Halloween 2010

     I love Halloween! It is such a fun time of year. We always decorate the house, have scary music playing and get dressed up to give the kids candy. Of course we are kind and gentle with the young kids, but, we try to scare the older ones. It is always fun to see the young ones all dressed up. My son has been moved out for about 8 years but my daughter and I have a blast with this occasion. We always get treat bags fill them with goodies get in costume and hand them out to the kids.

    One of my favorite Halloween stories is when we lived in Winnipeg. My husband was in the military then and my kids were going with their friends. I knew I would prefer to see who was coming than to open the door to someone dressed in costume. 

About one week prior to Halloween, I stuffed a set of my husband’s clothes and sat it out front on a lawn chair, then the night Halloween arrived, I dressed up and sat in another lawn chair. I was a witch with long grey hair. I could hear these young people coming, they were loud and swearing. I thought I would fix them. So, I covered my face with the hair and sat very still in the chair and had the bowl of treats by my feet. They rang the bell a few times as they thought I was a dummy, then, they saw the bowl. The boy reached in to grab a treat and just then I grabbed his hand. I said, "What are you doing”. He screamed and ran down the driveway. I still laugh when I tell this story.

   This year, I was feeling down because Halloween was coming and I knew the kids would not be coming to the Condo for treats. So, not only was I not going to be able to decorate, get in costume with my daughter but, there were no kids coming either.

     That being the case, I knew I had to go to my sister’s where Halloween was happening. She would have little ones coming for treats and decorations, and the grand children would be putting on a costume and getting all excited.

     I was still using a cane at this point. So, we arranged for my brother-in-law to pick me up and then my Hunny would join us for dinner when he came to get me later.

      The children were so excited my grandniece was going as the Queen of Hearts and my grandnephew was Captain America. They were so excited.

     I was going to be passing out candy probably for the last time. I not only had to get too the door when it rang without falling but also before the kids gave up waiting on the other side.  The other challenge was going to be giving the treats without falling on the children. With MSA when you reach for something, or reach forward it is very easy to lose your balance.  I usually have no warning, and just fall. This is a common symptom of MSA. The treats were up high enough so I did not have to lean over too far and the door opened to the left so I could hold the doorframe when passing out the treats. I am going to get an Oscar Award when this is all over.


It is the little things in life that provide us with so much pleasure!

Our Anniversary

     September was our 26^th anniversary.  We kept it low key; I could not help but reflect to just one year ago...  how this MSA has changed everything.It is more than a diagnosis. all those plans and dreams have changed. 
To think, we were finally at a time in our lives where our kids were grown, doing well and on their own and we were young and could start doing things we had planned.
  

    Another milestone, around the same time (while waiting for diagnosis), was our 25th Anniversary.   Leading up to this day, my husband did something special for 25 consecutive days. 
     We were planning on going hiking around Scotland and visiting Romania for our 25th.  That was where my parents were from…but I guess that is not going to happen now.

     Our kids decided to have a party for us. They had our family who lived in the area and some friends.  We have always liked to keep things low key, so it was small and intimate.   

     I still had not been diagnosed with MSA when our children had the party, but the signs were there. I remember my balance being so affected that I just had water to drink because I did not want anyone to think I was drunk. I even kept changing my shoes to make sure they were flat as possible. I kept loosing my balance and falling against the wall. I knew I had to manage to keep it all together for our children and for this occasion.  

     We were remodeling the guest bathroom on the main floor so I left a pen for people to sign the wall. Very ghetto but fun, we knew we would be painting over it.

     Our children did a wonderful job and their speeches brought tears to my eyes, so very hard not to burst out crying. They had spoke of how wonderful it is to see so much love all through their growing. We are so lucky we decided to have children right away. We got to spend so very much with them.

  We  sat and watch the slide show our children had made for us.
 So many memories gone but so many still to come!

Looking Back at My 48th!

     Well, it seems the MSA is advancing, so, it is time to start realizing the time has come for some equipment.  A Case Manager from CCAC came and assigned a Physiotherapist, for a fall I had back in June, and a Speech Therapist,  because I am having trouble swallowing and choke occasionally. I hurt my shoulder and it is not getting better. Of course, it probably does not help that each time I lose my balance (which is daily) I try to counter act by grabbing onto door frames or chairs with this arm.

     It is a wonder why people who are sick don’t get super discouraged by people in the Health Profession. When the Speech Therapist came I was told I had a degenerative disease so I could basically try all I want but it wasn’t going to do much good because I have been told it would just get worse. Good thing I am determined, stubborn person. And also the Speak Up program has proven different.

      The occupational therapist has recommended grab bars for the shower and also a walker. I have been having lots of falls without warning, When I fall it is not like a sack potatoes, it more like a tree, “timber”. I noticed few things that we have to change our thinking on this.   We should not be thinking we are disabled, we need to think it will make us more abled. Also instead of thinking the walker folds like a wheel chair, I told my therapist we have decided to say it folds like an accordion. We also have special parking, which we refer to as privileged parking. It is all the frame of mind.

  
     This week we are also celebrating my 48^th birthday. Hard to believe one year ago I ran a marathon, (42 km) in May and then 21 km in  The Army Run September, and now we are talking about me getting a walker. A person would think, she must have been in some major accident, to end up here. But according to “The notorious THEY”, I was doing everything right. I guess I should have been doing more of what we are discouraged from, like smoking, drinking and eating garbage food. Who Knew?

     A goal for my birthday, which was September 23^rd, (remember were looking back) was to launch this Blog. Which I did, and I remember thinking are there whose who are going to want to read this? I also thought if I get 1000 people I will feel like perhaps I have something to say that someone would want to read. Well here we are six months later and I have had over 10,000 views. Very happy about this.

     
     The day of my birthday my friend and I went for walk with her assistance and walking stick. We went and got gelato. Since everyone in my family but me has had Thai, I wanted to try it. My children came for dinner and we ordered Thai.  It is now a family joke because everyone liked it but the Birthday girl. My Hunny got me a Blackberry Bold, which has a bigger screen and full keyboard. If I need him, it would be easier to contact him. My kids gave me a basket with a gift certificate for The Moulin Wakefield Spa, it also had bath treat stuff and a Tommy sweater because I am always cold. I also received so many well wishes on Facebook. Once again, I am reminded how much love and fortune surrounds me.

My Pot of Gold

     Everyone has heard the expression, “Pot of Gold at the End of the Rainbow”. Well, I am one of the lucky few that has found hers. My rainbow is all the love that surrounds me and protects me, and my pot of gold is all the treasures I have received in the from people: things in the mail, books and memories that bring a smile to my face and warmth to my heart... flowers, cards, old and new friends...

     I must have done something right because I have so much love and good fortune. Or, maybe the expression, “paying it forward” is true; we never know when we might have to collect on that. I grew up very poor but I did not let that stop me from knowing in my heart what was right and wrong. I always was good to people, friendly and helpful.

     I was raised as a Catholic and although I do not practice the way some do or suggest, I still am a woman of faith. I have not discussed this with anyone, but have received many religious items. This just reminds me that I have a lot of people praying for me, and that there is power in prayer.  I have received holy water for my prayers. I have my mother’s scapular that she had sent to her sister; my cousin mailed it back to me. One sister gave me the prayer beads I remember growing up seeing in my mother’s bedroom, so that brings comfort because I have them where I can see them, I think of her daily, and how can thinking of your mom not be a good thing. 

     I have received praying stones that we did a cleansing ceremony and recharged with good energy, so even if you do not believe in this, how can doing something positive with a loved one not be good. I also received Oracle cards of the Saints, which I read everyday, being mindful  of the wisdom that is written on these cards.

    My family and a few friends know I love dragonflies. I also have one tattooed on my front hip. To me they are spiritual.  So, now every time these people see a dragonfly they think of me. This was proven in November when I went to the mail and this friend who I have not seen in eight years sent me a beautiful pendant of a dragonfly and letter comparing the traits of a dragonfly to me. So much thought went into this letter it brought tears to my eyes. My family has bought me many dragonflies, so, I therefore I know I will never be forgotten.

    I have received books (diet I wanted to try) and met a few authors which we would have no reasons to cross paths except we all have MSA. I have been sent a Guardian Angel Bear to watch over me, sent by someone not have had the privledgde to meet yet. I appreciate its meaning and job!

    I have made some incredible friends online due to MSA.  Some are caregivers, some are people with MSA, some are the ones left behind because their loved one lost their battle with MSA. I have been sent MSA braclets, that I could share... it all it reminds me that MSA does not discriminate. So cherish your Pot of Gold.