Musings of a Distractible Mind

That’s the name of a blog I just found, thanks to my friend Alice. Dr. Rob Lambert, a primary care physician and the author of Musings of a Distractible Mind, lends us his unique perspective.

In most doctor-patient relationships, there exists an invisible wall. Although we generally admire our physicians, we often find them aloof, unapproachable, and hurried. It turns out that doctors are actual human beings, and they have fears and frustrations of their own. I don’t think the inherent problems with our medical/industrial complex lie with either doctors or patients. Dr. Lambert agrees, and in his most recent post, entitled “Doctor Scum Bag”, he lays the blame where it belongs.

…In our health care system we have a business where both ends of the transaction are miserably unhappy. 99% of doctors hate the health care system, and the 1% who like it are the ones to avoid. Patient dissatisfaction is nearly as high, skewed downward by people who have grown so used to the terrible system we have that they now see “terrible” as “average.” Is there any other business where both consumer and those providing the product are so unhappy? The reason for this is that someone else is shaping the system: the payers. 

I must admit, I am not sure how this can be fixed in any way other than a total disruption of the current system and replacement with one that is centered on people, not problems, on communication not documentation. Until we have a system that doesn’t reward sickness, sickness will be the reward we reap. I left the system because I didn’t think there was any way to continue practicing good care in it. While my new practice is far from perfect (consider the source), at least I am rewarded for taking time with people. 

To have any chance at building better relationships between doctors and patients, we need to face the painful reality that our system corrupts even those with the best intentions. So, I guess that would make it a “scum-care” or “health-scum” system? The sooner we face our ugly reality, the more the chance of bringing the focus back to where it should be: caring for patients… 

(click here to read the entire post)

In another post entitled “A Letter to Patients with Chronic Disease”, he writes:

Dear Patients: 

You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality? 

I can’t imagine. 

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is. 

You scare doctors… 

(Click here to read the rest of this post)

Good stuff! I expect that I’m going to enjoy the musings of Dr. Lambert for a long time.

What Do I Do All Day? I Read Other People’s Blogs

Blog (detall) (Photo credit: Lady Madonna)

I read a lot of them. Some are professional and followed by thousands of people, such as www.postsecret.com or http://blog.nationalmssociety.org/. Some are personal, with only a few dedicated readers. But I treat them all the same, and here’s what I mean.

Readers shouldn’t burden themselves with remembering to look for new posts from their favorite bloggers. Updated blog posts should come to the reader. If I like a blogger for any number of reasons, I make sure that I am given the opportunity to read all of their posts. Based on the title of an individual post, or on my impression of the first few sentences, I may or may not actually read the entire post, but I always want to have that option handed to me on a silver platter.

This means that, in one way or another, I subscribe to my favorite blogs. At least two methods are available to make sure that I never miss a post.

Email Notification

Many blogs have an option where the reader can be notified of new posts through email. For example, if you want to receive an email version of each of my blog posts, then simply enter your email address near the top right-hand corner of my blog, in the box entitled “Receive Email Updates of New Posts”. Many, but not all blogs have a similar option.

If you only follow a few blogs, then this method may work fine for you. However, I subscribe to a large number of blogs, and I don’t want my inbox cluttered in this way. So I go with another option.

RSS Feeds

For most sites I subscribe via a blog reader. By far, the most popular one has been Google Reader, which I have used for years. Unfortunately, Google Reader is going away on July 1. But there are several free, replacement options. I’ve chosen to start using a program called Feedly.com. This service interfaces with my existing Google Reader account, and when Google Reader is gone forever, Feedly will seamlessly take over, or so I am told.

If you have more than a few blogs that you subscribe to, I highly recommend that you take the five minutes required to set up a service like Feedly. Of course there are more blog reader options than just this one. In the comments section of this post, please let me know what service you like to use.

Why Waste Invest Time Reading Blogs

Prior to Al Gore inventing the internet, we had very limited sources of information, and said information was largely pre-filtered for us, whether we liked it or not. It was difficult to find specific, enlightening, entertaining reading on the most interesting subjects. This is no longer the case.

Each of the blogs that I have chosen to follow speaks to me in some way. They may address topics that I am passionate about, or perhaps I simply connect with the author. In a few cases, the bloggers are personal friends. In most cases, however, I’ve never met them.

Another great feature of blogs is their interconnectivity. I try to have a few hyperlinks in each of my blog posts, and so do the authors of the blogs that I follow. In this way, readers can drill much deeper or broader into the topic if they so desire.

Currently, I subscribe to about 50 blogs. Some of them post multiple times per day. Others post only a few times a year. If a blog repeatedly publishes articles that don’t interest me, I remove it from my list. Many of my favorite blogs, however, pique my interest as little as 25% of the time. But I still keep my subscription because those articles appeal to me, and I don’t waste much time on the other 75%. I simply read the first sentence or two before I determine that I’m not interested.

I know that 50 blogs is a bit extreme, but I have a thirst for knowledge and a lot of free time on my hands. I encourage you to find at least a few blogs that you wish to follow, and set up a system where the posts come to you, so that you can sift through them at your leisure. After all, you need something to stare at on your cell phone while everyone else around the dinner table is staring at theirs.

This is the seventh in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.    

Here are my other posts in this series:
     
1. I Watch (mostly) Quality Television
2. I Digitize and Archive Family Photos and Videos
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
5. I Nap
6. I Blog

Disability Retirement- A Broken System

(Photo credit: Wikipedia)

I don’t even know if disability retirement is the correct term, but that’s how I usually describe the fact that I no longer work. Actually, today is the four-year anniversary of my last day at the office. I believe this milestone gives me the right and perhaps the obligation to stand on my soapbox and editorialize for a moment.

The creeping paralysis that I’ve endured over the past 12 years has taken its toll. But no loss was more acute than being considered fully employed one day and completely and permanently disabled the next. Of course, that is not how chronic diseases really behave, but it is how disability policy does. My transition out of the workplace should have been a slow, gentle process. Maybe I’ll write about that in more detail later, but it’s not the primary objective of this blog post.

Other than its somewhat arbitrary date, my transition into disability retirement couldn’t have gone better. I had several things in my favor. First, I worked for a company which offered long-term disability insurance as part of their benefits package. Therefore, I now receive more income than people who rely solely on Social Security disability checks.

Second, Kim has a secure job with a good salary. This means that we still have enough combined income to maintain a comfortable lifestyle and enjoy a certain amount of financial security.

Third, Kim’s medical insurance policy covered me for the 2½ year waiting period between the time I stopped working and the time I qualified for Medicare. That’s right – when you become so sick that you can no longer work, and you subsequently lose your medical insurance which was provided by your employer, Medicare waits 2½ years before stepping in. That makes a lot of sense.

Fourth, the medical benefits I receive through Kim’s insurance will continue to supplement my Medicare policy until she retires. As anyone over 65 years old knows, Medicare falls short of complete coverage in many respects, not the least of which is prescription drug coverage.

I am, however, the exception to the rule. Most people who take disability retirement because of multiple sclerosis or similar chronic conditions are not as fortunate. Many such individuals find themselves without affordable medical coverage for the first 2½ years and without adequate income for the rest of their lives. And these hardships occur when things have never been worse, medically or financially. Their cost of living has skyrocketed because this is such an expensive disease to live with. It’s not only the costs of doctors, hospitals, and medicines. There are also the expenses associated with mobility devices such as canes, scooters, wheelchairs, and vans, not to mention home health care workers, roll-in showers, ramps, and grab bars, if not an entirely new house.

For a well written, first-hand account of what I describe above, please read my friend Muff’s blog post here.

No other developed nation treats their most disadvantaged citizens so callously. It’s no way for people to live in the 21^st century, in the world’s richest country. We are better than this.

I believe that most people aren’t even aware of how weak our social safety net is for people with chronic diseases. I certainly wasn’t until I became well-versed in these issues out of necessity about four years ago.

In the current political environment, government austerity measures seem inevitable. We are only debating the severity of the cuts, and the new levels of acceptable misery. I would argue, however, that the question regarding benefits for disabled individuals shouldn’t be, “How much less can we get away with doing?” The question should be, “How can we do more?”

Consider These Issues…

Lemmings (Photo credit: KAZVorpal)

…because I can’t decide on just one topic this week.

Quote of the Week

“There's a whiff of the lynch mob or the lemming migration about any overlarge concentration of like-thinking individuals, no matter how virtuous their cause.”  - P. J. O'Rourke

Kiva

Microloans are a wonderful way to add a little intimacy to your charitable giving. I’ve chosen a platform called Kiva.org where I can learn about all the loan candidates and choose an individual whose business plan or cause appeals to me. I put a certain amount of money in a fund with lots of other folks, and each month the borrower makes a payment to me and the other lenders. The borrowers do pay interest, but that doesn’t go to me. That goes toward maintaining the program. My plan is that once my initial loan is paid back, in approximately a year, I’ll keep my money in the bank and make another loan, and so on, and so on. Check it out.

The Reliability of Medical Research

I’ve always considered the gold standard for medical research to be studies that are double-blinded and placebo-controlled. This means that there is a group of patients receiving the treatment and there is a group of patients receiving a placebo, and neither the patients nor the doctors involved with the patients know who is who. Only in this way can bias be eliminated from the results.

However, this article shoots holes in that standard as well, and I have to agree. As long as there are financial or career advancement incentives to produce certain results, usually positive results, bias can find its way into even the most rigorously designed studies. Damn.

Be Suspicious of Stories

As human beings we love to hear a story. We want the world to make sense, and stories often leave us with that comforting impression. In our stories however, we impose order and meaning where often there is none, and this can be misleading.

Of course, you could argue that this Ted talk is itself a story, but that just makes my head hurt. Please watch this and let me know what you think.

15 Things That You Should Give up to Be Happy

I’m not 100% bought into the whole Zen philosophy thing, but I find much of it to be very practical advice. A lot of this thinking runs counter to the Type A personalities that serve as models for success in the United States. This article suggests 15 personal characteristics that we would be better off without. I agree most strongly with items 3, 6, 9, and 15.

The Most Astounding Fact about the Universe

Neil deGrasse Tyson is a brilliant astrophysicist. Recently, he was asked the question, “What is the most astounding fact that you can tell us about the universe?” I very much like his answer – which he gives in this three minute video.

De-extinction

As is so often the case, science fiction may have had the right idea, in the form of the movie Jurassic Park. But this video doesn’t sound nearly as scary.

A Farewell Mother’s Day Present

The photo to the left is from Mother's Day, 1972. I'm the pink shirt guy.

My mother passed away in the autumn of 2008, so it’s been five years since our last Mother’s Day together. I’d like to share with you the video gift I gave her that year. It’s hard to know what to get an elderly, quadriplegic woman who is going blind from macular degeneration, but she seemed to enjoy what I threw together.

To learn just a little bit about how amazing my mother was, click here.

Re-watching the video below reminds me how fond I was of my old neighborhood, how hand-cycling used to make me feel so alive, and most of all, how much I miss my mother.

Click here for the YouTube version of this video.

Intrathecal Methotrexate – Update

On Friday I received my eighth intrathecal methotrexate treatment. The procedure was fairly routine. I had no post-lumbar puncture headache. In fact, I’ve gained so much confidence in the 25gauge needle that I have altered my post-treatment procedures. The oncologist requires that I lie flat on my back in his office for 30 minutes after the infusion. In his opinion, that makes the headache risk negligible. But, because I hate the headache so much, until Friday’s procedure I was also coming home and lying flat on my back until the next morning. Now, for the first time, I came home from the late afternoon procedure and stayed in my wheelchair until my normal bedtime.

So I’m settling into a routine with this procedure. It’s no big deal anymore. Every 8 to 10 weeks I get the infusion. For the remainder of that day I stay home and take it easy. My disease does not progress between infusions. I go back 8 to 10 weeks later and repeat the process.

Boring.

Of course, if intrathecal methotrexate stops working tomorrow I’ll be sad. This reprieve that I’ve been fortunate enough to enjoy for the last 14 months has been wonderful. But I appreciate, as with life itself, that my lack of disease progression is fragile and possibly fleeting, and must never be taken for granted.


Note: to read all of my intrathecal methotrexate posts, click here.

The Importance of Being Aimless

It’s not as if I’m a prisoner all winter. Even in the cold months I manage to leave the house often, either in my minivan or by negotiating the neighborhood snowbanks in my wheelchair. But travel becomes purely utilitarian. It’s about getting from point A to point B in the least painful way.

Today, I set out with the intention of picking up a prescription at the pharmacy. My wheelchair was set in high gear so as to minimize time spent away from the house, and my mind was singularly focused on the task at hand. But only seconds before being engulfed by the sliding glass doors of the supermarket, I had an epiphany.

For the first time since, I don’t know, November, it was pleasant enough that I could stay outside simply for the sake of staying outside. I spontaneously morphed into summer mode, where it’s perfectly acceptable and generally advisable to take the scenic route. So I did just that, and it was cathartic. (I hope that my spontaneous metamorphosis did not frighten any bystanders.)

For the next six months or so, I shall endeavor to be aimless whenever possible.

Here are some pictures from today’s wandering:

One of several walking/biking paths near my house.


My view of Maine’s largest city, Portland, as seen from South Portland, near my home. Note how the buds are just now emerging on the trees.


And for the first time this year Kim drove her Vespa to work. I didn’t get a picture this morning, but here’s one from last year.

Book Recommendation – “The BS Of My MS” by Lauri Wolf

A couple of weeks ago I received an email from Lauri Wolf, whom I had never corresponded with before. She indicated that she had been reading my blog, and proceeded to quote me from a February post where I lamented the lack of attention given to PPMS in the literature.

"…there’s very little in print that gives more than a passing mention to my particular type of MS…Going forward, if you find any new and interesting books on MS, please let me know."

In her email, Lauri indicated that indeed she did know of a new and interesting book on MS, because she had just published one on April 1. In her book she chronicles her experiences with PPMS, the particular variety of MS that she and I share. I immediately went to Amazon and purchased the Kindle version. When I finished reading the book I wrote this review at Amazon.com:

“Lauri Wolf has written the MS book that I've been waiting to read.

Like me, she has primary progressive multiple sclerosis (PPMS), a particularly disabling form of the disease. Unlike the more common form of MS, relapsing remitting multiple sclerosis, PPMS has seen no medical advancements. Ms. Wolf spent her career as a pharmacist, but is no longer able to work in that capacity. I believe she has found her true calling as a writer.

‘The BS of My MS’ chronicles her life challenges since being diagnosed some 14 years ago. Not only has she battled a creeping paralysis that has rendered her a quadriplegic, but she has dealt with other medical conditions, parenting challenges, marital struggles, and depression. But through it all she has emerged an emotionally and intellectually stronger person. Her secret? It's all about attitude. For example:

‘Beyond intelligence and common sense, I think the most important survival trait is a good sense of humor. I don't take myself too seriously and can laugh at myself. I allow myself some leeway, a margin of error, and make sure it's okay to fumble. If I didn't, I would be certain to disappoint myself often.’

Her writing is straightforward, brutally honest, and unembellished. It's the style of writing that draws you into the narrative and ushers you through the pages as if by absorption rather than through the conscious act of reading. I recommend this book especially for those dealing with chronic diseases, but also for anyone interested in reading about the triumph of the human spirit. I've read a lot of MS books over the years, but this one is now at the top of my list.”

And I meant every word of it. To visit the book website click here. To order the book at Amazon click here.

Thanks, Lauri, for sharing your story with us. I know you’re already working on book number two, and I look forward to its release.

What Do I Do All Day? I Blog

Obviously.

Why do I do it? It feels right. For example:

• I am productive, creative, and sometimes even influential when I blog.
• I become engaged in life, as opposed to dispassionate about life.
• I feel that I am sometimes helping people when I do it, and this makes me all warm inside.
• Against my better judgment, and despite the knowledge that I should not base my happiness on the approval of others, I relish the positive feedback I receive.
• I am networking and meeting people when I do it, and this satisfies my modest need for human contact, much of which had been lost when I stopped working.
• Since I’m an introvert, and rarely initiate communications with others, this is a way for me to update friends and loved ones about what is going on in my life and/or in my head. This way, I need not take any drastic action like picking up the phone and calling someone. Oftentimes even Kim learns what I’m thinking through my posts.
• I’m able to learn useful and interesting things from readers’ comments and emails.
• I’ve become introspective through the process of collecting, organizing, and acknowledging my thoughts and feelings before I write them down, as opposed to running on emotional autopilot (which I am prone to do at times). I’m not certain, however, that this is always a good thing. Ignorance and denial have a certain appeal in the world of the chronically ill.

My Process

I sit by the ocean and wait for inspiration to strike. No, not really…

I have a Microsoft Word file where I keep all of my future posts, half written posts, poorly written posts, and posts I may never post. I try to publish at least once per week. To meet this goal I begin formulating my post on the weekend or early in the week, whenever an idea emerges from the recesses of my brain, or maybe from something I read, heard, or watched.

I go to my Microsoft Word file, and I start writing, which for me is actually dictating using a program called Dragon Naturally Speaking. My first pass is sometimes just a collection of random ideas, or it may be a lengthy narrative. But either way, it’s utterly unreadable and suitable for my eyes only. Then, over a period of a few days I keep going back to the piece several times a day and make another pass at it, each time improving it a little more. If the piece is long, I try to cut it to below 1000 words, or under 800 words if I can. Interestingly, this paring process usually improves the quality of the piece at the same time it reduces the quantity of words. I try to take the perspective of the reader. Am I being clear and unambiguous? Will the reader give a damn about what I am writing? Can I be more succinct?

I usually post in the evening. Earlier in that same day I put the finishing touches on my writing. Sometime after dinner, when I think I have it ready for publishing I email it to Kim, who is likely sitting on the couch about 5 feet away, for review and proofreading. It’s funny, even though I may have read over a piece twenty times, Kim can find a glaring grammatical error that I missed in each of those passes. It’s a classic forest and trees situation.

Once Kim has helped me find any errors, awkward sentences, or outright lies, I make the final edits in Microsoft Word. I then add graphics and hyperlinks, and generally jump through a bunch of hoops to get the product from Microsoft Word to my blog page.

When I’m ready, I click the Publish button, and the post goes live.

I have a couple of programs that I use to monitor traffic at my website. Don’t worry; I can’t see your name, IP address, or what you are wearing when you visit my blog. But I can see where you are visiting me from, and how you got to my website (Google search, hyperlink from another website, Facebook, etc). I particularly enjoy the comments and the emails that I receive from you. Keep them coming. Don’t be shy.

Thanks for being a reader.

(726 words)


This is the sixth in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.

Here are my other posts in this series:

1. I Watch (mostly) Quality Television
2. I Digitize and Archive Family Photos and Videos
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
5. I Nap
7. I Read Other People's Blogs

Thought control of robotic arms using the BrainGate system...

Life with paralysis is going to be better in the not so distant future. Thanks Stu for sharing this story. Click below.

** Stu's Views & M.S. News **: Thought control of robotic arms using the BrainGat...: