Our First Formal

     

     Instead of taking one big long holiday we thought it would be better to split up the summer, so  Hunny took a week off each month. I was having bladder problems and knew if we went on a car trip we would have to keep stopping for me to visit the bathroom.  It is hard to find an accessible bathroom where Hunny can take me where we both are comfortable and a clean facility. We did not want to stress over this.  This MSA was sure affecting my bladder, which is one of the main symptoms.

     The first part of Hunny’s vacation started with a beautiful wedding.  We are going to this wedding at the Watson’s Mill 

in Manotick. This was a beautiful old building, which is older than Canada itself. It was built in 1860 and is suppose to be haunted. This was the first formal event with my wheelchair.  Since diagnosed Multiple System Atrophy (MSA) my walking is very bad and I have to use my wheel chair when we go out.  Thank goodness we knew a lot of the people there. At one point I had to go to the bathroom, so a friend had taken me to the washroom. Afterward I told my husband how I felt; now I would have to learn to use the bathroom and pee on command.  Like we say to our dog, “Go potty, go potty”, not that anyone said anything but you know how you feel when someone is waiting for you. Well I survived this and we went back to join the party. It was a wedding mingle and there was only a couple of tables and chairs.  The bride and groom realized without us saying anything that sitting in this wheel chair always looking up was hard on my neck and trying to talk loud enough to be heard would be difficult and so they had a table for me. Due to the MSA I was having trouble with voice projection as well. 

                                                   

     The bride and groom looked so happy, the weather was gorgeous and the fact that so many people came to help celebrate this happy occasion. It was great to be surrounded by so much love and joy. At one point Hunny went to sample the 20 year old scotch. There were so many happy faces, dancing and so much life all around us. I was glad we came and even though I was in my wheel chair so happy we came.

      I had to go the hospital to have a throat swallowing video done. With the diagnosis of MSA also came the problem with swallowing for me. Often I choke when swallowing and have started to avoid foods that seem trigger this effect.  It sees if it is too juicy or there is too much acid it will cause a choking episode. During this video they take different textures of food and mix them with barium so they can watch how you chew and swallow your food. Sometimes when I choke it feels as if my throat takes a Charley Horse and I have to wait until it passes or relaxes.  They didn’t really tell me anything new except give it names and provide validity to what I was feeling. As a result of this video and the MSA we know I have lyngrospasm with a deteriorating esophagus.  I can no longer eat cereals or stews, crackers,lettuce, celery, pop, oranges or orange juice or grapefruits, all my fruit have to be peeled and cut up, this is just a few of the changes we have made to my diet. So instead of taking a chance on choking I just avoid foods that bring on these spasms but sometimes it is just swallowing my own salvia.    

     

      We spent the rest of the week enjoying each other’s company, going for long walks and visiting Starbucks. There was no pressure and we got to relax. It was definitely another Us week!

Daughter #2

     I am one of those people who believes everything happens for a reason and we cross paths with a person for a reason. When diagnosed with MSA in 2010 I was the most unlikely person to get this awful disease. I didn’t smoke, didn’t drink, and ate all the right foods. I was a marathon runner after all, I was in amazing shape. Then I was diagnosed. I think this goes to show MSA does not care if you are male or female, how old you are or how healthy you are, this is not a prejudice disease. When you think about it who is better to raise awareness than someone who watches what they eat, knows the importance of physical fitness, and someone who is not what the statics suggest~ a female younger than 50 and healthy, also someone who is technically inclined to get the word out. I fit all this criteria, so I guess I win!

     In 2007 I met this girl on Facebook. She had the same maiden name as my mother. It is not a common name and she comes from the same hometown. I contacted her and turns out she is my cousin; her grandfather and my mother are sister and brother, so that makes her her mother and I first cousins. I have been gone from my hometown a long time and she was only a year old when I left. We started corresponding, only five days later she was accepted in Teachers College here in Ottawa. I sent her some maps and offered to help her find a place to stay.

     When she got to Ottawa we had her over for dinner. After she left we had a family meeting to discuss if anyone had trouble with me asking her to live with us. Even though her and I hit it off I had to respect that other members of our  family might not feel this way. Nobody had a problem with this, so I offered for her to stay with us.

     We had a great year for my daughter, and when my son came home. A cousin was like having a sister for them and another daughter for me. Sisters are special and I wanted them to know this feeling. It was great sharing some common family traditions.  The aunts and the cousins wouldn't have gotten to meet otherwise. She did very well in school and I liked to think we helped with where she is today.

     Ever since then we have kept in contact and when in Ottawa she comes visit. She is coming for a visit today.  This is going to be so hard because  not only do we have a special bond but I was the one who got her into physical activity and now I will greet her with a walker. It is the first time I have seen her since diagnosed with MSA.

     After the initial tears, we had a great visit. We spent two days together. She dyed my hair; we went for a walk, had a coffee and spoiled ourselves at the Swiss Pastry and had some quality time together. The kids came over that night we had dinner and a few laughs.

We had a great visit with sibling #3 and daughter #2, with me, Mom #2! 

Canada is 145 Today!

      

Today is Canada’s Birthday, Happy Birthday!

     Usually we go to town on Parliament Hill and go to the Supreme Court. We will not be doing that this year. Since my MSA diagnosis and the fact that it seems to be progressing so fast I overheat in crowds. There will be lots of people down town for the celebration but we will not be joining them..

     Canada is 145 years today, I have not to think of the fact that I will not make it to half of this age. It is hard not thinking of this each day, especially as I become more limited with this MSA.

     

     Now that we were not going to town we would have think of a different way to celebrate this holiday. We went for a drive and got some poutine in St. Albert, very French Canadian and very good.  We watched some of the celebrations on TV. It just takes a diagnosis like MSA to appreciate the little things.

      We came home and Hunny cooked pork chops, cheese, potatoes and red wine. Hunny now has to cut my food for me. I do not have the strength or the co-ordination to cut meat or much else for that matter.  After dinner we had some time so I practiced my speech. It has been a couple of weeks that the speech therapist has been coming to give me exercises to practice. The MSA has been affecting my speech with clarity as well as volume. It is hard to stick out my tongue as it quivers, touch the corner of my mouth, make a kiss sound, or to fill my cheeks with air. One of the exercises is to say the “ah” sound and hold it as long and as loud as I can, my goal is at least 20 seconds.

             

      After we ate and I practiced we went to Ottawa River Parkway to watch the fireworks. My daughter and son-in-law met us to watch the fireworks. We had to watch the fireworks from inside the car because it was too much for me to stand and watch outside and I can no longer sit on the ground, as my body doesn’t want to bend. It has been almost a year since I have sat on the grass. No more picnics on the beach, or sitting in the sand for me. I don't usually sit in the living room or any where but my wheel chair unless someone is with me because it hard to get up. 

      Even though I have this awful disease it is nice to know my family recognizes the importance of our time together and when ever they are available to get together they always suggest it and never wait for me to ask them.

We are making good memories!

Blessings

     Today we go to see Dr. Grimes or He Who Shall Not Be Named. He is the movement specialist but there is a lack of movement in this body. He is the one who diagnosed the MSA just two short years ago. I am not looking forward to it because he is going to ask about my falls and I am going to have to tell him about the fall against the window and the fall I had yesterday. I was being so careful and sat on the couch closest to the armrest so I would have it as support when getting up. When it came time to get up my legs deceived me and gave up. I fell into the end table then continued forward and tried to grab the ottoman and pushed it into the chair while falling into the patio door. I thought the stain glass lamp was going to fall on my head. Thankfully it just rocked back and forth and did not fall on my head. Again no cuts or a broken bone just bruises.  As telling this to Dr. Grimes he said what I thought he would say, I must use my walker at all times now because there is no warning with MSA you just fall.  To think when I just want to get up and go get something or move there is no doing this, even if I want a coffee I cannot get a coffee and push my walker. Another freedom gone!

     It is amazing the things we take for granted until they are gone. I cannot tell you how many times I have been sitting and thought will just get up and grab that. But there is no more just doing anything any more. My three point turns are now fifteen point turns. When moving to the left I seem to have more trouble. So there is no thinking what is fastest when turning I have to go to the right.

    
      On a brighter note two of my friends are coming for a visit. Turns out that my friend from Alaska has a woman cousin who is married to my other friend’s husband’s cousin. It is such a small world in some regards.  When these friends came over we planned a lunch of finger foods. I have been friends with each of these ladies and it was going to feel god bringing them together. We had a nice lunch, lots of laughs and a great visit.

     

     My daughter’s mother-in-law was on a cruise on the Queen Mary 2. A  luxury liner which is fastest in the world. When she got back she wanted to visit as well. She came one evening and we talked about her trip. 






     In the course of her conversation she mentioned how important it was to get a Madonna medal and have it blessed for me at the 
Notre Dame Cathedral in France, one of the best known churches in the world. This meant so much to me not only because it was the Madonna but she is of a different religion but realized how much this means to me.

     A person has to remember all these good intentions; support and prayers are not going unnoticed, and that blessings come in many forms!