MS and ME

New, Not Pleasant Surprises Plus Family Visit

2012-01-11T12:41:00.000-08:00

These are my adorable grandsons. Alex, on the left, is 8 years old. Albert is 12 years old. They are two of the sweetest, kindness and funniest kids I know. They and their parents took the train down from Brooklyn to visit. They just happened to come on the first night of Hanukkah. This is the first time we've been able to celebrate at least part of the holiday with them. The third night, I let them help me light the candles. Grandpop gave them money for gelt (gifts).

While they were here, we taught them and Scott and Lenny how to play Blokus. After Alex had played it once, he was already thinking ahead four moves at a time. So, we played, talked, laughed, and generally had a wonderful time. It's always hard to see them get back on the train to go back home.

I went to an MS Specialist in North Carolina yesterday. My neurologist here felt that there was something else going on besides MS. We drove the 3 1/2 hours down, which was exhausting to both of us. Arnie has a sinus infection and is on antibiotics. He has an awful cough that is wearing him out. Traveling wears me out. Monty stretches out on the back seat of the car and naps. We stopped once for a potty break for the three of us and to pick up sandwiches, which we ate sitting in the car.

Once checked in, we were taken back to an examining room. I had brought my last two sets of MRI's, as ordered. The doctor is a very nice man. He has two chocolate Labs, so was delighted to meet Monty. He sat and asked me a lot of questions, did the normal neuro exam, and then looked at the MRI's.

He told me that I had had a stroke in the past, and that is why my memory is so poor and my brain doesn't work like it used to. It was a shock. However, I was worried that it was Alzheimer's like my dad has, and figure a stroke is a lot better than that.

He also said that I have disks in my cervical spine that are indenting my spinal cord and that I will need surgery soon. He is sending me for another MRI of the brain and cervical spine, and then I'm to see him again the middle of Feb.

We drove home, stopping once to potty and feed Monty, getting home at 5:30 pm. What a very long day it was. I kept falling asleep in my chair until we went to bed. Monty was happy to be home. Arnie actually watched part of a movie that I slept through.

So, we shall see what next month brings.

Peace

2011-12-04T07:33:00.000-08:00

I am trying to attain peace. It's working a little bit. Monty is helping me a lot.

I've started a class at our temple that involves lots of reading and studying, which is great for the brain.

I had an appointment with my neurologist this past week. Arnie sat in on it in case I forgot to mention things. He told doctor how I was getting more forgetful. We can have a conversation, and in a few minutes it is gone from my mind like we never had it. I am scheduled for blood work, and will see an MS specialist in North Carolina next month.

My legs are weaker. Friday I had a lumbar MRI to see if that part of my spine has become compromised. Doctor said that can cause bilateral leg weakness, among other things. I have no real back pain, just occasional twinges.

So far, we have had a mild Autumn. It's freezing at night, but it gets up into the 50s and sometimes the 60s during the day. I am trying to walk as much as possible around the yard picking up dog poop, and around the house. Use it, don't lose it.

Prayers, Thoughts, Hugs Needed

2011-11-16T07:06:00.000-08:00

My dear friend Sue's sweet service dog Daisy has an aggressive cancer, and they're only giving her about two weeks to live. Daisy is only ten, and Sue has only had her for eight years. Sue and her husband are giving Daisy pain meds and keeping her comfortable, and lavishing love on her.

Please take a moment to pray, send thoughts or hugs to Sue and Daisy.

Thank you,
Mair and Monty

Happy Things

2011-11-12T07:52:00.000-08:00

Yesterday, I had an appointment with my orthopedist. Earlier this week, I had an excruciating pain in the palm of my left hand. Come to find out, it's bursitis. I was given a padded wrap to wear during the day. No meds, no shots, just a wrap that will hopefully work wonders on my hand.

We've had a beautiful buck coming to our lower back yard. Monty and the buck have been having staring contests. At first Monty barked like crazy at him, but the buck just stood and stared at him. It's fun to watch a beautiful dog and a wild buck looking at each other through the fence.

Tomorrow is the Saint Francis graduation. Two of my dear friends are graduating. They were partnered last year with Golden Retrievers who are brothers. Midas and Pico. When Monty and I graduated four years ago, there were only five of us. Because of the beautiful kennels they built at the farm, and because of the kennel manager they hired to work nights and weekends, they are able to put more dogs through the program and match them with people who need a service dog. I always take along extra Kleenex, because the ceremony is very moving and I always cry. Hell, I cried during our graduation.

Watched a wonderful documentary last week. Buck is about a man named Buck Brannaman who is the original horse whisperer. If you get a chance, watch this. We got it from Netflix.

Trip

2011-11-04T05:14:00.000-07:00

The first picture is Monty playing Cujo. Second is Fredericksburg, VA. Third is Monty laying with his head on his backpack during the tour. Fourth is Arnie and I clowning around with our side of the pumpkin.

We took a trip last week, stopping in Fredericksburg, Virginia for Arnie to visit battlefields in the area. We spent the night in Warrenton, VA, then continued on the next day to Margate, New Jersey to visit my BIL and SIL.

We had a wonderful visit. Bev had hurt her foot in yoga class and was diagnosed with a chip fracture of her big toe. She and I mostly sat and talked, as neither one of us was up to walking. Saturday, the weather was awful with a high of 40, strong winds, and pouring rain. Poor Monty was the only one who went outside that day.

Sunday it was still cold, but the wind calmed down and it was sunny. Arnie and Rocky walked Monty to the beach. They had fun playing don't-get-your-feet-wet.
Monday, we carved a pumpkin~~a two-faced one. While drawing and carving, we watched Dracula Rises from the Dead. It was good but not scary.
Tuesday, we drove home.

I am 75% of the time using my wheelchair now. We are going to order an ultra-lightweight WC in the next week, 15 lb. versus the 35 lb. one I'm now using. It's just too hard for Arnie to load it into the trunk.

Bad News, Good News

2011-10-20T09:09:00.000-07:00

The IV SoluMedrol didn't work, as my legs are slowly getting weaker. Damn, it was such a disappointment. I'm having trouble getting up off the floor with Monty's help, even though he does as much as he can. I have to make sure that Arnie is in the area before I get down on the floor to groom or pet Monty, so that both of them can help me back up.

We went to Charlottesville yesterday so that Arnie could have a CT scan of his chest, abdomen and pelvis. He also had blood drawn. We then walked across the street to the hospital cafeteria. We had a nice lunch, then headed back across the street for his doctor's appointment. Actually, he doesn't have a doctor any more. He has a nurse practitioner. Both of us were mad about it, and he was going to insist on a doctor or go somewhere else.

The NP was very nice and very well-informed about his case. We both immediately liked her and felt that Arnie was in good hands. She went over the CT scans with us. All the nodules were the same with no changes except for one that may or may not have grown, depending on the slice that was measured. His blood counts are good to fair, but livable. His blood sugar has been high, even with 28 units of insulin a day. She said that she wants to see him back, not in six weeks but in three months. What a relief!

The drive home (2 1/2 hours) was mostly a nightmare. It rained heavily most of the way home. We went through a patch of dense fog for a couple of miles. We were driving behind a big truck when we saw it go over the line and almost crash into the big truck driving beside it. Luckily, that driver was paying attention and he moved over to the median. I just sucked in my breath and held it until we could get past the two trucks. That's what I hate about I-81--it's always loaded with big trucks whose drivers are driving fast, tailgating cars and other trucks, maybe dozing off. It was a relief to get home!

IV SoluMedrol Monster

2011-10-12T03:13:00.000-07:00

Before I begin my main subject, this is Monty taken at the Saint Francis Farm during Dogtoberfest. The weather did not cooperate. It was 55 degrees, windy and cloudy. I helped work the Doggy Day Spa, collecting tickets from customers, for 2 1/2 hours. However, I did have a very good time meeting new people, seeing friends, and meeting a whole lot of dogs. This is my fifth time volunteering at Dogtoberfest. My friend Sue and her dog Daisy usually work with me, but Sue wasn't feeling good and couldn't make it. I worked with a very nice girl who was attending Hollins University.

My legs have been getting weaker. My neurologist prescribed a 3-day course of IV Solumedrol--the first of which I had yesterday afternoon. Normally, I have very mild side effects from this. However, this time it it me litterally right between the eyes. I got a headache yesterday evening behind my eyes and eyebrows. I took two Nuprin, which worked for a few hours. I have a port, which is where they access my body for infusions. The needle is 1 inch, and is painful when they insert it. My nurse left it in yesterday. I took my nightly Klonopin before bedtime but had a difficult time going to sleep, dozing off an on until 4:30. I then took Tylenol and one tamazepam. I finally got up at 5:30, hoping to take a nap later this morning. I'm going to do things differently today, and maybe it won't be so bad. I'm hoping like hell that this works and my legs eventually get stronger.

I am scheduled to see an MS specialist in North Carolina the first part of December. I am trying to stay positive about this, as my regular neurologist wants me to try a specialist again. We'll see how it goes.

Charleston, South Carolina

2011-10-09T11:18:00.000-07:00

My husband, me and Monty took a trip down to Charleston, SC. Other than it being hot and humid, we had a very nice time.

We stayed at a B&B that was near a lake, where Arnie took Monty for a walk three times a day. We took a boat cruise out to Ft. Sumter, then went to the Charleston aquarium. We went to the Exchange building and dungeon, and to two museums.

I ate fish and shellfish every day but the last, when we went to Five Guys for their wonderful burgers and fries.

We were exhausted but happy when we finally got home early Thursday evening.

We've decided that that is going to be our last long trip, except for visiting Rocky and Bev twice a year. I have no energy because of my MS, and Arnie has little energy because of his chemotherapy. We are going to limit ourselves to day trips, which will be much easier on us.

Little Things Keep Getting Taken Away by MS

2011-06-13T12:45:00.000-07:00

First for the good news. Arnie, Monty and I went to Margate, NJ to celebrate his 70th birthday. A total of 25 relatives, friends and grandkids came to celebrate with us. The top picture is Minette (friend since high school), me and Julie (friend since 1st grade). We all had a wonderful time.

I am taking my final two weeks of physical therapy. Arnie put up hand rails in the hallway to also be used as parallel bars. I bought an exercise ball today. I'm able to do all of the exercises they've shown me except for the stationary bicycle. My strength still has not improved, but I'm going to continue the exercises. I need to lose a lot of weight.

For two years now, I've had four little gardens where I planted flowers and vines. I'm no longer able to clean them out and care for them. I really hate that, but I don't have the energy. I'll plant seeds in pots on the deck because that's all I can manage.

I will miss gardening and producing beautiful things. Just as I miss a lot of the things this damn disease has taken from me. It doesn't do to get angry, so I'm going to feed my dog and pour a glass of wine or two.

Friends

2011-05-19T11:01:00.000-07:00

Friends are very, very important to me. I had a hard time making friends when we moved to Virginia. I didn't work, didn't belong to a club or anything like that. After I applied for a service dog and was matched with Monty (that's Monty on the left, and my friend Carol's Midas on the right), he opened my life to making friends here. The Saint Francis Service Dog employees and volunteers are like one big family. When Monty and I became partners, I became a family member also. Everyone is so nice, friendly, willing to help in any way they can, and very caring about both the human partner and the dog partner. Carol was the co-founder of Saint Francis. She worked for five years out of her home, hiring trainers, etc. until they were able to buy a horse farm with offices and kennels.

I have spoken about Monty before on my blog. He has given me back my independence, standing beside me when I need help with my balance, getting me up off the floor when I fall or if I am sitting grooming him, as I am unable to get up by myself. Monty is so very good, with a wonderful attitude, and a gentle soul. I feel blessed that he is my dog and my partner.

Taken off of Tysabri

2011-04-19T12:29:00.000-07:00

These are my two grandsons, Alex (8) and Albert (12). They came, along with their parents, for a visit in March. We had a wonderful time with them. Behind them in the picture is the Roanoke River. We were all walking on the Greenways, a very nice asphalt walkway that goes through Salem and Roanoke.

I had MRI scans of my brain, cervical spine, and thoracic spine taken with and without contrast. Following that, I had a visit with my MS specialist neurologist last week. He said there were no changes since my last MRI. However, in a blood test taken the first of March, I tested positive for the virus that causes PML in people who are on Tysabri. Dr. S told me to discontinue my T infusions for now, but to not have my port removed.

Because of my tiredness, sleepiness and fatigue, he is weaning me off of the Flexeril and Baclofen that I had been taking. If my muscle spasms come back and are too painful, I am to start taking the meds again.

He did a lumbar puncture, which was my second in 20 years. There was a problem gaining entry, and they ended up having me sitting on the exam table, with my arms extended over a walker, and my chin tucked into my chest. That opened the area up and the LP was done. I also had to go to the lab, carrying the fluid from my spine, and have blood drawn.

I will also have a sleep study done because I am overweight and I snore. Then, I will also begin Physical Therapy.

That's an awful lot of stuff. Dr. S seems to think I have another disease along with my MS. He mentioned Primary Progressive MS, and he also mentioned Parkinson's Disease. I hope I'm negative for both of those!

We're going to Margate, NJ to celebrate Passover with Arnie's family. Along the way, we are stopping in Philadelphia to visit a friend I met on Facebook. I am so looking forward to seeing Rita in person, along with her little dog Jake. Can't wait to see the family and be with them for the Seder. This will be a pleasant trip for all of us.

MS Specialist

2011-03-20T06:48:00.000-07:00

My neurologist here in Salem referred me to an MS specialist in Charlottesville. As I have never been to one, I was intrigued. We drove the 2.5 hour drive to C and I checked in. After getting weighed (ouch) and BP taken, we were shown to an exam room. I wanted Arnie to be there to help me with questions and to help remember what the doctor said. Of course, Monty was with me also.

After a few minutes, Dr. Scagnatti entered the room and shook our hands. I like him a lot. He was with us for 50 minutes. First he did a complete MS history, then a thorough neuro exam. He then asked if I would be able to walk in the hallway without Monty and without my rollator. I told him I could do that as long as I could walk close enough to the wall to catch my balance.

I was asked to walk normally--for me--while he watched. He then had me stand and told me that he was going to give me a push (or a pull), I can't remember which. He said try not to take more than two steps backwards. He did it twice, and I took six steps back. I forgot to ask what that was for.

He then sat and talked to us. He asked if I agreed to be in the Touch program, which is a clinical trial for people taking Tysabri. The check for the virus that causes PML, the brain infection for which there is no cure. I signed the papers. He then said that he wants me to have an MRI scan of the brain, cervical spine, and thoracic spine to check for new lesions. That is scheduled April 1, then I have an appointment to see him the second week of April. He also said that during that visit, I will be assessed by the physical therapy group there.

Since Arnie goes to Charlottesville to his oncologist, we will be making the trip now more than once a month. That's okay, it's just 2.25 hours from home.

I'm glad Dr. Scagnelli wants to see me back again at regular intervals. I expected for him to say to come back in six months or so. I really really like him, and so does Arnie. That gives me peace.

MS Meeting

2011-03-01T09:45:00.000-08:00

This is my very good friend Gabrielle standing in our back yard. She came to visit us in November, and we had such a wonderful time together. We hadn't seen each other since we moved from Tucson, which had been nine years ago. However, we do talk on the phone every Sunday evening for around two hours. I think that keeps us close.

Last week I went to my first MS meeting in over 15 years. A friend from my Yoga class got me to go. I walked into the room expecting to know two people; however, it turned out that I knew/was friends with/had met eight of the people at the meeting. It lasted two hours, and the time flew by. They all had to pet Monty. It made him act up a little, but I could hardly say no.

The speaker was Darren Ball, who runs the Blue Ridge Chapter of NMSS. He talked about all the programs they have, and showed us how to look it up on a computer. They are having a Couples Retreat at The Breaks, which is a retreat located on the Virginia/Kentucky border, which is supposed to be breathtaking. However, they only take 30 couples, so I hear it's hard to get in. I'm going to try!

I changed my way of eating--I was putting on pounds so quickly that it was disgusting. I joined a website called MyFittnessPal, which was recommended by my sister-in-law. It's a great site, and I highly recommend it.

After raining all day yesterday, today it's 50 degrees and sunny. We sure needed the rain. My daffodils have buds and my tulips are up a couple of inches. I hope we don't get any more freezing weather, because it looks like the trees are getting leaf buds. Can't wait to begin planting! I love to dig in the dirt and plant seeds and have them grow into herbs and flowers.

That's all from me. I hope everyone has a wonderful day.

Birthday Celebration

2011-02-13T11:20:00.000-08:00

Friday, February 4, was my 60th birthday. We drove (9 hours) to my brother-in-law and sister-in-law's in Margate, NJ. My SIL, Bev, is a gourmet cook. She fixed melt-in-your-mouth brisket, mashed cauliflower, and homemade bread. Before we ate, we had cocktail hour. I had a vodka with a twist and olives. With the meal, we had a wonderful red wine. After dinner, Bev brought out a small B-day cake with candles, and served it with chocolate ice cream. Then, I got to open my presents. I had requested all of them, but I had to act surprised when I opened them. I got a CD/DVD of Andrea Bocelli singing the Christmas songs that he sang on his PBS special. Also, I got the Under the Tuscan Sun DVD. Finally, I got candles. Unfortunately, two of my favorites make both Arnie and Monty sneeze!

My MS was acting up, as I was in my third week after last transfusion. Now that I've had my 18th transfusion, things are getting back to baseline. I'm still going for walks with Arnie and Monty, except if it's too cold or too windy. I take my Rollator and walk at a slow pace. Arnie and Monty get ahead of me, then they stop until I catch up. Sweet! I have begun wearing my ankle weights (2.5 lbs each) on our walks.

I am finally getting back into doing my PT exercises. They do help, I'm just bad about keeping up with something like that.

I am still taking Adaptive Yoga. Thursday, there were only two of us in class--that's pitiful. People sign up and pay their money, then quit after one or two classes--when they've paid for six sessions. I just don't get it, unless they don't mind throwing good money away.

I am back to eating right again, after a 6-month food-fest. It's amazing to me how quickly I can gain weight. Forty pounds in six months! That's shameful. I love food! My SIL told me about an online program that figures out your calories, fat grams, etc. Plus, how many calories you burn exercising. The website is:

www.MyFitnessPal.com

Took a Break From Blogging

2011-01-19T11:11:00.000-08:00

I haven't posted anything since October. I took a break from a lot of things I was doing on the computer. My computerless vacation was nice.
I had a port put in because everyone who tried to start an IV or draw blood was having a difficult time. I finally sat down with my neuro and told him that I wanted and needed a port and why. I was scheduled for surgery a week later. The whole process took more time than expected because they were having some kind of problem with the person ahead of me. The insertion wasn't too bad. At one point I began hurting. I told the nurse and she gave me more drugs and the pain went away. I was awake for the procedure. The port sits right under my skin about 3" from my collarbone. One week later, I went in for my Tysabri infusion. Inserting the needle in the port hurt like the dickens, and I was told that once the swelling went down from the procedure there shouldn't be any more pain. This was correct--all I felt at this month's infusion was a pinprick when the needle went through my skin. What a relief!
I finished PT, and now am on my own to do the exercises I was taught. I'm supposed to do them every day. However, I find myself doing them three days a week.When it's above freezing and the wind isn't gusting, we take Monty for a walk every afternoon.
Monty has become our rock. He is a great comfort to both of us, and he can be quite funny. He loves to go to Yoga class with me, as we do all of our exercises and relaxation in our chairs, so Monty takes an hour and a half nap.
Speaking of naps, in the evenings we play Find the Biscuit. He's getting really good at it, and he loves the game. The last biscuit is "hidden" on my bed. He jumps up, eats the biscuit, then lays down and we pet him. Then, he stays on my bed and takes a nap until it's time for my shower. I'm not supposed to let him on any of the furniture, but I do let him on my bed. I love to take a nap with him there snuggled up to me. He never gets up on it until I tell him to, except when he's getting his biscuit.
My husband is on his third chemotherapy drug. This one is Nexavar. He finished two months of it and then had a CT scan, which showed that the nodules in his lungs had not changed. That is good news. However, his side effects were bad. His oncologist told him to stop the Nexavar for two weeks, then to call his oncology nurse. Then, he will go back on the meds but at a decreased dose. This is in pill form and he's going from three pills a day down to two pills a day.
We're going to Philadelphia and Margate, NJ for my birthday next month. I am excited about that!

Trip and MS

2010-10-17T09:50:00.000-07:00

Last week, we took a trip. First, we drove to York, PA because neither one of us can make the 9-hour drive to NJ. This allowed us to tour Amish Country the next morning. I do so admire these simple-living people. Although I would miss my microwave and computer, and I never wear a dress or a skirt, so I could never be Amish. Besides which, I'm a Jew!
Arriving at my BIL's home, we unpacked and headed for a great dinner at Downbeach Deli.
Next morning, we ate a quick breakfast, then piled into the limo for a 12-hour visit to New York City and Brooklyn. This was my first time in NYC, and my husband hasn't seen it in 50 years. Our SIL, Bev, lived in NYC for 32 years, so she knew her way around and was able to tell the limo driver which street to go down to stay out of some awful traffic snarls. Among other things, we ate at a Kosher deli, walked from there down to Central Park. Saw the Dakota, Times Square, World Trade Center site, Battery Park and the Statue of Liberty.
We drove to Brooklyn to visit with our son and grandsons. We all went to dinner right across the street from their apartment to a Mexican Restaurant that was fabulous. They love Brooklyn, and they love their school (the boys attend the private school that Scott is teaching at).
My MS has been back to baseline but I'm still falling, even with twice a week PT. I used my Walker for long distances and my forearm crutch and Monty for shorter distances.
The following day we took a boat ride around Margate, which is an island and which is where my BIL and SIL live. The boat was provided and captioned by my BIL's friend. Monty had to be lifted onto the boat and then back off. He was apprehensive, so stayed close to either me or Arnie. It was a perfect day to be out on the water. Mid 70's, and the sky was a perfect blue.
On the way home, I stopped in Charlottesville for an appointment with my former, now current, neurologist. He prescribed an extra Flexeril in mid afternoon for breakthrough muscle spasms, plus he sent me for a blood test to check my liver (because of Tysabri) and to check a B12 level (because of memory problems). I haven't gotten the results back yet, so will call them Monday.

It did both of us good to take this trip, but we were both exhausted when we got back home.