Saturday, October 31, 2009

Tysabri #2, Trip

I had my second Tysabri infusion this week, and all went well. No side effects, but my energy level has not gone back up again like it did after the first infusion. I'm not getting any worse, seem to be staying at my baseline, so that is good news.

We went to Newport News, VA. We visited the American War Museum, and I made the mistake of using my forearm crutch. There was exactly one bench in the museum, and I didn't have enough strength to see more than 1/4 of it. The next day we went to The Maritime Museum, and this time I used my walker. We were there for six hours, and didn't even see half of the museum. This was my choice, because I love anything that has to do with the sea. Ate at my favorite restaurant--Cheeseburger in Paradise, and got to shop at Trader Joe's!

From there, we drove to my BIL and SIL's home. DH's cousin and her husband and two dogs also came, and the six of us had a wonderful time together. We all ate too much. The last day there, I had to put on a pair of sweatpants because my jeans were too tight around my waist and so very uncomfortable. We went to the beach because my BIL had a kite that he wanted to fly, but as soon as we got out of the car it started to rain.

I love these people dearly. They watch out for me, like DH and Montana, but they don't make it seem like they're doing it.

It was a nine-hour drive home, but we had to do it that way because I had to get my Tysabri the next day.

Monday, October 19, 2009

Living With a Service Dog

As many of you know I have a Saint Francis service dog named Montana, who is a 4-year-old black Labrador Retreiver. He came into my life the end of December 2007, so we've lived together for nearly two years now.

It is a lot of work and responsibility owning one of these fantastic animals. Do you know that, with the remarkable breeding, raising of the dog until he or she is placed with a partner, vet bills and training, they are estimated to be worth $25,000.

At first, I was terrified that I would do something wrong and they would take him away from me. I lived in fear that they would decide I didn't really need him and someone else on the waiting list needed him more. Of course, none of that happened. I relaxed, and Montana has always been relaxed.

The other day, my husband asked me what my choice would be if I could 1) be cured of MS and have to give my dog to another who needed him, or 2) keep Montana and keep MS. There was no hesitation, I said that I would rather keep him and not be cured. Note: That will never happen either, because six months after he came to live with us I signed ownership papers. He is mine, as I am his.

Because service dogs go out in public, in doctor's offices, restaurants, hotels, and even hospitals, they must be kept groomed and clean. I brush Montana every day, brush his teeth three days a week. I have his nails clipped every other month at his vet's office because I don't have the strength in my hands to do it myself. His trainer bathes him four times a year for me out at the Saint Francis farm.

We work together every day, practicing the commands I use all the time and also practicing the commands I rarely, if ever use. The two biggest things he does for me is to walk on my left and help me keep my balance. I can grab his shoulders with my left hand if I lose my balance. He's also been able to steady me just by standing right up against my left leg. The other thing he does for me is to help me get up off the floor. If I fall, or if I'm sitting down grooming him or petting him, I can't get back up by myself. I get into a squatting position, and he comes to my left side. I'm then able to hold onto him and push with my right arm on the floor, and get to my feet.

He picks up things I drop, including my forearm crutch. He can get the phone for me in an emergency. He can run to the other end of the house and get my husband. I say, "Montana, help!" and he runs to the nearest person (who happens to be my husband most of the time), he barks twice, then he runs back to me.

He is also able to conduct a business transaction. Say I'm in a wheelchair and I can't reach the cashier. I would hold my money or my credit card out to Montana and give him the command "take it", then I would say "Montana, up!". He jumps with his front feet on the counter and holds the money or card until I say "drop it". He then drops it in the cashier's hand.

It's like anything else, if you don't practice something you forget how to do it.

He has made a world of difference to me and for me, and I try to give back to him as much or more than he gives to me.

Tuesday, October 13, 2009

Staying Positive is Hard!

I'm finding it hard to stay positive. Okay, I started Tysabri and I've only had one infusion. I did notice that I had energy, and I still have it, where I didn't have any at all. That's very positive.

However, my neuro increased my Klonopin but I'm still having tremors. He didn't feel that the Tysabri would help the tremors. Sometimes they're mild, but other times my entire body is shaking. It's hard to walk, type, feed myself, write; any type of coordinated activity is hard and sometimes impossible. Add to that, my little finger and ring finger on my left hand are completely numb and have been for about four months now. It's amazing how much harder it is to type with those numb fingers. I know, poor me!!

The muscle spasms in my right leg are worse. My neuro said that he wants to wait and see if the Tysabri will help in that aspect. I'm doing exercises, but sometimes in the middle of the night it gets so bad that I have to get up and walk around until it goes away. Sleeping on my left side has become impossible, because that immediately brings on spasms.

I also told my neuro that I'm worried about my cognition. I'm having a very difficult time remembering things, and these are things I've just heard or said. I'm having a hard time naming items. That got me worried about Alzheimer's, although it doesn't run in my family. That, too, my neuro wants to wait and see if the TY will improvie my memory before he starts running any kind of tests.

On the positive side, we're going to Newport News, VA for two days. We are going to spend one entire day at the Mariner's Museum. This will be one of my highlights as I love sailing ships of any kind, especially the ones from the 1600's. We will be visiting a few other museums in the area...and there is a Trader Joe's in Newport News! I love Trader Joe's, but there isn't one anywhere near where we live. When we lived in Tucson, we went there at least once a month.

After Newport News, we will drive on the bridge over the Chesapeake Bay, stopping at pull-out places to enjoy the bay and the ocean. Then, it's on to my BIL's for some family time.

The day after we return from this trip, I will be getting my second Tysabri infusion.

I'm trying to stay positive, but I find it's much easier to become negative. Maybe it takes too much energy to stay positive?