Celebrating Birthdays

     Since our son was away for his birthday and his dad’s is the end of the same month we decided to celebrate them together and have the family over for a celebration.  Hunny would have to cook his own birthday dinner and the Boy’s, which would be Mexican. Before the MSA I would do the cooking and celebrating, I still like celebrating but now I cannot cook, or clean or decorate.

     Of course every week there is not a celebration, but I figure there is enough negativity with the MSA. The tears, frustration, doubt, loss of dignity and pride, physical stamina, and dreams we both had, so I choose to focus on the positive things and this celebration is positive. Like this blogs says, “One Day at a Time”.

     Twenty-seven years ago Hunny sold his fancy electric guitar to buy my engagement ring, so this birthday we got him a nice electric guitar.  The electric guitar was special to me too, the first time to get my engagement ring and now because of the MSA I wanted Hunny, to get a hobby besides me, and the guitar was perfect for this.

     Hunny’s kids got him stuff for his other hobby, his guitar. Stuff I did not know existed. I was very excited for him; just knowing Hunny had another passion in his life!

      For our son we wanted his birthday to be memorable also, after all he has been a quarter of a century.  We gave him 25 things of 25 like 25 paper clips, 25 pennies, 25 sparklers, 25 pens and things like this.  It was unique and memorable. We also decided to decorate our son’s bathroom in teal and his sister got him some accessories.

     

     My sister are her friend were still visiting from Cape Breton and the Grand children were visiting my other sister, so they all came over to help us celebrate.  Sometimes things work out better when there is no plan. This was one of these times. We had enough food for everyone, a lot of laughs and a good celebration.

     Sometimes in life we feel like we are not prepared but if we just make the best of it, Life is easier to handle!

New Experiences

     I have another visit a sister  coming from Cape Breton.  It is nice having all these visits; it gives me something to look forward to. My sister and her friend are driving to Ottawa. Before being diagnosed with MSA this drive would not bother me, but to this drive would be impossible now.  I wish I new the last time I drove there was my last as my perspective would had been different.

     While my sister was visiting we had lots of family time. It is bizarre because for 25 years in the Military we would end up where there was no family now we have around 20, this makes me happy to have lots of family. We get together whenever we have the chance and I am always taking pictures.

                                           

One day we went to the Canadian War Museum. This is first time anyone has taken me out in my wheel chair besides Hunny. It is bizarre how when you have to use a wheel chair it is as if you have become stupid all of a sudden. As you know MSA has affected my brain movement but not intelligence.  So my sister and her friend came to pick me up, and we went for a visit. You definitely feel your safety is literally in someone else’s hands, I try to let this fear prevent me from doing new things and it is all-new to me.

     When you first go out with someone who is not use to pushing you, you cannot help but notice every incline, every curb, and every wall and everything at eye level.  Before you might not notice if the person pushing you looks to the person they are walking and talking with or is looking straight a head and notices the pot hole, or the lip in the sidewalk or the wire that is coming straight at your head, sometimes I feel that I should have blinders on. All in all I made it one piece and we had a good time at the museum and lots of laughs.

     We went to St. Albert’s for poutine. My sister really wanted curd cheese so we took them to St. Albert. On the way back we had to go the bathroom, not only was it a challenge to get in there but while there I ran out of toilet paper. Normally this would be no big deal but everything is a big deal now.  I was calling to my husband but he could not hear me, so I had to get dressed and get to the door and considering there was no toilet paper in the bathroom, my husband had to ask the cashier who got it from behind the counter. Then I had to go through the whole procedure again. Of course this made me think of all those people in similar situations and without a voice.

    

     The rest of the visit was great. They picked me up another day with my walker and we went to see another sister who had recently moved. This sister is not closer but there is less traffic, not as busy and more direct. Much easier for us to get together. 

      

      My other sister who lives in Barrhaven had us all over there for dinner. It always feels good to be surrounded by so much love.  It is this unconditional love that helps a person with MSA cope with their situation.

Passion

     I have been going to the gym faithfully but instead of getting stronger I was getting weaker. I can only do the recumbent bike now, but that too is proving to be too difficult for me. Every revolution causes jerkiness, it is not smooth at all and when the opposite leg is at rest it ”tremors”. This will no doubt be the last time I will be at the gym in over 26 years.  Until I was diagnosed with MSA I had a home gym with a treadmill, a spinner, an elliptical, balls, jump rope, and was a marathoner. I used all this equipment not as clothes rack but to get in good shape. That is why this MSA diagnosis makes no sense; I was an athlete who watched what I put in my body. I feel I am being punished, not for doing anything wrong but for doing everything right!

 

     I was also having serious trouble with my bladder and bowel. I thought considering I had taken care of all that business in the morning it would be nice to go for a drive to Gatineau Park. So off we go, we just get at the entrance and I had to visit the bathroom. The closest place was the Casino du Lac Leamy, so this is where we stopped. When we got to the bathroom there was only the ladies bathroom with the handicap stall. So I had to pushed my chair like it was a walker. Using it like this means there are no brakes where I can reach so if the chair goes fast I cannot stop it. When I get to the stall I am very shaky and my whole body is trembling.  I felt so alone, and like crying. I was trying not to fall, get myself on the seat all while the tremors took over my body.  This is another symptom of MSA. I manage okay but afterward I just want to go home and rest. It is amazing how exhausting this is.

     Thankfully we have something good to look forward to, at least I hope. Hunny got us tickets to see Michael Jackson, The Immortal WorldTour Cirque du Soleil.

We bought these tickets a few months ago in the handicap section.  This will be another experience for me, but we cannot stay home because of this because there are going to be a lot of new experiences we will have to adjust.

     When we drove to the  Scotiabank Place, where the event was being held. They not only had a privileged parking spot but they had a privileged parking lot. We were off to a good start! We went to find our seat, to our delighted surprise, they have a whole section for privileged seating.  I had lots of room for my wheel chair, for Hunny to stretch and we did to have to worry about bothering people in front of us.

  

     The show was great all the music we grew up with. The King of Pop's extraordinary career with the artistry and acrobatics was amazing to see.  This extravagant performance was full of respect and love; it was obvious that everyone involved tried to show their love for Michael Jackson. The research that went into this production was evident by the way MJ's passions and interests were displayed in the show.

I too have a passion, it is for a cure for MSA!

Nijmegen

     

     Today our son will celebrate 25 years in this world and what a better way to celebrate than a walk of the world?!

   







       He made the team to Nijmegen Marches  (video) and this year will be the 16-19 of July with a stop before in France.

     Then it is on off to Holland in full gear and a ruck sack with 10 kg to hit the pavement.  There are about 200 Canadians selected each year for this March our son was one of the selected.  It is the largest walk in the world with over 40,000 people.  Each year the Canadian Soldiers make this pilgrimage to the graves of the 2300 soldiers (video) who lost their lives freeing the town of Nijmegen during World War II.

     The walk is in Holland; it is 40 km each day for four days a total of 160 km, WOW! I would have loved to do this and before MSA was fit enough to do it as well, but MSA has other plans for me.

     The training started in April with each month getting longer. By the time the precious teams are picked the soldiers have various mileages under their belts and scars from the blisters.  Soldiers train for this walk not knowing if they will make the team until just a month before departing.  To make the team they do not only take into account your physical fitness and stamina, but teamwork and strong leadership is also criteria as well.

 There are over 1 million spectators that cram into this small town to partake in this event.  Luckily for technology and me I was able to log into their main site and  

the web cameras they had set up and listen to all the excitement and watch in case I got a glimpse of my boy.  The military also had a web site with a camera called the Combat Camera where was possible to download videos.  They also have their own Facebook page with more pictures and videos and live footage, so you really feel apart of the activities. This meant I did not have to wait until our son got back to see the pictures but when he told of his experience I knew of the area he was talking about.  If it wasn’t for the MSA we would be comparing notes about distance and time, but I cannot help get excited over any physical fitness, involvement and dedication.  

                                  
      
     
     The team will met at the Canadian War Museum, stopped at Vimy Ridge and pay their respects to the 11,000 plus graves we have there and then continued on to the walk of the world, where he learned first hand why our soldiers will always have a special place in the hearts of the Dutch (video).