New Challenges

     Well the next couple of weeks are hard, so it is going to be hard to read as well. I try to see the positive it most situations but sometimes this MSA gets the best of me, this is one of those times.

    

     I knew this day was coming; everyone with a terminal illness must face this especially if you have MSA. Even though I know this day is coming it does not make it any easier.

     We made the appointment with our lawyer, John B. Piazza. Before going to see him there was heavy thinking and decisions to make. It is not the first Will we had drawn up, we did have one with each house we bought. This time it was different I was singing Power of Attorney over to my husband. It is oddest feeling, even though I trust him whole heartily. I was still giving someone all the power over me, to not only to make decisions for me if I cannot make them for myself but also to remember those wishes you wanted when the time came. It is written authorization for this person to act on your behalf in business and private affairs.

      The other matter was Living Will. I do not want a bunch of tubes keeping me alive like a puppet. If you start with the tubes when do you shut them off?

I also don’t want my love ones having to make this decision it will be hard enough. I guess this is the something positive, knowing that this is all taken care of because it was on my mind.

     I have read a lot about MSA and all your autonomic muscles at some point fail, this includes breathing on your own and swallowing. A lot of people that have MSA get a tracheotomy and a feeding tube. I have not decided what I will do if I have to cross this bridge but I want to make the decision that best suites me at that time.

     

     The next order of business was having my Case Manager come for a re-evaluation from Community Care Access Centre (CCAC). This is a great program in Ontario. They try to help you stay in you’re your residence as long as possible. I was having more falls and it was unsafe in the shower alone. Not only is it hard to get dressed but when I am pushing my leg into the socks or pants cause cramping now. Another, symptom of MSA, the muscle spasms. So I met with the Case Manager and it is necessary for someone to come each day from Monday to Friday to help me shower. put cream on, comb my hair and get dressed. This is great that they have this service but no more are the days where you stay in bed or in your PJ’s all day, if you want. Another freedom gone!

     So my helper started coming that Monday at 8:30 til 10:00 and as my needs grow she is there to help me. I would be lost without her.

     They (CCAC) are also coming to measure me for a wheel chair. It is not very safe for us to be going out to malls ect. where there is a lot of foot trafffic, all that meandering gets complicated. CCAC brought a black Helio for me to try. I went on their site and noticed that you can have a blue one, so that is what I ordered. It is only 17 lbs and semi-pneumatic tires and the seat is made of memory foam. It folds like an accordian, so I am not limited who I go with. I am going to spending a lot of time in here so might as well have the color I want.

Even though none of these decisions are easy I will get through it with the love and support of family and good

friends!

Important Traditions

     
     I have always taught my children that no matter where we lived, family was very important and tradition goes along with this. I passed the stories along with these traditions, why and how we celebrate.

      I was worried because we were in a condo now that some of these traditions would be lost. My son was going away for the Easter weekend.  I thought, “What kind of celebration is this going to be?” Remember, I said in my last Blog about us being different and if people offer their help with projects it has to be under their terms. But, the family came through for me once again and proved what is important, "they got it" 

     We have been making Easter Bread in my family for over 100 years.  My son and son-in-law arranged it so that they would come over before my son went away and set the bread. When my daughter got off work would come and bake it. I was so happy that I did not have to say anything and that they realized this tradition is very important to me, to us, it is part of our heritage.  This recipe can be a lot of work; but since the MSA is progressing I cannot mix, or stir the ingredients. Cracking the eggs is very difficult. I cannot get the coordination to crack them with a knife or fork, and I do not have the strength in my arms to knead the bread, but my kids came and did all that for me. We learned to improvise and make only what we needed, I thank God for them. Usually, I give a lot away, but the important thing this year was getting it made.

     Spring and Easter is a celebration of new life. We usually have lots of family and lots of food. My sister had a potluck to celebrate. I tease her because she is the only one who has a potluck but makes enough food for all those invited in case some forgets to bring what they promised.

      There were 19 of us, all family, except the grand parents of my sister’s daughter-in-law. I know how very hard it is for an older person to see a younger person with MSA. You wouldn’t know anything was wrong with me unless try to walk or talk and the “New Normal” shows. That is what we refer to having MSA symptoms now, “the new normal”. With MSA it does not discriminate. Between male, females, color or what you do for a living, we need someone famous to bring this disease to the forefront. There are a lot of clinical trials we do not qualify for (at least this has been my experience) because we have MSA (document) and not Parkinson. The only way to confirm MSA is a brain biopsy when you die and if not it is listed that the person’s passing is Parkinson related, is this not contradiction?  

     While we are celebrating the new growth and life this spring brings, let’s find a way to bring life to finding a cure for this terrible disease called Multiple System Atrophy.

Great Friends & Family

     
     Today is exciting, one of my sister's is coming from Cape Breton. My Hunny will take me to the airport to pick her up. We have privileged parking (handicap) now so, that will be good, nice and close to the door. It s always a catch 22 for me when I have not seen someone in a while and the MSA is progressing.  They notice the change but I don’t want them to be upset. This is the case because I have to use my walker more now and look like I am walking on stilts, it is not smooth at all... So, I want to be strong and not focus on this but, I do not want to dismiss what the other person might be feeling or experiencing.

      We are having a potluck with all the family here in Ottawa. Great family get togethers, this is what it is all about. This is probably the last event where I have everybody over. It is just a lot of work and I will not be able to contribute. What we have to remember,decorating or cleaning what ever the project is, it might not be the same as you would do the project. So, things might not be decorated the same way, or as clean or the project might not be the same, but sometimes good enough is good enough. This of course is okay, we are have different ideas but, you have to realize you will have to let this all go, the control, and remember you are making memories.

     

     We had a couple of great family get togethers, which were a lot of eating, laughing and stories. During one event, I gave everyone a MSA Awareness bracelet and we all put our hands in the center and took a picture.

     My friends from Barrie came for the night. My friend phoned me and asked if they could come, I asked, “when” and she said, “now”. I love this about them they are so spontaneous. Which is a good thing, not to give me too much time to think and over analyze. I would ask myself questions like, “can they hear me or can they understand me, will they be embarrassed of me walking with my walker?” I have to remind myself they don’t see me the same way as I see myself. Thankfully, they see their sister or friend or loved one, who has been inflicted with this awful disease.

   While my friends  and sister were here my Hunny treated us all like royalty. We went for a walk and we put our feet up and watched the sunset. He made us dinner, red wine and served it.  I have to remember I am the same person on the inside just broken on the outside.

 

     My sister went visiting my other sister's and came back with an MSA bracelet and a dragonfly to decorate my walker.  This made me think of words a dear friend wrote to me recently. She had saw a dragonfly and thought of me, so she researched the dragonfly and again was reminded of me. 

Power and Poise  

     
The dragonfly’s agile flight and its ability to move in all six directions exude a sense of power and poise - something that comes only with age and maturity. 
The dragonfly can move at an amazing 45 miles an hour, hover like a helicopter fly backwards like a hummingbird, fly straight up, down and on either side. What is mind blowing is the fact that it can do this while flapping its wings a mere 30 times a minute while mosquitoes and houseflies need to flap their wings 600 and 1000 times a minute respectively. 
The awe inspiring aspect is how the dragonfly accomplishes its objectives with utmost simplicity, effectiveness and well, if you look at proportions, with 20 times as much power in each of its wing strokes when compared to the other insects.  The best part is that the dragonfly does it with elegance and grace that can be compared to a veteran ballet dancer. If this is not a brazen, lazy, overkill in terms of display of raw power, what is? You may not feel as graceful as you once did, but everyone’s eyes you are still elegant and graceful like the dragonfly because we still love you and admire you for who you really are. I’ve never met anyone who would set a goal and effectively pursue it with such passion. You are an amazing woman!

Focus on living ‘IN’ the moment


     The dragonfly normally lives most of its life as a nymph or an immature. It flies only for a fraction of its life and usually not more than a few months. This adult dragonfly does it all in these few months and leaves nothing to be desired. This style of life symbolizes and exemplifies the virtue of living IN the moment and living life to the fullest. By living in the moment you are aware of who you are, where you are, what you are doing, what you want, what you don’t and make informed choices on a moment-to-moment basis. This ability lets you live life without regets like the dragonfly. I have a feeling you can identify with this and have been taking full advantage of living “IN” the moment and to the fullest! You are such a deep and thoughtful person in all that you do; I can’t imagine you having any regrets only wonderful accomplishments- two accomplishments of which are your son and daughter.

     

     It is quite an honour to know you had such a profound impact on someone, thank you for this.These are very important messages that we have to remind ourselves of. It is nice to know when people see dragonflies I will always be remembered!

Giving One of The Many Faces to MSA

     It was a busy month! This whole month was dedicated to raising awareness to Multiple System Atrophy (MSA).  
This neurodegenerative disorder, which affects multiple muscles, has no cure and they do not know what causes it. Therefore they do not know how to cure it. We have to raise awareness if a cure is to be found.

    To start off the month, I was named an Ambassador by MSA Organization. I cannot tell you how honored I was and how serious this is to me. It affects every aspect of my life.  Not only the plans we had for the future, but the everyday things, even the way I dress. To think I had to get rid of all shoes that have any kind of a heel, tops – if they are form fitting or have a crew neck.  If pants are too difficult to pull up or have too many buttons, I can’t wear them, so I got rid of them. I can no longer wear skirts because there is too much fabric. You know how we girls like to tuck skirts, under our chin? Well, I can no longer do this, so I got rid of them. For the past 27 years I wore eyeliner. Well, not anymore. I can’t write so can imagine me trying to put on eyeliner; it would be great if I was in the clown business. I know people think you do not need make up, but it is the same with the bathroom issues, I know the solution, it is having the choice.  When going to something and we all like to feel pretty, well,pushing a walker or sitting in a wheel chair does not make you feel this way. I can no longer brush my teeth without an electric toothbrush, snap my fingers, or clap at a performance. Can you imagine if you had this disease and not being able to do so much and also not being provide for yourself? So ,it was time to step up and be the best Ambassador I could.  I want it to be on people’s minds; otherwise they will not be working on finding a cure.

     The MSA Organization quoted me (view quote)  in one of their articles. I know that I am expressing how I feel but this necessary to find a cure; I will gladly do my part. I will gladly tell everyone how this is affecting family, my friends, and me if it means finding a cure.

     The next line of business was to get the Mayor to declare the month of March MSA  Awareness Month.  I thought I would have a fight on my hands but, the year before we had brought Tim’s Shoe (video) to see 
Jim Watson, our Mayor. I reminded him of this and wrote to him like we were long lost friends.  It worked because he sent me the Proclamation in a blue bound portfolio. My Hunny picked it up for me. I scanned it and added to Facebook and sent a link by Twitter.

     We discussed starting a Trust Fund and ordering bracelets that say Brenda’s Journey on one side and MSA Awareness on the other. These we will sell for $5 and the money will go in the Trust. One of my sisters is going to make MSA purple beaded bracelets and every bracelet sold there will be a dollar donated to the Trust. It important to raise awareness and educate. Even the Michael J. Fox Foundation had to start somewhere.

 My daughter  registered a 

team called Brenda's Journey in the Parkinson’s Superwalk held every September.

     My daughter told me she is getting a tattoo to honor me.  At first, I did not like the idea because in my mind I knew how MSA was leaving a mark on my body and I did not want MSA to mark her body as well. She has since gotten the tattoo and it is the MSA color with the wings of a dragonfly.  Beautiful! We will get a logo made that will be ours and which will also raise awareness.

I am happy to say there are so many sites, MSA communities, and blogs on the the net.  I have a page dedicated to of this on my Blog.  Even though people are miles apart they are connected, not just by MSA, but also by computers. They have made so much possible and as this community keeps growing so does the chance of finding a cure!

 You know we have to play the cards dealt but we have someone to play with it makes all the difference in the world we can find happy moments in little things. With all this love and support we are all digging in our heels and fighting the fight of our lives!

 

My Lifeline

     It seems the MSA is progressing fast now. I have falls daily, which is more like a tree than a sack of potatoes. I will have to learn to shout, “timber”. I was trying to clean the counter top but I fell from the stove along the counter top to the sink. It reminded me of a bar scene, where the cowboy clears the bar off, glass and all. Well, that is what it was like, thankfully nothing got broke and I did not get hurt. I don’t cook anymore because I might touch one of the burners with my balance issues and the pot is too heavy for me. Plus, I cannot walk with something in my hands, I might need them. I usually just have yogurt or fruit something that does not need much preparation. I also have trouble with cutting and getting things out of the fridge. To think the swinging door is enough to throw my balance off, stuff I took for granted before. 

     Another symptom of MSA that happens more often, is choking. Not necessarily on food but sometimes liquid, it can be my own salvia. Usually, something I swallow will trigger a throat spasm, then I start sucking wind. I had one of these. I was alone and it lasted for what it seemed too long. I started down the hall to the neighbors. It is as if the throat is having a Charley horse.  I know there is nothing that can be done, you have to relax, but it is hard when you cannot breathe.

     Each day, before going to work my Hunny usually brings my walker and puts it beside the bed with my black berry and the phone with the headset attached. He is such a great guy and I thank God for sending him. I think if he was going to send me this disease, MSA, then at thankfully he sent me someone I could trust to be with me. He does all the cooking and cleaning and taking care of me.

     One day the phone was ringing on my walker, and I went to answer it but without warning I fell. My butt landed on the headset and my arm remained on the walker so my shoulder got wrenched. I could not get off the headset or the floor. I could not lift myself up and my legs were not able to support me. No matter how hard I tried I could not get up.  I sat on the floor and cried and my husband came home to pick me up. Thankfully, he was close. When I fall, I keep falling to the right and try to save myself with the left arm. I went to the hospital to have an x-ray to make sure nothing was broke. I used a TENS machine and physiotherapy with CCAC. It is not getting better and I have to stop falling on it.

     After these experiences, we decided to get a lifeline. So, the representative came from Phillips Lifeline to install it. It has become necessary. The Lifeline can detect when you have a fall, there is a speakerphone that they come on and they have a list of contacts you give them. If you need this person they will call but, if you need 911 they will call also. I know this is hard for the family as well. I see the anguish on their faces, so I started to refer to it as the baby monitor or should I say mommy monitor... So, now I wear the Lifeline (baby monitor) around my neck, this puts their mind at ease and mine. It is terrible to think that most people who get the Lifeline, it is a matter of life and death situation but, they are not cheap. So, you know for a lot of people, if it is a matter of the Lifeline (video) or groceries, they will of course pick groceries. I feel like most things for people who are sick are too expensive. Of course, there is no money to be made with healthy people. 

     I try to be humorous when I can and do pretty well. When I want to do something that other’s worry about me. So, I say,” the Nanny Cam isn’t on, so I can do what I want”. Remember when those were around, there were a small cameras hidden in stuffed animals. Working parents used them to spy on their childcare provider when they were not there. This reminds everyone to laugh and even though I don’t want them to worry, I am still going to do what I want, when I can and no one is watching.

But above all I am not going through this alone!