MS Positive

Staying positive with MS

More on water, and a little rambling

So I’ve been in the water regularly, and am already seeing great benefits. It’s not always easy to make it happen, but it is very much worth it. Another important area I’ve let myself go lax on lately is making sure I drink enough water. The last few days I’ve been working to get back into the habit of making sure I get enough. What does that help? Everything, pretty much. Fatigue, cognitive function, overall well-being. I know I’ve touched on this before, but it’s easy to slip into older bad habits without realizing it. I have found things that work better for me to keep on track with it, I just have to remember to do them. The biggest thing for me is to keep a reusable water bottle filled at my desk. I can get three large glasses from it every day and if I fill it first thing I use it. I highly recommend the maker of the one I use: http://www.libertybottles.com/

Pool status update

Big news today – This marks the first week I’ve been in the pool every day before work, which was my original goal. How is it going? Well, my original estimates put me at 36 trips across the pool. I did a rough estimate today, and I was doing twenty passes… every five minutes! I was pretty consistently marking 40 passes every 10 minutes, and I want to increase that to 50, it’s my next goal. I’m figuring out how to move in the water efficiently, and drastically improving my turnaround time, which is awesome.

I can really feel it in my lower back today, so I know it’s working my core. My legs burn today, but not as much as they were earlier in the week, so I think I’m passing the initial pain of starting a consistent workout regime, which is also an exciting thing. I can feel where there will be improvements as my muscle tone and stamina improve. I can feel a more elevated heart rate, so I know my form is becoming more aerobic, which I know will have profound long-term positive impact for my health.

More than anything else, I feel like I’m finally finding my inner peace and beating the constant feeling of being overwhelmed all the time, which was what I set as my primary goal for 2015. I know everything is improving, and the best is yet to come. I haven’t felt this great in years!

Plunging in again

It has been an interesting experience figuring how best to move in the water. It started as just floating in the water and gradually working my way across to the other side. After a few times in the pool, I started focusing more on the aerobic aspects of it. This in turn led to skinning my feet on the rough pool bottom, and in conjunction with a bout of seasonal flu/cold, ended in spending some time out of the pool. What now? Aqua shoes! The first time in the pool with them I knew it was a good move. There is no more wear and tear on my feet, and I’m now getting significantly better traction on the bottom of the pool. Rough estimates put me at around 36 trips across the pool, twenty or thirty feet per trip. I’ll increase the precision of my estimates as time goes on. I’m getting much better at economy of movement in the water. Afterwards I feel like I’ve had a thorough full body workout. Recently I’m feeling it particularly in my shins (odd) and lower back. I can tell it’s significantly working my core. It has improved my walk speed outside of the pool too. It’s an interesting form of meditation in motion, being more aware of my body. I focus on my center of gravity and on momentum. I focus on pushing my feet forward against the water. Because of the conservation of momentum in the water, I do a better job of setting a rhythm to my movement.

I will keep updating here as I progress with this. I am really looking forward to where I’ll be physically after a few weeks/months of doing it consistently (never missing more than two or three days in a row). It typically takes me sixty minutes all told to do thirty minutes of exercise, but I will be working on becoming more efficient there, too.

Taking the plunge

This week I started the water aerobic therapy I’d been told would be beneficial. I didn’t really know what I was doing as I waded into the water, and I’m sure it showed. It doesn’t matter. I started! At first I was figuring out where in the pool the right depth was, and how to move my body in the water so that I was not only making the movements of walking, but actually moving through the water, too. Yesterday I upped the rate a bit, going for more heavy on the “aerobic” part of “water aerobics” I wore myself out thoroughly. I also appear to have worn through a few layers of skin with my feet on the rough concrete bottom of the pool. Oops! Looks like I’m taking a day off, and maybe looking for some aqua shoes to wear while I do this. I slept more soundly last night than I have in a while, though (When I slept, anyway. Having kids who don’t want to sleep at night is unhelpful.)

I can feel that this is a thorough full-body workout that has whatever intensity I desire to put into it. It’s just me and the water. Marines apparently call water aerobics “harder than running”, and I can see why. It is, however, amazingly wonderful how natural and comfortable it is to slip into the pool. I look forward to bringing updated results as the journey progresses. I wasn’t really expecting to see significant results for the first few weeks at least, but the way it’s going I may be surprised. Stay tuned.

Next steps

It has taken me longer than I originally intended to get to this update. I’ve still been working towards my goals. Since my last update, I did go over all the test results with my neurologist. There were no real surprises there. The biggest takeaway is that I’ve apparently developed some symptoms related to ADD, and now have a prescription to deal with that. I’m currently in the phase of finding a baseline dosage, I.E. one small enough that it has no noticeable impact. From there the dosage will go up. At that point, it’ll either be all good, or we’ll move on to another drug.

This was not originally something I particularly relished. I think I’ve dragged my feet for long enough, though. I care too much about those close to me to allow them to be hurt through my own inaction. It might not be the process I originally wanted, and it might not work perfectly with the first try, but recognizing these issues and addressing them for the sake of those I love is worth more to me than my own feeling squeamish about the process.

Waiting on test results

So after the exhaustive battery of tests, I am waiting for an appointment with my neurologist to go over the results of said test. This is scheduled for the end of this month, and I am looking forward to going over everything and setting a plan of attack. What am I doing with myself in the meantime?

Well, I’m working on implementing what I already know. I’m doing my best to improve my sleep hygiene, I’m continuing to exercise, and I’m working to gain access to a pool that fits the prerequisites for the aqua therapy I’m going to start as soon as I can.

What else do I have going on? Well, let’s talk about it some. Something that I have hinted at already, and I know is a hot button topic for a lot of people in the prime of their life with MS, is starting a family. Three years ago, my wife and I had no children, and I had deep seated concerns about what life would be like if we had children. What about the energy necessary to have a family? What about falling down? What about falling down while carrying a newborn?

In short, we now have two beautiful sons, and I could not be more thrilled. Is it easy? Of course not! Is it worth it? Absolutely! I feel very fortunate in the reversal of a lot of symptoms I deal with in RRMS. A lot of it is related to being more strict with myself in things I know help, I.E. getting enough rest, eating well, managing stress, and everything else I’ve talked about here. I do have a much more concrete reason to make certain that I do what I have to now, though, as there’s not much wiggle room here, and any misstep is paid for for days. Do I deserve anything less? Of course not, but I find it much easier when I remind myself that I am doing it not only for myself, but for those I love who are close to me. I know I am still far from where I want to be on these things, but on the other hand I feel like somebody flipped the “Super Dad” switch on for me, as I am already capable of physical feats I thought I’d never see again. I don’t think twice about carrying my kids. I take out carts of trash down the stairs in one hand. I could go on, but you get the idea. I never thought I’d have to worry about neurological issues if/when I hit this stage in my life, but to think I could live a life with some semblance of normalcy surrounded by so much love and life is beyond wonderful, and by far the best thing I’ve ever experienced. If anything, I wish it hadn’t taken me so long to get my own life to where I was willing to take the plunge. I know everything happens for a reason in its own time, though, and I have no regrets.

Lists

I have been aware that I do better with lists than without them for some time now. It’s a common thing most people that deal with MS are aware of, and probably not news to anyone.

At the cognitive testing, the specialist spent some time harping on this subject. The part of that that stood out to me the strongest was he said he had patients with far more severe neural trauma than I that were still active, productive members of society by spending the first hour of the work day writing up what they were going to do. That is a more extreme solution than I think works for me, but I have gone back to leaning more heavily on planning again, and I’ve already begun to see significant improvements in my daily productivity. I have by no means arrived, but I am going to continue down this road indefinitely, and I highly recommend the same for you too. It takes a little time to find the right balance, but for me the balance is farther into the planning stages of my day than what I was doing. I look forward to increased productivity in the future as I come to a solution that works for me.

I will say that my smartphone has been great with this, even though it is only one of many tools I’m using. I use Android, which gives me access to Google Now. It is nearly universally recognized as the current front-runner in voice recognition and Digital Personal Assistant software fields. It took me some time to accustom myself to it, but now I can set myself reminders including time, day, location, and people, with just a brief sentence spoken to my phone.

Astronauts, surgeons, engineers – These people all do difficult and dangerous things that require a very minimal margin of error. This is achieved though – you guessed it – lots of practice, and lots and lots of lists.

Here is a wonderful talk given by Chris Hadfield on how people in extremely high-stress situations handle things. If you pay attention to the talk about prepping, you know a lot of lists were made and followed.

http://www.ted.com/talks/chris_hadfield_what_i_learned_from_going_blind_in_space

 

Cognitive Testing

On Monday I spent the day at the hospital with the specialist my neurologist sent me to going through a series of cognitive tests. It was both exhaustive and exhausting. It could not have caught me on a day where I did worse, and all of the most taxing tasks were done in the afternoon when my mental faculties are at their lowest. I couldn’t have asked for a more accurate example of what it is I am working to deal with. I am very pleased.

We spent a large amount of time talking (mostly listening, in my case), and covered pretty much every possible topic to at least some degree. It was not a happy thing to go through, but I am glad it was done. I will touch on just a little bit of the things I took away from it here.

1. Exercise is king. I knew that, but he harped on it a great deal. Also, he said that aqua therapy gives results that are “Leaps and bounds above and beyond” any other form of exercise. He was very explicit in what therapies I need to do. He said it is a significant investment of time and effort under specified circumstances, but I just need to make it happen. That’s what I’m going to do.

2. I’m obsessive. I knew that, but he stressed that a good bit. That’s fine, I just need to choose what to obsess over carefully. I am going to redouble my efforts in this area again, as I’ve become somewhat lax there.

3. My attention wanes. That hasn’t always been the case. Being honest with myself about that was a driving force in going down this road. He reiterated that again.

He spent a good deal of time talking about potential medication to help to deal with these things too, and that will be something I discuss with my neurologist. It will be very interesting to see where things go from here.

I’ve barely skimmed the surface on a small percentage of what was covered on Monday. I will discuss things more as we move forward.

Spasticity

When I first started working out my lower body, I had a significant increase in cramping in my legs, ankles, and feet at the end of the day. I realized this week that as I have adjusted and continued progress in doing squats regularly, the cramping has all but completely gone away, which is a significant improvement from where I started.

Cognitive

It has been difficult for me to admit to myself that I do deal with cognitive symptoms in MS. This spring I did begin admitting it to myself, and to my neurologist. He put me on a waiting list to have this looked into. I got a call a few days ago to schedule an appointment. I am going in near the end of August. I am pretty excited about this, if a little nervous. My current understanding is we’ll get a baseline, and that there will be skills I can learn to help with this. I figure at this age it’s best to get out ahead of it, so I can maintain as much as possible, since my career weighs so heavily on cognitive function.

I have been taking this into my own hands a good bit. I looked into some official brain training software, and was rather unimpressed. I won’t share any names, but information on them and their success (or lack of measurable improvements) is readily available if you look for it. I will say though that I have seen several studies done that prove significant mental prowess developed from using games. I remember when I first got into Starcraft some years ago now that I did notice it altering how I viewed and interacted with mental challenges. I recently started playing Starcraft II with the intent of cerebral development. As of right now, I am very glad I did. The game has streamlined a lot of the interface, so what you are left with is the strategy. The game tracks a significant number of metrics during gameplay that can be reviewed afterwards. To be competitive requires an understanding of the game, the ability to develop and achieve a set of goals, observing and reacting to an ever-changing environment, and a set of honed skills utilizing significant hand-eye coordination. In the span of about a week my APM (or Actions per Minute) have more than doubled, and the actions I take have become more efficient. The difficulty rating I am able to be competitive at has increased.

The most exciting thing about this is that I have already started to see some of these improvements in my general life, too. I have seen measurable improvements in my job, as I apply the goal oriented approach to what I have to do each day. I am able to multitask better without losing sight of what my main objectives are. It’s interesting how it fits so well with other skills I was already working on for myself, such as mindfulness, awareness, and being proactive and decisive.

I look forward to seeing where things go from here. I will let you know the highlights of my journey of self-discovery as they happen. Until then, check out the OODA loop. It fits right into the middle of a number of other areas I was working on just prior to taking these steps. Here’s to being alert and aware! https://en.wikipedia.org/wiki/OODA_loop