The Brain Train

Hello All,
It's a been a few weeks since I started the new meds. So far the bladder medicine is helping overall. I am not noticing a difference in the tremors or the numbness. But I am unsure if these are meds that help overtime or right away. I have my follow up appt with Dr. Beall on August 16th so I can ask then. I will find out the results of the MRI I had on July 11th at that appt as well.

I did start Physical Therapy. I like my therapist she is very nice and seems in tune with MS. She is insistant that she not overdue it with me and wants me to rest between excercises. That's good because when you have MS, being overheated or straining a muscle too much or too quickly can cause a flare up. Neuros used to not advise exercise for MS patients. Now they tell you to avoid it during a flare-up, but when you aren't you can try it in moderation. It is a tricky approach, but I think things like resistance training would be most beneficial. I have also heard of other people with MS finding benefits with yoga or water aerobics or other pool programs. I think the programs in the pool are beneficial because they can help with balance and keep you cool. I really wish I could find a program like that locally that lasts all year long. The only one I am aware of is the senior one offered at the local outdoor pool for the Summer.

So back to Physical Therapy(PT). My first day was devoted to my therapist's assessment of my strengths and weaknesses. Not surprisingly, her findings were that my right side was significantly weaker than my left side. Especially my hands. I had to squeeze this metal handle/grip that has a guage that measures your grip. She wanted to do my left first. It read 40lbs on the guage. She said that was a little below where I should be at for a woman my age. Then she had me grip with my right hand. She said my "dominant" hand should be at a 45lb level in comparrison to my left. The guage read 22lbs. Not good, but I was happy to see that someone else could see how I feel inside. My grip has seemed off to me for a long time. After a brief assessment, the tremor in my hand came out while she was making some notes. I probably sounded like a crazy person because I started saying, "Look! Look! You can see it! My tremor in my hand. You can see it!" She turned and said, "I'm sorry. I'm pushing you too hard." I said, "No, that's not it. It has never done it when a medical professional is around. Only my husband or daughter have really seen it." I know I'm crazy for feeling happy about this, but you start to feel like people think you are making symptoms up just for attention.

Another part of the assessment was I had to sit in a chair, stand & walk about 20 feet to a cone and walk around it, back to the chair to sit down. She timed me to see how fast I could do this. She insisted I use my cane cuz she was too nervous I would fall. I told her I don't need it all the time, but it's definitely good to have when I leave the house because I do fall less. So I used the cane to do her test. I made it in 17 seconds. She said a normal woman my age should be at 7-8 seconds. She said with MS, her goal is to get me to 10 seconds.

I had to write down my goals. I chose "walking better, improvement in going up & down stairs and my grip". I have only gone to 2 sessions so far so we shall see. I am hopeful. I have seen some improvement come & go, but it is early in therapy. I guess when you attempt to re-train your brain you need patience? Well this Brain Train is trying really hard to get her caboose back to the station!

Understand (A Poem by Tammy Malkowski)

If you don’t understand MS,
Could you just trust me?
If you don’t “get it”,
Can you just love me?

If you can’t see what I’m going through,
Can you just believe me?
If you can’t understand my pain,
Can you just comfort me?

If you can’t find a way to fix it,
Can you find an ear to lend?
If you don’t know why this happened,
Can you help my spirit mend?

I love you for trying,
Don’t ever forget.
The effort you’ve put forth,
Please don’t regret.

I have this disease
And I have confusion.
Just don’t ever think
MS is some illusion.

Can you love me anyway?
Can you be my friend?
You may never understand it,
But MS is a part of me in the end.

~By Tammy Malkowski, 7/26/10

My Mind is Racing

Whew! What a crazy 2 weeks! I started with my whole right side feeling numb, mostly my arm & leg. It was super hot & humid, so I wasn't feeling well anyway. The heat cause MS symptoms to flare up. It can make me feel nauseous, lightheaded and feverish. It increases fatigue and trouble focusing, as well as balance & weakness problems. When I say my arm & leg are numb, my best explanation for that is I can "feel" them, but it is like when your foot falls asleep before the pins & needles begin. When you walk on it, it feels weird and numb, but you could feel if someone pinched it or you were hurt. It is as if it's sensations are fading away.

So the numbness lasted a little over a week at that level and then began progressing. It spread to my left side and became worse...meaning the numbness seemed more pronounced. I was beginning to be scared. I didn't know if it would stop. Was something progressing permanently? Was I losing my legs? I didn't think so, but the fear & anxiety made me question alot. After the 3rd day of it getting worse I started to leave messages for my neuro. After the 3rd message, I got a call for me to come in. My neuro wasn't there so I say someone new. Her name is Dr Morrison and she was very nice. Beautiful too! Not that that matters, but it was notable.

She examined me. Looked over my history, commenting how thick my chart is. Talked over what had been happening the last few weeks. I also am having trouble getting a full breath. Wondering if this is the "MS Hug" I hear others talk about? She decided to order another MRI of my brain and spine for July 11th. She gave me a prescription for two new drugs, Gabapentin & Nortriptyline, for the tremors, numbness and nerve pain. She said they work together for MS patients and their symptoms. The tremor in my right hand has been worse and coming around more often. It was so bad one day I think I shocked my daughter a bit. She also ordered blood work to rule out infection as a precaution. She also gave me a prescription for physical therapy for my arm & leg. I have to call & set that up this week.

My anxiety is gone. I'm not allowing my mind to race over the worse case scenarios anymore. I just started the meds, so we shall see if they help. Symptoms are still present, but my smile has returned because we are looking and testing to see why this is happening instead of just ordering more steroids & hoping it'll go away on it's own. I believe she is checking to see if the MS is progressing or not.

I will keep you posted and remember when your mind is racing only you can make it stop by taking action. So hear that Brain? Your race is over!! Sit patiently and let's see how this plays out. Love to all!!