that doesn't make me feel any better about the realities.

How does norovirus happen in nursing homes? Elderly people have incontinence issues and they don't necessarily wash their hands. Food service workers in nursing homes come to work with viruses they may or may not even know they have, and they don't necessarily wash their hands. Healthcare workers come to work with viruses they may or may not even know they have, and they don't necessarily wash their hands.

Why don't all you people frickin' wash your hands???????? Ack. This is why I'm pissed off. Because if you all just washed your frickin' hands and stayed out of the public sphere while you were sick, I wouldn't be bedridden right now.

I must say, I am a compulsive handwasher. My job in the medical field requires it of me, as does having MS. I can't afford to contract diseases like norovirus. My wallet can't and my brain can't. As soon as I got home from my trip Sunday night, with a burgeoning case of norovirus already making its presence known by all the side trips made to roadside gas station johns, what did I do? I washed my hands and put on gloves. My whole family has already suffered through this misery once, I don't want to repeat that particular example of living hell.

Unfortunately, compulsive handwashing is not the reality for many healthcare workers, which is why it's a repetitive message posted in clinic and hospital washrooms, from November through April especially: WASH YOUR HANDS! But people forget to think, because they don't feel poorly. Or they imagine they aren't at risk for infecting anybody else.

Well, guess what?

You can carry norovirus and never have symptoms. Lurve-ly.

Now my parasthesias are back after months of being gone. Not good. That means my brain is having a problem fighting off attacks from viral proteins even as I write this. More work for my DMDs to do to get me back on what I thought was a forward movement toward some healing.

I could get into a whole thing about health literacy right now, how only 12% of our entire population (including ALMOST ALL OF you smart educated people) don't know sh&t about your own healthcare world, but I'll save that for when I have a more positive frame of mind.

I could also get into a discussion about the latest trend, in which some people gleefully point out that we don't need doctors, we just need water, exercise, fruits and vegetables and fresh air. Really? Really? So this MS I have, and now its concurrent noroviral companion, which is right now shredding the myelin sheathing off of my axons and eating holes into my gray and white matter... these are all my fault because I haven't just treated myself with water, exercise, fruits and vegetables and fresh air? Really?

No, I'm sick right now because a/Who Knows Why? MS has environmental and genetic components, but that is all they can really say about its cause, and b/I visited the nursing home of my MIL which, unbeknownst to me, is crawling with norovirus.

NOT MY FAULT.

That's all I can write for now... I'm too pissed off.