Quebec in September

       To make summer more interesting for me Hunny took a week each month. We went drives, walks, grabbed coffee and just hung out together.

     We were going for a visit to Quebec, my favorite city in the country.  I was nervous at the same time even though I was anxious to see everyone, this is my first with the catheter, and my speech and swallowing had gotten much worse.  There is always the chance of choking. Plus Hunny has too cut my food like a baby. I surprise myself sometimes how I can put these feelings aside and focus in the moment, but that is what you have to do with MSA, you cannot plan for the future, as my blog says,

 “One Day at a Time".

     We spent a few days with Hunny’s mom. This is the first time we saw her since her surgery. She is healing quite nicely, although she seems to think it is slow, it is open-heart surgery after all.

      

      We also took a ride to l'ile d'orlean. We had not been here in a few years. We took the 1 km bridge over the St. Lawrence to the 5km Island of six small towns.  There are around 7000 people spread over this quaint island.  We did some sight seeing I even had Hunny run up a tower to take picture.

        

     The first time we went there over 26 years plus, we ad stopped this chip truck which was still there, needless to say on the way off this island we stopped again. We had a great day. We return to his mom’s with a full tummy, color on our cheeks and a smile on our face.

  

   

     

     The next day we wet to see his dad.  It was the first time seeing them with me in a wheel chair and also a catheter.  We had a nice visit.

   

    

   We got too all his bother’s, sister, mom, most of the niece’s and nephews, and his dad.  I was very glad of this, because we know life holds many surprises for us. The next visit I will be different.

SuperWalk 2012

     My daughter had informed me that she had registered a team for us for the Ottawa SuperWalk.  At first I was not sure how react.  I knew I would not be the one in a wheel chair but I would be one of the youngest people there with MSA.

This is the largest national fundraising event for the Parkinson’s Society, I knew every penny counts but I wanted to make a difference.

      My daughter also told me of this logo she was designed for me. I love dragonflies, so this logo was going to have the MSA colors for the body of a dragonfly and the team name below it. It was hard imagine but it was more beautiful than words could say. She also had this tattooed on her foot, without the Brenda’s Journey.

When she showed me we bought it, and the rights, so it was our logo, which meant we could do what we wanted. What an honour not only having this tattoo, but now this logo. 

We have a trust fund called Brenda’s Journey Trust, but it is not registered so I knew that a people would want to donate to a registered organization. The Parkinson’s of Ottawa are not only registered they recognize MSA, so we could designate  the funds we raise to go towards MSA.

     MSA is often referred to as Parkinson’s Plus, because of the similarities but MSA is more aggressive.  My experience has been when we have said MSA in the past no one knows what we are talking about, but as soon as we it is cousin of Parkinson’s but more aggressive they seem they understand more.

       Our team is called Brenda’s Journey; I was thinking how are we going to raise money for our team. I contacted the  Parkinson’s Society Ottawa and told them our plans. The  

Ottawa Parkinson’s Society was a great help; they helped me draft a formal letter that I could send to my, friends, my blog readers, something to put on Twitter and Facebook. Seeing how it would be difficult for canvas door to door, I would have to depend on the Internet.

      Each day our Team amount grew and so did our total.  Our team grew to around ten and all together we raised over $5000.00 dollars. I was very happy about this.

                                                 

     Hunny picked up everyone’s shirt and my daughter and in-law’s put our logo on the back and made matching bandannas for the walk. My niece even made t-shirt for her little boys. They were going to be in their wagon so on their shirt it said, “I roll for Aunt Brenda”, on the front but our logo on the back.

     

     The day finally arrived but was cancelled because of lightening. We had everyone come to our place so we could give them a shirt, a bandanna, get a picture and thank them for their hard work in helping our team becoming the fifth highest money raisers for the SuperWalk 2012.

  

 SuperWalk 2013, September 7 & 8, see you there!

The Hot Air Balloon Festival

  

     Today we are going to see the  Hot Air Balloon Festival. I have always looked in the air to see beauties flying by, I love term and could watch them for hours but never had a desire to go up in one. Until MSA heights, were the scariest thing for me but now there is so much more to be scared of. You know and want life to go on, but it is what I will loose along the way.

    Every year they have they have this hot air balloon festival, but this year we decided to go. We picked a beautiful day to go.  I got in new chariot on wheels; on the inside I hated not being able to walk on my own because of this MSA.

 The place was huge and very hilly and rolling. At times I was terrified that my chariot was going to fall over. When we got on the grounds the first thing we saw was a woman on stilts.  That is what my legs feel like some times, like they are stilts and my knees do not want to bend.

       I was still eating normal food, so we had a snack, some homemade chips and drinks it tasted good. The MSA was still causing swallowing issues, but when I am very careful I usually do not have problems.

                                                

  We saw lots of rides, a live bands but something that struck me as odd. The main performance was going to be starting that evening even though this event was not starting for at least 8 more hours people came early parked there lawn chairs and there were lines and lines of empty chairs and everyone was respectful of their position. They knew if they wanted a better view they should have gotten there earlier. But we were not there for the rides or the main act.

     We went to the field where the hot air balloons were taking off.  They arrived in vehicles, which looked like there were horses in them.  They did not know if were going to let them go up because of the wind. The balloons did not go up all weekend but we were hoping this was not the case today.  Then there was a big cheer from the spectators the balloons had gotten the green flag to go up.

                                               

 

     Within all of ten minutes the fields were full of balloons, color and life. There was so much excitement. I loved every minute of it.



 There was a special balloon for me, one with a big dragonfly, which told me not to give up hope. 

Decisions

     
     Today I wrote my family to give them an update on the MSA progression and me. This was hard to type as well as hard to read. To imagine all this is going on with your friend, mother, sister and wife. It seems the MSA has advanced enough that even the Lifeline is not enough for me.

    


     

Since being diagnosed with MSA my older sister has asked to come take care of me.  She is so selfless but more than tat she is a great caretaker. The MSA is progressing fast and I cannot be left alone. I have a fall almost weekly; a swallowing issue where I cannot get any air almost daily, my voice is weaker and weaker and cannot go to far with my walker.

                                                  

                                           

     I am a very lucky person. Not only to have someone who wants to help take care me and loves me, but also loves my family.The fact that, it is not just a job and this person loves me and is also my sister. We have always been very close even when we were young.  There are 13 years between us and she has always been special to me. When I was young I went everywhere with her but when I was 3 she moved to Toronto to start her own married life and family.

      

      I was a heart broken three year old. Each time I would see a plane I would wave my arms frantically and cry out a version of her name and say, “Deretta come home, Deretta come home”. My mother took me to Toronto to my sister’s wedding. I was so happy too see her, but I said to her that she was married now so she would not be coming back home.

     

     Of course she came for vacation and anytime I got mail from her I would get excited. She would always send a birthday card that had a princess on it and a silver dollar. One summer when she came home I even asked if she were my real mother. We get a kick out of that even now.

    
      A couple of years ago after I was diagnosed with MSA, there was this woman I wanted to meet. She had MSA for three years by this point, more advanced than I.  I brought this sister but I have to wonder was someone sending a message to my sister reminding her what would be involved in helping take care of someone with MSA.

    So I guess the time has some time to admit I need help and will take me sister up on her offer. Also from this point forward I will always have someone with me or let people know I am okay.  I know this will ease a lot of minds but for me it is another thing I will loose.

 I am very fortunate to have this love and that it will have made a full circle!