Atypical Multiple Sclerosis

Well, it’s been three weeks since I had the baclofen pump implanted. I am still on a small oral dose of baclofen while the pump gets adjusted. I was hoping to be completely off the oral medicine by now, but my pump has not had an adjustment in about a week and a half due to doc’s vacation.  

My instructions or rather schedule for reducing baclofen had me completely off the med by yesterday. But when I reduced to 10mg of oral baclofen a day, spasticity reared its ugly head. So, per doc orders and my peace of mind, went back to 20mg a day. What does this mean?  It means I need several more adjustments as the pump should only be adjusted by 20% or so at a time. I will have several more appointments before  I am done. That is ok with me.

I am still moving easily; although, yesterday I noticed my feet (had drop foot) dragging on the ground. No, it doesn’t mean the pump isn’t working, it means I needed to go back to 20mg oral baclofen and wait for my next increase to the pump.  That happens in a day or so.  Good stuff.

As for the reaction to my new found mobility, well, it is amazing. One of my siblings with MS also has spasticity. She walks with one Frankenstein like leg, but can easily move around. Well, easier than I used to; and she goes pretty much wherever and whenever she likes. My son used to say, “If you could walk like Aunty, you’d be all set.” Since the pump, he and well pretty much everyone else says, “If Aunty could walk like you, she’d be all set.” It’s all relative. (pun intended).

My doc says I should build myself up to walking 30 minutes a day. She said not to count distance and speed, just time. Once at that goal then I should concentrate on speed and distance, but always go slowly. Not jump into trying to break any speed records.  So far, I have been able to walk twenty minutes at a comfortable, for me, pace.  

Why can’t I walk more than that? Mainly I can’t walk more than that because I am using muscles I haven’t used in about three years. You know the burn you feel when you overwork, strain, pull a muscle? Well, that is how my legs feel when I work them too much, now. Trust me, I am not complaining. I’ll take that feeling any day. It means I am mobile enough, muscles are loose enough to feel that. 

We have a dog – a lab. My son walks him because I haven’t been able to. Now my son walks both the dog and me. My goal is to walk the dog by myself by the time school begins in a few weeks. I used to walk our dog even with my forearm crutches. What a sight that must have been. This big dog being walked by a short woman with forearm crutches. When I was no longer able to walk him, I mean walk him like a mile or two then I trained him to walk on the treadmill. During the school year when my son was too busy to walk our dog, I would go a short distance outside then put him on the treadmill for a mile or two.

A dog using a treadmill. Several years ago during my first course of steroids the visiting nurse, who also loves dogs, asked how I exercise our dog. When I told her about the treadmill, she laughed. Then I told her I wasn’t kidding. She told me she had trouble training her dog with the basic commands. Several months later when I had my second course of steroids, the same visiting nurse came to the house and asked if I still used the treadmill. Even today, I still use the treadmill for the dog and now I’ll use it again for me.

I got the idea for walking the dog on the treadmill from watching ‘The Dog Whisperer’ with Cesar Millan. I saw him use the treadmill for a family that had an energetic dog and not enough time to exercise the dog. I thought I have the time but not the ability to exercise my dog like I used to. I used to take my dog on three to five mile walks five times a week. The treadmill seemed like a good option. So, I guess Cesar Millan saved my dog from becoming a couch potato. I was also kind of proud of what I had done – teaching my dog the new trick of mastering the treadmill. Thanks, Cesar, you’ve got us all in motion.