Bad run

So today's run was terrible, I just didn't have it. Neither did my running partner. For some reason I had seizures throughout the run, about every five min sometimes less. We went up to Mt. Tabor which is my favorite run of all, although it is a long one. I love it up there, I'll talk more about that later. The run this morning had everything go wrong with it, I forgot to set my watch until about 1.5 miles, then with all the stopping and starting I mismanaged it as well. What started out as a nice cool run, ended up being really hot, which I am sure affected my ms issues.

I have all these reasons for why it was a crappy run, but sometimes they just are. I slept well last night, so that should have had no effect. I haven't run in several days, so I was doubly well rested. I did clean my office yesterday, so I did inhale about a half pound of dust. I ate a half a Clif bar before I went out, I had water (though I should have hydrated more along my run.

I did my rebif last night, so no supporting evidence that my runs get better after I take it, at least not today. I am going to keep an eye out on that.

I just realized that I didn't take my dylatin last night, the meds I take for seizures. One side effect of not taking them in you get the seizures that they are supposed to control. So the increase of seizures is more the fact that I didn't contiunally take the meds like I am supposed to rather than the meds actually taking care of them. Weird. I would like to get off of these meds. Neurologist appt.next week.

confidence and momentum

As I was doing the dishes I thought about how I stumbled into the kitchen. As I have said before, my symptoms seem to be episodic in nature. I'll get out of a chair just fine and then take a step and stumble through the next 15 feet. My journey to the kitchen got chaotic as I accidentally slammed my plate down on the counter, then quickly cleared up as I made my way through the dirty dishes.

So how is that I can run through these spells? Sometimes I have to slow down and walk through them, but it seems to be much easier for me. Does my momentum give me the confidence to keep moving forward? Even in times on no ms I have ruminated about this. How is that I can run and not fall on my face? How is that I can glide through the obstacles of my neighborhood and not end up on my butt? Momentum carries me through, momentum gives me confidence.

Or is it the physical exertion that does something to my ms ravaged nerve system. I sat ravaged, but I exaggerate, it isn't that bad. Maybe there is something going on in my nervous system that is affected by the exercise.

I have been really curious to find out what goes on in my body when I run. It seems like I heat up when I stop running. That makes no sense to me unless it has to do with less air rushing by me. I have run a treadmill in the gym and I got really hot with no air rushing by. Seems like I read something about the physiology of exercise, I'm sure I can find out something about it. A post for another day.

Didn't get up to run this morning

I took my rebif last night and I was looking forward to running this morning to note its effects. But alas I didn't make it up. Actually I did, but I chose to stay in bed instead. I went to bed early last night, but at 1:00 in the morning our geese held a hootenannie. It is egg laying season (or the end of it actually) so I imagine that is what the crazed honking was about. So anyway, I couldn't fall back asleep after that for any length of time and just sort of tossed and turned. I have noticed this before on the days I take my rebif, then sometimes I sleep right through the night. Yet another thing to keep an eye on.

Maybe I will run tonight after Ruthann gets back from work (or maybe I will just watch the NBA playoffs).

non-running ms post

I have almost made it through my first month of rebif. One of the biggest frustrations with the drug (if not the greatest) is the packaging that it is shipped in. Because it needs to be kept cool, it has to shipped in a styrofoam crate with blocks of ice and many other layers of insulating material. Can anyone say overkill? I know their is good reason for the shipping that Theracom (my pharmacy) does, and the meds are always extremely well packaged (just got my second dose) by issue comes from Theracom's refusal to reuse the packaging. They say they have done it in the past and that folks have tampered with the packaging before returning it. One bad egg ruins it for everyone? Well I think that is bunk. Maybe Theracom needs to do some inspections on their returned packaging. I am sure that the crates can be reused. In fact I refuse to think otherwise. Theracoms solution of just throw it away is environmentally irresponsible and needs to be reevaluated. I am sure they aren't the only pharmacies who do this and I am sure rebif isn't the only meds that get shipped in this manner. I am going to continue my fight to keep their shipping containers out of the landfills.

the day after (a rebif injection)

One of my fears when I first started the rebif was when would I be able to schedule it in. I had heard about the flu-like symptoms and was worried that they would effect me and my running the next day. Well like many people I am experiencing them after I do an injection, but for me they haven't been that bad. I take a couple of Tylenol when I do the shot and I seem to be ok. I also do it about an hour before I go to bed so I apparently sleep through the worst of it.

So what effects have seemed to hangover into the following morning/day? I do still seem to have a little of the flu-like symptoms 12 hours after injection, but not that bad. I don't like to take any pain medicine before a run as I don't want it to mask the onset of an injury, but I have been taking a couple Tylenol before my runs after the morning after injections. The effects I have experienced in my morning-after runs are so far not what I expected at all (I have done it three times now.)

My first MAR (morning-after rebif) run I did a long run (8+ miles) and felt great, a little tired but good. My second MAR run I did a fast run, the fastest 10K I have done since I set my PR. Again I was tired, but the run went well. I was able to continually push my speed throughout. Yesterday I did my third MAR run, this time I went back to a long run (8.5 mi) and I was surprised to see I did it relatively fast too; 8.5 minute miles. Where I usually have an initial seizure after 4 blocks (almost like clockwork) I had none. I didn't have anything until I hit 6 miles and then I had a very slight one. I had several more after that before I finished, but all in all they were small and I was pretty happy about the lack of negative effect the rebif had. During my cool-down I had a few more, but they were light and I added a core exercise routine I have been doing off and on (more off!) this year.

My photo

My wife Ruthann shot this photo of me when I was running the Portland Marathon in 2005. She and some friends waited patiently for me to make it to mile 23 or so. Just as she got ready to snap a photo of me a Milky Way truck barreled down the road. She managed to time the shot perfectly so that I appeared between the two tankers of Milky Way goo. What a photographer!

Gluten and dairy free diet

I decided to try a gluten free and dairy free diet to see if that had any effect on my seizures. So three weeks into eating terrible soy cheese I didn't really see any effect at all except that I caught a cold. I do have allergies to dairy and I don't drink milk. If I eat ice cream I usually get really stuffed up. Also on the wheat side I have found I get equally stuffy when I drink beer, so it made sense to try this. Maybe I didn't give it enough time and I plan to take some of the eating habits I developed during this further. But I also plan to eat bread and cheese. In fact I did read that gluten may actually be beneficial to ms folks.

I really enjoyed the cheese toast I had last night!

Getting your fatigue in shape

My big question I have had (which I can find no real answer) is can I get my fatigue in shape. I have talked with my neurologist about the idea of pushing my running and she has assured me (and I have seen this concept confirmed elsewhere) that by pushing myself past the limits of my fatigue that I am doing NO damage and not furthering the damage done by my ms. But she hasn't been able to tell me if I can get my fatigue in shape, by that I mean through repeated exercise can I extend the time I can run and be fatigue free.

So I figure, as with just about everything with ms, that I need to discover for myself and my body and my ms what I can do. Experimentation is the name of th game. My primary symptom has been these seizures that last anywhere from 4-10 seconds, usually on the 4 second end. So I am keeping a record of my seizures and running in my running journal (a must for any runner). Here is what I have noticed so far. Just about every time I run I experience a small seizure at the beginning of my run and usually in the same place on my route (which would support my pre-diagnosis theory that I was allergic to something environmental, but I think it is more). Then I have a period of time that has been anywhere from 2-3 miles and more frequently around 5.5 miles where I have nothing. at the 6 mile point or so the spells (much better word and so Victorian!) seem to come every 5 mins or so. This seems to be the case whether I run further or I have run 6 miles and am doing my cool-down routine. I have also noticed that at the 5.5 mile point if I stop for any reason a spell will hit. Perhaps this has to do with some sort of heat level in my body and the stopping either elevating or cooling quickly it. I would like to read more about the physiology of exercise. More for another day perhaps.

It is curious to me why I have a period of time in my run after the initial spell where I have nothing. The 5.5-6 mile point where they more or less consistently return is puzzling as well. Does my body hit some sort of heat level where the spells abate and then another heat threshold where they return? Possibly I need to hook myself up to one of those vo2max testing machines but modified for my results. Hmm...

So like I was saying I want to know if I can extend that 5.5-6 mile threshold. Once I hit that point and the spells return I can keep running, I just have to slow down and walk through them or stop and look around. Oddly it always seems to happen when I come across someone working in their yard. So I have to stop and they wonder what the heck I am doing. Oh well. So I am going to try to keep pushing myself to a certain point and see what happens. One of the downsides of pushing myself is that I have a tendency to go to far and be pooped. Usually that happens after I return from running and start on chores or yardwork or going out. That is when I pay.

Another thing that seems to effect this threshold is the temperature, the hotter it is the quicker the spells return. Or Saturday when I was really feeling it in my lungs from being sick. The spells seemed to come back quicker around mile 4.5. Maybe it is a time, heat, energy level thing, some crazy formula that I should be able to come up with to determine how far I can run. I knew math would have a part in this!

Saturday Run Downtown

I had a good run yesterday even with the cold. I was huffing and puffing a bit and I really seemed to over heat towards the end. But we kept the run pretty mellow. I was amazed at how many people were passing us running on the esplanade. I am used to being the fast guy! I don't think it is the ms that is slowing me down, I think it has more to do with my lessened conditioning. It will come back (but not before this cold goes away.)

I am trying to decide if I want to go for a run today or not. It is really nice and cool (cool, not cold) and sprinkling which is my favorite weather to go running in. Great thing about running in Portland, you get a lot of this sort of weather.

rebif, colds and running

One of the most common side effects of taking rebif are "flu-like" symptoms. Mine had not been too bad so far, I don't know if it is that since I am just starting out that my doses are smaller or what, but the aches and pains have been lite. That changed last week. I felt really crappy, sneezey sniffles and sore throat. It dawned on me that it wasn't the rebif, I had just caught a summer cold. Sort of surprised me cause I usually don't catch them, I am not sure how much effect the rebif's suppression of your immune system had to do with it or not.. So I had a cold and a crappy one at that.

This cold really seemed to focus itself in my sinuses (which was one of the reasons I questioned if it was rebif or a cold) and left my lungs alone for the most part. Even though I was coughing a lot, my lungs were pretty clear and I felt able to run. Running went really well, I was a little tired and my speed was lower, but I managed. I was glad I went.

Today I am going out for what I think is the third time since I have had this cold. My lungs feel good but I am a little stuffy. I think it will be ok.

Last night I just moved up to a half dose of rebif. I just noticed that I am getting some sweaty feelings (one of the flu-like symptoms) but it doesn't seem too bad.

This will be the third time I have run the morning after an injection. At first I was concerned about it as I wondered how the symptoms would effect my running. Both times I have done it I saw no effect. In fact the first time I had a really great long run and the second time I logged the fastest 10K since I set my PR at Sean's Run of 49:00. Today I am don't expect to do a huge run, more of a slow pace downtown ending at the farmer's market for coffee and a danish (I am considering going off my dairy and wheat-free diet for good - more later.)

Alternative medicine and ms

I find one of the most intriguing aspects of treating ms is the use of alternative medicinal methods. As with most long-term diseases people have turned to many treatments to either affect a cure for their disease or to alleviate symptoms. ms is no exception. Te treatments out their are numerous and intriguing.

My doctors of course recommend the Western approach and my mind agrees, I have a great respect for science. However my heart says differently and demands that I explore alternative methods. Both sides say they have the best treatment and the other is nothing but poison. In my first few weeks I was very confused. I'd checked out numerous books from the library and read many things online. But nothing told me what I was looking to hear or what I was thinking which was that the best approach would be a blend of the two approaches.

One day I went to an MS program put on by MSLifeLines, the support group for rebif. It was on exercise and I was really interested so I took the long bus ride out to the hotel near the airport where the event was to take place. Turns out that the event wasn't solely about exercise, but it was included in a complementary and alternative approach to ms. Dr. Allen Bowling spoke about his thoughts. He held up his book, Complementary and Alternative Medicine and Multiple Sclerosis which I recognized as one I had just checked out from the library, but had yet to open. He had many good things to say about the blend of Western medicines and alternative and complementary medicines. It was just the advice I was looking for.

He talked about the benefits of many forms of alternative and complementary treatments and explained that there has never been any true clinical testing of these approaches. His basic finding was that they work for some and not for others. No golden egg, but at least I now knew I wasn't wasting my time.

One of the things he has done is to create an online community where he conducts surveys on the many methods of complementary and alternative medicines out there. These surveys are both heavily and lightly participated in and give a good idea of how people have responded to several CAM approaches. The site is http://www.ms-cam.org. Well worth your time to join and check it out.

Running with fatigue

After five weeks of running with ms I am finding out the obvious, the largest hurdle is fatigue. So far it hasn't kept me from running my 6-8 miles, rather it affects me afterwards. Hmm, sounds just like my body has always responded to running. So how is ms any different. In many ways it is not.

One of my most prevalent symptoms for my ms are that I experience mini seizures or spells. I feel sort of dizzy, but that's not quite it (more on this later). Quickly, my speech gets slurred and I have trouble with coordination. I have been finding that I experience a small spell at the start of my run and then nothing further throughout (this is after I started Dylantin to manage the seizures (again, more on that later)) until I stop running. Almost immediately I get them again. Usually I will walk for a half mile or so to help myself cool down (even before ms) and sometimes the spells (I do love that word, so much better than seizures) don't hit until I reach the house and begin my end of run stretches and exercises (more on that later as well).

Before I was diagnosed with ms, the spells would hit me during my run every 5-10 minutes or so and would last for maybe 10 seconds. I would feel them coming on and I would just slow to a walk, sort of stumble a bit throughout, and then start up again. I run with a partner on Saturdays and at first this really freaked her out (and me as well) as initially we didn't know what was going on. She thought I was having a stroke, slurred speech, trouble walking, etc Who can blame her.

Now, and I don't truly know if this is solely the Dylantin or just the natural course of ms with me, the spells have been lessened especially while running (as I describe above).

On the days I run my symptoms seem to be stronger almost like my ms slowly cools down as well. I want to take some days off to see if inactivity really has any affect on my symptoms. I suspect it will to a certain point, but inactivity isn't the answer I am looking for. It is my hope that as I continue with the rebif (I am just into my third week of taking the injections and just now getting into the half dose of the med) that the symptoms will lessen (at least for now).

First searches

One of the first things I searched when I found out I had ms was running and ms. I was sorely disappointed, I hardly found anything. There was one story of a woman who was going to run a marathon with ms but it never pulled up anything about how she did. I hope she made it. The other story was about a man who ran for years and finally had to give it up. He was able to relive his running days through his wife who he helped train for a marathon.

I wasn't looking for inspirational stories, I just wanted to know how to do it. So that is my goal, to share with you all how I do it. Even though I am sure your ms is different than mine, maybe you can get something out of this. I also hope all of you out there with ms who are running can share your thoughts, successes, frustrations, prs, etc.

You can run with ms.

Running with multiple sclerosis

I am a runner, not a crazy 125 pound 6' guy, but a runner. I have done a marathon and several 10Ks, so like I said I am a runner. I put in between 20-30 miles a week on the Portland, OR roads. I own a running watch and several pairs of worn out running shoes that I can't seem to throw away for some reason. I also have multiple sclerosis which I refuse to capitalize. I was diagnosed about 7 weeks ago, it sucks.

But I am not going to let it get me down or hold me back. My plan is to make running my best medicine, well at least as far as my psyche is concerned. I am sure the rebif (I also refuse to capitalize it's name) is doing more for me internally, but running is going to get me through this. I am going to live with ms, so I might as well run with ms. I will let you know how it is goes.