Bark, Bark . . Marjorie's Fallen in The Well

Meet Glory. She's our big black dog - maybe an Australian Shepherd mix. She's pretty awesome but when it comes to helping me with MS, well, let's just say being a service dog is not her calling.

I'm pretty sure Glory has some kind of radar that tells her to go to the exact location where I plan to walk and block my path. I can't lift my right leg over her and she stares at me like "what? what's your problem?" Then when I ask her nicely to move she makes such a commotion. "I hate to be such a hassle but can I get by?" 

My lapdog

Glory and Christofer are the ultimate bed warmers

Can you see her?

My balance has been better lately but my mobility still stinks. This leads to frequent falls. Yesterday I was home alone and making lunch. I was walking back to the fridge with my hands full. Glory was sprawled out in the middle of the kitchen floor. My left leg moved forward thinking my right leg was moving forward to balance things out. But that wasn't the case. Right leg didn't get the memo and was still hanging back and there I went. Oh crap! Here goes another fall. Timber. . .  Catch yourself, roll into it, don't break anything. Splat onto the floor! The container of strawberries fell and strawberries went rolling all over the kitchen floor. Glory jumped up and stared at me like "what the hell are you doing?" No "bark, bark Marjorie's fallen in the well" no attempt to comfort or console me. No whimpering. Just a look of "Are you crazy? Now get your tail up and pick up that mess?"

The only real casualty was a large strawberry squashed under my butt. That's nice. Good thing I was wearing black pants. Nothing too serious. Just a few bruises. By this time Christofer the cat had joined Glory as they watched me crawl around on all fours gathering strawberries. I'm glad I could provide some entertainment for my pets.

After dusting myself off, I escaped to my computer for a bit and who was in my chair but Christofer.

Um, Christofer, can I have my chair?

Well, sometimes they're a pain but I wouldn't trade them for anything in the world!

If a tree falls in the forest . . . If Marjorie falls in the kitchen . .  at least my four legged friends heard it! 

Post CCSVI - How are you feeling now?

It's a week after my CCSVI procedure. The question of the day is of course, how are you feeling? I'm great! Well, I'm not running marathons and mountain biking but I'm great.

Marjorie after Atlanta Marathon Pre-MS

Beast of the East Adventure Race - Not quite ready for this.

Transition at Beast of the East Pre-MS - Yea, I was a B.A. despite what my kids think.

 I'm still hopeful! Well, not hopeful for extreme sports again. I'm hopeful for extreme contentment for a better quality of life. How about that? Extreme Contentment! Let's all give that a try.

Yep, I'm not doing cartwheels and walking is still a huge struggle but I am bubbling with excitement over the little things. I'm experiencing ever so slight improvements in lifting my right leg and the incontinence issues that are oh so common with MS have improved a tad, my thinking is more clear, I'm feeling slightly more stable, I'm able to stand for longer periods of time, I'm having less spasticity, I'm able to bend my right knee a little more and I have a tad more strength in my right hand.

Here's an example, I haven't been put on a necklace in probably two + years. I have put on my favorite necklace the last four days. Why? Because I can! And it's pretty.

Also, I've been typing all day. Usually my hand gives out after about 30 minutes to an hour. These are all very small improvements but the doctor said it could take a month or two to see results. I'm cherishing the improvements and thanking God all day long and holding on to more improvements.

Thank you for your continued prayers and support. God works through all situations and it's tangible how God is at work. I'm blessed and extremely grateful.


*Chronic Cerebrospinal Venous Insufficiency (CCSVI) - Go to this website for more info: http://ccsvi.org/

Chicago or Bust - Day Three CCSVI Treatment

Today was day three and our last day in Chicago. We shuttled down to the appointment and met with the doctor. He did an ultra-sound to make sure everything was flowing correctly. Everything looked good. He gave me a prescription for a blood thinner and physical therapy and sent me on my way. CCSVI - check!

Now, for some sight seeing.

We took a taxi down to the Pier and went for an Architectural and Historical Cruise of downtown Chicago. It was amazing. I was a little tired and the heat got to me a little but I'm glad we had a chance to be tourist.

Marjorie after the tour.

Betsy after the tour.

One last thought about traveling with MS. The airlines have been very accommodating over the years when flying. I appreciate the effort they give for people in need of wheel chairs and special needs. One might think I like this part because I get to skip all of the long lines and hassles. But I want to be very clear. While I am very appreciative to have this service, I would trade it in a heartbeat for standing in extremely long lines. The next time you find yourself frustrated by the long lines and hassles of airports, stop, and thank God for the ability to stand in that line. What a gift!

I am blessed to have so many caring people who sent prayers and lots of love my way during our trip to Chicago. From the bottom of my heart, I am humbled and lifted up.


*Chronic Cerebrospinal Venous Insufficiency (CCSVI) - Go to this website for more info: http://ccsvi.org/

Chicago or Bust - Day Two CCSVI Treatment

No makeup. No food. No water. We made our way over to the hospital for the long anticipated CCSVI procedure. I've been intrigued with this procedure for the last three years and I was finally taking the plunge.

I felt confident going into the procedure because I had done my research, the medical staff seemed highly qualified and more importantly I felt the love, support and prayers from so many people.

Thumbs Up! CCSVI Day

After a while, Dr. Arslan's Physician Assistant came by to check on me. She asked if I had any questions and I said no. She smiled and said "I didn't think so, patients who come for the CCSVI procedure are the most well informed patients we have." I chuckled.

I finally made my way into the procedure room. It was awesome! Right out of a TV show. I wish I had my camera. There was a small window that allowed sunshine to enter the room. There was heavy equipment everywhere and an extremely nice staff preparing the way.  They were still talking about the case before mine where they saved someone's leg from amputation. I knew there was a good reason for the delay in my procedure! They sterilized the whole room covering all of the equipment and me with special plastic.  I got a fancy shave and then my cocktail. Mmm. . . dreamland. Only I wasn't asleep. I was awake and even participated during the procedure.

They come in through the groin area and work their way up to the jugular veins. The venogram showed stenosis in the left jugular vein and axygous vein and very little in the right jugular. They did the balloon angioplasty in all three veins and then sent me on my way. I was in recovery for a couple of hours to monitor for blood clotting.

Hours after the procedure I was already showing some very subtle changes. I felt less foggy in the head, I didn't have to rush to the bathroom after drinking three cups of cranberry juice, when I walked I could lift my foot and bend my right leg ever so slightly. I felt very thankful and hopeful.


*Chronic Cerebrospinal Venous Insufficiency (CCSVI) - Go to this website for more info: http://ccsvi.org/

Chicago or Bust Series - Day One CCSVI Adventure

My sister Betsy and I had a great trip to Chicago for my CCSVI medical procedure! We met at the airport and took a taxi to our hotel conveniently located across from Rush Hospital. First lesson in Chicago - taxi drivers don't mess around. We learned it was a $50 fee if you threw up in the taxi (glad that didn't happen) and that the medical procedure may be irrelevant given the taxi drivers seemed to have a death wish!

After checking into the hotel we were off to my first appointments: the doppler ultrasound and consultation with Dr. Arslan. The hotel had a shuttle but I wanted to see if I could do it on foot since we were just across the street, or so we thought! We ventured off to the first intersection and made the decision which way to cross first. Negotiating an intersection when you're disabled takes on a whole new meaning. The light changed, the walk signal illuminated and cars were everywhere. Let the race begin! Hobble, hurry, lift and drag, lift and drag . . hurry, it's counting down . . 5, 4, 3, . . we made it! Barely.  And that was just the first crossing. The professional building was much further down and involved two more crossings. The entire situation was so funny we had to stop several times for laughing breaks.

Dr. Arslan is the head of the Interventional Radiology Department at Rush and is in high demand. We waited for a couple of hours for him to arrive. In the mean time, we got a little goofy. 

Marjorie & Betsy get silly waiting for the doctor.

Notice I wore my lucky cockroach belt. More waiting.

Once Dr. Arslan arrived and we talked for a while, I knew he was worth the wait. I told him one of my cockamamie theories of why I thought I had a "vascular" issue and he looked at me politely and nodded not realizing I have a bizarre sense of humor.

He was full of great information and I'm not qualified to properly relay the medical details but for those of you with Multiple Sclerosis who may be considering this treatment I'll throw out a few things that come to mind.

1. Over 30,000 people with MS have now had this procedure world-wide. It's not a cure and it's not a sure thing. From Dr. Arslan's experience, approximately 1/3 will have significant results, 1/3 will have some results and 1/3 won't notice much of anything. Additionally, the procedure may have to be repeated after about 18+ months.

2. He is a very busy doctor and originally did the ccsvi treatment for someone he knew. He doesn't advertise doing the procedure because quite frankly it's a "headache" due to the controversy surrounding it. He does the same procedure about three times a day for other conditions. It's been done for years without any of the scientific studies being required for treating MS. He was very careful and upfront about what to expect and discussed in great detail the couple of cases that have reported problems and what they know now to prevent those problems from occurring again (about 3% of the 30,000 cases). He's personally done about 300 ccsvi procedures and has been involved with about 500. The doctor who he replaced at Rush also did the CCSVI procedure so the medical team was very experienced.

3. I was impressed with his bedside manners by thoroughly explaining the procedure, asking me questions about my experience with MS, testing my strength, and not being in a hurry.

After the appointment, we wised up and called for the shuttle.

We ventured to Little Italy for an amazing last meal at DaVanti Enoteca. It was a quaint local restaurant with amazing food!

Betsy at DaVanti Enoteca after a great meal.

Once back at the hotel, I gathered up all of my prayers and Bible verses and words of encouragement that I printed off. I read over them several times, tucked them under my pillow and called it a night.




*Chronic Cerebrospinal Venous Insufficiency (CCSVI) - Go to this website for more info:  http://ccsvi.org/