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.

Good Grief, My MS Is Getting Worse

My tremors are increasing, my balance is worse, and I can barely lift my right leg. I'm getting worried. I had a 3-day course of Solumedrol, but nothing improved. My neuro increased my Klonopin, but that's not helping my tremors.

I've made up my mind, after talking to people at the Infusion Center and reading posts on my MS forum, that I'm going to tell my Neuro that I want to stop Betaseron and go on Tysabri. I've heard more people say they've had improvement than not on Tysabri. I don't know if he will go along with it. If he doesn't, I'm seriously thinking about trying to find an MS specialist. I really like my neuro, but I think he and I need to get more aggressive in my treatment.

I have an appointment with him the end of this month, so we shall see how it goes. Wish me luck.

Good-bye Sue, We Miss You!

On Mother's Day, a friend of mine died. I knew Sue through Saint Francis Service Dogs. She was one of the first people to be partnered with a St. Fran dog, and his name is Barkley. Yes Barkley is 12 years old, and he was by her side for ten years. Barkley will continue to live out his life with Sue's husband and family. He is a very sweet golden retriever who loves life and people.

Sue was one of these people who never met a stranger, always took a moment to stop and talk to people who wanted to know about Barkley and service dogs, and always had time to talk to friends and ask how they were doing and leave them with a smile. She had a myriad of health problems, and was on supplemental oxygen at all times. She had seizures. Barkley knew to lay across her during a seizure, and then to go for help or the phone afterwards.

We live in a small town, and every time we went into Walmart or Krogers someone invariably would say, "you just missed Sue and Barkley".

During one of our partner classes, Sue told a funny story about Barkley. At night when he needs to go out to park (bathroom), he waited until one of them turned on his flashlight and handed it to him. He then would go out with the flashlight to do whatever business he wanted to do. Then, he will come back inside and hand back his flashlight. So funny, so sweet!

Sue's memorial service was this past Monday. Barkley was sitting with the family. There were also five of us with our service dogs who attended the service, plus lots of family and friends. Sue's son is in the Marines in Iraq, and the service was postponed until he could get home to be here for it.

Sue's husband said that Barkley is okay as long as they can keep him busy, but then he starts looking for Sue. It is so very sad, because it's impossible to explain to an animal that the person is gone.

Good-bye Sue, we miss you!

Mowing, Planting, and Nice Neighbors

MS has taken some things away from me, or the ability to do some things. A little over two years ago, we sold our two-story home and bought a ranch that is on 1.25 acres. A few months after that, we bought a riding lawnmower. I mow the yard.

That lawnmower has given me so much pleasure! I have a responsibility to do that I absolutely love doing. When I'm on the mower, I have a sense of pride and I have a whole lot of fun. Once I mow the front and sides, then the fenced-in part in back (Montana's yard), I get to do the "back 40". This is a huge part with slopes. Have you ever mowed going down a slope? Sometimes I pretend I'm on a rollercoaster, let it rip, and yell all the way down! It's given me back a little bit of myself that had I lost.

If it ever stops raining, we are having a landscaping company come to do some work. I'm having small gardens dug in the corners of the fence. I've got seeds from Burpee waiting to be planted. Flowers and herbs and carrots for the gardens, flowers and herbs and patio tomatoes for the deck. I love growing things from seed.

Our next-door neighbor has put her house up for sale. She has a two-story home, and has lived in it for 30 years. But her health is bad and her husband died last year, she said the home is just a house now that she can't keep up by herself. We will miss this neighbor. When we moved in, she brought over a pot of stew. She's like that. The neighbor across the street (also a sweet woman) has moved to another state and is getting married. She has rented out her house to a young girl. Haven't met her yet, she just moved in this weekend. She planted some flowers. I hope she's nice...and quiet, too!

Passover and Family

My sweet BIL and SIL hosted the family Seder again this year. Our son and grandson (see picture) flew in from LA, which made it even better. We had a wonderful time with many great conversations and much laughter.

Together with family and friends, we celebrated Passover with a (short) Seder and a wonderful meal. I have MS, and a friend's husband has muscular dystrophy. Our diseases are downplayed; not ignored but, no one makes a big deal of them either. I like that.

We also had the unveiling of my mother-in-law's tombstone, another Jewish tradition. After the small ceremony, my BIL handed out seashells that he had collected. We placed them on all of our relative's tombstones in place of the usual small stones, in remembrance that we were there. It was a nice touch.

Darn it, but it was too cold and windy to go to the beach. I love to sit on a bench on the boardwalk in nice weather while Arnie walks Montana down near the surf. Both of them try their best not to get wet, and they have a great time together. It makes me feel good to see them having fun while I sit and soak up the sun and smell the ocean smells. My favorite place to be is near an ocean. Some day, I would like to rent a house, maybe just for a weekend, maybe for a whole week, that's right on the beach with a big front porch and huge windows that look out onto the water.

My New Ramp

Here is a picture of my new ramp, and the great guys who built it for me. Many thanks to Don and Mason with the Bike the US for MS organization, and Steve who owns Grayson Place Building near Charlottesville, VA. Don, Mason and Steve worked this past Saturday and Sunday, building me a ramp that makes it easier and safer for me to get from my front door to the car and back. Please take a look at Don's website -- http://www.biketheusforms.org/

I also found out that Don put a video of me on YouTube. Check it out: http://www.youtube.com/watch?v=3uQNTI48lMI&feature=player_embedded

This group of super nice men and women are riding from the coast of Virginia to the coast of Oregon this summer. Their goal is not only to collect donations for MS, but also to give a hand to people with MS along the route they'll be taking. If you live along this route, let them know. If you know of anyone with MS who lives along the route who may need a helping hand, please let them know about Bike the US for MS.
　
Thanks, maryann and montana

Feeling Sorry For Myself

I was in a really great mood, until today when I came crashing down. An old and dear friend posted pictures of herself and her friends on Facebook. Don't get me wrong, I am not jealous of my friend. In fact, we have been through a lot of the same emotional crises such as divorce and starting new lives after being dumped like a piece of garbage.

However, seeing her made me aware of my physical situation in amazingly great detail. Here is a picture of me wearing my ankle and wrist weights to counteract my tremors, sitting on my rollator with my faithful and wonderful Montana by my side.

Everything I do has become such a damn struggle. So many, many things I can't do anymore that I miss so much. Even if I wanted to get all dressed up, I still could never feel as elegant as my friend looked in her photos. Not with all the accoutrements I need to get around.

I know this will pass, and my mood will improve. I have a wonderful husband, a loving family (his, but who's counting), a fantastic dog, a home that I love, some good friends, a few great friends, and a couple of cold beers in the fridge.

I am who I am. I have MS, and it has been kicking me down. So, I've got to pull myself up (mentally and physically) and quit feeling so sorry for poor little old me.