Friday, July 30, 2010

It has been four weeks since I was discharged from the hospital in Chrzanow, Poland, and I continue to feel positive symptom relief---not quite as much as before but still a lot! As I was telling a good friend this morning, I need a certain amount of routine in my life and this week I finally felt like it was back. While trying to measure how I’m doing post Poland, I can use my routine as a barometer to help gauge the ups and downs of symptoms.

My ability to walk has improved, based on the fact that I used my rollator only once this past week (to go through a museum), and didn’t use my cane at all. I confess that I wanted my cane a couple times when ambulating down an Oakland sidewalk that was less than ADA compliant for wheelchairs or wobbly walkers like me. At moments I feel like I’m learning to walk all over again, remembering to swing the opposing arm in sync with the striding leg, all the while attempting to look up not down. Learning to walk isn’t easy at my age!

Balance improvement has made it possible for me to walk without assistance. If I was as dizzy-headed as pre-Poland this conversation wouldn’t even be happening. So my balance is better when I move my head and try to keep focused throughout the movement. Driving in a fast-moving car four weeks ago as I returned to the hotel from hospital, I could look out the windows quickly moving my gaze left and right and left again---with no dizziness or overstimulation of senses. I tried doing the same movement earlier this week and it felt okay but not quite as strong as four weeks ago. But still, to be able to do that was improvement from pre-Poland days.

Fatigue is noticeably less, especially after completing some of my usual activities, for example teaching a Gentle Yoga class. At the end of class I used to be tired and ready to lay down on my matt, but of course waited until all the students were gone. This week I didn’t feel quite as tired. The class still challenged my energy reserves but much less than previously. How nice.

My cog fog comes and goes these days. It shows up when I’m tired, at which time I go to nap, or if it’s night I go off to sleep. The symptom still controls a lot of how I live my life but thankfully isn’t as demanding as before. As I said to friends yesterday, it’s nice to be able to think better.

I honestly can’t tell if improvement is continuing to happen. I’m hoping it is, but accept whatever route my healing path takes. I’ll do my best with what I’m given and try to help others when I can, but for today I’m just celebrating four weeks of improved health and happiness. Cheers.

Tuesday, July 27, 2010

More good news: Dr. Salvatore Sclafani organized a symposium on CCSVI to bring folks together to dialogue on this important topic. The event was held yesterday and you can find good info about the presentations on Wheelchair Kamikaze's blog (go to my Followers and click on WK's icon). I hope the event helps move the ball forward for people with MS!

By-the-way, I'm still experiencing some positive symptom relief and plan to write more about it. At the moment I'm trying to research how to remove iron deposits that may have built up in tissue near (or in?) my brain. If anyone reading this has a experience with chelating iron, please leave me a comment below. Many thanks!

Monday, July 26, 2010

Here's a great website about CCSVI that has lots of info:

Saturday, July 17, 2010

It has been two weeks since my venoplasty procedure and I’m feeling good. I’ve experienced significant symptom relief and the positive changes continue to accrue (I’m waiting to write about the latter until I can describe them better).

One thing is quite clear to me now: my symptoms can be lessened by treating the illness as a problem in my veins. I’m not trying to analyze or understand the disease and I’m not exactly sure what to call it in fact. As a person living with things that don’t work well in my physical body and parts of my brain, I’m just shooting for maximum symptom relief!

Of course, I’ll be reading and asking questions about how to undo the damage caused by all the years I’ve carried this problem in my body and brain. At the moment I barely know where to start: iron deposit removal, chelation, poorly oxygenated blood issues, or something else entirely?

Just to be able to sit here and keyboard my thoughts without battling thick, dense layers upon layers of cog fog, that only two weeks ago I had to cut through with a sharp blade but can now barely see at the periphery of my thinking, is such a joy. I am truly thankful for that. My spiritual leanings show me that, in the end, I am not my body nor my brain---but I admit it is much easier for me to function in this world with a brain that can handle issues better and, yes, a body better equipped for life’s challenges.

In the coming days I’ll be helping host a fundraising dinner for Dr. Michael Dake’s CCSVI clinical trial. As part of a group of people with MS trying to advocate for more CCSVI research and treatment, I would like to assist Dr. Dake’s efforts in launching a trial at Stanford University Hospital where he works as Professor of Cardiothoracic Surgery. The event is scheduled for Saturday, August 14, 2010 in Albany, California with Dr. Dake in attendance as the guest speaker.

This is a very important effort for patients worldwide! If you’d like to contribute to the fundraiser please comment on this post and I’ll send you all the details.

Tuesday, July 13, 2010

Today was my first day back in action after the cold subsided. I taught a Gentle Healing Yoga class and my voice held up for about 70 minutes, and then started crackling. Or so says Chris who escorted me to the studio and assisted with prop placement (and then joined in as a student). Actually I think he was there to be sure I didn't overdo it!

It felt good to make it through a whole class and feel peaceful at the end. I had four new students and one who I knew from before. The range of familiarity with yoga, and comfort with moving in and out of gentle poses, was quite wide. But the props helped me keep all of the students doing the same pose at about the same time. Never a dull moment!

I'm feeling better than yesterday although still somewhat slower than before the onset of the cold. I plan on taking it easy for the rest of the day, playing with Pickle (my dog), answering emails, and just recharging my batteries for whatever tomorrow may bring.

Monday, July 12, 2010

This was the worst cold I've had in decades. Thankfully it's almost out of my system and I'm looking forward to being able to leave the house soon. I've been under house arrest since last Monday when the cold symptoms started showing up!

The MS symptom relief that I had experienced feels somewhat less now. I'm moving and thinking slower---due to the cold or due to MS, who knows? So it seems like a small step backward has occurred.

Some people who post about their symptoms after having the CCSVI procedure say they experienced two steps forward, one step back. I'm okay with that if it ends up being forward progress all-in-all.

Right now I'm experiencing the one step back and don't have assurances that I'll move forward again. So I'm back to keeping fingers crossed. (I seem to be doing a lot of that.)

Or you can say that I'm being "Cautiously Optimistic." Like I mentioned in a previous post, I've said goodbye to Eeyore's moaning or Pollyanna's unrealistic thinking. Right here, right now I prefer being cautiously optimistic.

Thursday, July 8, 2010

Good news is that my post procedure headache that travelled home with me from Poland has left but bad news is that I've caught a cold. It seems like I've been sentenced to forced bed rest for several days---which may actually be helpful for me right now!

I'm keeping my fingers crossed that when the cold goes away I'll still feel the symptom benefits that I experienced during and immediately after the procedure. Right now I just feel like I have a cold and can't judge about my MS symptoms! (Sneeze, sneeze, cough, cough.)

It was really cool to see the movie of my Venoplasty. The CD of moving images shows my blood neatly flowing through the Left Internal Jugular Vein and, at a specific spot, gushing out in many different directions. Another image shows the balloon that was inflated at that problem site---how exciting to see!

In a post-ballooning image I can see the Right Internal Jugular fairly well with blood flowing as a consistent "unit" that maintains its width. There may be collaterals but if there are I can't see them. I don't have any images of my Azygous, which I was told is fine, so I'm pleased with the movie of my Trip to Poland just the way it is.

I can't say that I'm settled back into life at home yet. The main reason isn't the cold as much as the missing my friends from Tychy (pronounced like ten-hen without the n's).

The group of us were staying at the same hotel for the same purpose, eating breakfast and sometimes dinner together, watching World Cup games together and generally sharing information and support for each other. It's rare that I find a network of caring individuals as strong as the one in Tychy and I miss my friends quite a bit now.

I'll try to post a few pics when I can but I'm off to nap for now.

Sunday, July 4, 2010

Happy Independence Day! I'm back from Poland and feeling positive symptom relief (warmer hands, cognitive improvement and info processing improvement). Yesterday morning before leaving for the Katowice Airport I bent down to reach for my purse on the floor and as I moved my head back up I didn't feel much loss of equilibrium. That's new symptom relief for me and I hope it stays.

The time spent in Poland was an experience that I can barely describe in words. Of course the tourist adventures are easily related in familiar vocabulary but many of the medical moments sound unbelievable when I sit down to write about them.

My father commented about the newfound warmth in my hands as a romantic episode to find improved warmth as I sat on a hospital bed fondly holding my husband's hands. (I never knew my dad had that side to him!) I'll borrow that prose from my dad since I'm searching for the right words here and now.

Realizing that I was thinking more clearly as I lay prone under the OR equipment defies adequate description. Please note that at that instant there were three male doctors speaking quickly in Polish to collaborate near my right femur to correctly thread a catheter through my veins---and I hadn't asked for sedation of any kind. Before stumbling over my words any more, I'll conclude with saying that going to Poland was an exceptional experience and I'm likely to be talking about it much, much more.

Thank you Carol and Jeanee for your supportive comments, and to everyone else reading these posts. Happy Independence Day to all!

Friday, July 2, 2010

I had my Left Internal Jugular Vein angioplastied yesterday and have felt some good results. My hands became warm soon after the "ballooning" part of the procedure was complete. While I was on the Operating Table I had a sense of the fog lifting from my brain---and I could think clearly again. It was rather strange to be under this huge piece of medical/radiological equipment with three doctors, many assistants all around and while looking up at the ceiling have this incredible sense of: Wow, I can think well again!

I have no idea if this will last but I'm enjoying every moment of cognitive health. It's been difficult to accept a steady course of dulling of my thinking ability and that's one of the main reasons why I I decided to come to Poland for CCSVI treatment. It's been less than 24 hours since the event and I'm needing sleep so I'll sign off now:)

Thursday, July 1, 2010

Today is the day for my CCSVI procedure. I feel this is a fortuitous day because a member of our group here announced that B. B. Lee, MD had a peer reviewed article about CCSVI published in a recent medical journal. Dr. Lee is managing a clinical trial for patients in Georgetown near D.C. and is a well respected vascular specialist (I believe that's his specialty).

It feels good to hear of more acceptance of what I'm just about to undergo through a doctor publishing a professionally accepted writing on the subject. Maybe other people with MS won't need to travel as far as I have to be treated in the future.

I'm not going to wax poetic today---my emotions are a bit ajumble (I made up that word---eh) but I'm still confident about staying on this path I'm treading. Ciao for now.