Sharing the lessons along the way…

Posts tagged ‘motor neuron disease’

Never. Stop. Trying.


never stop tryingPerhaps you know this about me by now, but if it needs mentioned, I am a person of action.  If something in my life is not working, I make every effort to put a plan in action to change it.

I bring this up because I am starting to wonder if most of our medical care isn’t contrary to this notion.

Off and on for years, I have asked, “What else can I do about this or about that?”

Often the response I get is, “Nothing.” Or perhaps, “You can try this medication or that medication.”  My all-time favorite is “You can get used to it.”  That one I will never forget because that was about me being wheelchair bound and we know how that turned out.  I never did because I didn’t believe I couldn’t do something about it.

It is rare that I get information from a doctor that allows me to do what I do best—take action.  I have gotten this from physical therapists, occupational therapists, psychotherapists, alternative medicine practitioners, and speech therapists; however, in my lifetime of visiting various medical practitioners.

While I might not always enjoy what the action is (take the intermittent self-catheterization for a prime example), I am willing to take it.  While I don’t get information from the doctor or whomever, I will take action to research it to try to figure it out anyway.

Several months ago, I learned and started doing pelvic floor exercises in an effort to avert the need for the use of the icky catheter.  While it hasn’t prevented that, I know it is helping strengthen my pelvic floor area which is necessary for bladder, bowel, and sexual function.

Neurogenic bladders, neurogenic bowels and such are fairly common with spinal cord injuries and diseases that affect the upper and lower motor neuron pathways.

My illness supposedly has upper motor neuron only involvement, and I will spare you the details of what I have taken upon myself to learn about the relationship between the upper motor neurons and these neurogenic systems.

My point is this:

I am doing just about everything I can possibly do that is within my power.  If it isn’t within my power to take action, I am taking action anyway to change my perception about it.  I am never going to love the catheter.  In fact, I may always think it is icky.  But I can still appreciate its necessity and how little control I have over its new role in my life.



The Long-Awaited Update!

moment 6-1-14

I want to give you a long overdue physical update on me, so let me see if I have gotten a good enough handle on everything to share it coherently!

First, let me say that overall, I am still happy with my decision to remove the pump, and I am in no way complaining about any part of the symptoms or issues I am about to share with you.

Let me start off with that annoying burning torso that I have spent so much time talking about in previous blogs.  It is still there, still intermittent, still hard to predict and/or manage.  It is less intense and there are days when it isn’t present at all.

The urinary retention issues, which boil down to a neurogenic bladder, were much better as the baclofen dose in the pump was removed and early on when I wasn’t taking any medications that depress my central nervous system.

In order to function upright, I had to start taking those medications to better manage the ridiculous clonus symptoms, which has led to an increase in medications to help me empty my bladder.

It appears that the medications for the clonus relax the bladder, but not the urinary sphincter.  The bladder muscles need to contract to squeeze out the urine and the sphincter needs to relax enough to let it through.  Mine aren’t doing the right things.

If the latest increase in medications doesn’t help consistently enough, I will go back and learn to self-cath.  It sounds awful, but not being able to empty my bladder is far worse.

I am functioning upright with a new (and quite sporty looking) walker, and in small spaces and short distances without a walker, if my legs feel cooperative at the time.  While I am using up energy focusing on raising each leg to make sure I take full steps with my feet off the ground doing this, it is what I am choosing to do for now.

Could I conserve energy by spending some of my time in a wheelchair as the physical therapist suggested?   Absolutely! But I am choosing to arrange my schedule so that there is recuperation time in between activities that require a lot of walking.  So far, I am ok with this arrangement because I do not want my legs to forget.  It has been ok, even with the increase in hours at the Homeless Emergency Project and an additional online class to teach.

While I am driving short distances, I have figured out that I am having difficulty accelerating and sustaining the same speed.  If this gets any worse or I start to feel more uncomfortable, I have already started researching the possibility of adapting my car with hand controls.

The jaw clonus continues to be an issue, so whenever I am home working on my classes or recuperating, I always wear my bite guard.  It seems to be the best solution I can come up with at this time and it will do.

I am thrilled that even with the increase in working hours that I am able to keep my house clean and take care of all of those day-to-day things that are needed.  I am making it a point to get enough sleep and to have enough down time before bed as possible to make that even better.

While there are issues that quite honestly suck, for now, I think I have made those just about as manageable as possible.  Should any of those sucky things get worse, I even have some tentative plans in place for that too.

I have simplified and streamlined just about every area of my life in recent months and am taking all of this as it comes.  This frees up my brain space to be in the moment, which is a wonderful thing.



Summing It Up Sunday #13

Sunday Catch Up 13

I am happy to report that my surgery recovery is going well and life is returning to its new normal around here.  Week two of recovery from the removal of the intrathecal pump went well, in spite of my body probably not being quite ready to do all that I did in week two.

My focus in the past week has been on trusting the process and trusting the plan as I get back into the business of living and working.  I shared more about the rationale for my plan and that each part of the plan has science at its core this week.

Trusting the process became a challenge when the burning torso returned after having been gone for a while.  I seem to have that burning nerve pain all around my torso for a couple of days and then don’t have it for a couple of days.  It is puzzling really and the only thing I know for sure is that being hot makes it worse.  An ice pack can trick my brain for some relief most of the time, however.

I didn’t have it Tuesday or Wednesday.  I went to the doctor for my follow up on Tuesday and then Duke and I returned to work on Wednesday.  Working without being my own radiant heater was pretty awesome.  I had more energy, I was more focused and Duke and I ambled about the campus instead of using the power wheelchair.

In fact, I felt so good that I let someone who needed the chair more than I did use the chair.  Then the burning torso returned Thursday afternoon and I had it through Friday evening.  It was disappointing.

Working Friday at HEP with the burning torso was more of a challenge, but that is how I have worked since 2011 with the Medtronic Pump.  It isn’t a new thing.

But the contrast in how I felt Wednesday versus Friday was maddening for me.  I honestly know that there is a possibility that the nerve pain won’t leave entirely.  I choose to not focus on that possibility. I know what it feels like to not have it and that is what I choose to be possible as I continue to heal.  It is a constant battle in my head to remember the latter.

Remembering that is my challenge for week three of recovery.  While I still feel like a princess, I am a more independent princess as this week ends and next week begins.  I get to start back in the pool later in the week and start building back up my time on the stationary bike.

I have no complaints about how week two of recovery has gone.  I am ready to get back to the more active parts of the plan in the week ahead.

The Stair-Climbing Runner’s High

Imagine sprinting across the finish line after a grueling 5K or 10K foot race.  Your heart is racing, you aren’t sure you can really make it, but you are in close enough to taste it.  You can hardly catch your breath, but you have never felt better as push yourself across that end line.

English: Athletics tracks at Skyttis IP in Örn...

(Photo credit: Wikipedia)

Sprinting the finish has always been my favorite part of any race I have ever run.  I see that I am so close to making it to that line, and I cannot wait to get there.  I imagine the rush is the same for auto races, mountain climbing or any other activity that is done to the finish line.

Feeling the sense of accomplishment, the sense of physical triumph, and the completion of something is really a wonderful feeling.  You cannot think about what comes next because you are too focused on the moment and the finish.

Unfortunately, we cannot always sprint our way through everything.  As a former runner, I know how important it is to know when to sprint and when to pace yourself.  I was never that great at doing it as a runner. I am not that great at it in real life either.

I would sprint all the time if I didn’t have more sense.  Fortunately, I do have some sense some of the time.

It was by accident that the stairs at HEP became my measure of how my legs were doing months ago.  Now it is a very deliberate measure of my mobility.

Not only did I walk to and from a couple of areas today at HEP, but I also decided I would try to take the stairs.  And I did choose to go down the stairs after Duke got his treats upstairs.

To me, the stairs have replaced the foot race.  I can’t be in a hurry because each step has to be deliberately coordinated with the cane, each foot and leg, and the railing.

The feeling I have after rocking the stairs reminds me of how I felt crossing the finish line in a full sprint.  I want to hold the cane in the air, wave it and shout something loudly while pumping my fist.  I don’t do that or at least I haven’t yet.

Maybe it was too soon after surgery to climb stairs using so much effort, but I really needed a win since the burning torso was pretty constant.  It is my reminder to myself that no matter what, I’ve got this.

Trusting the Elephants

Nerve Endings.jpg

Beautiful Nerve Endings (Photo credit: Steve Dorman)

Every cell in our body has its own little brain that includes a memory.  Perhaps not in the way we traditionally think of it, but memory of some sort nonetheless.  The cells in our muscles, in particular, have memories like elephants.

I believe it is mostly this muscle memory that allows me to continue to walk with the cane in spite of the clonus.  The repeated shaking of the muscles in my legs when I extend them from a seated position are not that obvious when I am walking along with my cane.  Unless my legs are overly fatigued, I hardly notice it when I am walking around the safety of my own place.

Because of this memory and the other complicated pathways in the brain associated with it, I have gone from not being able to propel myself forward to being able to—even as the baclofen was continually being reduced in the pump.

I never stopped trying to make my left foot propel me forward.  I did targeted exercises that used the strength and action of my right foot to strengthen and remind the left foot.  This not only activated the muscle memory in my left foot and ankle, but also activated a pathway in the brain.

I continued to ride the stationary bike even though pressing that left pedal was not really happening in the early weeks of the decreases.  The last few times I rode the bike, that left foot was doing almost as much of the work as my right on those pedals.

In spite of the number of freak out moments I have had throughout the process to get this pump removed, I never lost sight of what I knew was physiologically possible.  Since it hasn’t been long at all that my legs were running 5K’s and walking my dogs, the muscles remember.

At this point, my muscles are doing what they remember they are supposed to do. Because I have a motor neuron disease, the messages get scrambled from the brain to the voluntary muscles.

This makes keeping the muscles active and reminding them daily of what they know they can do important.  It sort of bypasses the signals from the brain and can make me more mobile for longer.

My goal is to not allow the muscle memory to fade.  That was the foundation of the plan I set in motion before the doctor decreased my intrathecal baclofen at the beginning of this process.  The stretches, the exercises, the biking, the pool, the supplements, keeping my schedule normal, and everything I have shared with you were all part of the plan because of the science behind them.

Yesterday afternoon, the burning torso returned.  I can’t say I wasn’t disappointed, but I didn’t stay there.  I had a lengthy discussion with myself about the importance of trusting my body’s healing ability.  I have to believe in the process I trusted when I made the decision to remove the pump.

Two days without the burning torso at a time is better than no days without it.

Pedaling, Pain and Perspective

photo (11)

Since the plan is to remove the pump once the dose is reduced to nothing, I have to worry about the pain the pump hardware is causing for only another six or seven weeks.  It helps to know that pain is temporary to continue with my plan.

I certainly do not want to dislodge the pump prematurely, but I am less concerned about doing activities that make it hurt.  The pump doc had said back in April that I needed to listen to that pain and not do whatever activity was causing it to hurt, or try to change that activity.

That was, and still is, everything I do regardless of the changes.

My physical therapy plan revolves around minimizing that as much as possible, but since avoiding that pain is impossible, I am tolerating it.  I am not doing anything crazy to dislodge it, but I am not babying it either.

When the pump is jabbing me in the tummy on the stationary bike, I grab it, take a deep breath and keep pedaling.  Yesterday I was texting people to make plans while I was cycling so I would just keep going.

Last week, the pain level was pretty high in the pump areas—front tummy where the pump is and the back area where the catheter goes into my spine.  I chose to not ride my stationary bike one day because of it, and realized there was a trade-off.

Before we started the decreases, I started back on the bike every other day and eventually built up to 25 minutes every day.  Each decrease makes the pedaling harder, which is probably why my torso ends up involved and causes more pain.

The trade-off is in the benefits, and the benefits are worth the effort.  If I do not ride it each day, even for 10 minutes, my muscles are more spastic.  When my legs are more spastic, my steps and gait are less smooth with the cane, which hurts my pump areas too.

I have had to change the amount of time I ride for days I know I am walking around a lot, either at work or elsewhere, or getting in the pool.  My legs also fatigue much faster with each decrease because it takes more effort to move them forward.

The temporary nature of pain definitely changes my perspective of it.  The other stretching exercises I am doing also increase the pain in the pump areas, but again, managing the symptoms of the underlying motor neuron disease is my primary focus.

Exercises both in the water and out are not the only parts of my plan.  I look forward to sharing more of the plan with you in another post or two as we continue on this journey.

Kitt O'Malley

Bipolar Writer and Mental Health Advocate


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