Friday, December 24, 2010

Merry Christmas Everybody

Last year Nick and I went to Peace River for Christmas.  Over our visit we talked with mom about going for the CCSVI treatment but at that point we didn't think it was possible.  What a difference a year has made!  Not only was it possible to go get the CCSVI treatment but we went and it worked!  What a perfect Christmas present.

We would like to thank everybody for all their love, support and prayers this year.  I don't think you will ever understand how much it has meant to us.  We hope each and everyone of you has a happy, healthy, and safe Christmas and that maybe Santa will bring CCSVI treatments to Canada in 2011!

God bless you all.

Maggie and Teresa

Christmas Ornaments (candle holder and star) from Sofia, Bulgaria that we got during our trip.

Monday, December 20, 2010

Falling Down

One of the best things about growing-up in Peace River was the ski hill in town.  In the late 80s my parents decided to take advantage of this and bought us all skis, boots, poles and seasons passes for the ski hill.  I remember the first think you need to learn when you go skiing is how to get up from a fall.  Let's be honest... everybody falls down so it is very important that you can get back up to try again.  Once you master getting up you can go onto bigger and better things like learning to stop, snowplow, turn, go faster, do moguls, maybe even learn to do jumps.  At each of these stages though you will fall down and you will need to get back up.

So you are probably wondering where I am going with this.  With mom's MS one of her symptoms is she falls down.  Again we all fall down sometimes but mom just does it more often then the rest of us.  The problem however wasn't so much that she fell down more often, it was that she couldn't get herself back up easily.  At times it could take her over an hour to get up from a fall.  This was always frustrating for her as well as for everybody who would find out about it and couldn't help.

Well guess what she did this week?  She took a little fall and then got herself right back up, only using a chair as a support!  Huge!  Like with skiing, if you can get up from a fall you can learn/re-learn everything else!

Tuesday, December 14, 2010

Getting Ready For Christmas

I'm sure everybody was up to the same thing this weekend... getting ready for Christmas.  Nick and I are coming to the end of the Christmas preparations and getting ready to just relax.  The tree is up.  The presents to Alberta mailed.  The rest of the presents are pretty well bought.  And most importantly Nick writes his last exam of this term tomorrow!  I had a bit of a delay in our Christmas prep yesterday with a migraine headache,  hence the delay in the weekly blog post.

Mom too has been getting ready for Christmas, which she said has been a huge amount easier this year than last.  The energy is still going strong.  Now she is starting to notice more strength improving.  She was putting her Christmas decorations up and was able to climb up and down the step stool four times!  She decided not to push the fifth time and instead made Duncan do the last thing. 

To mom, one of the most important parts of Christmas is of course going to church.  This week she went to church with Duncan and did something she hasn't done in a long time - stood up when everybody else stood.  Who knows, maybe soon she'll be able to walk up to get communion.  What an amazing New Years gift that would be.

Hope everybody's Christmas preparations are going as good as mom's are.  Less than two weeks left until the big day!

Sunday, December 5, 2010

Three Weeks Post Liberation - Magic No, Miracle... maybe?

I was talking to Mom again tonight and thought I would fill everybody in with a bit of an update on how things are going.

When we went to Bulgaria we were all hoping for a magic cure.  We knew that wasn't likely but one can hope.  Mom was saying tonight that it is a little frustrating to not get the magic.  Every improvement is good but one can't help but feel a little frustrated and as though everybody is watching to see a miracle, the changes however are small and much harder to see.

I'm sure most of you, like me, have spent much of this week doing Christmas shopping and errands.  This is something we take for vantage - going in and out of stores, fighting line-ups, and maybe getting a hot chocolate as a reward for surviving.  Last year this was something mom didn't get to do much of  because going to just one store would tire her out.  This year however, post Liberation Treatment, this is the case!  This week she said she went downtown and went in and out of several stores, having to get the scooter in and out of the van by herself several times, and then came home.  Guess what?  She still had lots of energy!

Another thing that we take for vantage that mom just regained recently was the energy to stand up while doing her hair.  Before the procedure she would have to bring her walker over to sit on while straightening her hair, this week she did it while standing the whole time.

Of course Mom says she realizes that you can't just hope and pray for the best, you gotta work at it.  Although she is still on the waiting list to get into physio, with the help of Rory (a personal trainer) she has a daily work-out regime.  She is using the small weights that he bought her and doing half an hour of exercises every morning, several exercises throughout the day, and then an other fifteen minutes at the end of the day.  Each day she says she realizes she can do something better or do things that she hadn't be able to do just a few days ago.

So no it isn't the magic but I still think it is a miracle all the improvements that are coming.  For the first time in YEARS things are getting better... something we never thought was possible.  I keep thinking its like somebody turned a light of hope on that we never knew was possible.  If that isn't a miracle then I don't know what is.

Next week... One Month since treatment update!

Sunday, November 28, 2010

Home for a Week

It seems quiet here in Halifax since Mom has left.  Nick and I are slowly getting back to normal, getting the guest room set back up after it being mom's room since August.  We'll be ready to host company again soon... well not too soon, we're enjoying the quiet time ;)

Mom had a good trip back to Alberta but it was definitely winter travel.  Her plane was delayed from leaving Halifax by an hour due to the snow (the only snow we've had yet this year) and then she arrived back in Edmonton to -26'C.  Rory was at the airport to pick her up and drive with her back to Peace River.  Before heading home of course she had do some visiting.  Rory and her met up with her nephew Seumas and her sister-in-law Brenda in Edmonton.  Mom decided to show off at the restaurant by walking in and not using her scooter! 

Rory and her drove back to Peace River that afternoon.  Rory sent me some pictures to show how happy mom was to be done travelling, as she's generally been on the road since early August due to my wedding.

Mom back in her own room with her own bed, all that is missing is her cat :)

One of the first things Mom did when she got home was dump out her suitcase and had Rory put it back in the basement.  No more travelling for a while!

Duncan was home for a few days unexpectedly when Mom arrived home which was really great.  Rory had to head back to Edmonton on the 5 AM bus in order to make it to his afternoon class.  In order to celebrate her return home Duncan brought Mom out for lunch in Peace River.  Again she decided to show off by walking into the restaurant.  She said it wasn't a glamorous walk but she did get in without the scooter!  (That was on Wednesday for those of you who've lost track of days, like I have.)

Since then mom has had lots of visitors to the house in Peace River, all eager to see how she is doing which has been really great.  Everybody is noticing how much better she looks.  She has been learning some new exercises from Rory (who is a personal trainer) to improve her strength and mobility.  She wants to have a selection of exercises to do throughout the day so that she can constantly work on improving.  She is also looking forward to hopefully doing some physiotherapy soon.  There was also a W5 documentary that she was watching this week that talks about retraining your brain to do things that it hasn't done in a long time.

What she has noticed most in the last few days is how tired she is.  Now this of course sounds "not good" but then she realized that she is tired, not exhausted, like she used to be before treatment.  Considering the trip she's just gone on anybody would be tired and would need a few days to crash once they got home.  I know that I crashed this week and really enjoyed sleeping in this weekend.  It would only make sense that she feels the same way. 

Little things are still improving.  She said that she's been noticing herself unconsciously doing things that she wasn't able to do before the procedure.  When a friend was over visiting, mom found that she was rocking herself in the glider using her right leg!  This is something that would have been impossible a month ago.  She also walked across the kitchen several times without realizing she was doing it.  She was only able to do this a few times that day, but each day gets better and better.

I thought I'd finish up by posting a few interesting news stories from this week and the Liberation Treatment.  It has been one year since we all first heard about the Liberation Treatment.  The documentary that started everything in Canada aired on November 21, 2009.  Since then 14 countries, including the United States, have started offering the treatment.  They don't know how many hundreds of Canadians have travelled to have this done.  There is hope however, last week New Brunswick announced money to fund MS patients from NB to get the treatment.  In response to this CBC did a poll asking if Canadians felt their provincial governments should be funding the Liberation Treatment,   92% of Canadians said YES!!!!

Sunday, November 21, 2010

Mom's Heading Home

It is hard to believe that Monday is the end of the adventure.  Mom will be flying back to Alberta Monday evening.  Rory is picking her up at the airport and then they are driving back to Peace River on Tuesday.  She is really looking forward to getting back to her own house, cat and dog, and of course friends and family.

Mom is still noticing little things improving every day.  Most she has noticed more core strength and stability.  She recently has regained to ability to pull her self up to a sitting position in bed, rock in a rocking chair using her "bad leg," and walk using the cane.  She's been doing loops around the condo with the cane.

I asked Nick what he's notice different and he says "walk" and when asked to elaborate on how it has specifically improved he says "she can do it now."  It is only small walking yet but it is noticeably changing how she functions through-out the day.

It was nice at dinner tonight to discuss the future with mom.  Before going to Bulgaria this was always a very hard discussion to have, normally skirting around the idea of when she will need to move into a nursing home.  Tonight we were discussing future travels, plans and independent living.  A conversation that would we would never even have dreamed of having before this trip.  Everything has become so much more hopeful.

We plan to do weekly up-dates on the blog starting next week so that we can continue to track mom's improvements for the next few months.  It has been amazing to have everybody's support.  I know everybody in Alberta will be impressed with all her improvements and those of us in Nova Scotia will be looking forward to next time she comes back to visit... I told her she'll be running marathons by then!

Thursday, November 18, 2010

Message from Mom - Two Weeks After the "Liberation Treatment"

It is two weeks today since the procedure.  I feel great.  The trip stress is beginning to fade.  It was a, for lack of exactly the right word, rather scary.  I am a homebody by nature so travelling half way around the world to a different culture, different language, and different attitudes caused a fair amount of distress.  The people were great, food fabulous, weather exceptional and all went well.   

I read where we need to wait for testing – that is like saying “we know that’s a great Band-Aid but it hasn’t been tested so sit very quietly and the blood will stop – we’ll get that Band-Aid later”.   I’m not dancing yet but I feel like I’m gaining ground.  Before the procedure, you feel the future is pretty bleak.  Looking forward to living in a nursing home, life is a movie to watch.  I still want to do things and share in my family and friends lives.   

I carried a plate of toast into the living room the other night – wow.  It seems so little but before I left, I hoped  I wouldn’t wake up exhausted and I could carry a cup of tea across the room!  I’m getting there.  There are many little improvements – hard to quantify but there none the less.  I can’t wait to get home where I can practice living more fully each day – unpack my suitcases and savour a new chance at life.   

Maggie has kept this blog going and done a great job but I would like to add my personal thanks for the support so many have given in many ways.  Where would we be without family and friends?  I especially want to tell everyone it was a godsend to have a daughter like mine, willing to give up holiday time, sick days, and time with her new husband.  She had to have much patience to help me and deal with all the aggravations of travelling with a disabled person.   

I am going home to start writing letters again to those in power to stop dragging their heels and hope you can do the same.  We should be able to receive this amazing gift.

Why CCSVI Needs to be Followed-Up, Tested and Done in Canada

I thought it would be interesting, as you might have already noticed, to include all the news stories done about CCSVI this week. This has been the fourth one I think in the last few days.

What angers me most if the lack of understanding people have about what is going on. The angioplasty that mom had is available to ANYBODY in Canada, so long as you don't have MS! I could get it if I needed it. My husband could get it. My brothers could get it. Her sister could get it. Her friends could get it. My friends could get it. But because mom has MS she can't.

Even more angering is the stories in the news that are showing how "risky" and "controversial" this treatment is are ONLY talking about people who have stents put in. While we were in Bulgaria we never met anyone who needed stents because nobody was that severe. At 80% blockage mom wasn't severe enough. Why aren't we paying more attention to this majority of patients who aren't getting the stents?

Anyways, enough of me ranting, here is the news story. My thoughts and prayers go out to this man's family.

CBC News - Health - Ontario man dies after MS vein opening

Two Weeks Since the Procedure

Two weeks ago was "the big day," which is hard to believe.  It seems like so much has happened since then - the rest of our time in Bulgaria, the travels home, all of mom's little improvements, lots of shopping trips, lots of visiting... plus getting back to normal life.

In order to properly reflect on all of these things mom and I are going to do a blog entry tonight to try to list all of the changes we've noticed since the procedure.  Be sure to check back this evening.

Wednesday, November 17, 2010

CCSVI in the News AGAIN

It is great to see all the media coverage that CCSVI is getting however the lack of response/action by the "powers that be" is so frustrating.  This is the fourth news story about CCSVI since we started our trip to Bulgaria two weeks ago. 

Edmonton Sun:  Protests in Edmonton for "Liberation" Treatment

Monday, November 15, 2010

CCSVI In the News... Again

Just saw this news story about the Liberation Treatment, which will also be on the evening news tonight. This is reason again that we need to get this treatment to be tested in Canada.

When you read this news story you will notice that the complications are caused by the stents, which mom did NOT get put in. This seriously decreases her risk of any complications. It does however remind us of the importance of getting follow-up and testing for this treatment in Canada now, because there are going to be hundreds of MS patients who've had this treatment in Canada soon.

CBC News - Health - MS patients lacking follow-up after experimental procedure

Sunday, November 14, 2010

Mom's Improvements

We've been back in Halifax for a few days.  Mom is feeling good and full of energy.  She's been out and about most days since we've gotten out - shopping with her sister, nieces and myself.  Her energy is really good and she is out shopping all of us!

I'm back to work tomorrow so Mom will be at home for the day by herself.  Over the weekend she discovered that her walking was really starting to improve so now she'll have something to practice while I'm at work.  Check it out!

Before treatment... in our hospital room in Bulgaria.

After treatment... tonight in my condo.

Friday, November 12, 2010

Getting Back to Normal Life

We've been back in Halifax for about two days now and am slowly trying to get back to normal life.  After such a long trip I just feel tired to the core of my being.  I am still off in my internal clock by about 2 hours so still have some adjusting to do before I'm back to work next week.

The trip back seemed less organized to me than the trip to Bulgaria.  Every airport we arrived at was confused about the scooter and its battery.  I also found that the airport staff wasn't as helpful on the trip back than on our trip there.  Several times I was responsible for pushing her wheelchair as they didn't have staff to do it.  My personal favourite moment of the whole day was when they pushed us to a security gate and then said to me that they would try to send somebody to push the chair but if we wanted to make our plane I should probably push the wheelchair myself and run. 

Mom is not as tired as I am now that we are home.  I can't remember the last time she had more energy than me!  She's been noticing lots of little changes in the last few days - being able to get out of bed from the other (not wrong) side of the bed, using her bad hand to power her scooter, and moving quicker.  Today she "walked" across the my living room without a cane.  This would be about a four metre walk and it was a pretty shaky/draggy walk but still, she made it.

Mom spent all day shopping with her sister Margaret.  They left my place around 9:30 am and came back around 5:30 pm.  Mom isn't feeling tired like she normally would be and still has energy this evening to do some puttering around. 

It has been really nice to be home though.  We've had lots of phone calls and visits of people wanted to see how mom is doing now that she is home.  Its been really nice to share our pictures with everyone and to see all the support.  I know mom is really looking forward to getting back to Peace River and seeing everyone there.

I have to also apologize for some the blog spelling while I was in Bulgaria.  What I didn't realize when I started the blog is that blogger is an international website so when the computer was in Bulgaria the website thought I was Bulgarian!  Spellchecker didn't work and ever so often decided to change words into Bulgarian for me.  It was really helpful.  Ha Ha.  I'm going to eventually go back into past posts and try to fix these mistakes but in the mean time just remember one of my favourite quotes: "It is a damn poor mind that can only think of one way to spell a word." (US President Andrew Jackson)

Wednesday, November 10, 2010

We're Home!

Thank goodness we survived that trip and we are back in Halifax!  We're so happy to be back.  It was great to be met a the airport by Nick, Margaret and Bhreigh. 

I'll do an update about the trip home tomorrow... I'm to tired tonight.

Tuesday, November 9, 2010

Last Post from Bulgaria

Well this is it folks!  We're calling it a night here as our flight leaves at 6 AM and our ride to the airport comes at 4 AM.  Hoping to get a few hours of sleep between now and then.

Bulgaria has been an unforgetable experience - both good and bad. 

Mom is feeling good today.  She's been walking around the hotel room a bit with her cane and has noticed that her bad hand in now only half numb (it used to be fully numb).  Once she gets back  home and rested it will really make a huge difference we're sure.  She really hasn't done well with the time change and hasn't sleept through many nights so getting home and on normal time will help.

Nick is picking us up at the airport tomorrow at 5 pm.  It will be so nice to get home.  Nick has promised us a gourmet dinner, or at least a dinner ;)

Once we are back and over our jet lag we plan to do an afternoon tea at the condo for anybody who wants to come visit mom.  I thought I'd bake some cookies and cinamon rolls and have some tea.  It should nice to see everyone.  I'll post on the blog the where and when of this afternoon tea.

Mom and I really want to thank everyone for all their support while we've been away.  The comments and emails have really helped while we were over here. 

Mom says: "I'm coming home!  Put the kettle on for tea!"

Walk of Downtown Sofia

I went on a walk in downtown Sofia today and saw some of the museums and churchs.  Unlike my other walks downtown I cheated and took a taxi down rather that walk down like I've done the other days.  The walk downtown is about an hour so this taxi ride was much easier.  My taxi driver took me to the wrong museum to start but I notice where he dropped me off was at the start of a guided walk in my Travellers Book so I set out with my guide book to see what it suggested I saw.  Here are the sights...
I started at the Archaeological museum.  This museum was built in the late 1400s.  I didn't go in as the reviews all said it mainly contained a collection of coins.
It has some Roman ruins in front of the museum that were really interesting.
I then came to St. George's Church.  This is the oldes extant building in Sofia, having been erected in the 4th century AD by the Romans as a secular rotunda.  It was later changed into a Christian church in the early Middle Ages and then into a mosque during the Ottoman era.  It was damaged in WWII and resently fixed to its Romansque style.

Grounds around St. George's Church.

I thought I should try to take pictures of me in Bulgaria... this was the only place I remembered to try.
While at St. George's Church I saw the Bulgarian Cerimonial Guard preparing for a special event.
I then wen to Sveta Nedelya Cathedral.  It is Sofia's most popular church.  It was built in 1863 but had to beruilt in 1925 after somebody blew it up in an attempt to kill the king who was attending mass.

Sveta Nedelya Cathedral from the front.

As I tried to get to my next stop I found the fancy shopping street.  Every store had a guard outside the front doors.  There was Dolce & Gabana, Dior, Versace, and so many more.

It was a challenge getting to the next church on my list.  I needed to go into the underpass intersection to get here.

This is Sveta Petka Samardshiiska Church.  The basement of this church was built in the 4th century and the top in the 14th century.  It had a tour guide who knew some English so I really enjoyed seeing inside this church.  Sorry, no photos allowed.

I found the wheelchair ramp to get in and out of the underground intersections!  I don't think you could pay me enough to use these, especially on the long staircases that were 5 times this.
This is a statue for St. Sofia, for whom the city is named.  It is right in the middle of Ploshtad Battenberg Square.  This was the heart of the city.  From here you can see the former Royal Palace and Government Buildings.

These buildings were the Party House.  The one on the right was the headquarters of Bulgaria's Communist Party and had a huge red star on it.  This start was pulled down with the fall of communism in 1990.
This sign was on the ground outside my next stop at the National Art Gallery and Ethnological Museum.  It says no-wheelchairs.  This pictures really captures how downtown Sofia feels.

This building is part of the former Royal Palace.  The left wing is the National Art Gallery and the right wing is the Ethnological Museum.  The architectures inside is beautiful.  I took a few pictures so I could show mom despite the no picture rule.  I did turn my flash off and tried to be really sneaky and not let people see me.  I couldn't take any pictures in the Ethnological Museum as I had a tour guide who had enough English to make it a really intersting visit.
Main Halls inside the Royal Palace/National Art Gallery.

Main exhibition hall.  They had some strange contraption holding up the art which you can partially see here.  The room was so wonderful though it really took away from the art.

Balcony looking into the main exhibition room.

Solarium in the Royal Palace/Art Gallery.
On my way to my next stop the whole main road got shut down for a massive dipolomatic parade of cars, motorcycles, police, ambulance, police on foot, and somebody very important in this car.

I next went to the Museum of Natural History.  I forgot to take a picture outside but it wasn't that fancy of a building.  It had four floors of exhibits... all of them of taxidermied specimens or dead things in jars or rocks.  I felt like I was back in Halifax at the Museum in my working collection! 

The top floor of the museum was all pinned specimens (bugs mainly).  There was a school group having a program while I was here.  I really enjoyed watching a Bulgarian museum do a school program.

Next stop was the Sofia City Garden, at the heart of it was the National Theatre.  One of the prettiest buildings I've ever seen.
The other stops on the walking tour I had already done the day I walked down by myself.  It included the St. Nikolai Church and Alexander Nevski Chruch.

It was interesting to go back down today as I realized when mom was with me we actually where near all of these buildings but we were so distracted with getting the scooter over the sidewalks, up and down curbs, that we didn't notice half of what was around us.  I think she'll enjoy the pictures better than her time down there.

Well we're off for our last supper in Bulgaria.  The food her has been great so we are really looking forward to supper.  We'll probably do one more posting before we call it a night. 

Waking Up On the Wrong Side of the Bulgarian Bed...

Well it is our last day in Bulgaria before we head back to Canada.  (Hurray!)  I’m in a cranky mood this morning.  I don’t know if it is that I miss my own bed, am frustrated that I’m going to go out to museums today and mom can’t come with me because of the serious lack of accessibility for the streets/buildings, or if it is just that frustrating to sit in the dining room and see six families from Canada with MS here in Bulgaria.  

Just think about all the fundraisers that have been done and money that has been donated for people to come to Bulgaria for this treatment!  Imagine if that money had instead been used to have this done in Canada!  

We’re both really looking forward to getting home tomorrow.  We’ve had some nice times here but it really hasn’t been a vacation.  It has been hard with mom’s scooter.  The battery is starting to disconnect and the scooter is starting to stop working.  We think this is from it being shaken up so much on the cobblestones.  It is pretty scary to be sitting in a public location and the scooter stop working.  I’ve said quite a few prayers in those moments that I can get it going again. 

Well I’m off to see a few of the museums.  After our experience of getting mom to the museum the other day and finding out the elevator was broken she doesn’t want to come again.  I’ll go down for a few hours though.  I’m going to come back mid-afternoon though to help mom with some errands back here, like going back to the hospital to pay for the trip.

Talk to you all later.  If you have some free time today write your MLA and or MP.  I think they need to know how foolish this is.