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.