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.

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

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

Hanging on by My Fingernails

That's what I'm beginning to feel like. Since this is an MS blog I will tell you about my MS first, then I will move on to other things.

My next Tysabri infusion is scheduled for Wednesday, December 30. During the past week and a half, most of my symptoms have come back. My tremors were down to just a slight shaking of my head, and now they are full-body tremors once more. My arms are weak again like they were before my 1st treatment. However, I'm still walking without walking aids--except, of course, Montana. My balance isn't perfect, but I haven't fallen in quite some time now.

I had an EMG nerve conduction study done on my left arm, because the two last fingers on my left hand are totally numb and useless, my hand is very clumsy and doesn't work right. The neuro (who is leaving and moving to northern Virginia at the end of this month) has given me a referral to an orthopedic hand specialist. I have either a trapped nerve in my elbow region or a lesion. That will probably involve surgery, but that is definitely going on hold until we get Arnie taken care of.

We just got back from a nice walk. The streets are clear, but there are still very high piles of snow from the snow plows, and most of the snow that hit a week ago last Friday hasn't melted. Our stree has become a major street, with delivery trucks and 18-wheelers going awfully fast up and down it. Luckily, I'm friends with a woman who lives up by the golfcourse, which is a five minute drive from our house. She has told me to park in their circular driveway any time we take a walk and to walk in her neighborhood, which has a very small amount of traffic--and almost everyone drives slower there. I can't begin to tell you the feelings I get to be able to join in the walk with Arnie and Montana!

My dear husband is halfway through his chemotherapy. His symptoms are diminishing daily, which is quite a relief for both of us. He still has the cough, but it's much better. We'll just have to see how he does Monday after a 4-day rest from the shots due to the Christmas holiday. He is 85% sure that he will finish this round. After we get the results January 18, we will have to make some major decisions. I love him. He is my best friend and lover, and we've been married for 21 years; however, if he decides on no more therapy I will be behind this decision. So, we shall see. Because of the cancer returning so quickly, our son Scott and his family have decided to move back to the States from South Africa. That is a very good thing, as they've lived in Africa for three years now and we miss them like crazy. The picture I've posted is Lenny, our dear daughter-in-law and Scott, our son, Albert and Alex, our 6-year-old and 10-year-old grandsons.

We had two scares with Montana in the past three weeks. The first was a pinched nerve in his back, which was treated with pain pills, muscle relaxers, massage, and warm heat to the area. Then, he began vomiting every day. I called his trainer who said it sounded like Empty Belly Syndrome, which is when the dog's stomach is empty and begins to fill with bile, which makes them throw up. After increasing his food some, adding protein to his snacks, and giving him a handfull of kibble at night before bedtime, it cleared up.

So I am holding on by my fingernails, hoping and praying that things get better and that the chemo works.

Tysabri #3

I have a lot to write about this week.

First, my last Tysabri infusion was December 1. That evening, I noticed that my balance had improved somewhat. I was no longer running into walls and doorways. As of today, my balance is as good as it was five years ago--that's when it began to get bad. Three days ago, I took my first walk with my husband and Montana. That made both of us very happy; we had grins on our faces. It wasn't easy, and halfway through the walk my legs got shaky, but that's because my legs are weak. A walk with Montana and Arnie has been a dream of mine since he came to live with us.

My tremors have also improved. However, we don't know if it's because my neuro adjusted my Klonopin dose or if it's because of the TY.

I have energy again. Instead of sitting like a big lump in my chair, I'm able to get up and do things around the house.

Second, Arnie had a CT scan and he now has cancer in his lungs. The oncologist said that it probably has been there for a year (he had his kidney removed in January due to cancerous tumors), and that the cells traveled through his bloodstream from his kidney to his lungs. However, it took them awile to get large enough to be picked up on CT scanning. Monday, he began chemotherapy. It's called IL-2, and it's given by injection five days a week for six weeks. Then, they will take another CT scan. This only works in 15% of the patients with cancer like his. If it doesn't work, then we will go to a large teaching/research hospital, either in Charlottesville, VA, Raleigh-Durham, or Winston-Salem, NC. We want the best, and we're afrad that the small hospital here in Salem can't give him the best. I think he's going to be one of the 15% that this works on--I've got to think that, because the alternative is not good.

Third, we went to New Jersey for Thanksgiving, and we had a marvelous time. Our son, DIL, and two grandsons were able to fly in from LA to be with us, and that made it even more special. The picture I've posted is Aaron, Arnie, and Montana in Ocean City, NJ (my favorite place to be).

Things I Miss

MS has made me feel grateful for the things I can still do. And, because of the complications of this disease, I qualified for my wonderful service dog, Montana. However, because of the complications of this disease, there are a lot of things I can no longer do.

I can't take Montana for a walk. That is top on my list of things I would most love to do.

We used to live in Arizona, and we hiked a lot. A place called Sabino Canyon was my favorite, where we would walk up four miles and then back down four miles. I could hardly move the next day, but I felt so very healthy out there on those trails.

I can't drive a car. Driving is huge part of your independence, and it is awfully depressing to lose that ability.

I can't play Frisbee with my grandsons. Of course, it's moot since they live in South Africa now!

I can't walk without Montana on my left and a forearm crutch on my right. It's amazing just how much you take walking for granted until you either can't do it at all, or you have a very hard time doing it.

I'm still waiting for the Tysabri to kick in and give me back at least something that I lost. Maybe next month.

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.