azoyizes and MS

Feeling Better

2010-09-06T09:17:00.000-07:00

I was beginning to believe that my MS was going to stay at the lower level it was after all the steroids infused and taken. However, I am slowly getting back to my baseline.

My balance is still off, but home physical therapy is working on that. And, I'm faithfully doing my exercises.

My friend Julie, whom I've known since 1st grade, is coming for a visit Sept 19. She will be here for a week. Arnie will be on his 2-week Sutent break by then, and hopefully will be free of all of his symptoms. We plan on taking Julie up to Lexington by way of the Blue Ridge Parkway, which is an awesome drive. Rest and relaxation is top on the list.

October, we're going to NJ to visit my BIL and SIL. The four of us are going to rent a limo and go to New York City and to Brooklyn to see the kids and grandkids. NYC is top on my Bucket List. For $500, which we'll split, we get a limo and driver for 15 hours. Talk about traveling in style! We were worried about taking Montana on the train, then Rocky came up with this idea. Can't wait!!

November, my friend from Tucson is coming for a week. Gabrielle is interested in the Civil War, so Arnie has planned a 2-night trip to the Fredericksburg area for us. He's hiring a private guide to take him and Gabrielle around (I'm staying at the hotel with Montana--not a buff). But, there will be lots for me to see when they return. I haven't seen my friend in six years, but we talk on the phone every Sunday. Can hardly wait to see her!

Went Downhill and Can't Get Back Up

2010-08-26T11:11:00.000-07:00

I beginning to believe that my MS took a turn for the worse and I'm afraid that I'm not coming out of it. I had a 3-day course of IVSM the beginning of August. The following week, I had my 12th Tysabri infusion. The following week I had another course of IVSM, and now I'm in the middle of a 2-week Prednisone taper. My tremors, balance, leg weakness and fatigue are all bad.

Through Gentiva, the home health organization, I am now receiving home PT. Their plan is called Safe Strides, and it has to do with balance between your legs, feet, ears and eyes. Tuesday, I had a 2-hour assessment with my PT. Today, she is going to begin working with me. I will have two sessions a week for eight weeks, then I'll be reassessed.

I also will be starting back with my Yoga class next Thursday. We took a break during the summer, and are hoping that we have enough people show up Thursday to make a class. I've taken the MS Yoga for over a year now, and I think it is remarkable. Although, whereas Monty could help me get up off of the floor after relaxation, my legs are too week now to be able to do that. I'm going to need him and another person in class to help me up.

I'm thinking seriously about getting a small scooter that comes apart and will fit in the trunk. I want it mostly for around the house, though. I'm now using my Rollator to get around the house, but I still fall, even with the Rollator. I figure a scooter will be a help and not a step backward.

One good thing, the Celexa is working and my mood is pretty even. I haven't had crying jags or gotten mad at anyone.

We had our son, daughter-in-law, and two grandsons here for a long weekend. Things got a little hectic, as the two neighbor kids came over every afternoon to play, eat, and have fun. A couple of times, the noise and commotion got to be too much for Monty. Every once in awhile, he would go off and lay in the hallway or the kitchen. We had a wonderful time talking, laughing, and playing. They've moved from South Africa to Brooklyn, NY. They took the train from Brooklyn to Lynchburg (a little over an hour from where we live), and we picked them up at the train station. We have plans to meet them in New York City in October, and they want to come to Salem again in December. It is so very good to have them here!

Incompetent People Rant

2010-08-14T10:22:00.000-07:00

We have had a very busy, but frustrating week.

First off, I was to begin home physical therapy yesterday (Friday) morning. Thursday, I got a call from the therapist telling me that they were still awaiting approval from my neuro for physical therapy. I told her it was my impression that his office had sent in all the needed paperwork. She replied that they sent the orders for evaluation (which was done), but that they were waiting on orders for the therapy itself before they could begin. I told her to come out Tuesday, that I was almost positive the office would get the paperwork to her company by then.

My DH was to receive a shipment of two bottles of Sutent, the drug that he is supposed to be taking for his Stage IV metastatic renal cancer. He called the drug manufacturer, who is supplying the drug to him, Thursday. He was told that the woman taking care of the prescriptions cancelled the 50 mg prescript like she was supposed to do, but failed to turn in the two lower dose prescriptions. The person he spoke to said that they could mail the pills out Friday, and that he would receive them Monday or Tuesday. He mentioned that he was supposed to start the pills last Tuesday, so that would be an entire week wasted. So, they shipped them Friday overnight, and the package arrived early this morning.

I, and probably the rest of you, are receiving slip-shod help from a lot of the work force nowadays. It is pathetic, worrisome, and just plain makes me spitting mad. It seems that a lot of people out there don't care about doing their jobs correctly. You would think that in today's economy, people would do their jobs like they're supposed to do them in order to keep them. I don't know. What's your opinion?

SoluMedrol and Home PT

2010-08-10T10:25:00.000-07:00

First of all, I had a 3-day course of IV SoluMedrol last week because my MS was getting worse. It helped with my energy level and a little bit with leg weakness. The RN used something called a Mediball. It was the neatest thing. The solution is in a small ball, which is pressurized to deliver the medicine over a 1-hour period. The beauty is, you can stick it in your pocket and walk around--you are not attached to a pole IV set-up.

While the RN was here, she mentioned that I could get Physical Therapy through their company (Gentiva) to help me with my balance and walking. This morning, a physical therapist came out and gave me an assessment. She will be coming twice a week for four weeks, giving me tips and exercises to do on my own. Then, the company has something called Safe Strides. This is a program that works with your eyes, your ears and your body, to help you walk and stand better.

I have a good feeling about this. I've been falling more often, and running into walls and doorways. Of course, the tremors don't help my walking any.

I feel like a real mess!

Because of stress and the hot weather we've been having, I had an MS flare and I was getting depressed--crying, feeling very sad, and getting angry. My PCP started me on Celexa, which actually is doing a very fine job leveling out my mood. The only side effect I've gotten is dry mouth, which is no big deal.

Tysabri and SoluMedrol, and My Husband's Cancer

2010-08-03T06:16:00.000-07:00

Things haven't been going good here at my house. The Tysabri was holding me steady at my baseline (poor, but liveable). But, I've been under a lot of stress and we were in an awful heat wave for two weeks. I guess those two combined gave me an MS flare. Everything got worse.

I called my neuro, who ordered a 3-day course of IV steroids. My veins are becoming scarred and they roll and are very hard to infiltrate. Home health came, and the nurse tried one arm and the vein blew. She told me that she only allows herself two sticks before she calls in another nurse. That's the way the nurses are at my infusion center. Luckily, she got the port in my left arm and it stayed. They use these things called medicine balls. They are wonderful. The ball is pressurized to deliver SM over a one-hour time period. They're small, and you can even put it in your pocket and walk around with it. However, there was no time to do that, as the nurse had to ask me 1,000 questions. She was super nice, though.

My DH was started on a new cancer fighting drug. The side effects are bad and there are many. After the 10th pill of a 28 pill cycle, he had fatigue to where he could barely walk and shortness of breath. He's sleepy but can't sleep. He's hungry but can't eat much.He's having diarrhea, mouth ulcers, and chills. Friday, I told him to stop taking the pills and call the oncology nurse Monday. He called, she talked to the doctor, and then she called back and told him to stop the medicine for one week. They will probably put him on a lower dose, 20.5 mg I think. She did mention that some people get the side effects, even on the lowest dose. Sutent is what it's called, and it restricts the growth of blood vessels, hopefully shrinking the lung tumors. There are two more chemo drugs for his disease, then that's it. Unfortunately, his type of cancer is incurable. They can only hope to control it for a time. But if his quality of life is as bad as it was Friday, he may elect to discontinue all chemotherapy and take his chances, living a better life for as long as possible. I'm behind any desicions he makes. I would do the same if it was me going through this hell.

We had my BIL and SIL here for the weekend, and we had a wonderful time with them. By Sunday, DH was feeling better. Yesterday was better still. Oh, the worst symptom with this drug is what they call hand and foot syndrome. The skin on your hands and feet begins to break down and you develop tears, cracks and ulcers, to where you can't walk. That usually happens in the fourth week. You get two weeks off, then they repeat the cycle.

MRI, Tysabri, and Demo

2010-07-17T11:13:00.000-07:00

I had an MRI scan done this past Monday and the results were "no change", which is good. However, something is wrong with my veins. Now, whenever I get an IV, they have a very hard time putting one in. It felt like she was digging with an ice pick with the IV contrast needle. I should have said something, but I didn't. My head shakes so badly, even taking two extra Klonopin, that they have to put these big, thick pads over my ears before they put my head in the "helmet". It works, though. I also asked for earplugs, and nurse ice pick said I shouldn't need earplugs with the pads. I told her that I still wanted them, so she huffed off to get some. Needless to say, she wasn't the nicest person I've had the pleasure of encountering!!

Friday, I had my Tysabri infusion. I told my nurse about the ice pick nurse, and she said that I should have nicely requested that she try another vein instead of digging around in one spot. Since I'm there for nearly three hours, I told Arnie to take Monty home, and that I would call him when I was ready to go. We live five minutes from the infusion center. Anyway, when they got home, Arnie said that after he took off Monty's leash and vest and got him a drink of water that Monty went and laid in the hallway outside my bedroom and wouldn't budge from there until it was time to pick me up. Guess I'll let him stay with me from now on.

My husband and I are Reform Jews. I mention this because I got a call from a friend who works at the Temple where we are members. They were having summer camp, and she asked if I would do a demo for them. This was last Wednesday. There were 30 kids, ages 3-1/2 to 11. The demo went real well, except that I forgot the slices of string cheese that Monty will do just about anything for, and which I use during demonstrations. At one point, I had him do his commando crawl, then showed them how he helps me up off the floor. They clapped. Then, we did something that was outstanding. Arnie was sitting in the back of the room. I took Monty off his leash and told him to get daddy's hat. He trotted down the steps and down the isle, looking neither right nor left, picked up the hat and brought it straight back to me. We got a standing ovation for that one!

My Guys

2010-07-03T14:28:00.000-07:00

We had a wonderful visit with our two sons, dear daughter-in-law, and three grandsons last week. Scott, the youngest, and his family have finally moved back from South Africa. He is now teaching at a private school in northern Mass, then they will move to Brooklyn where he got hired as head of the Science Department at a posh private school. The boys will be able to attend the school, which is fantastic news.

Arnie and I went up to Charlottesville to meet his new oncologist. This is a very nice man, and we both liked him a lot. He (Arnie) will be starting on a chemotherapy drug on or about July 20. We are awaiting news on help for paying for the drug, as it's over $7,000 a month. It is in pill form, and has the side effects of causing bleeding from the nose and other orifices, plus it makes your hands and feet hurt, sometimes so badly that it becomes hard to walk. Then, they lower the dose. He will take this four weeks on and two weeks off.

The bad news is, the cancer he has--Stage 4 renal cell cancer--is incurable. They can hopefully prolong his life with chemo, but he will have to stay on one kind or another for the rest of his life. I am behind him all the way. I'm happy that he's decided to try another chemotherapy drug, but I will understand completely if he decides that his quality of life has deteriorated too much and he doesn't want to take any more chemo.

We went to see Othello yesterday at the Blackfriar's Playhouse. The building is a replica of Shakespear's indoor theater. It was fabulous! We're going to try to go maybe every other month to see a play there.

Next week, Arnie has scheduled a private guide to show him places that General Mobey was. We will do other things, but that day Montana and I will be on our own. We'll hang around the hotel, and take walks and hopefully sit outside. However, the weather here has been so darn hot--we had three straight days of 100 degrees! No rain in sight, so I'm having to water every day. I sure can't do as much with a water hose as a good soaking rain can do for my gardens.

Dear Husband

2010-06-14T19:12:00.000-07:00

My dear husband had his CT scans done, and we met last week with his oncologist. Everything has stayed the same except for one nodule that has grown from 4 mm to 11 mm. The oncologist recommended waiting two months and then repeating the CT scans to see if there was any more change. My husband told him that we want a second opinion, so he's arranged an appointment with a renal oncologist at the University of Virginia next week. We both will feel better getting a second opinion.

Monty's trainer rode 150 miles in the MS Bike Ride in Charlottesville last weekend. She said that the second day, she nearly gave up after 50 miles because it was so hot and humid, but that she kept thinking about all the people with MS who have Saint Francis service dogs, and that kept her going. She put our dog's pictures on her handlebars. We had a party for her today. Way to go, Connie!

Our two sons, DIL, and three grandsons will be arriving here Wednesday for a short visit. Our son and his family are moving back from Johannesberg to Brooklyn, where he got a job as the head of the Science Department at an exclusive private school. I always wanted to see Brooklyn. It will be so good to see them again!

I'm doing okay. My orthopedic surgeon released me to use our riding lawnmower, which I did Sunday. Our dear neighbors have been taking turns mowing our grass since my surgery, and it sure felt good to be able to get out there and do it myself for a change. Didn't bother my elbow at all.

These are some of the hollyhocks I planted last year in remembrance of my mom, who always had a bunch growing.

Cubital Nerve Decompression

2010-05-07T08:24:00.000-07:00

I had my elbow surgery done Monday, May 3, and everything went okay. The surgeon discovered cartilage covering and compressing the ulnar nerve, which he removed. This was good news, as it could have been lots worse.

One problem was that it took four sticks from two different nurses before they got my IV inserted correctly. Evidently, from all the IVs I've had over the years, the veins in my hands and arms have become ropy, lump, and nearly impossible.

Everyone was very nice to me. The surgery took about 1-1/2 hours, and I awoke with a splint, dressing, and a heavy Ace bandage going from the top of my hand to just below my armpit. The surgeon used staples to close the 3" incision. I'm to see him this coming Tuesday, when hopefully he will remove the staples, the splint, and most of the dressing. It's a pain in the arse do try to do everything one-handed.

Arnie cooked cream of wheat for supper the first night, as I had to eat bland food. He's in charge of cooking and washing dishes, so we're getting take-out the rest of the week because his cooking skills are very limited! That's fine with me.

Montana has to walk on my right side. I was a little worried because for 2-1/2 years he's walked only on my left except during practice sessions. What a trooper! He is walking on my right like he's been doing it all the time. He knows when what I ask him to do is for real and not just practice. What an outstanding dog he is.

We took him to Virginia Tech yesterday to have his eyes examined by an opthalmology vet. It's a free service offered once a year across the US for working dogs, including service dogs, seeing-eye dogs, police dogs, search and rescue dogs, etc. It's a wonderful thing they do for our dogs. Monty's eyes checked out perfectly normal, thank goodness.

We have a few more trips planned, including one up around Winchester, VA where we'll spend three days seeing different things. For one of those days, Arnie has hired a private Civil War guide to take him to different places in the area. Montana and I will hang around the hotel that day. The other two days, we're seeing things that interest both of us. Next week, we're going to Staunton, VA to the Blackfriar's Playhouse to see a Shakespear play, a comedy that for the life of me I can't remember the name of right now.

Before surgery, I got over half of my seeds planted and all of my plants planted. I've had to water every day, because it's been around 90 and sunny, but everything is looking good and I've already got seeds sprouting. I want to get a chickadee/nuthatch birdhouse, because they eat aphids. Last year, my hollyhocks and one other section of flowers were overrun with aphids. My neighbor is going to build bat houses and swallow houses to see if he can keep down the mosquito population. Maybe he'll build me a birdhouse, too.

Peace to all my friends.

Happy Birthday, Zachary

2010-04-30T08:27:00.000-07:00

Today is my son Zachary's birthday.

What do you say to people when they ask, "Do you have any children? How old are they?" It is a hard question for me.

Zachary died June 18, 1993. He was 13 when he died. He was at a wilderness camp, and he had a heat stroke. The head counselor tried his best to get him to a hospital, driving while trying to do CPR on my son at the same time. He drove this way for two hours until they reached a town that had an ambulance. Then, it was over an hour until they reached a town with a hospital. By then he was in a coma, and he died shortly after.

Zachary was a good boy, a sweet boy, and my baby. I have a daughter who will be 32 this year. We never see each other, but that's a whole other story. I still love her, though.

So when people ask how many children I have, I tell them that I have two. Then, I hope that the subject can be changed before I have to go into all the rest of my story. Not that I don't want to talk about Zachary, but I'd rather talk about him with family who knew him and loved him.

I remember when I had to start using a cane. My daughter was embarrassed and wouldn't walk beside me or anywhere near me, so that no one knew we were together. Zachary didn't mind, though. He was able to accept the cane and just see me as his mom.

Sweetheart, I miss you and I love you. You will always be in my heart and still a part of me. Mom

Feeling Groovy

2010-04-11T12:23:00.000-07:00

Yesterday, Arnie went to a Civil War gathering outside of Appomattox, VA, so Monty and I had the day to ourselves. I cleaned out one more of my little gardens and got the soil ready to plant in May. In the afternoon, I took Monty for a walk. It's a little hard on my own, but we managed. Then, we came home and I opened all the windows because it was 70 degrees. Finally, I opened an ice-cold beer, and sat and read while Monty took a nap.

Friday, we had Zipper over for the day. Zipper is a Saint Francis carreer-change dog. She was being fostered by Monty's foster family and hurt her leg, requiring surgery. That meant that she could never be a service dog. So, Kim adopted her. Monty and Zipper lived together for over a year while he was going through training. They get along great, still. We took them for a walk, played ball, and they chased each other around the yard. Since it worked so well, we're going to make it a regular thing.

I got a call from Nikki, the advertising director at SF. She said that since Arnie and I do so much for the organization, they want us to go to Putting on the Dog as their guests. This is the largest fundraiser SF has, and I was thrilled to be invited.

Today, I made Monty cookies, and then we took him for a walk. Cut it short though, because today it's 80 degrees without a breeze. Way to hot for me with MS and Monty in black fur to be out walking, not to mention Arnie who is just three weeks out from chemotherapy!

We have our lawnmower in the shop for repairs. The yard was looking awful, so Arnie asked our neighbor if I could borrow his riding mower. Ten minutes later, Jerry was out mowing our yard! I must point out that Jerry is two months out from a heart attack and open heart surgery, and two weeks out from hernia surgery. Amazing guy.

We had a wonderful Passover in NJ. Our son and one grandson flew in for the occasion. The weather was beautiful, and we all had a wonderful time. My BIL and SIL went with me to see Clash of the Titans in 3D. I loved it! It's been years since I've been to the movies!

My Daffodils are spent, but my tulips (see picture) are still beautiful. Our little Chinese Fern tree is covered in leaves. I worried about it surviving the winter, it's so small. I think all the snow we had acted as a ground saturation, and helped all the plants. Bye for now.

Tysabri Infusion #7

2010-03-27T08:32:00.000-07:00

This precious pup is Montana when he was about three months old, living with Linda and Jim, who were his puppy raisers.

I had my Tysabri at the new infusion center. I was there for 3-1/2 hours. First, either my new neurologist or the Tysabri people have added Tylenol and an antihistamine to the protocol. No one told me. I had taken a Zyrtec that morning and since it's an antihistamine and a once-a-day pill, they accepted it. They gave me a Tylenol, and then had to wait 45 minutes before they could begin TY administration. Now, I know to take one before coming in!

Since I was a new patient at the infusion center, there were a whole lot of screens to be filled in. Finally, the questions were asked and answered and the Tylenol was in my bloodstream. Gwen, my infusion nurse, got the IV in but then the vein blew. Second time, other arm, worked. So, after all that, there was still the hour of TY and the hour of normal saline, then 15 minutes of observation.

Arnie was able to take Montana for a long walk around the hospital grounds. Of course, when they returned, I still was waiting to be infused. We talked awhile, and I suggested that he go ahead and pick up the groceries we were going to get when we left there, take them home and put them up. Then, come back at 5:00, and surely I would be able to leave by then. That worked out okay, and saved us some time.

I'm all excited because Thursday we are going to NJ for Passover. Our son and grandson are flying in from CA to join in the celebration. Haven't seen them since Thanksgiving. My SIL has hired a caterer for the cocktail hour and for the Seder meal so that she can sit and enjoy the family instead of cooking for days like she did last year. She is a fantastic cook, but this will be much easier on her.

A friend of mine, Leigh Brill, has written a book titled A Dog Named Slugger that is due out next month. It is about her first service dog, and how he helped her get through graduate school. I can't wait to read it, and since she's in the book club I belong to, her's will be the next book we read and discuss. It is all very exciting for all of us at Saint Francis!

I hope everyone has a good week with lots and lots of sunshine and love.

Happiness is Helpful

2010-03-18T14:13:00.000-07:00

My husband is off chemotherapy for three months. He had a brain MRI and a bone scan today. If those are clear, then we can both relax until June. We decided to celebrate his release from chemo by taking a trip to Newport News, VA. Friday was yucky, cold and raining. We, however, were in the War Museum so the weather didn't bother us much. We had a lovely meal at Cheeseburger in Paradise. Arnold doesn't drink, so he had a delicious lemonade with strawberries floating in it. I had a margarita. We both had burgers.

This was kind of funny. The manager of CIB ran over to us and said he noticed we had a service dog, He explained that they had just gotten Braille menues and wondered if either of us could read Braille. We explained that neither one of us was blind, and that I used Monty to help with my balance and things like that.

The next day we spent four hours at the Maritime Museum, seeing things we didn't see on our last visit there. We also took a long, slow walk on the hiking trails there. It was a marvelous day with 70 degree weather and lots of sunshine.

I begin my Tysabri infusions next week at the new place where Arnold gets his chemo.

Happiness definitely helps the mind and the spirit. Does it also help MS?

New Neurologist

2010-03-03T11:38:00.000-08:00

I had an appointment Monday with my new neurologist. He seems nice, listened when I was talking, etc. I just have to get used to him, because I loved my old neuro so much and was so saddened to see him move across the state.

We went over my past MS history thoroughly. He did a complete neurological exam with the pin, tuning fork, finger-to-nose, and all the rest. I did the "drunk driving test" and only made it to my third step before I began to fall. He wants me to have an MRI sometime this spring, as it's been two years since my last MRI, and also because I started Tysabri last September. I told him that I also wanted to change my infusion center from where my old neuro was over to the one connected to the hospital, which is where my husband gets his chemo now and which is only five minutes from the house. He's already gotten the paperwork started on that. This neuro's office is right by the same hospital, so it's going to make things much more convenient.

We also talked about my tremors and if I thought the Klonopin was helping them. I told him I honestly don't think the med is helping, so he suggested I get off it slowly, decreasing it by 0.5 mg a week. I'm still to take it at night, as I take it for insomnia. It works great helping me to sleep the night through.

I had my 6th Tysabri infusion last Thursday. I had two good months, where both my tremors and my balance improved. However, three weeks after my 5th infusion they got worse and didn't improve this time. I know that Tysabri isn't supposed to be a miracle drug, that it's meant to keep your MS stable, but I was hoping that I would be one of the ones who got extra benefit from it. However, if it does just keep me stable I won't complain. Before Tysabri, while I was on Betaseron, my MS was going downhill so quickly that it was scaring me half to death.

The daffodils I planted this fall are up two inches! Now, that brought a big smile to my face!! :)

aha moment: coming out of my shell.

2010-02-17T05:52:00.000-08:00

aha moment: coming out of my shell.

Fantastic Doctor

2010-02-17T05:15:00.000-08:00

This is not an MS problem, but it ties in with yesterday's blog about good and bad doctors. By the way, the picture is looking toward Salem with the snow-covered Appalacian mountains in the background.

I have had numbness to the point of deadness in my little finger and ring finger and half the palm of my left hand for months now. Yesterday, I had an appointment with an orthopedic surgeon, and I was pleasantly surprised.

The building was huge, with lots of patients waiting, and 13 doctors in the practice. I figured it would take forever. However, I hadn't finished signing in when I was called back to the inner sanctum. Dr. Hagan walked in and introduced himself, asked if he could pet Monty, spoke to both myself and my husband in a pleasant manner, and was all-around very nice. He examined my hand, arm and elbow, then looked over the records my neuro had had sent over.

I was diagnosed with cubital ulnar nerve compression, which is going to need surgery to correct the problem. There are no guarantees that I will eventually regain the use of my two fingers, or the strength in my thumb (which was also affected), but I am not hesitating to have this surgery as soon as they can work me into the schedule.

Dr. Hagan will make a 3" incision over my elbow region, and adjust the nerve in the canal that it runs through where it is being compressed. He said it's possible that he will also have to do something (I forget this part) with the muscle that covers the nerve. The surgery will take about an hour, and it will be outpatient surgery, and I'll have to wear a splint on my arm for a week.

I'm hoping it's soon, because I want to get this over with and get fixed up. I'm having a very hard time typing, using only two fingers on my left hand when I'm used to using four. I also have a hard time gripping things, and drop things right and left. It's very frustrating. However, there is no pain--only the dead numbness.

The Good, the Bad, and the Ugly

2010-02-15T19:04:00.000-08:00

I was thinking back to all the neurologists that I've seen through these past 20 years. I knew something was definitely wrong, when one morning I woke up to find the entire right-hand side of my body numb. I went to my regular doctor who said it probably was stress and gave me some pills. Finally, I got in to see my first neurologist. He wasn't a very nice man. He ended up yelling at me that a person couldn't have "that many things wrong" and I quit seeing him.

My next neurologist came highly recommended. He wanted to do a spinal tap, said he never used anything to numb the area. Like a dumb sheep, I went along with what he said. Well, he missed the first time and had to re-do it. By then, I was laying there sobbing. When he eventually told me that it wasn't MS, that it was all in my head and he had a friend who was a psychiatrist, I quit going to him.

I finally found an internist who was willing to sit and listen to me. He took one symptom at a time and worked with it. He followed me clinically, then sent me for an MRI which showed plaques. What a relief!

My last neurologist was an outstanding doctor and person. I saw him for three years. He diagnosed me as Secondary Progressive, and also agreed that I needed to begin Tysabri. Unfortunately, he moved to another part of the state the end of December.

I'm scheduled to see a new neurologist the first of March. I've heard good things about him, that he takes the time to sit and talk to you, and that he cares about his patients. I sure hope so! At least, all he'll have to do is pick up where my last one left off since I'm diagnosed and on treatment.

I've learned that I don't have to do what a doctor tells me, I don't have to take sh*t from a person just because he has an MD after his name, and I know my body a lot better than they do.

Falls and Tremors

2010-01-31T09:43:00.000-08:00

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

2010-01-21T10:18:00.000-08:00

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

2010-01-02T13:22:00.000-08:00

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

2009-12-26T11:55:00.000-08:00

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

2009-12-09T08:43:00.000-08:00

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

2009-11-15T12:28:00.000-08:00

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

2009-10-31T10:06:00.000-07:00

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

2009-10-19T18:47:00.000-07:00

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!

2009-10-13T08:38:00.000-07:00

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

2009-09-26T09:58:00.000-07:00

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

2009-09-23T11:05:00.000-07:00

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

2009-09-12T08:46:00.000-07:00

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

2009-08-15T12:59:00.000-07:00

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

2009-07-05T08:48:00.000-07:00

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!

2009-05-24T09:44:00.000-07:00

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

2009-05-04T11:27:00.000-07:00

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

2009-04-20T09:34:00.000-07:00

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

2009-04-07T09:31:00.000-07:00

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

2009-03-29T13:38:00.000-07:00

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.

Mentally Feeling Pretty Good

2009-03-14T20:41:00.000-07:00

It's strange. Even though my body feels like it's falling apart and pieces of it are giving out on me, I've been in a super good mood. I know that a lot of it has to do with the fact that my husband Arnie survived kidney cancer surgery and is doing better every day, but there are also a lot of other things that have been making me feel good.

The day before DH's surgery, our son and his wife had a baby boy. Joshua Samuel is their second child, and our fourth grandson!

Due to the fact that Arnie has diabetes and now only one kidney, and he dislikes most vegetables, we had to come up with some new, healthy meal plans. My wonderful SIL sent a big batch of soup recipes, along with a Cuisinart Smart Stick to make creamy soups. I've made two batches of garden vegetable soup, a huge pot of split pea soup, and a pot of veggie soup that has navy beans, grean beans, and onions. Everything has turned out very good, I'm following the recipes exactly and very carefully. This has made me feel good that we're both eating healthy meals and I'm cooking soup that tastes fantastic. It has given me more confidence in the kitchen!

I got my hair cut the shortest it's ever been (it's 1/2 inch long on the top of my head, and shaved closer in the back), and I absolutely love it! It's very thick and straight, I could never do a thing with it as far as styling goes, so this is as easy as it gets.

I've been going to Yoga and riding my stationary bike a couple times a week, losing weight, and basically eating right.

I also taught Montana how to Commando crawl across the floor. Of course, he could never sneak up on anyone because he makes so much noise doing the crawl, but it's loads of fun for both of us.

MS Yoga and Lunch with a Friend

2009-03-06T12:06:00.000-08:00

In January, I found out about an MS Yoga class that was available in my area. I signed up and began taking the class, and I'm so glad that I did. Most of the people in the class have MS, the others have some sort of limitation that precludes them from taking a regular Yoga class. Our instructor is 70, has taught Yoga for 40 years, and is just the sweetest woman you would want to meet and know.

Most of the exercises are done while sitting in a chair, although some of us get down on the floor for a couple of the exercises done toward the end of class, and for the relaxation portion. Montana loves the relaxation portion of the class. I lay down on a rug, and he lays as close to me as is physically possible with his head laying on my stomach. That, in itself, is comfort to both of us. Then, when it's time to get up off the floor, Montana stands close beside me on my left, still as can be, and I'm able to brace myself on him in order to stand up. Without him, I would either have to ask someone for help or not get down on the floor at all. It still amazes me that he adds so much independence for me. After class I feel great, much more loose and relaxed.

Today, DH and I had lunch with a friend of mine who is a reporter for our local newspaper. Meg and I met last March when she did an article about Montana and I. At the time, I was scared half to death. I'd never been interviewed for a newspaper article before! After about five minutes, she had me relaxed and laughing, and I was able to forget to be scared and shy. We had a nice lunch with good food, good conversation, and lots of fun.

Exhausted but Proud

2009-02-07T17:45:00.000-08:00

My husband had major surgery January 28. We found out January 23 that he had a cancerous tumor in his right kidney, and we were told that the kidney had to be removed. CT scans and bone scans showed no spread of the cancer, thank God. My dear brother-in-law flew in the day before the surgery to be with us. The day he had to go home, my husband's cousin flew in to be with us until the day after Arnie was released to come home.

Arnie was in the hospital three days. His recovery has been amazing. We are both very grateful that things are going so good and that he is slowly feeling better.

Our positions changed the day of surgery. I became his caretaker, where he has been mine for so long. It has been tiring, but I am very proud of myself. I can't drive and he isn't allowed to drive for two more weeks, so I've had to arrange and coordinate friends and neighbors to take us places. I'm doing all the laundry, taking out the garbage, getting the mail, cooking (some) and cleaning. I've also done some of the grocery shopping and banking. And, like before, I take care of Montana's needs and my own.

I don't like to be in charge of things, I'm always afraid I'll make mistakes. So far, so good.

Montana and I stayed with Arnie in his hospital room every night. It gave all three of us a little comfort to be together. I also feel that when someone is at their most volunerable, they should have another person there to look out for them.

This has been a terrible time in our lives, but I have grown some because of it. I've discovered that I can handle things, and not do too bad a job of it, either. That has made my self-confidence rise a lot from what it was.

Hopefully, he will continue to heal and continue to remain cancer-free. I love this man who is also my friend, and I want him around for a long, long time.

DMD=Disease Modifying Drug

2009-01-20T06:16:00.000-08:00

I have been on Betaseron for 2 1/2 years now. I don't think it's helping me, but my neuro is advising me to stay on it. The doctors say that without a DMD, you may get worse now or in the future. But, they can't prove it. So, my plan is to continue taking Betaseron until September. That will put me at the 3-year mark. Then, I will assess my situation and decide whether to discontinue it or keep taking it.

All the MS DMD's are injectibles, there is no pill form. I've been on three DMD's in my MS-life. The first was Avonex. Avonex is only taken once a week, but you have to inject it into a muscle in your thigh. I did it for a year, then I could do it no longer. To me, the needle kept looking longer and longer--until it looked like a damn railroad spike!

The second DMD I was on was Copaxone. I took Copaxone for five years. That is taken every day, the needle is short because it's given subcutaneously, and the side-effects were minimal. At the end of five years I felt it was doing me no good, so I stopped it.

There is also Tysabri, which is a once-a-month IV infusion. There have been deaths related to it, there is no way I would take it.

Betaseron is an every-other-day injection, and it's done subcutaneously. With my next shipment in Feb., I will receive the new syringes that have a much thinner needle. That will be nice!

Arnie now gives me the Betaseron injections. Due to my MS tremors, I was finding it harder and harder to do the injection myself. I use what's called an Autoject, which is a device that you cock and insert the syringe into. You press it to the site you want to inject, then you push a button and the Autoject does the injection for you. The last time I tried an injection myself, when I went to remove the needle from my arm my hand jerked and the needle cut my arm. It was then that I took a 2-week break, and then asked my husband to start doing my injections for me.

My husband cannot stand the sight of needles. He is what we call a needle weenie. However, with the way my injections are done, he never has to see the needle. It took a little bit of time, but he has become a great injector.

Introduction To My Disease

2009-01-19T08:31:00.000-08:00

This blog is going to be about me and MS (multiple sclerosis). I was diagnosed with MS in the early 1990's, shortly after my husband and I were married. So, he has been through the entire experience with me. Arnie is an amazing husband, friend, and caregiver.

The first symptom appeared as numbness. One day I woke up to find that I was numb on my right side, completely numb. It was like someone had drawn a line down the middle of my body, even the right side of my tongue was numb. A lot of tests were run and two neurologists told me that nothing was wrong with me, that it was all in my head. Finally, I found a doctor who would listen to me. He watched my progress and then sent me for yet another MRI scan. With that, I got the diagnosis of multiple sclerosis.

The years passed. I began to lose my balance more and fall more. My arms got weak, then my legs got weak. I had to start using a rollator (a walker with four wheels) or two forearm crutches to ambulate.

Four years ago I found out about St. Francis Service Dogs, and I applied for a service dog. (See azoyizes.blogspot.com for Montana/Monty stories.) One year ago, I was matched with Montana. He has changed my life, and I love him to pieces.

In October, I developed optic neuritis in my left eye. My ophthalmologist (I've since gotten a new one) diagnosed my problem as dry eye. One month later, I had 48 hours of intense pain and blurriness in my left eye. It was then that I was told I had optic neuritis. In December, my neurologist prescribed a 3-day course of IV Solumedrol (steroids). That cleared up the blurriness for the most part, and the pain.

In December, I developed tremors in my entire body. It became hard for me to even feed myself. I did some online research and found out that they have weighted cutlery, so I ordered a soup spoon, a teaspoon, a knife and a fork. They help. I also discovered that if you use wrist and ankle weights, they will help control your tremors. So, I ordered 1.5 lb weights for my wrists and 2.5 lb weights for my ankles. They also help.

I am determined to keep walking as long as possible. Don't get me wrong, this disease kicks my butt sometimes and gets me down. But, you have to get back up and keep going. I do that with the help of Arnie and Montana.