Well, here we are in lovely Montreal.  This afternoon we did a CBC Radio Canada interview and then afterwards we went over to Dawson College to meet with Tony Proudfoot.  For those of you who have not heard of Tony Proudfoot (you must not be a football fan!) he played for the Montreal Alouettes for 12 years.  Tony was diagnosed with the bulbar version of ALS this past May. I wish I could tell you that I pulled off a great interview with him, but I didn’t.  I could barely speak and I realized at that moment how much this trip and meeting ALS patients is affecting me on an emotional level.  While listening to Tony talk about how his life has recently changed and how he will most likely lose his voice by spring (he also lectures and does commentary for the CFL) I felt a bit helpless, like there was nothing I could do to help anyone with this disease.  I really do want to help and right now I feel like this is not doing a bit of good for the people currently living with ALS.  My hope is that one day we will find a cure for this terrible disease and I know our efforts to raise awareness and money will definitely help out.  But that is for the future and what can we do for the present?

Listening to everyone’s story and knowing their fate is almost more than I can take at times.  It breaks my heart to look into the eyes of someone who has a terminal disease that will take their life in just a few short years, knowing there is currently no hope for a cure and no medication to help them out.  The only thing that makes it bearable is being around them each day.  Their constant positive outlook on life and their ability to live each day to the fullest is truly an inspiration to each of us.  If there is one thing I have learned from this trip, it is that we should all strive to live our lives that way.  One day at a time, with a positive outlook-reminding ourselves not to sweet the small stuff and keeping an eye on the things that really matter.

BTW - on Friday we will be at McGill University from 11:00-3:00 if you would like to come out and see us!

-jeannie

On Tuesday we went downtown Quebec City to hit the streets for hugs and practice our french!  We met up with an ALS patient named Pierre, and his wife Odette.  They were a great help as they worked right along side us and spread the word about ALS (in french).  Pierre has been living with ALS for 7 years and is still able to get around quite well.  He uses his wheelchair when he gets too tired to walk, and he is still able to speak with ease.  The most remarkable thing about Pierre is his ablility to raise money!  He has raised over $100,000.00 for ALS and has already raised $25,000 this year alone.  He and Odette participate in the ALS walks each year and also help promote other events (like ours) throughout the year.  They are an amazing couple and we thank them for all their hard work!

As we left Quebec City at the end of the day and headed for Montreal, I reflected back to all the patients that I have met and I realised that I am in awe of their ability to always have such a positive outlook on life.  They truly live each day to the fullest, living one day a time, and not worrying about the day to day garbage that most of us do.  I find that ALS patients seem to live with fewer concerns about the things that frustrate most of us from day to day (things that really aren’t all that important in the grand scheme of life) and are generally happy to be alive each and every day -which is what most of strive for but somehow we lose our way.

We have been told by many people living with ALS that we have inspired them, however we feel the opposite - they have inspired us to focus on the things that really matter and to continue our journey raising awareness and funding for the Societies.

We are currently in Montreal and are hopeful to meet up with some researchers and other influential people living with ALS. 

For those of you who are wondering where we will be so you can come out and meet us….we are working on an appearance at McGill Univerisity on Friday.  We will update the website with details as they become available.  We will also be doing CBC Radio (the Home Run show) this afternoon around 4:30ish! 

We would also like to thank our friends and family who are here in town for hosting us at their homes.  Home cooked food, clean laundry, and friendly faces gives us a tremendous boost!  Our thanks to Patricia and John, Gillian and Bob, and Siobhan’s mom for letting us invade your homes and lives for 3 days!  We really appreciate your genorosity. (plus, we got to play with their pets-1 dog, 3 cats and a rabbit)

Today’s ride was a long one, about 8 hours from Fredericton to Quebec City.  It was a bit cool but bright and sunny, and thankfully no break downs with our vehicles!

While I was riding in the sidecar and admiring the changing colours of leaves on the trees my mind once again wandered to an ALS patient I met in Vancouver just before we left for this trip.  Lyle is also my age (well, nearly) he is 39 and lives with his wife and their children, one of which is only 3 years old.  Lyle, like Ronnie, was an active man and considered healthy before his diagnosis.  He was successful in his career, drove a fast sports car and like everyone else with this disease, did not deserve it. 

Today my thoughts drifted from how terrible this disease is and how complicated Lyle’s life is (he is completely paralyzed except for his left thumb) to his 3 year old son.  I wondered what it must be like to grow up watching your father slowly die.  To never know what it’s like to be hugged or snuggle in his lap to read a bed time story.  I wondered what it would be like to never be pushed on a swing or taught to ride a bike, to go fishing or play in the sandbox.  I wondered how that might shape a young person and how angry you might be that you were robbed of your childhood by not having a father.  I wondered what goes through a 3 year olds mind when he watches his father struggle to speak and breathe while he lies helpless and dependant on his wife for his every move, his every need. 

I wondered how families deal with this each and every day and how they have the courage to go on.  I wondered how their lives would be after their loved one passes away.  I wondered what I would do if I were in their shoes.

This is a truly devastating disease, not only for the patients who live with it and die because of it, but also because of the heartbreak it causes for their family and friends. 

On a similar note, Bob from Newfoundland just called!  He wanted to tell us that he and his brother are trying to organize an ATV ride from St. John’s to Corner Brook.  It’s funny how quickly someone can impact your life.  Bob has quickly become one of our friends in the truest sense of the word and it was bittersweet to hear his voice (or what is left of it) on the phone.  As you may recall, Bob has the bulbar version of ALS, which attacks the throat muscles first, he struggles to speak and we struggle to listen but it is worth it because when a friend calls…you answer.  We love you Bob and hope you are doing well, we also hope to be able to see you again soon. 

-jeannie

ps. a note from Glen:

Today was a really long and frustrating day.  More stuff just went wrong with the Gord-mobile and I am grumpy from lack of sleep and living in cramped quarters with 6 other people.  My frustration level was extremely high until Bob called.  Once again I am reminded why we are doing this ridiculous trip and that it does in fact matter, thanks Bob for the call your timing was perfect!!!

-glen 

Another province and another day that I feel lucky to get the opportunity to travel through this stunning country of ours.  The leaves are beginning to turn and there is crispness in the night air.  The days are spectacular….not a cloud in the sky.

We made our way downtown and found a local flea market to set up shop.  It was a bit slow for what we wanted so we moved over to the local Walmart and found a willing crowd.  Apparently at shift change the new manager on duty didn’t like us being there (I guess they have some rules about not soliciting in front of their store, i.e. we weren’t allowed to pester their customers!) so we started to pack it up and move on down the road.  While loading up the bike a mall security guy came up and wanted to know what was going on.  We told him we were leaving but he insisted on letting me know that if we didn’t move quickly he would call the police and we could get a ticket.  For those of you who know me personally, you can imagine how well this went over.  Did he really think I was going to sit there and watch him phone the cops and then wait around for them to show up?  And doesn’t he have something better to do than to harass people doing charity work who were already in the process of leaving?  Mind you it was true, we were parked slightly in a handicap spot, so I guess he had a tiny little point!!

Later tonight we all came back to Karen and John’s house (Karen is on the Board of Directors for the ALS Society here in NB), which is where we spent last night.  They graciously hosted us for 2 nights, including feeding us, letting us use up all the hot water in the shower, doing a couple loads of laundry, washing the bike and filling up the Gord-mobile with water!  Plus, we went fundraising in the neighbourhood and raised extra money by giving all the local kids rides in the sidecar!  Which by-the-way now puts New Brunswick #2 on list for most funds raised with a total of $606 for hanging out and selling hugs!  (Newfoundland is still #1 with $1500 we raised at our charity BBQ day, plus the $3000 raised for us by ALS NFLD in a raffle!) Not bad for a little community, especially since we raised more here in Fredericton than in Halifax and the locals love that fact!!! 

As the day comes to a close I am sitting in Karen and John’s house appreciating all the hospitality and generosity, but my mind still wanders to all those who are suffering from ALS and who we can best use our time to help them the most. 

-jeannie

Day 13 and we find ourselves in Charlottetown, PEI.  I know I keep saying all the places we go to are beautiful, but it really is true.  And PEI is certainly one of those places!  We hung out along the waterfront and chatted to all the folks who strolled by.  We even went over to a local radio station and did a spontaneous on-air interview. 

In Charlottetown we raised lots of awareness along with $546.23!  And don’t forget you can match those funds and get all the perks that I have mentioned before – tax receipt, etc!!

I also had a chance to meet Colleen, whose husband died last June from ALS.  Ronnie was diagnosed with ALS when he was only 35 and passed away 3 years later.  He was a husband, a father, a friend, and a son.  Ronnie, who was a healthy and active person (he was also a volunteer firefighter) drove a milk truck and thought that his muscle tiredness was caused from fatigue but when it only got worse and not better he decided to see a doctor. 

I’m not sure what got to me the most, knowing that Ronnie is my age, which then made me think about what I would do in his situation, or listening to Colleen tell me of all the struggles that Ronnie and his family faced for 3 years.  The fact that it would take 3 people just to wash his hair, or how difficult is was just to get him out of bed. How he would struggle just to try and thank his friends for stopping by or the way he had to sit in his wheel chair and watch his life slip by knowing his family was doing the same thing. 

If I could only help you all understand what ALS patients and their families go through then I would be doing a great thing for all the Ronnie’s, Don’s, Bob’s, Helen’s, Gary’s, Lyle’s and Mike’s out there. 

As we rode for New Brunswick these are the thoughts that crossed my mind.  As I watched the golden sun fade to pink I wondered what I would do if I knew I only had 3 years left to live.  I wondered how I would treat people and how I would want to be treated.  And then I wondered why we don’t act like that everyday.  As I looked at a photo of Ronnie taken about a month before he passed away, I wondered what my life would be like as I sat tied to a wheelchair with a breathing machine placed next to me, unable to communicate expect by blinking my eyes.  I wondered what it must be like to not be able to eat anything hard or crunchy because you can’t swallow and you might choke.  I wondered what it must be like to be fighting for a breath of air but the muscles controlling your lungs no longer function and even though the machine breaths for you, it just isn’t enough.  I wondered what it must feel like to know this is the last time I will see my family, knowing that your very life is drawing to a close.  I am guessing this is how Ronnie must have felt….and more.  Today I dedicate this ride to Ronnie….

-jeannie

What an awesome ride we had today! PEI is beautiful and a great place for biking, with its long and winding roads and no traffic. It gives you a chance to sit back, relax and enjoy the ride!
We have an event planned for the waterfront tomorrow, and hopefully we can start raising some serious money for ALS! I am getting a little worried on that front as funds are slow to come in and it seems as though our efforts are falling flat (with the notable exception of Newfoundland - go Newfoundland!!). We have a big goal to reach and we have barely scratched the surface despite having traveled through 3 provinces. It can cost an ALS patient approximately $137,000 for equipment required; nursing and home care costs can be up to 10 times this amount. Currently we have raised less than $7000 which barley covers the cost of 1 wheel chair for 1 person. There are an estimated 3,000 people living with ALS in Canada at any given point, so you can see just how important donations are. Please help us with this effort and donate today. It’s easy to do by clicking on “Make a Donation” on our website. It only takes a few minutes and will make a huge difference to people living with ALS. Every little bit helps out so please donate and also spread the word to your friends, families, co-workers etc. It really does take a village!

Ps. Don’t forget that you can match donations raised in Halifax ($426.13) and receive a charitable tax receipt and recognition on our website! See the blog titled “Attention Halifax” for more details. You may also match donations raised in Vancouver ($530.62) and receive a tax receipt along with website recognition. All money received will stay in the province from which it came.

Thanks for your support!

-jeannie

hey everyone,

i’m drew bienemann. you may not know much about me, but i’m the director of photography and camera operator for the documentary being filmed about glen and jeannie’s fantastic canadian voyage.

i’d like to let you know two things.

1: there is going to be a lot of pictures up on the site now, categorized by province.

2:there will be even more pictures on our Flickr photo page, which can be found at:

http://flickr.com/photos/13395697@N03/sets/

so check them out! i will update them as much as i can with the limited amount of time we have with an internet connection.

thank you,

dlb

Today we headed out to the waterfront in Halifax (see below for more details) and had a great time.  We met some lovely people including Mike, a nice fellow who is living with ALS.  He hung out with us for the better part of the day and told us his story.  He was diagnosed with ALS about 3 ½ years ago, has a feeding tube and uses a wheelchair to get around.  But none of that stops him and he keeps a smile on his face.  It was great having him around supporting us today!

Later tonight we met another ALS patient, Gary, who was diagnosed nearly 7 years ago.  We went to his home to interview him and also meet his daughter Shannon.  They are both very proactive in the community and fundraise year round.  We are proud to have them in our “family”! 

On a side note, we did get the bike back today…the price wasn’t pretty but everything seems to be working.  If we keep ending up with $1300.00 repair bills then all 7 of us will be sleeping in the Gord-mobile for the rest of the trip! 

It’s already midnight and we have to leave at 5am tomorrow for Charlottetown…another day, another dollar and more awareness.

 Don’t forget to check out newly posted photos, just click on gallery to see what we’ve been up to!!!!

-jeannie

Feeling refreshed and ready to go we set off on the bike and headed for the Gord-mobile.  As we were coming into Port Hawksbury I began downshifting in order to slow the bike to a stop.  That’s when things got interesting….the back of the bike began fishtailing, and I could hear a strange metal on metal type sound.  I held in the clutch and used both the front and rear brakes to gently slow the bike down.  As we pulled into the gas station and took a look at the rear wheel our team members Aaron and Robin (who were following behind us) said they saw puffs of black smoke and the whole wheel shaking.  Upon a closer look, we noticed that most of the spokes were broken and part of the tire had a gouge out of it.  What a surprise…another vehicle, another problem.  Could this get any worse?  So now we are sitting in a roadside diner and waiting for BCAA to come and pick up the bike that we left stranded in the driveway of guy named Ken who works on Harleys.  The thing is that Ken doesn’t have all the parts we need so he suggested we take it to the HD shop in Halifax, which is why we are waiting for BCAA right now.  I don’t even want to begin to imagine who much this going to cost nor do I want to think of all the ways we could have been injured today.  We are safe and sound and everything is okay and now the bike is going to have a pretty good comb-over to make sure it can make it the rest of the trip. 

While we wait in the diner, Megan and Drew went to pick up the Gord-mobile and come rescue us.  So now we have a motor home but no bike.  I wonder when we will have both vehicles running at the same time for more than 2 days!

With the bike on the tow truck, we made our way to Halifax in the Gord-mobile where we were reunited with Lisa who had stayed on in Newfoundland for a few days of R&R with her family.  Feeling rather low, but still hopeful to get the bike back tomorrow, we all are heading to bed to shake off the days events.

-jeannie

Day 10 and we geared up and headed out to the ferry.  We made a quick stop at the Wreckhouse Haven Tea Room in Doyles, NL to visit with Melinda who had emailed us about how ALS has affected her family.  She donated a lovely breakfast and we had a chance to visit with her and take a look at her really cool tea house.  Thanks Melinda and team!

Afterwards we saddled up and headed out.  What can I say…the ferry ride to Sydney, Nova Scotia was great.  I had a chance to take a much needed nap, I couldn’t believe that I slept for 1 ½ hours but it felt amazing.  We all managed to get some work done as well so that was good.  We checked in to a local hotel where I got to soak in the tub before heading for bed and some much needed rest!

-jeannie