Love Is In The Air

      It has been a year that we are in the Condo and sold our house. Although, I miss the house, and not for the reasons you may think. Like I said, we were in the military and moved a lot. Each place we bought a house, it would feel we just would get it the way we want and we had to go. Well, this house was done, so many memories, that I want to stay but I know I have to go. Just to think, I will never live in a house again or go in my backyard. We decided this before MSA decided for me.  
    

     With this diagnoses of MSA, you are not only mourning the physical changes of your body but also the physical changes if your life.  I don’t think people realize how much effort goes into everything now. When I went home to Winter Camp, I flew. Now, the average person thinks great she is flying. But, I had to make sure I didn’t choke, because if I choke in the plane where would I go? Plus, if I have to the bathroom it is going to be challenging. For sure I can use the seats as a crutch, but do not forget there are people in these seats. So I didn’t eat or drink going or coming. Each week, there is a plane trip somewhere.

   People think this is a new disease when in fact the first was discovered in 1960. It was referred to as Shy-Drager. But there is little known about MSA or was because people refer to the wrong name or compare to a disease they know, like Parkinson. You can have symptoms and it is related to Parkinson but, the medication does not always work on MSA patients. MSA is more rapid and effects all your autonomic muscles like balance, bladder and swallowing are the three major symptoms. 

     The only organization in Ottawa that recognizes MSA is the Parkinson Society of Ottawa, they have a great pamphlet on MSA. We have a Team registered for Superwalk called Brenda’s Journey. I feel it important to raise awareness and educate the people about MSA. We have to be on people’s mind for a cure is to be found, and what better exposure!

     What a better way to spend Valentines than with the people you love and who love you....  your family! So on the way back from Quebec, we stopped at my sister’s for Valentine's. There were 12 of us for dinner. Not only did her and her husband make a wonderful meal but also they thought of everything. I was sitting at the end, I was close to the facilities and surrounded by love. What more could a girl want!

    
 My Grandniece and nephew helped, they took orders from the menu, served and delivered the food. What great helpers. Did ever notice children are unbiased and assumption free? Why can’t adults be like this?  We had prime rib, baby carrots and turnip,and for dessert we had brownies. It was all-fresh and heart shaped. My sister and her husband did amazing job. From the main meal to the dessert, everything was so good!

                                              Love is definitely in the air!

Winter Carnival Du Quebec 2012

       We decided to go to Quebec to see the Carnival du Quebec while I could still walk.
      We arrived at my mother-in-law's on Friday evening. I have been going there for 27 years and we sleep in the room downstairs, the one my Hunny slept in when he was just a boy.  Now, when when we go I can’t go downstairs so, we have to sleep on the main level. I know to most people this doesn’t sound like a big deal but it is for me.  Often, I know the solution, but it is having the choice that is the problem. When the choice is made for you, it is a different story. That is what MSA does for you,it  makes the choice for you.

  It would be slow going but when I am in a wheel chair there will be so much I cannot do. Have you ever thought about this? There is no way my husband could push me through the snow. Maybe, if I was on a sled, but getting down is an issue and I don’t have the strength in my legs to push me up. Another event I will have to psyche myself up for. There will be lots of people, which makes if difficult to meander around, and it is very slippery. I will have to hold on the whole time. I tend to not lift my feet high enough now but with snow there is no traction, I was scared to death, but no one knew this. The people in wheel chairs probably don’t get out much in the winter.

       

     Of course, I am always so cold so, I will have to dress warm, and there is always the bathroom issue. I remind myself of my kids when they were young, you just get ready and you have to use the facilities. So, where ever we go now the first thing I do is check where the facilities are. This would deter most people but there are things I want to see and do, and Carnival du Quebec is one of them.

      The next day, we went to the Carnival. We parked at the Chateau Frontenac. The Carnival is in old Quebec, which is very hilly so I will to have pace myself. We went to see the snow sculptures; it always amazes me when someone has a passion. You could definitely tell that here. The work that went in to some of the sculptures is amazing. They also had a huge slide made of ice and to watch the faces of the children coming down this was good to see. From there we went to watch the obstacle course and the horses pulling men on a sled.

  

     From here we drove to the Ice Hotel. Again, it was amazing.  They have 42 rooms you can rent for the night but why? I get cold enough without sleeping on a block of ice. Why would some pay to have their butt frozen off is beyond me, but still neat to see. After, we toured the place we stopped and had some Amaretto out of one of their glasses that was made from a block of ice. We bought a glass version as a souvenir. More photos

                                                                                                 

      


     When we got back to my mother-in-law's we chatted and had a great dinner. We had a few laughs. I am so grateful to have wonderful in-laws. I have always felt welcomed there, we have never had a misunderstanding in 27 years. 

   


 The next day, on the way back we stopped and had coffee with my husband's dad.

 We were on the way home and on our way to my sis’s for a dinner party….but that is next week’s entry!

Coming Home and Facing Reality

     Time to come home to my Hunny and beautiful kids.  I was nervous about the flight, not nervous about the flying,  because really what is the worse that could happen…crash? Oh,well. That is one good thing about MSA, it sure puts things into perspective. I was having issues with my bladder and thought I might have to postpone the trip; this is one of many symptoms of MSA, bladder difficulties. This is something we find embarrassing or shameful, when the people who make us feel this way should be the one's embarrassed or ashamed for not being understanding.  We are not doing this on purpose, we have no control. Did you ever notice when you go to bathroom there is usually a handicap bathroom but how do you get the main door opened is always challenging?

     Air Canada shipped my walker right through to Ottawa. They brought me to the gate in a wheel chair and parked me at the gate. Normally, this would not be an issue but they left me sitting in the chair with a delayed flight of 1.5 hours. I ended up having to use the wheel chair as a walker. Do you realize how cumbersome wheel chairs are? And there are no brakes. Everyone was watching me, but no one offered help either, afraid they might catch what I had. At least I was live entertainment for the people.

     I got the connecting flight to Ottawa. I almost had a choking episode, so I did not eat or drink until I got home. The trip proved one thing; it will be my last time to travel alone! Hunny met me at the airport.  I came home to a bouquet of flowers, shrimp, cheese and crackers and oh yes, red wine. All my favorites! We sat and just talked and talked. 

     I went to see Dr. Grimes, a.k.a "He Who Shall Not be Named", because he is one who gave me the bad news about the MSA. He had me do the typical tests but I was having trouble with the left. He had me clapping, tapping my foot, opening and closing my hand and walking tests. There is no test that confirms MSA, it has a lot of similarities to Parkinson, and a lot of people are misdiagnosed. They usually rule out other diseases and see what they are left with. They don’t know what causes it, therefore, they don’t know how to fix it. So, I am going to fix myself.  Dr. Grimes gave medication for my bladder and something to help me sleep. I slept through the night the first time in a few months, it is worse than having a new baby in the house.

    To think when I first started having symptoms I told my boss at the time. When I told her I started crying because she knew something was wrong. She said, “don’t be silly you’re the healthiest person I know”. Those words keep playing over in my head.

     Another symptom of MSA is voice loudness and lack of. Not sure how many of you have sisters, but I have nine and we all want to be heard. I find myself having to start conversations over because I am not loud enough or I run out of air. I get tired so I told them they cannot keep making me start over or I will give up and not speak.  They also try to guess what you are going to say they drown you out when doing this. I get tired especially now, so, one time I said to my oldest sister,“ Is that your final answer or would you like to guess again”? We had and have a good laugh at this expression all the time and she informed me that she uses this expression often now. What a great story!

 I brought back t shirts for everyone, which we all wore to celebrate our daughter’s 23^rd. We had a nice dinner followed with cake and gifts. We had a lot of catching up to do, three weeks is a long time. I missed my Hunny and kids. 
    
There is no place like home!

The Last.....

     This week I am calling my entry the LAST, because it will be my last time I will be traveling by myself, the last time I will be walking by myself, my last time partying with family and the last week of Winter Camp, but most importantly the last time I will be spending time with family by myself. The next time I come home, I will have  someone helping me and will have to stay at a hotel where they have handicap accessibly.  I won’t be able to visit if I have to get up the stairs to get in the house. Of course, I do not expect anyone to think that far ahead, but I do. The next time I am here, no doubt it will be in a wheel chair as the MSA progresses.

We all got together for a night of singing and dancing, It was such a good time and listening to all that talent was a hoot!

     Last week of Winter Camp, and so much to do and so many people to see! I was at base camp for the day and the fifth oldest sister was picking me up to stay with her a few days.  That night my brother had wing night, so myself and two of my sister’s went to support our brother. We had a few laughs and good wings. 

     The next day, we took a drive to North Sydney. Can you believe I lived here for 22 years and did not explore or appreciate this area? The scenery was beautiful; the way the cliff met the water was magnificent. I was too busy growing up that I left without exploring the whole island. On the way home, we stopped and surprised my friend at Kay’s Kozy Korner. We had breakfast (which was excellent) and set up a day to come for a visit.

     I guess I caught a flu because I could not get warm. I know with MSA the body temperature is not the same but this is crazy. In the summer, I do not sweat so my chances of over heating are greater but this is winter. I had on fleecy PJ’s and fleecy socks, and two fleecy blankets on me while I sat beside the fireplace before I got warm. I stayed here until this bug passed but that meant that I missed seeing another dear friend of mine. Oh, how I wish I could drive or get in and out of the car by myself. Those days are long gone.

     The next day, I went back to base camp. That evening, I went to the baby sister's to beat her at crib again. One of my nieces came to visit me. It was so nice of her to come. This niece use to cry after me when she was a baby, now she is grown with a baby of her own.

Today is my daughter’s birthday, the first time I missed it in 22 years. We will have to plan something when I get back.

         My sister whose house is where base camp was, took me to see her friend and I went in the 4x4. We drove all along the shore and down to Low Point Lighthouse. My friend’s father was the lighthouse keeper when we were kids, her house was my second home. I took lots of pictures it was nice to see how things changed. One of by brother’s lives near there, so we made a pit stop. Another thing the MSA affects is your bladder. Of course, my brother wasn't expecting us so when we drove in he was wondering who that could be. But when I took off the helmet he was surprised to see me, well I did resemble Kazoo with the helmet on. I told him I had to share it with him. We would be back later to share my niece’s 16th birthday! Another thing to be thankful for.

     Got up early and went to see my friend and her mother, it was her father that was the Lighthouse keeper. I spent so much time there growing up. I know it was hard for my friend's mom to see me like this. It is as if my body is 85 but the inside did not catch up. After our visit, we went back to base camp. We were going to have a sleepover. My sister who is  in the country had some problems so could not make it and my brother who is the Wing Man . We decided to have pizza and junk food and play games. My brother, who is next in line to me, was coming over when done at the rink.

 My sister hosting the sleep over ate and then fell asleep. We bugged her after that it while it was a sleep over, we did not know that meant we would be watching her sleep.

The next day was a day of rest and packing. Everyone came to say good bye until next time!