Which Would You Rather Have? Round Two- Progressive Disability versus Cancer

Image via Wikipedia

"If you're going through hell, keep going." ~Winston Churchill

Last week I posed the question- which would you rather have, progressive disability or sudden disability? That post spurred a lot of interest, so here is round two.

First, some introductions:

Progressive disability is what I have. My particular version is called Primary Progressive Multiple Sclerosis (PPMS). I was diagnosed 8 years ago with the slightest limp. Now I spend all day in a wheelchair. I know some advanced MS patients who long for the days when they could sit in a wheelchair for hours on end.

Cancer is an even more nebulous affliction than last week’s sudden disability was. The term “cancer” covers the spectrum from types that rarely kill, such as skin cancer, to types that often kill, such as lung cancer.

What are some of the similarities?

1. With both progressive disability and cancer there is a DAY, a singular moment in time, that is your day of diagnosis. For some patients, with either PPMS or cancer, there are hints or suspicions before diagnosis day. For other patients, it comes as a complete surprise (I was in the former group). Diagnosis renders your life a dichotomy- there is the life you lived before your diagnosis and the life you live after. It’s as if two different beings occupy your body, one at a time, handing off the baton on diagnosis day like track athletes in a relay race.
2. In each case, progressive disability and cancer, soon after diagnosis you are faced with treatment choices, none of which are very appealing or guarantee a positive outcome. In the case of PPMS the choices are either to treat the symptoms only, to try some unproven treatment to slow down the progression, or to do nothing. In the case of cancer the options are usually surgery, chemotherapy, radiation therapy, a combination of all three, or nothing at all.
3. With both progressive disability and cancer you disclose your new reality to family, friends, and often coworkers. Disclosure to those you hold most dear is a gut wrenching experience, where you do your best to put a positive spin on the situation to minimize the drama. They usually see right through you though.

What are some of the differences?

1. PPMS rarely kills- directly and suddenly anyway. In most cases it has the effect of shortening your lifespan by a number of years, but, with some exceptions, it is not in the strictest sense a killing disease. Cancer, on the other hand, always carries with it the cloud of potential death. Depending on the type of cancer, the prognosis ranges anywhere from “most people have a complete recovery from this” to “you need to get your affairs in order.” In summary, with progressive disability death is rarely part of the initial discussion. With cancer, death is usually part of the initial discussion.
2. Cancer is often cured. Cancer can be transient- visiting upon you for some part of your life, and if you survive, leaving you at some later point. People sometimes speak of their cancer in the past tense. PPMS is never cured. Once PPMS visits you, it doesn’t leave. People with PPMS are unable to refer to it in the past tense.
3. Similarly, people with PPMS don’t have the emotional highs and lows associated with cancer. We know we have it. Acceptance comes early. We never deal with the disappointment of hoping that just maybe we beat it, only to learn months or years later that in fact we didn’t. Cancer patients ride more of an emotional roller coaster than progressive disability patients do, at least in this regard.
4. Cancer is common. Everyone knows someone who has had cancer. Most of us have lost loved ones to cancer. Many among us harbor a palpable fear of developing cancer. On the other hand, many people don’t personally know anyone with a progressive disability like PPMS. I didn’t. It’s one of those conditions that few people waste any time dreading.

It is worth noting that unlike the sudden disability versus progressive disability discussion last week, cancer and PPMS are by no means mutually exclusive. One of the fears those of us with a relatively rare disorder like PPMS have is that, on top of our current struggles, we are as likely as anyone to contract some sort of cancer. Doesn’t that sound like a delightful combination?

So, which would you rather have- progressive disability or cancer? My response is a bit of a copout.  I would answer the question with another question.  What kind of cancer are we talking about?

I would choose cancer over PPMS if it was a type that has, oh, a 60% chance or better of survival. I would, however, choose PPMS over cancers with a 40% or higher mortality rate. But that’s just me. And, frankly, that’s just me today. Ask me tomorrow or next year, and I’m likely to give you a different number.

So, which would you rather have- progressive disability or cancer?

Disclaimer: Of course there is no competition here, and certainly no right answer. I’m writing these types of posts to raise awareness of the issues people like me face, based on my personal experiences, and the issues people with other conditions face, based on my limited understanding of their situations. Comments are encouraged. Disappointment, outrage and disgust are discouraged, but understandable.

My MS Story Chapter 31- Handcycling

Despite my illness, and the challenges it presents, I still find moments of supreme joy in life. Sometimes I share these with my lovely wife, my family, friends, or even people I stumble upon in the community. Other times, I’m completely by myself.

I’m a person who thrives on occasional solitude: sitting by the ocean and watching the surface of the water sparkle from the setting sun; positioned on an old woods road, rifle in hand, senses piqued, waiting for a whitetail deer to reveal himself; reclined by the warm fireplace in my home, reading a book that puts into words some truth that had previously eluded me.

My handcycle is one of the best purchases I've ever made.  It has allowed me to enjoy exercise year round (I set it up on a trainer in the winter months). While doing my body some small amount of good, I'm improving the welfare of my mind and soul immeasurably. I feel alive and even temporarily healthy when I propel myself down a road or a path, completely under my own power, alone in my own little world.

When I began using the handcycle I could manage as many as 18 miles on a single ride. If my body had been stable, instead of getting worse due to MS, I'm sure I could've improved to at least marathon distance. But, instead, each successive year I've had to shorten my rides. Last summer I could only manage a couple of miles a day. 

Transferring from the handcycle to my wheelchair at the end of a ride is a feat requiring flexibility, dexterity, and strength- three characteristics I no longer possess. On more than one occasion I’ve ended up flat on my back in the driveway. When that happened it took the combined strength of both Zach and Kim, a bit of my engineering knowledge, some scrap lumber from the shed, and a roll of duct tape to get me propped up into my wheelchair again.

It’s still worth it. With MS, you have to pick your fights. I’m going to fight to maintain my handcycling for as long as I can.

On some of my rides I’ve had the forethought to bring along a camera. Here is a link to some pictures I've taken from my handcycle. (Once you get to the photo album, just click on the first picture to enlarge it, then use the arrow keys above the picture to move through the album).

Come on, spring.  I'm ready.

Which Would You Rather Have? Round One- Progressive Disability versus Sudden Disability

(Photo credit: Wikipedia)

What I'm about to do is crass and uncouth. You may find it so disturbing that you will not only skip over this post but will stop reading my blog altogether. But it's a risk I have to take. I think about this stuff all the time, and I feel compelled to share my thoughts.

So which would you rather have- a progressive disability like Primary Progressive Multiple Sclerosis or a sudden disability like a spinal cord injury?

If you take a snapshot in time, depending on when you press the shutter release button, these two types of disability can appear to be very similar. For example, right now my situation resembles that of a person with an injury in the mid section of the spinal cord, a location where you lose most leg function but maintain a significant portion of your upper body function. If you took that picture two years ago I would have resembled a person with a slipped disk. If you take that picture a year from now, I'll probably resemble a person with a spinal cord injury much higher in his neck.

So here we go...

The advantages of having a progressive disease versus a sudden disability are, in no particular order:

1. If you have a progressive disability for, say, 40 years, then for some number of years you may have enjoyed relatively high function. I did for a few years. Whereas if you have a sudden disability for the same 40 years, you didn’t have any low disability years on the front end.
2. With a progressive disability you have plenty of time to mentally adjust to your situation. Typically at time of diagnosis disability is relatively mild.
3. With a progressive disability you have plenty of time to take tangible steps to adjust. You have time to put ramps in your house. You have time to shop around for mobility aids. You have time to make career changes in order to maintain employment.
4. Your world is not turned completely upside down in a period of seconds with a progressive disease. The trauma is not acute.

The advantages of having a sudden disability are, in no particular order:

1. Oftentimes, once you recover from the disabling event, your situation is somewhat stable. Although the disabling event was extremely unexpected and traumatic, you often get to a point where your level of disability is only slowly increasing or not increasing at all.
2. Because of item 1, when you employ an assistive device it can typically be used for a very long period of time. With a progressive disability, you have to stay ahead of the curve. You don't want to be buying assistive devices today that you should've bought yesterday and that will become inadequate tomorrow.
3. Once you recover from the trauma of the disabling event, both mentally and physically, the uncertainty in your life is much lower than the uncertainty in the life of a person with a progressive disability.

I realize that my characterization of these two conditions does not take into account all possibilities. For example, sometimes progressive conditions advance so rapidly that they look more like a sudden disability. Similarly, sometimes sudden disabilities continue to progress rather than stabilize, and take on some of the characteristics of a progressive disability. But that's not what I'm comparing here. I'm comparing the more classic presentations of the two types of disability.

So, those of you who are still reading, and don’t find this thought exercise completely abhorrent, what do you think? Would you rather know it is coming, and have time to make adjustments, or would you rather rip the Band-Aid off suddenly, so to speak, and perhaps be more stable going forward?

Pick your poison.

Next week…Progressive Disability versus Cancer.


Disclaimer: Of course there is no competition here, and certainly no right answer. I’m writing these types of posts to raise awareness of the issues people like me face, based on my personal experiences, and the issues people with other conditions face, based on my limited understanding of their situations. Comments are encouraged. Disappointment, outrage and disgust are discouraged, but understandable.