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.

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.

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?

Tysabri Infusion #1

Yesterday, I had my first Tysabri infusion. I also signed up for the TYGRIS study.

The infusion nurse had a few problems getting the IV needle into my vein. After two tries on my right arm, she had success on my left arm. Jane is a marvelous nurse and very good starting IV's, but my veins don't cooperate and this wasn't the first time that there were problems.

The Tysabri IV ran for an hour, then I was given normal saline for an hour while being watched and checked for any side effects. Luckily I didn't have any side effects, so was released to go home.

I did get a slight headache yesterday evening and Tylenol helped that. I also got a queasy stomach and sipping seltzer helped that.

No improvement yet, not that I expected a miraculous cure after the first infusion!

The picture was taken at a Nature Preserve in SC. I was very proud of myself for walking up and back down the path, and for getting up and down all those stairs. With Montana by my side, I feel safe and confident. He is one fantastic dog!

South Carolina Trip

We took a four-day trip to Camden/Columbia, SC. We stayed at a wonderful B&B named Bloomsbury. This is a home that was owned by Mary Chesnut and her husband during the Civil War. Mary kept diaries throughout the Civil War that were published after her death. The Inkeepers graciously accepted Montana into their home, which we are finding out to be a rarity. That is, a lot of B&B's we've contacted refuse service dogs, citing the fact that they have their own dogs, or people are allergic, etc. Something that could be contested, but we feel that since these are private homes that the owners have the right to say no.

Saturday, DH went to a Civil War symposium in Columbia, and Montana and I stayed at the B&B. I took him for short walks around the grounds, but we mostly sat on the veranda. He napped and I read, knitted, and simply sat enjoying the ambiance.

Sunday, we spent in Columbia. One thing I found that was hard to do was to get across the wide streets before the lights turned green. There was a sign with a countdown, and I never made it in time, but luckily no one ran us over!

Monday, we spent in and around Camden. We went to a Nature Preserve, but only got to see a lizard and a flock of geese. Evidently, we went during the wrong part of the day. I did walk down and back a 200 yard path that led to an observation deck, then walked up about 20 steps to the platform. It took me a very long time, but it was quite an accomplishment!

We are home now, resting up from the trip. I'm very excited about my Tysabri infusion Friday, and will post all the details of it next week.

High School Reunion and Tysabri

My 40th high school reunion was wonderful. A handful of us who have kept in touch since graduation all sat together at the same table, then went out to lunch the next day. We talked and talked. I walked around a little, but mostly just sat at the table and talked to people who came and plopped themselves down next to me for a chat. No one asked me what was wrong physically with me, for which I was grateful. However, Montana was a huge hit. Everyone wanted to know about him and what he was able to do for me. So, through him, my illness came out for discussion after all.

The picture is of my handful of HS friends. We had a 2-hour lunch, talking and laughing, and no one wanted it to end. What a wonderful weekend it was!

I was accepted by NORD for financial assistance with my Tysabri co-pay, so I will begin the infusions September 25. I can't wait! I feel so very positive about this drug; that it's either going to improve some of my symptoms or, at the very least, stop the progression. The people at the TOUCH program who handle Tysabri patients are very nice and caring. They sent me a tote bag, a nice red fleece blanket, and lots of information and resources about Tysabri.

Time to go work in the garden on this beautiful day. I've planted my first ever winter carrots, and already the feathery tops are an inch high. I have so enjoyed my five little gardens! I had enough tomatoes to share with the neighbors, and for us to eat nearly every day. I even made two batches of tomato soup. However my favorite, after a tomato sandwich, was to peel the tomatoes and chop them up, then add olive oil and balsalmic vinegar and chill. Now, that is delicious! I also had flowers (I grow nearly everything from seed) called Asclepias that have a beautiful red, orange and yellow bloom. These get about 3' high, and they attract Monarch and Black Swallowtail butterflies.

The five little gardens, plus the potted plants on the deck, were just enough for me to handle. I do a little bit at a time so I don't run out of energy, and I still get some exercise and fresh air and sunshine. Plus, I get a great sense of accomplishment growing and harvesting plants. Montana is always out with me in case I fall, and DH pokes his head out once in awhile to see if I'm okay. They keep watch over me, but not in a pushy way. I love them both for that.

Tysabri and Little Pieces of My Live

At my last neuro appointment, he and I had a talk about how my MS is getting worse and how he and I believe my current therapy (then), Betaseron, just wasn't helping. I told him that I wanted to start Tysabri infusions and he agreed.

Problem is, I have Medicare but no supplemental insurance. The Infusion Center figured that my co-pay would be $575 every four weeks. There is no way in hell that we can afford that kind of money, I don't care how good the drug works.

I contacted TOUCH, and they put me in touch with NORD. I got paperwork from NORD yesterday, and we'll get it filled out and make copies of our financial records, hoping that they will cover my co-pay.

If I do get to go on Tysabri infusions, it will be wonderful. I honestly believe that this drug can help me.

If I don't, I'm not going to get depressed or sad. I will just continue on with my life, deteriorating toward who knows what. I will be DMD-free, anyway.

In other news, I was invited to join a book club--my first ever. Our first book was Travels With Charlie by John Steinbeck. Loved it. We meet every other month at a nice little restaurant that is closed for lunch during the summer, except for the book club. We have great food, good discussions, and lots of laughter. Three of the women in the club (including me) have Saint Francis service dogs. The woman who started the club is also the woman who co-founded Saint Francis. There are 10 of us, and everyone is nice and friendly. Our next book (just started reading it today) is The Good Earth by Pearl Buck. Think I may have read it in high school, 40+ years ago!!

I have also volunteered and been accepted to be on the Outreach/Screening Committee for Saint Francis. Eventually, I will be calling people who have applied for a service dog, asking them questions and talking to them about the responsibilities and hard work that goes into training with your dog. I will sit in on interviews of people who have passed the screening, and I'll have imput into whether or not I believe they would be a good candidate for a dog.

These two things are giving me something to do outside of the house, and also giving me a sense of accomplishment.

Next Saturday is my 40th high school reunion. I am very excited about it. This is the first one I've ever attended. There are a group of us who have kept in touch through the years who are all going to sit at the same table. Next morning, this same group is meeting for lunch and talk. There are so far 45 graduates (plus spouses) who have signed up to come. My class had about 125 people in it, so that's not a bad turnout.