Category Archives: expectations

MS, Motility Issues, and Another Approach

Keep trying. If you keep failing, look for other sources of strength.  You can climb higher than you ever have before.  O discovered the importance of his feet for this climb, his first rope climbing success.
Keep trying. If you keep failing, look for other sources of strength. You can climb higher than you ever have before. O discovered the importance of his feet for this climb, his first rope climbing success.

During the last week of 2014, my oldest daughter, A, spent three days in the hospital for slow motility issues.  Before A’s recent bouts of stomach issues, I would have been hitting up Google for what “slow motility” might mean in terms of the gut, but after the hospital trip I mentioned in the last post I have been thinking about it a lot.

Slow motility is not a blockage in the gut (constipation).  Rather, it is a great slowing down of the digestive track, a slowing of movement down the track and a slowing of absorption of nutrients.  So with a slowing of the body’s ability to move food down the track being the culprit, I began to wonder why I never hear of MS patients with slow motility.  MS impeding our nerve signals seems to slow every other part of our body’s ability to respond to stimuli.

With that question in mind, I went to patientslikeme.com where Bowel problems are listed as the sixth most common symptom of MS, but included under that symptom umbrella are “any difficulty in passing feces including constipation, bowel incontinence (loss of bowel control), and diarrhea.”  Motility issues are not mentioned, but I note my daughter has had all of those symptoms resulting from her motility issues.  A quick search for “motility” on the site netted nothing.  So I asked the board how many MS patients have motility issues.  The only 2 patients who identified as having motility issues had them predate their MS.  I would also point out many MS patients are on drugs for other MS symptoms which can cause bowel problems, and thus not all bowel problems experienced by MS patients are the result of MS.

If one assumes the common theory of MS these days, the disease is one where our immune system is attacking our nervous system.  These attacks destroy our nerve’s myelin sheath and eventually its ability to transmit signals.  There are numerous studies about the slowing, sometimes to a stop, of parts of the nervous system in MS patients.  There are also numerous studies showing the majority of a healthy immune system resides in our gut-associated lymphoid tissue (GALT).  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2515351/

If our immune system is what is attacking our nervous system, why do we have comparatively little damage to the nervous system closest to the largest concentration of cells in our immune system?  This is the question which has been itching me for a week.  I have posted the question to the MSresearch blog out Cambridge England, and one of their researchers said he would have to look to find me the answer.

I have a few theories which would/could explain the issue.

1)  Measurement error:  On patientslikeme.com, bowel problems were reported but not motility issues.  I am not sure most people with bowel problems get motility studies to assess the cause/ true nature of the problem, and I bet this goes double with MS patients.  My experience is the difficult to explain or prove is often assumed to be the result of MS without ever questioning how MS caused the problem.  So many of these bowel issues could be motility related, and we would not know.

2) It is possible the 70% of our immune system is not the part of our immune system attacking our nervous system.  If this is the case, we have effectively eliminated 2/3 of our immune system as a potential cause of our MS.

3) There is something in the gut weeding off or neutralizing the cells responsible for triggering an attack on the nervous system in our gut.  If this is the case, is this cause replicable outside our gut?

I am sure there are more possibilities, but I was never a very good biology student.  I just find myself trying to attack the MS problem from another angle.  Too often, we respond to what we see in MS with regards to symptoms and progression.  It’s natural to have our attention focused on what we can observe and better yet, measure.

If the measure of the power of science is its ability to predict, then it follows science often draws its power from what we observe.  The trick is to recognize when we fail to see what we expect to see.  For even such failures represent an observation. It is with that recognition that we can start looking for the cause of failure in our expectations/hypothesis.  Perhaps, the answer is already obvious to those who have studied our immune system and our gut.  I just rarely see mentioned anywhere in our nervous system immune to the effects of MS.

Maybe we should look where the symptoms fail to appear in an effort to better explain where and how they do.

 

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Imagination and Hope Forever Intertwined

First food at new house straight from A's hand in an effort to win Peppa's heart.
First food at new house straight from A’s hand in an effort to win Peppa’s heart.

Hope begins with a belief in an ever-changing world. It requires us to imagine a state of being other than we currently experience. Now some days, hope is a wish for things to stay the same, like the first time seeing a look of affection in a lover’s face. Some times hope is for a change in our existence, even if the chances of such a change happening is slight. I think of the lottery, aka, “the stupid person’s tax” as a prime example of such hopes. Some times our situations lead to hopes of both types simultaneously. Every time I refuse to wish away the pain of my MS, it is because of hope. I hope the feeling of pain means I might one day feel as much pleasure as my current pains. Of course, this hope is also a fear of change as my real fear is losing all sensation. Therefore, my refusal to wish away the pain is in part a hope for beneficial change and a fear of a change that would preclude the better alternative.

Still, all hope is rooted in a belief in the world’s change. I will always remember my two lunches five years ago with Michael, the homeless man who had no concept of what would make his life better. (Michael).  He remembered having a family, but both times did not even think of having them around again as something that would make his life better. He was not particularly unhappy as I would expect somebody without hope to be, but this is instructive too. Those who have truly lost hope can no longer imagine “better.” So long as one knows the opposite, despair, one knows what is missing. The truly hopeless lose the concept of change. For Michael, “the world is good because the word is good, and the word is good because God is good.” That mantra was his guiding philosophy as he lived on the street, and a concept of change was nowhere in it.

I think of this some days as I ponder the question of “acceptance.” Should I just accept the limitations my MS places on my life? So often, I read and hear of MS patients having to grieve for, but ultimately accept, their new limitations. I know the psych 101 answer always has acceptance as the last stage of a healthy grieving process, but I keep coming back to it as the warning sign above the gates of Hell in Virgil’s Divine Comedy, “Abandon all hope, ye who enter here.” For me, acceptance of “what is” means giving up hope for a better alternative than what I currently face.

Acceptance is forgetting the possible alternative experiences and no longer acting on their possibilities. Yes, often the efforts are a complete waste. They probably seem foolish risks to many as the outcomes are easily predicted. The costs of abandoning hope may be more subtle, but are they any less?

As parents, I often think hope is one of those things for which we are most responsible when it comes to teaching our children. My oldest daughter still hopes to do many of the things her friends find easy, like monkey bars or math or… These are things with which the smart bet would be she would probably struggle. Still, I look with pride every time I see her falling from the monkey bars or using a number line. When she came to us, we did not know if she could grow to be more than a blob, but now she is a nine-year-old girl nervously making her way through life as best she can.  If she tries and fails but continues to try, who is to say she will not  succeed in some of things she wants to do that seemed impossible.

For months, we knew our neighbor’s dog with which A had slept for the past 10 months would be leaving us. The anxiety attacks she has had lately have been escalating, and in truth, she had reason. Two colonoscopies/endoscopy procedures and a ton of laxative meds in the last couple of months to try to determine the source of and treat her slow motility is a lot to endure. Even before our neighbors dog went back to her owners, A began asking for a dog of her own, who would love her and could rely on her. Her hope was to have the best bond with a new dog. Of course, we let her pick the dog, so there was no shoebox of poo. In a moment of humor to me, she did bring up the story in conversation. Part one of her hope, to get a new dog, has been realized. Part 2, to be well bonded with the dog, is a work in progress.

It seems crazy to bring the canine census in our home back to three, but there is much we are willing to do to preserve the hope and mental well-being of family. I have no desire to see any of us retrace Virgil’s trip through the gate.

One birthday wish came true.  A got a new dog to sleep with her by night and train by day.
One birthday wish came true. A got a new dog to sleep with her by night and train by day.

 

As a side note for all those dealing with either their own disability or a family member’s disability, there is a new web site dedicated to promoting places with good access and services for the disabled.  http://www.disabledonthego.com/ 

It will only be as good and useful as we make it, but how many of us dealing with disability wish we knew ahead of time about possible destinations?

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