Thursday, September 9, 2010

No Chicago Visit

I was supposed to see Dr. Balabanov on September 7 but the plane never made it off the ground. I boarded at 6 15 AM and at 7 45 AM I decided to get off the plane. One of the engines was leaking fuel and there were various other problems or so they said. I wasn't about to hang around to see if the plane made it to Chicago even if it did get in the air. At least I made it home in time to see my kids before their first day of school. I called Dr. B's office to tell them I wouldn't make it that day but I didn't reschedule. If they call me and ask me to reschedule I will but I'm not going to offer. I'm not one for flying and that whole episode kind of freaked me out.

Several days ago I broke down and bought a cane. I used it in the airport but I wish I hadn't. I don't like the attention. I had someone ask me if I wanted a wheelchair, and if I could stand without it to go through security or if I wanted a pre-boarding pass. None of the above! I really didn't need it so I'm not happy with myself for bringing it. I only got it for 'just in case' situations. I haven't even looked at it since. I'm also back on the 12.5 mg dose of 4-AP without any trouble.

Friday, August 6, 2010

One Year Later

One year ago today I left Rush for home. It's hard to believe. So, let's see, what's new.

The slow release 4-AP script turned out to be the same thing I was already taking. (stupid me) It's just a higher dose. Last Sunday I had a reaction to it, though, and ended up in the ER. It was the original, lower dose. I'm back on it and I'm fine. No one knows what the heck happened. I have to keep a script for Ativan with me in case it happens again. Human error in the compounding lab? I can't afford the Ampyra that Dr. Balabanov prescribed so I need to stick with the 4-Amino pyridine.

About two months ago I got an "almost" menstrual period. No signs of it again, though. I'm still breaking out like a teenager! This summer has been one of the hottest on record and that still does a job on me. My electric bill is horrifying but I need the A/C.

I'm still working a little here and there and getting through it fairly well. Once it cools off a bit and the kids are back in school I think I'll try to pick up a little more work. I need the exercise and I like the $!

I am flying out to Chicago on September 7th to see Dr. Balabanov. I had an MRI last week and for some reason he requested an echo cardiogram, which I'm having next week. Blood labs, too. My hair is growing so fast I'm almost wishing I had a shaved head again. Just kidding. My hair is ultra thick and super curly. I may be imagining this but I swear there's less grey, too.

I feel pretty good. Still don't have any of the old fatigue and I have more confidence being out. I have to honest and say that I don't exercise much. If I did I would be doing better. This time of year I like to wear dresses and shorts so I don't wear my sneakers with the foot drop device on it and that is the biggest reason I don't look like I have had any improvement with my walking. If I had it on I'd be cruising all over the place.

Bottom line: I'm still improving.

Tuesday, May 25, 2010

New Script

Last week I started taking 4-amino pyridine in a slow release formula. I had high hopes but it wasn't working. Today I called the compounding pharmacy back to refill my original script. Unfortunately, the slow release wasn't giving me enough oomph to get through the day. On Saturday I fell 3 times! I don't need to have it working while I'm sleeping. Oh well.

Sunday, May 16, 2010


The biggest improvement that I am noticing lately is my balance. Up until about a month ago I don't think I had any balance improvement. Then I started to suspect that it might be getting better and finally about a week ago I decided that it definitely is better. A few minutes ago I stood on one leg, put my other out behind me and stood, totally still. No problem!! I also walked from one room to the other while looking at the ceiling. I wouldn't have attempted this not too long ago. (I can't believe the cobwebs on my ceiling!)

I still have not had a menstrual period but I also no longer have hot flashes. My hormones must still be going crazy, though, since I am breaking out like a teenager. My hair is growing like crazy and I have to admit that I think I'm liking it. It's curly and kind of cute. I have people asking me where I have it permed!

I'm just feeling really good in general. Last weekend Andy and I went out to celebrate my 44th (gulp) birthday and I had a blast! We even danced and I didn't fall. I've been doing tons of yard work and even a little work on the boat.

I've had a few people call me with questions about the treatment since they are going to try it. My advice to you all is this: Hang in there. It's worth it!! I'm living proof!!

Thursday, March 25, 2010


I was asked to post a photo of my hair growth since losing it. I'm going to try to post one now.

There isn't a whole lot to mention except that I'm feeling great. I'm amazed at how quickly I recover from wearing myself out. I'm walking straighter than ever and a lot of the time I'm almost walking normally. I love it!! I've been on my bike almost every day and I am trying to get into some kind of healthy aerobic condition. It's been a long time. My legs burn a little but I keep going. I also don't have to keep stopping to reposition my left foot on the pedal. Last year at this time I couldn't even keep my foot on the pedal without great effort.

Bottom line: I'm continuing to improve!!

Wednesday, February 24, 2010

Some Thoughts

I'm just sitting here reading some of my older posts from when I was in the hospital. After reading things about being able to lift my toes for the first time in years, sit up in bed without help etc. it's dawned on me just how much I'm already taking for granted. I've been able to do so much more for several months now that I forget how far I've come!! It's a good feeling.

Also, I didn't mention in my last entry that I haven't gotten my period since September. I guess it's menopause. My hair is getting longer by the day and it's ultra thick. Things are good!

Thursday, February 18, 2010

Back from Chicago

I saw Dr. Balabanov yesterday. He said there is NO CHANGE between the MRIs from November 2008 and January 2010!! I'm extremely pleased and he was too. He was very pleased with my progress in general, in fact. I had left the house at 4 30 AM and was sitting for hours and hours so I was in rough shape when I got there. But, despite the lack of exercise, he still thought my strength was good. I made the trip alone this time and had no problem navigating the airports on my own even though I was completely exhausted.

As I was leaving his office I heard someone call my name and it was the husband of the woman I got to be friends with while at Rush! She was seeing Dr. B the same day! It was great to see her.

I'm feeling really good in general and love being back to work. I worked 3 days in a row last week and had no problems. I'm working 4 days next week and am not at all nervous about it. About a month ago I got a puppy and she is keeping me active. I have no problem getting up in the morning to take her out. I admit that I was nervous about it.

I had all sorts of things to mention but I can't think of anything that seems important. The bottom line is that I'm getting better.