Inspiration comes .... and goes

The journey continues ... with the usual peaks ad valleys. We suffer from the stereotypical ridiculous pace imposed on us by the season!  To the usual craziness we add the creation of a Christmas newsletter via CD, with caroling to boot! So, I'm not here to complain, maybe just moan a little, as Christmas looms and much of the work that must be done before the big day remains UNDONE!  


We still take time out to enjoy the social activities, and especially the music, that are/is part of the busyness.  We heard God's Great Love today; very inspiring!  And someone from church reminded me that I am still on the prayer list - amazing!  The person wanted an update - so I asked that they pray that I continue to get better ;-).  I said I was humbled that they would bother about me - and she said I was an inspiration.  Inspiration in, inspiration out!


So what's better about my health, and why? The first question I can answer; not certain about the second.  My balance is definitely better.  I can carry things even going up and down stairs.  I can stand on one foot, for almost forever - longer than anyone would want to.  I am stronger than I have been for about ten years.  I was on my feet while shopping the other day for 90 minutes with no more support than my cane.  Tonight we were in the recording studio for 6 hours, and I stood for at least half that time, although with breaks.  No problem - I'm standing right now while I'm typing.


I haven't taken my Copaxone for a month although I say every day I am going to do so.  I am about the same energy level and clear headedness as usual with the Copaxone - but without it!  It never really improved my mobility, but certainly my mood, energy and ability to think clearly.  Hmmm - I really want to know what I will be like if I take the Copaxone, too!  Energizer bunny, move over!


So, to what do I attribute this new state of being?  I am convinced that MS is a vascular disease first and an immune-system  disease second.  A number of things may have changed my vascular wellness ..... 


1.  a catheter inserted into my jugular veins (in Poland) may have diminished the amount of 'webbing' in those veins
2. 9 days of strong doses of blood thinners
3. 3 months of ProArgy9
4. 3 months of EmuOil
5. 1 month of 8000 IU of vitamin D daily


I am now a patient of Dr. Bill Code, integrated medical specialist.  Dr. Code took my angiograms pictures and MRVscans done in Poland to California, to an Interventional Radiologist there.  The IR feels I have blood flow problems that could be solved with a removal of valves in the veins that are not working properly.  We'll see ..... it may mean a trip to California soon.


In the meantime, work continues to be exciting and satisfying.  It especially looks that way right now as I am on holidays for three weeks.  I do plan to get a head start on an article about how emotion affects online learning that's demanding to be written, but that doesn't really feel like work ...... it's fun!


May the peace and love that defines Christmas surround you, now and forever.


TPP

Back in the groove

Hello all! I have missed writing here very much! Coming home after a month away takes significant readjustment, especially when one has had such an eventful trip!

My health is definitely changing, and to date I feel confident in saying I am better than I have been for a long time. Details to follow in a few days ... I have so much to report.

In the meantime, work continues to capture the best of me. This is an exciting time, and I hope to have an important project to announce by January .... one that involves more travel to Europe! Negotiations are underway ....

Tomorrow the short one performs with his dance/choral group at the Jubilee Auditorium - their annual Christmas Show. One daughter and one grand daughter will be in attendance, while the tall one and I chaperone. Look for pictures coming soon.

TPP

The last hurrah .....

We had a fabulous day today!  We toured the Vajdahunyad Var and the Hungarian Agriculture museum housed there.  Then off to the thermal baths and later the Art Museum.  Absolutely spectacular.  Had dinner at a restaurant of Aaric's choice, which turned to be an excellent choice because there were Hungarian Gypsy Musicians playing there!  It was an enjoyable ending to a wonderful day, and our trip!



I am sorry to be leaving Budapest so soon!  There is so much more here for us to experience. If you haven't been here before, put it on your must see list.  I certainly will be searching for Hungarian Restaurants in Alberta ... wish me luck.



It was a busy day so not feeling great tonight.  My recovery chart is emerging in my head.  In spite of my apparent vascular health, I am still interested in looking further into the relationship between vein health and other diseases.  More research to do - the fun part!


TPP

Breaking camp .....

At last I have a moment to get back to blogging.  The birthday dinner for Ashley was so much fun.  Food was so-so, the sights breathtaking and visiting as a family fun, fun!  The chamber group on the boat played Happy Birthday, and all clapped and sang.

Tonight was the highlight of the whole trip for Aaric!  As part of the conference activities, we watched a performance of the Hungarian National Folk Dancers.  First, the performance was held in The Hungarian Heritage House - a building started in the late 1700’s and developed over the next 200 years!  It is palatial, ornate, and elegant!  Here is a photo:

We were wined and dined, and treated to the most amazing dance performance!  The costumes, energy, agility and skill of the dancers were more exciting than anything we had ever seen before!  We had to share this with you – click here to see the video:

The conference has kept me (us) very busy for the last few days!  As always, discussing the progress, challenges and futures of education with my global colleagues is very inspiring! There are 29 countries represented at the conference, and while we have unique issues we also have many shared experiences.  We come together to review the state of the field and consider directions that will help move us into desired futures – quality education for all.  Did you know 2/3 thirds of world's children have access to grade 10 or less?  Many have NO access. This is not a situation that will lead us to creating a more civilized, greener world.  First, the best education for the greatest number … then we really have the capacity to solve the complex problems of the world.

So, what to do, what to do!  Tonight I feel a little overwhelmed, as now it is time to set goals and make decisions about what to focus on for the next year.  Usually this is just a professional quest … but this year I believe I have some pressing personal decisions to make as well.  What is the best set of activities for my family?  Aaric is almost 16! And my health?  I would like to state with confidence and accuracy “I am healthy.”  Maybe even “I am a vegetarian.”  And “I exercise regularly,” “ I feel really good,”  “ I am very fit.”  Wouldn’t that be nice!!!

Perhaps this is a function of transition ... going home is as big a deal as getting ready to go away for a month! Okay; two more days before we go home ... we're going to make the most of it!  Tomorrow the conference ends at mid-day, and we head for the Thermal Bath that Budapest is famous for.  Thursday is a whole day for sightseeing ... while I ponder my future(s) ;-).!!!!

More later ......

The beauty of Budapest

A very special person I know had a poster in her office that read “when you are at peace with yourself, any place is home.” We are at home in Budapest, awed and enthralled by the opulence and order of this fine city.  Built up along the banks of the Danube, the Hungarians are proud of their 1000 year history.  One person told me that other post-Soviet nations ‘hate Hungary’ because of its strong identity and notable culture.  These characteristics are evident here!  Budapest is one of the three highest ranked ‘livable cities’ in Europe and a place where much international investment is going on.  The food is outstanding!  Beautifully presented and very tasty – my family does like interesting cuisine!

I got to see the hospital where Semmelweis did his famous hand washing experiment with doctors in 1847, and reduced the mortality rate of mothers post partum by a drastic rate.  Then he was laughed out of the medical profession and later died in an insane asylum.  A sad end for such a noble physician.  I tell this story when I teach research methods … now I can say I saw where it all happened!  It is an interesting story of how change takes place in medicine, and what happens to doctors who want to implement new ideas – poor Dr. Zamboni!

I’ve developed a terrible kidney infection – a little souvenir of my procedure in Katowice.  And my fellow sufferers will know what follows a urinary tract infection … yes, I am thinking I am on my way into a major attack.  Taking Copaxone seriously now and getting more sleep.  I recommend those of you who may go for this procedure at Simka’s shop think twice before allowing use of a urinary catheter.  

Two days until the conference starts and looking forward to seeing colleagues I only see once in a while. 

Tomorrow we celebrate daughter #2’s birthday with dinner and a river cruise …. Then she flies home Sunday ;-(.  We will miss her.

Pictures tomorrow …..

TPP

Now wait just a second ....

... in the words of Jerry Seinfeld.  I didn't mention our trip to Auschwitz.  Maybe that's because I'd like to forget it.  Or because there is nothing, nothing anyone could say in words that would describe it.  Absolutely unbelievable.  The dark side exists .... maybe persists.  Do something nice for someone today ...or 10 people ... no, as many as you can. 

More later .....

Next stop Budapest, Hungary

Today was just a day to rest in lovely Bratislava, Slovakia.  Beautiful surroundings and fantastic food .... sigh.  This was a great day! 

I do recognize the calm before another storm ... busy conference then back to regular routine of work and home.  And still looking for the central piece of the puzzle ... like what does make your hands buzz one day and not the next?  Your balance better one day and not the next?  I believe it has to be metabolic and dynamic ... not a single, stagnant condition.  Caffeine and alcohol out at the moment as they make me feel quite sick ... how sad given the quality of the wine here ;-).

Feet and hands still warm ... would like to know why.

Look for pictures tomorrow after our first tour of Budapest.

Cheers!

Now on with the show

Our daughter has arrived!  Those who know her will agree when I say she brings much energy to everywhere she visits.  What fun!  Now that I have debriefed her, she has put away the knives she brought to deal with the doctors who didn't provide me with a treatment; it is hard to fault them because I have good blood flow ;-). 

Yesterday we said good-bye to our treatment group members who are on their way back to Canada.  We believe we have made life-long friends as we are now bonded in our adversity.  One group member is still here and back in the hospital.  Her wound did not coagulate and she was accidentally given an extra dose of blood thinners – very dangerous.  She is recovering in hospital; we visit her everyday so she does not forget that going home is just around the corner.

There is so much to consider, and so much work still to do regarding CCSVI.  The vast majority of patients being treated here in Katowice are from Canada.  We have seen every possible outcome for patients in this experience – the good, the bad and the ugly.  And, I will add, the worst and the best of medical care.  I am far more inclined to lobby the Canadian medical system to bring this treatment home than I was before.  Canada is where our MS patients should be working out their vascular issues. 

At the moment, I need to put this aside and get fully immersed in work again.  Our paper for the conference in Budapest has been nominated for the Best Research Award –  hurray!  Nice to be noted for all your hard work once in a while! Time to start getting ready.  In the meantime, my hands and feet are warm ….. the rest of my symptoms about average annoyance.  As a researcher, I am committed to using all that baseline data I collected on my health.  Now to find an experimental treatment to employ!

Tomorrow we will visit Auschwitz and pay our respects to those who lost their lives there.   I know it will spark much serious debate among us.  It will be a significant moment of reflection on the fragility of the human psyche and physical life. 

Take good care .....

TPP

The CCSVI Calgary group

Just had dinner with CCSVICalgray - what a fabulous experience they've had!  All were treated; all doing very well.  Here's the brief notes and they'll be hom to give you the full version tomorrow:

1.  Leanne - Angio and one stent - hyper sensitive at the moment - not sure of changes yet
2.  Elmer - Angio and stent - no changes yet
3.  Bonnie - Angio - feeling good
4.  Terese - Multiple angio (smoking as hard as ever) - bladder issues much better
5.  Raymonde - Multiple angio, no stent, feeling great

Shelley lifted legs today to assist when being moved - and she looks fabulous!  Len looks great; Grant was out of his chair when we got here tonight.  He says bladder issues much better.

We're on to something here .... lot's of work to do.  We need to talk about placebo effects and managing expectations.  There are some things improved blood flow can help with; other things take time or may not change.

Leanne reports that Kate (tour facilitator) was very straightforward and went beyond the call of duty.  From my perspective, Kate was a godsend - we had no-one at Simka's shop!

Cheers!

Well, that was interesting!

Okay, I’m back (the short one?).  Well, to say this has been interesting is a serious understatement!  Here is the skinny on my veins …. First, there are five major veins draining the head:  two vertebral veins, two jugulars and an azygous vein.  Before coming, I had an ultrasound report that showed my 2 vertebral veins have slow drainage and jugulars are okay but perhaps not compensating for the others as they should.  ALSO the Calgary doctor suggested that my azygous vein may be blocked as indicated by the slow flow in the other veins.

SO – it turns out that Simka only assesses three veins – two jugulars and the azygous because these can be fixed – vertebral veins can not be fixed with current medical treatments.  And once I realized this, the hope was that jugulars could be expanded slightly and azygous vein could be angioplastied to compensate for the others.   In the ultrasound here in Poland, it was reported I had problems with the valves in my jugular veins but no stenosis (narrowing).  Okay – so I go in for treatment with fingers crossed, thinking they will do something – maybe even just to be nice since we paid all this money and came all this way ;-).  Hmmm … no can do, says the surgeon, who has to follow research protocol and my vein issues (in the 3 veins they look at in order to treat them) aren’t bad enough to take the risk of treating.

He and I had this conversation in the operating room while I was sedated (gotta love that Demerol) – perhaps I could have presented a more convincing argument if not under the influence.  So while it was not what I had hoped, I did understand and know much more about this whole thing now than I did when I started.   In fact, the whole experience is not at all what you imagine (kind of like having a baby) and this is both surprising, interesting and disappointing.

There were six of us in our treatment group – now bonded for life in our pursuit for health.  Three had stenosis and were treated – with mixed results.  Three of us did not meet the treatment protocol – so we’re on the hook for buying the drinks since we get some of our money back;-).

Solving the puzzle continues  …. Have to say I am feeling surprisingly good physically and mentally – where I should be more upset?  Perhaps the vein catheter they used to examine me fixed that turbulence they were seeing … no way of knowing but feet and hands are warm, face is flush and I feel, I don’t know, kind of up.  Who knew? 

Thank you ALL so much for your support – it means a great deal!  More later ….

An update from the tall one

Hi folks, well as you are aware the Practical Professor did not have significant blockage in the three veins that can be treated. The Practical Professor is in great spirits. There are two others in this group that blockage could not be detected. So as well as celebrating with those that did have blockage our Practical Professor has supported the other two individuals.  Some things happen for good reasons.

We are picking The Practical Professor up at 7 Am tomorrow. Once we have breakfast she wants to drive to Tychy. Our group from CCSVI Calgary have been tested and/or treated and we want to see how they are doing. It was suggested she take a nap, our Practical Professor is anxious to see how they are doing and isn’t interested in taking naps.  I'm looking for my running shoes :)

The practical Professors Hubby will sign off now. Oh yes The Practical Professor has warm feet and hands, go figure.

vary sad news.....

hello..the practicalprofessor's son here again....i have sad news....the professor was in today for the treatment and they said they couldent do it beacuse their wasent enough of a reason to fit the protical....(i think thats how you spell it)

she will be on soon to share her feeling


more later until then.....

the practicalprofessors son....

the night before CCSVI

hey everyone! Thepracticalprofesser's son here! just on to say the Professor is going to bed early and having the treatment tomorrow moring. she or I will come on tomorrow with more news


until then......

Thepracticalprofesser's son ;)

Arrived in Poland today

Just a quick note to say we are here.  Saw the CCSVICalgary gang tonight for dinner.  Three done and five more tomorrow.  Shelley looks amazing; speech is MUCH clearer, face is glowing, hands and feet warm.  She is so happy - someone told me she can move her lower legs/feet.  Len has a stent and says he feels happy but a little lightheaded.  He was vibrant and talkative at dinner.

I must turn in as tomorrow will be busy with testing and visiting the others.  More then ...

Cheers!  Still waiting to hear what gets you all out of bed in the morning ;-)

Pictures from church

The calm before the ......

What a day we had yesterday! It was truly a day away from work for me (quite a rarity) as our Spanish friend took us from Barcelona to Algemesi to visit his family! The drive was stunning as we wound our way past rich, lush orange and olive groves, wineries and castle ruins from the 16th century. Our friend is a lively story teller and an avid historian; we are now well informed of the local history! Algemesi holds a festival every year that is now a UNESCO Cultural Heritage activity – looks like an event not to miss. Named the Muixeranga, it pays tribute to local music, art, the Spanish athletics of ‘human towers’ and their patron virgin of health, Mare de Déu de la Salut. I thought it interesting that I would meet her now …..

This patron was the catalyst for a building project in 1550; a Roman Catholic Church that has recently been named a Basilica by the Pope. Whatever your beliefs, the stories etched into this building are enchanting. For example, famous organist Josep Prades i Gallent (1689-1757) was music director, composer and chapel master here, leaving a significant legacy of music and tradition. The architecture and adornment is breathtaking. Just the maintenance and upkeep of such a structure is overwhelming; I can’t imagine the building of it, so many hundreds of years ago. I’ll load pictures of this, if I can figure out how (Randall?).

And finally – the people were true to my perception of this culture and out did themselves as hosts! We had private tours of both the church and the local museum, were treated to traditional paella and sweet treats for dinner, and embraced like family. In fact, our tour organizer at the museum said “there will always be a place for you in Algemesi” and we were made honorary members of our host family. We felt right at home.

So, will the real placebo affect please stand up! I felt great all day – I think. Or just too busy and having too much fun to notice. Or maybe it was the short naps I had in the car going and coming. Or the lack of wheat and dairy. Or the ProArgy9. Or the walking I did the day before.

Today was catch-up and get ready day. Slept in, did the laundry, relaxed sea-side and repacked. The ‘hes’ are currently off swimming before we go to our favorite restaurant for dinner. And today is the day to do the required ‘before’ video and post to you tube …. I don’t really want my inabilities to be ‘set in stone’ but I’m sure I can find the delete button later. Here is the link: http://www.youtube.com/watch?v=rY9YyfksPGQ.

Hands and feet: Hands feel somewhat stronger today but completely numb from knees down.
Hips, ankles and knees: Joints unusually sore – been walking a lot and in the sand on the beach (with help). Likely a bit more than I’m used to – need 360 stretching tonight.
Gait: Average wobble but feel like I’m walking on sponge – i.e. some rebound sensation with every step.
Fatigue level: Low – feeling very good.
Cognition: Feel mentally tired – would rather not have to think.

Seven more sleeps .....

Life is so full of contrast! I am so blessed to have such wonderful family, friends and colleagues! It is the kindness and generosity of these people that make it possible for me to participate fully in life – really – no matter how I am feeling/functioning! Someone just appears to carry my books while I hobble down the stairs or to carry my coffee to the next meeting room … or to pick me up by the door so I don’t have to walk too far! So – the contrast is how crappy I feel in comparison to the wonderful things people do to make my life easier! And perhaps I am getting people into heaven ;-)!

The ‘summit’ I attended was so valuable …. all in the name of improved quality of, and access to, education. Everywhere. And the people … drawn from all over the world – Spain, Jamaica, India, Canada, US, Scotland, Netherlands to name a few. There was contrast enough there. Another significant contrast is in how wonderful the work is in comparison to how crummy I feel! The up and down of it all …. I can make a good contribution but less than I would like! (I have a lot to say!) . Well … it certainly gives me lots to write about.

Sleep is the order of the day(s) now as I prep for the drama and stress of the procedure. Here is today’s status report:

Hands and feet – I’m sure they are there somewhere. Left ankle is about 50% bigger than it should be – perhaps a good thing I can’t feel it.
Fatigue – not getting enough sleep so pretty high today.
Gait – very slow, but steady.
Stiffness – much better.
Cognition – fine.

Have been eating wheat and diary and have the gut ache to prove it! So many delicious things to try – like Catalonia Cream pudding dessert. I will do better tomorrow, I keep promising.

Seven more sleeps ……

By the way – profile photo is not me but two creatures in my life whom I love very much! Any guesses?

Here we are again, in Barcelona!

Ah, Barcelona! If you haven’t been here, put it on your life’s list of ‘must see’ places! It is vibrant, interesting, historical and contemporary, functional, aesthetic. And these are my people …. happy, generous, helpful. Many speak English and most are patient with our pathetic attempts to speak Spanish, and the even more pathetic attempts to speak Catalan! Imagine being a history major here, in comparison to Canada ;-).

Couldn’t ask for better weather. Sunny, 26C, with a light breeze off the ocean. Hubby is reading a book on the patio outside, beside a fountain; I’m finishing a paper due today ;-( inside, but can hear the fountain and feel the breeze through the open window. Sigh …..

Today, physically, I feel like your basic bag of dirt. Typical jet lag day with added stiffness! Did sleep on the plane but didn’t stretch enough and so pay the price today. Here is my symptom list for reference 10 days from now after my treatment. Good science requires good documentation – thanks for being in the experiment with me.

1. Feet and ankles – feel like I am wearing socks that are too tight! Not much sensation, agility or movement there today.
2. Calves – lumpy - look like they belong Olympic long distance runner without the tone!
3. Balance – average to fair. Stiffness provides strength that improves balance, but trade off in agility. If I trip on days like this, I’m going down!
4. Buzz – less than yesterday except for hands. Feel like they are attached to vibrating machine.
5. Fatique – could sleep another few hours, but know that won’t really help. Would rather move, stretch.
6. Cognition – fine.
7. Neck and back – could really use a massage.
8. Gait – not pretty, but feel pretty strong.

Took ProArgy9 (amazing supplement of vit B, K, folic acid), 9, 500 IU vit D, multi vit, fish oil. No injection of Copaxone here yet – courage required.

Okay – basta (Italian for enough). Off to have coffee with our Spanish friend, then to conference opening session this evening. Please send your stories too – how is everyone? What gets you out of bed in the morning?

Cheers!

Leaving the house today

.... flying out early tomorrow morning.  Getting everything in place so all is looked after while we are away AND making sure all arrangements for the trip are in place is more than even two competent administrators (hubby and I) can handle!  How do those sicker than I do this?  With lots of help, I assume. I want to be that helper for others.
The cognitive chaos is getting to me - lists abound!  Not sure if the cognitive fog is illness or environmentally induced!  Off to the chiro to get adjusted - this really does help me think more clearly, although there is absolutely no science or explanation for this.   I am not getting enough sleep; for mysterious reasons this always affects me in two ways.  I have a temporary (a few days) strong gait and movement, but hands, feet, lower legs and face are buzzing - like the trick buzzer a clown might use when he invites you to shake his hand! WARNING - if this buzzing continues, an attack is imminent!  Usually this means calling on the arsenal of interventions that have worked in the past.  Today - just have to keep getting ready.

Walked along the driveway today in the sunshine, basking in the colors of Fall that are present in combination with warm weather! 

One more sleep …….

Short, to the point, and slightly uplifting

These are the criteria  for a  'good' blog post given to me by daughter Ashley.  So, here is post 2.


I am very excited about my time in Spain BEFORE I go to Poland.  A distraction? Perhaps.  I am happy to be part of this experiment with my fellow MS sufferers - but I HATE sitting in MRI machines, being poked with needles and being fussed with!


I hold no expectations for my functionality after the procedure.  I have many levers I pull regularly to stay well enough to remain a functioning, legitimate member of my family and the world - medication, supplements, exercise, meditation, physio, massage, chiro care, spiritual practice ...... this will continue no matter what.  I do have hope that the really bad days will be fewer and the amounts of these interventions less.


Today:
1.  Got out of bed stiff as a board.  Stretched for 10 minutes.  This helps somewhat.
2.  Can not feel my hands or feet.  Can't get what I need out of my pockets.  Nothing I can do about this.
3.  Walked the dogs to the end of the driveway (1.5 city blocks) and back, using my cane.
4.  Fatigue level average.  Can't attend to it - too busy.  Keep going .....
5.  Cognition - fine.
6.  Muscle tightness shoulders, back, both calves.  Can't take Baclofen if I want to walk.


Should take my shot of Copaxone today, but likely won't be able to muster the emotional and psychological energy required to do so!  And feeling well enough that motivation not strong enough.


Took 7,000 IU Vit D, multivit, fish oil and baby aspirin.


This is a start - I will document daily activities and state of being for two weeks before treatment.  This gives a point of  reference for after.


Cheers!

Getting Ready

This is my 'test' post as I as prepare to write daily and share the angst of getting ready as the excitement  builds.  21 more sleeps until  the procedure with Dr. Simka in Poland.  Today was my last visit to a Canadian doctor on this issue before I go.  The forces of the universe put a helper in my path; my family doc's nurse is from Katowice!  She provided messages of reassurance of the quality of care there.  I continue my frantic attempts to get everything done before I have to leave.