Happiness has a way of multiplying every bit as fast as realizing things can go wrong, but it takes training our minds to realize it. One of my take aways from a collaboration class a couple of weeks ago was to realize the human predisposition is to remember the tragedies and mistakes more often and more vividly than our successes. Heck, I remember my failures and heart aches far more vividly than my first kiss. It is not as if we have no successes. We just take them for granted to the point where we have become hard wired to do so. It is only with training our minds that we can overcome the inclinations to focus on the negative.
Something as simple as walking was once described to me by a psychologist as “taking a series of control falls towards our destination.” The moment we start thinking of walking as falling, it no longer seems so easy, and for roughly three quarters of people with MS, it is not. Have I mentioned how lucky I am?
Still, we can see progress and success if we look for it. How many of us think about riding a bike as a huge success? Well, for this week it is the biggest success in our house. A road roughly a mile and a half without training wheels. If this seems commonplace, consider two weeks ago one could have eaten a meal off one of her training wheels because it never hit the ground. She always leaned to one side. Then consider riding a bike without training wheels is one the first things A has succeeded at doing before her peers. Who wants to be the last to learn every skill the rest of us take for granted. Of course, A really wants to show friend how she can ride now and help teach her to do it too.
(For MS stuff continue to the next page)
From the diagnosis:
To the everyday living:
Have I mentioned how lucky I am? I ran across this site last week, and according to their study, roughly three quarters of MS patients have trouble walking. Now that I am back to running at lunch, I am trying to figure out how and when to try to run another half marathon or even attempt to run a full marathon. Running a full marathon would be another accomplishment to cross off my bucket list made 8 years ago while waiting to hear whether the results of my MRI indicated MS or cancer (probably testicular according to the initial report).
On the scary side, 88.8% of MS patients have health insurance. Still, even with this, 47.4% of MS patients have used manufacturer-sponsored copay assistance program. This speaks volumes to me about our healthcare industry where even with insurance; the patients still cannot afford the medications. I know I would probably not be able to afford Tysabri without the assistance, and I have good medical insurance (probably top 10% of health insurances in the U.S.). I have thought for a long time the extremes should not dictate how a problem is perceived, but doesn’t this mean the normal practice to maximize profit is to overcharge up to the point where most cannot afford to buy. Then negotiate down to a price where the patient is thankful to be able to buy the product at a price to which nobody would have otherwise agreed to pay. When one company with one product does this, then everybody simply goes with an alternative. The question is how did we get into a situation where most of the treatments for a disease affecting hundreds of thousands of Americans are stuck in this Economic model? Of course the bigger questions are “is there a way out of it?” and “how do we take it?” The bigger questions are for both individual patients and society as a whole.
As I start thinking about these questions I realize I would much rather be riding a bike or going for a run. Anyone remember “V for Victory?”
