Pain Management

When you have Duchenne muscular dystrophy, chronic pain simply comes with the territory. Degeneration of muscle can lead to a gradual increase in pain throughout the body. Sure, you could try prescription narcotics to help alleviate most or all of the pain. But the side effects are numerous, and overuse of these drugs can lead to dependency or loss of effectiveness of the drug on your system. I have chronic back and hip pain, so I opted against the reliance on pain killers and went to a Pain Management specialist four years ago. At that time, I was diagnosed with myofascial pain syndrome (chronic pain involving tissue that surrounds muscle). He treated me with something called a trigger point injection used to treat extremely painful areas of muscle. A trigger point is a knot, a severe tightness of muscle. To help loosen up this knot, the doctor injected my back with a local anesthetic followed by an anti-inflammatory medication into the specific areas of pain. This procedure relieved my back pain almost immediately and I have not had that pain in four years…that is, until recently. Today I made a repeat visit to the very same Pain Management clinic for the very same treatment to the very same area of my lower back. One hour and four injections later, I was left with high hopes for the very same success. I should notice a significant decrease in my pain level over the next two weeks. Wish me luck!

Christmas Stuff

You will all be happy to know that on Monday I survived the annual holiday horror of sending out a gift from the post office! After struggling to find parking, my nurse and I raced to the door only to be greeted by a frenzied mob of mailers armed with numerous assorted parcels. As I followed the seemingly endless line, I passed by a very animated local television news reporter who was covering this event. I ask you, what is so newsworthy about a cluttered post office around Christmastime??? Shouldn’t these people be covering other more meaningful things such as the crowded parking lot at the mall or Best Buy? C’mon! Anyway, after a thirty-minute wait, we finally made it to the automated shipping kiosk where we weighed and shipped a package. This menu-driven, touch screen device was so confusing that a postal employee had to stand there to direct each customer through to completion. We finished, and I had to navigate my wheelchair back through the horde to get to the outside. Free at last, free at last!

This completed my holiday chores for the season. Cards have been sent and gifts have been purchased. Now I can sit back and reflect over the true meaning of Christmas – a special child being born to a special mother for a special purpose. Despite the many distractions found at this time of year, we should always strive to maintain the focus. This is my wish for all of you.

Merry Christmas, and peace to you all!

Cheers,

Scott

Big Decision Update

I received my Christmas gift a few weeks early – an alternative answer to my defibrillation dilemma. After some tricky maneuvering, a package arrived at my door containing my rather unusual gift – an automated external defibrillator or AED. Have your ever seen one of those television medical dramas in which a patient’s heart stops and some doctor holds two paddles up to the patient’s chest, shouts “Clear!”, and sends a sharp electrical charge to restart the heart? Well, an AED is a small portable version of that machine with two adhesive leads that function as paddles and which operates on a special battery. The AED also provides voice prompts that talk you through the steps of use as you use it. This is a non-invasive, lightweight, handy little device that could save my life in an emergency.

A few weeks ago, I went to see the new James Bond flick, Casino Royale. In the film, Bond just so happens to keep a small AED in the glove compartment of his Aston Martin sports car in case of emergency. After all, every spy should have one. And if it’s good enough for the great James Bond, it is certainly good enough for me.

A Big Decision

I am 40 years old with Duchenne muscular dystrophy. Considering that many guys with my disease do not survive past their twenties, I really can’t complain. Now beginning my fourth decade, somewhere I never imagined to reach, I find myself in rarely chartered territory. But I will adapt, as always.

At 40 with Duchenne muscular dystrophy, it is now crunch time, and I know I will have some big decisions to make in the coming years. I was faced with one recently. My disease has done significant damage to my heart. The old ticker is not pumping strongly, and my cardiologist has concerns that it can go into a dangerous rhythm, or stop beating at any time. He suggested that I have surgery to implant a device into my chest that could ultimately save my life. The device, known as a defibrillator, would attach to my heart and zap it with an electrical charge if it detects a dangerously erratic pulse or stoppage. The device would thrust a high electrical voltage into my heart to either restore my pulse to a more stable rhythm or completely jumpstart the heart bringing me back to life.

In theory, having the defibrillator would be of significant benefit to me. However the surgery and/or recovery period could kill me because my current health condition deems me a high risk. So my choices boiled down to risking my neck by facing potentially deadly complications during and/or following surgery, or not tampering with my body and maintaining a status quo. My decision was rather simple: do not rock the boat, forget surgery, forget the internal defibrillator, and take my chances.

I leave you with this question. Is it worth risking your life to possibly preserve your life? The answer is a tough one, very subjective. For me, at this stage of my life, the answer is no.