Tuesday, February 2, 2010

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

Symbol of Confusion
(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.
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  1. I had the opportunity recently to compare my situation with those of spinal cord injured people when I attended Trish Downing's Camp Discovery for women in wheelchairs (14 of them, 1 of me).

    Each 'group' (if 1 can be a group) was envious of the other group. They were envious of me because:
    - I can (for the moment) stand,
    - I don't have to spend hours a day doing a bowel program,
    - I have sensation

    I was envious of them because:
    - they know where they are, their disability doesn't vary day to day,
    - while they will get worse over time due to the effects of aging on SCI I will probably get worse/worse over time because I have a progressive disease,
    - they don't have to lie down for two days to make up for one day of full on activity,
    - they're not looking forward to potential cognitive and visual impairments,
    - and lastly (yes, you can laugh at this) because most of them catheterize themselves and therefore do not have to find an able-bodied person to bring them their wheelchair so that they can pee while doing a long distance hand cycle ride

  2. Great question. It is a hard one to answer due to the variables in each situation, but my first thought is progressive is worse. With progressive disease a little more function is taken away each year. It's a continual mental and physical adjustment. Questions of 'what is next' hang over your head all the time. It is harder to maintain hope and a positive outlook. As awful as a sudden disability is, the affected person would have better knowledge of what to expect in their future. You summed it up well with the points you made.

  3. Well, it may be a difficult question, but I vote for the sudden impairment as being the worse. As you noted, we have time to prepare, while they can only adjust. Both can be depressing, but for different reasons.
    I often ponder a similar comparison/contrast. I may write about it in my blog -- which is worse, being born disabled or becoming disabled later in life?


  4. Well, being as I have experienced both with MS, I will go with Progressive Disease being tougher to deal with, only being made easier because I have already gone through the major life adjustments that sudden disability handed me. Using a wheelchair within three weeks of diagnosis was a breeze, actually, because it was so much better than struggling to walk with a pair of crutches.

    That I had 16 pretty good years (relapses with good remissions)of invisible disability before things started going South on me again, has made this progression tougher, but also not too horrible, to handle. You see, I have learned so much over the years I am not as scared as I was in the beginning. I am better equipped emotionally to deal with the grief over losses. But now, I deal with that and get on with it. Really, what other choice is there?

    So, how is that for a contradictory answer?

  5. Katja,

    What an interesting experience that must've been to spend time with those 14 ladies. I draw much of my knowledge about sudden disability from my mother, who was in a wheelchair from the time I was 5 until she passed away when I was 45. I know what they mean about catheterization. One of my biggest obstacles as I move about is not so much general mobility, but rather "is the bathroom accessible?" Oncce I get to the point where I need a catheter, bathroom accessibility will not be so much of an issue.


    It's impossible to be unbiased, since I suffer from progressive disability myself, but I think you may be right. Not knowing what function I am going to lose next, or when, definitely wears on me.


    For me, a fascinating question about being born disabled or being disabled later in life has to do with vision disabilities. People who become blind later in life at least have an idea of what vision is. How do you explain the color red to somebody who has been blind since birth? If you have to be blind, is it preferable to not know what you are missing?


    I think your contradictory response reinforces the concept that this is a question with no right answer. Each type of disability has its own advantages and disadvantages over the other, and each person's interpretation of these is different. I do remember struggling to walk with crutches, and having a small part of me wish that I would just hurry up and get in a wheelchair. I should have been more careful what I wished for.

  6. In the case of a spinal cord injury it would really depend on how high up the injury was. I have PPMS so I've thought about these things. It's just too bad if anyone takes offense at this type of discussion.

    Right now I think a sudden disbility would be worse. Ask me in a year & I might think differently. I often think about things like trying to appreciate that I can still get in & out of bed, to the bathroom etc. by myself. It takes me a long time to get around but I can still do it a bit. If I had no use of my lower body those things would already be impossible.

    I also think that it would be much worse to be born disabled rather than becoming disabled later in life. In my career I worked with many young children with both physical & mental disabilities. I think they (& their parents) would MUCH rather have my situation if such a choice were possible. After all, I was able to run & play as a child, date, marry, have children & a career. Some children have to watch from the sidelines at recess, others struggle so very hard just to understand math, reading or simple verbal instructions. Some children are even worse off than that. I had many happy, healthy years before the monster struck.

    I certainly get depressed as well as jealous of healthy people & hopping mad at people who abuse their bodies & still get around just fine. However, I think working with so many children over the years as well as knowing people who died at a young age from cancer helps me to keep things in perspective.

  7. "Pick your poison," indeed. The alternatives you put for comparison are, in my book, equally devastating. I think it must then come down to one's appetite for adjustment to change, and that probably is as individual as the illness itself. I have had some long stretches of good years and now not so good. Even in the good years, though, the uncertainty lay over me like a heavy blanket. Despite that, or perhaps because of it, I made a point of living life to the max so I accumulated more quickly experiences normal people might not achieve in a lifetime. So is that on the plus side of the ledger for gradual disability? I don't know. It may just mean that I'm a pretty resourceful person. I have been able to find gold amid the dross but I am not sure that had anything to do with the severity of progression of the illness at any given point in time. I might have done the same thing, albeit differently, had the illness progression been more aggressive.

    This is a topic worth talking about. I'm glad you brought it up.


  8. Great post, ideas to ponder, but to seriously try to conclude---nah, each his own. I prefer what I have and I think I would say that whatever I had; to me it is all about overall health, MS is a disease VS spinal cord injuries or being born deaf/blind. I think all physical conditions that put us in the minority, that make life harder, are bad luck and we just have to go forward the best we can to find happiness.

  9. Anonymous,

    I hear you. My legs don't allow me to take a single step, but there still is enough residual strength left that they help me transfer from my wheelchair to the driver's seat of my van, to bed, and to the toilet. But I don't know how much longer that will last. I also agree that it is better to have not been disabled for the first half of my life, as opposed to being born disabled. Better to have loved and lost...


    It sounds like you have a great perspective on life. Since I become disabled, well actually only in the last year or so, I've tried to adopt a more Zen perspective on life. I don't lament the past. I try not to worry too much about the future. I try to live in the present as much as possible.


    Indeed- "we just have to go forward the best we can find happiness."

  10. I started out with RRMS at 17 years old, in a wheelchair for a couple of months. I then lived an able-bodied life for just over 20 years. My relapses were every 1.5-2 years and not too severe. I'm glad that I wasn't strapped to a chair at 17.

    However, the last 4 years have brought rapid progression that is not slowing down. Given this rate of progression, at 41 years old, I'd much rather be a SCI now than face the progression of MS.

    Another point. I left work May 2006 and I am now in a wheelchair and have had to make a lot of lifestyle and home changes with more to come for me to remain at home. Sadly, a co-worker was hurt in a hunting accident last fall and had a complete SCI @ T11. The hospital where I worked had huge fundraisers for him, raising 10's of thousands of dollars and they fitted his home with an elevator.

    I'm happy my co-worker got such help, don't get me wrong. When another co-worker voiced an opinion over the difference in outreach between the 2 of us, I was presented with a very generous gift of 12 home delivered meals and 2 housekeeping certificates.

    There is an emotional impact and response to traumatic injury that you don't see with chronic disease.

    So there's my mixed answer.

  11. Weeble,

    I hadn't thought about that. People with spinal cord injury (SCI) are awarded a "badge of honor" that progressively disabled folks aren't.

    With any luck, one day this discussion will be completely altered, because we'll introduce the component of how easy each of these conditions is cured. Maybe we'll be able to make statments like: "I prefer progressive disability because the recovery from surgery to repair it takes a few months less than the surgery to repair SCI."

    Maybe, one day...

  12. weeble,

    I saw the same phenomenon at Camp Discovery - it seemed like resources and help just came pouring out of the woodwork for the women with SCI. Like you, I don't begrudge them any of the assistance they received, but it's interesting to compare that with what happens with the onset (or progression) of chronic illness.

  13. I just found your blog and what smart and interesting comments you have here. I have muscular dystrophy that came on in my thirties. Over the 20 plus years I have gone from insisting on doing things I had always done the old way to learning new ways to do things. I has not been easy, I had too many falls to count, several serious injuries and surgeries trying to keep going as long as possible. I have used a wheelchair now for several years in order to keep working. I am to the point where I may have to make the adjustment of leaving my job in the near future. I have been a pediatric nurse for 30 years and currently serve disabled children and young adults at a school for the severely disabled. I am trying to get used to the idea ahead of time and will cross that road hopefully later than sooner. As time has passed I have lost my ability to take more than a few steps, but I am grateful for the strength to do that! It is hard to find positives when you have a progressive disabilty but I am learning as I go that there are many positive things that do come out of being in this situation. I tried everything else, anger, depression, giving up....none of them helped and certainly made my illness seem worse!

  14. Garden Views,

    Welcome to Enjoying the Ride. Thanks for your kind comments.

    I'm sorry to read that you also have a progressive disease. You appear to be handling it quite well though.

    Acknowledging that our situation sucks while deciding to make the best of it seems like the best approach. Living in denial, or drowning in self pity- neither one seems like a good course of action.

    Best of luck to you.


  15. Garden Views,

    Welcome to Enjoying the Ride. Thanks for your kind comments.

    I'm sorry to read that you also have a progressive disease. You appear to be handling it quite well though.

    Acknowledging that our situation sucks while deciding to make the best of it seems like the best approach. Living in denial, or drowning in self pity- neither one seems like a good course of action.

    Best of luck to you.