Sunday, January 31, 2010

Falls and Tremors

Ring around the rosies.

Pockets full of posies.

Ashes, ashes

We all fall down!

I fell twice last week. At about one week before my last Tysabri infusion, which was last Thursday, my balance deteriorated and my tremors were out of control. When I was outside picking up after Montana, I fell. He was up on the deck and when I yelled for him to come and help me, he immediately ran to my side to help me up off the ground. What a super service dog! Luckily, I didn't hurt myself in either fall except for bruises.

My balance has since improved since the infusion, with no more falls. I had cut my Klonopin down to 1 mg at bedtime, but then began taking three pills a day because of the tremors. However, I don't know if it's the Tysabri or the Klonopin that is helping with my tremors. It may be both. I'm still not using my forearm crutch, just depending on Montana walking on my left for balance control.

The Tysabri infusion went well. I told the infusion nurse that I was having chills daily, sometimes waking up from sleep chilling. She told me that my hematocrit and hemoglobin were both a little low the last time, and that she would check the results of this week's blood test because I may be a little anemic, which I guess can cause chills.

Salem got at least 12 inches of snow Friday night and Saturday. We're paying our sweet neighbor to shovel the driveway. I was able to shovel half the ramp, the top of the deck leading to the stairs, as well as the stairs. It was exhausting, but luckily the snow was light and powdery. I kept thinking that must be the kind of snow that the skiers love.

I've never skied, but I used to to ice skate a lot in grade school and high school. I've been thinking about buying myself a pair of skates to hang on the wall as an incentive to maybe trying it again when the indoor rink opens back up in September. It certainly doesn't hurt to dream.

Thursday, January 21, 2010

Friends With MS

It is amazing to me the number of friends I have made who also have MS. I don't go to the local MS support group. I've tried support groups in the past, but didn't care for them. However, last year I began going to an MS Yoga class. Most of the people in the class have MS. Our instructor is amazingly kind and very sweet, and we all love her. I met a woman when I went to Yom Kippur services without DH, who has MS and invited me to sit with her. We have become friends. I've made friends at the infusion center, most of whom are receiving Tysabri. Then, there are all of my online friends whom I've never met but we've become close through the forum (NeuroTalk/PsychCentral), which I've belonged to for a few years and have found it to be the best MS forum. I was recently asked to submit my blog to Wellsphere. What a grand feeling that was! Thank you, Wellsphere for wanting to include my blogs, and for giving me a boost!

When Montana moved into our home and into our hearts, I made some of my best friends, support system, and all-around super people through Saint Francis Service Dogs. I was told that when you are partnered with a dog, you become part of the Saint Francis family. Sure enough, you do exactly that. I volunteer as much as I can for them, trying to give back just a little bit of what I've been given.

This led to being invited to join a book group whose members are all Saint Francis people; partners and their dogs, committee members, donators, and Carol. Carol is the most amazing person. She is the co-founder of Saint Francis Service Dogs. I was amazed to be invited to this book club, The Divas. I've always had a love of reading, and I always have two books going, but this is the first book club I've been in. There are two of us with MS, and we have become good friends.

Two years ago, before I was partnered with Montana, my world had shrunken to online friends and my dear friends who live in different parts of the country. I had become a hermit. DH would try to get me to go places, like social functions, and I would beg him to let me stay home. If we went, I would end up against the wall waiting to leave at the first opportunity. I was ashamed of how I looked to other people, walking with a rollator or forearm crutches. I didn't want people to see me like this, and I didn't want the usual remarks of "you look good" or "you're walking better than when I saw you before" or "my daughter's friend's mother has MS". Eeeeek! I can't stand pity, I didn't have anything to talk about to anyone, I just wanted to be in my safe little house.

Montana and the SF people opened up my world again. The first thing I did was get interviewed by the local newspaper. Meg (the reporter and interviewer) and I have since become good friends. Then, I did a couple of demos at grade schools. Those were lots of fun. Montana and I were filmed for a PSA commercial that runs throughout Virginia. I'm on the Outreach Committee, picking up phone messages and passing them along to my boss when people call to ask about getting a service dog.

I have taken a great interest in the outside world again. If the Tysabri continues to work and my balance continues to improve, I'm buying a pair of ice skates next month for when the indoor ice rink opens again next September. That should be something to see, since I haven't skated since 1969!!! I'll be sure and post pictures. However, I want to buy a pair of skates and hang them on the wall as a reminder of what I may be able to accomplish, thanks to my miracle drug.

Hello to all who read my blog, and thank you so much for taking an interest in it! hugs, maryann

Saturday, January 2, 2010

Tysabri Infusion #4

The third time was the charm, as they say. However, after about three weeks some of my MS symptoms returned. My arms got weaker, my tremors became as bad and irritating as they were before. I had my #4 infusion Wednesday, Dec 30. Things have calmed down again. My tremors are slight, and I've got the strength back in my arms.

It's been way too cold to take a walk for awhile now. We're in southwestern Virginia, and right now (4:30 pm) it's 22 degrees with a wind chill of 3 above zero. I haven't been to Yoga class in three weeks, but it is due to start up again next week. I try to do a lot of the exercises that we do in class, which I believe does help.

My husband has seven more injections of chemo left to get through, then two days after they're complete he will have a CT scan to see if any of this worked. He has been through some awfully bad times the past two weeks. I feel so bad, as there isn't much I can do for him except to listen to him when he needs to talk about all of this. Twice last week, we had to sit in the car in the hospital parking lot until he could get his coughing under control in order to drive us home. Twice, he's coughed so long and hard that it has made him throw up. He also has an itching, with no rash, that can pop up anywhere above his waist and last for hours. He has two anti-itch meds and four creams, but nothing works. He just has to live through it until it passes. He is weak, and has to lay down a lot.

If the Interleukin 2 protocol works, then he has to have it again three more times with a month in between each set of treatments. If it doesn't work, then we have to consider his options and make some very, very big decisions. Please keep him in your thoughts, prayers, or whatever you believe in that will send positive and good vibes to him. Thank you for reading this, for following my blogs, and for your support. maryann