US Week Part II

     Did someone say “ Road Trip”?  The is the “US Week Part II. I was so excited to be going away with my Hunny.  First we made our annual pilgrimage to Niagara Falls.  I will never get tired of seeing this. Water for me is so relaxing; maybe it has something to do with growing up with ten acres on the Atlantic.

    Our first day we started at 7:30, we knew I would probably have to make a few pit stops. Which I did, but this was okay. I also knew it was important to me to get my 10,000 steps in. We took a walk around, so much excitement in the people. They must have realized summer is coming to an end. It gets hard for me when there are lots of people and noise. So hard for the brain to deal with, not to mention the meandering around crowds.We went to Toni Roma’s for dinner, and I had the best steak I had in awhile. We then went back to the hotel, when crossing the parking lot my legs just collapsed. Thank goodness I was holding Hunny’s hand, and he did not let go or I would cracked my head on the sidewalk. I guess that is why MSA is considered a movement disorder.  I was okay and after a good nights sleep I was determined to be as good as the “new me” gets.

    The next day we did some more sight seeing, the falls of course, and we had to get those steps in. The butterfly conservatory, and the Horticulture School. We then stopped at the Hilton Casino, I like to watch the high rollers, which isn’t us, we did win $40 bucks though, so that was fun. Two years ago we stayed here and remembered they had a martini bar. We went up to the Pent House but there was not a soul around. We sat anyway just had some alone time and a spectacular view of the falls and the city. We then got the elevator down, that is when we saw the big sign that said the PH closed, oops!

     The next day we left at 9 for Leamington. I did not realize this is the tomato capital of Canada it has a large Heinz factory. Leamington was on the way to Point Pelee National Park where we are going. 






     Point Pelee isthe Southern most tip in Canada. It is as far South as Barcelona Spain. It is a peninsula, which juts out into Lake Erie. Beautiful, to be surrounded by nothing but water. I will definitely bring a picnic if I go there again. 

     We then made our way to Pelee Island. We took a 1.5 Ferry ride to the Island while there we booked a bus tour for two, which took us around the island. You may know Peelee wines, this is what we wanted to see, and they have 500 acres of grapes. We bought two bottles that cannot be purchased at the Liquor Commission Board of Ontario (LCBO).  Also Peelee Island was so interesting so much history. It only has about 250 permanent residents but can grow to1500 during summer. Very rustic, and a quaint place. 

   

  

     Since we arrived early and all our friends were at work we went to Georgian Bay to have a walk along the boardwalk. It was 32 Celsius, not bad for September. The old gang was meeting  tonight with lots of laughs. What a great end to a road trip. 

    The next day we headed home and got there just in time. Hunny’s, mother, sister and her family were coming for a visit. That Day we had dinner and lots of laughs, The next day his family went to visit Ottawa but came for dinner. We had the same menu two nights in a row, family, laughs and love. We realized the "US", is really our strength and the love and support of great family and friends!

       We wanted to follow the coast all the way there with a stop in Goderich, but a tornado went through there and caused significant damage so we continued to Barrie.  We took the famous Ambassador Bridge, it is the largest suspesions bridge that connects Canada and the United States.

An August Weddding!

      
     We have a very large family, which I am so thankful for. There are 10 girls, 3 boys, spouses, and 26 nieces and nephews who have started having their own children, this not only mean lots of support, it means there is always something going on.

 

    That is the case this month. One of my nieces, who lives here in Ottawa, is getting married. Also, one of my other sisters (mom of the bride) is moving to Ottawa, and my nephew (brother of the bride) and his family as well. I am so excited because I will have two of my sister’s living in Ottawa and their children.  Now, we will be between two Provinces, Ontario and Nova Scotia.  

     One of my sisters was driving up from Cape Breton with her daughter to take part in the festivities.  It is going to be great to be together for such happy times.  

   The day of my niece's wedding arrived. Remember the white handkerchief I had kept all those years (26) and brother-in-law gave to me? My sister gave it to me for my wedding, and my daughter for her wedding and now gave it to my niece for her wedding. I also kept my pillow that I used and I gave it to my niece for her ring bearer.

   My sister made the garter and all the flowers for this wedding as well. So much tradition!

  

   The Wedding was at Base Chapel. We all arrived to watch and hear the bride and groom exchange vows. It was beautiful! We then went to the NCO for the reception. We had a very good time. It was great to be part of special day! More Photos

       

    I was having a lot of falls this week, so I have to make sure I get lots of rest because that affects my balance and other symptoms. I do not want to be falling everwhere at the wedding. It is funny, now, when we go to a place the first thing I do is scout out the bathrooms. Until a year half ago, this was never a concern and really did not think I would have to worry about that for another 30 years. One of the symptoms of MSA is bladder control. It was my second kidney infection this month. I must admit at first I cried every time I thought of this and how I was not ready, but then realized you probably never are. I always remember the words my dad said when he was sick in the hospital, “Once a man, twice a child”. 

    When we are out now I have to hold Hunny’s arm. Most people do not realize this. Also, it becomes tiring with lots of people and noise. I can no longer look to the side and walk, without falling. So it is one or the other. 

   The time came for the garter and bouquet toss. Hunny was somewhere and I found myself at the table alone, but I wanted to see this. So I made my way to the room where this was happening. I remember two young men asked if I was all right, which I responded yes. There were two stairs to climb, just when I was about to go up the first step I fell backwards, thank goodness those two young men were there because I had to grab onto something (just happened to be his leg) to save myself. He probably thought I was some cougar hitting on him. Needless to say I missed the garter and bouquet toss. After my episode, I just wanted to sit and be safe.

     It was time to go home, I was very tired. When getting in and out of the vehicle my Hunny helps me in and out. Thankfully, because when getting out I fell, luckily, he was there to catch me. This reminded me of The Spoon Theory. That unlike a lot of people I have a number of spoons. Each task in my day requires a certain amount of spoons and when my spoons are used up there are no more until the next day. I guess I used too many spoons today!

The "US" Week

     We had vacation plans for late in August but this seemed so far off to me so, Hunny took a week off. During this week we decided to play local tourist.

 The first day off we sat on the patio and had a cup of coffee and went to the gym.  Remember how I said in the last blog “look a little closer”, well this is one of those times.  Sitting with a loved one and appreciating the company of that person.

     We went to town to see the buskers, which is the second largest in Canada. The children were enjoying it immensely.  There seems to be something for everyone, storytellers, jugglers, fire-eaters, magicians and the list goes on.

 http://www.youtube.com/watch?v=Sozuj81QFTQ

     When we left here, we walked to the Clock Tower Brew and Pub and had lunch. Felt good to get out of the heat for a bit as it was 32 Celsius, and I mentioned how I don’t sweat anymore. Some people may think this is great but your body can’t cool off so a person like me, someone with MSA, can over heat easily.

Had to go to docs today as I had a kidney infection. Another symptom of MSA, bladder problems.  We were going to Silver City to see Horrible Bosses and I  was not going to let a  kidney infection stop me.

     The next day, we drove to Wakefield.   This is a small village off of the Gatineau River. Their main industry is tourism, and that would be us. We stopped at the Hibou for lunch, the scenery is gorgeous.

     I recently bought a stepper. It counts the steps you take in a day. According to Wikipedia  The average person should get 10,000 today I got 19,406. My Hunny and I came up with a joke for this. Any amount over 10,000 we call the “A Factor”. I am afraid to stop as I may not start. As we know with MSA, eventually I will not be able to walk.  

     We have been walking every evening. Sometimes we walk to get Gelato, that makes us feel less guilty. I am going to be sore anyway, might as well have a reason.

     We had a great week of just us, laughing, talking, movies, coffees and lunches and nothing got in our way not even the MSA. 

Look a Little Closer

      I know my Blog is looking at the past year and how MSA has affected me, but March is MSA awareness month so I thought we should acknowledge that. I want to raise awareness but at the same time, I want people to know I am the same person on the inside who still desires the same things as when I was healthy.

     I should warn you now that this is not going to be pretty. We all know that it has been 1.5 years since my diagnosis and I have managed to see a silver lining in most things but it is not without a price...

     Now, I have to practice the things I have been doing all my life, like walking and talking. At the time of diagnosis, I had just finished a marathon, now, I shuffle with my walker, not what you expect to see a 48 year old doing.

I was also an athlete, now, I cannot climb on any of the exercise equipment, except the incumbent bike, which is becoming difficult as well.

    I wrote and told you all how it felt becoming a mermaid, sadly, I have had to stop this.  It is too hard to get in and out the pool and sometimes my legs stop kicking without warning.

     Usually, I look forward to seeing the new shoes and fashion but, I get cramps in my feet and calves when putting shoes or pants on, so this is no longer fun.

  

     At the end of the day my body is very tired so my Hunny has to escort my walker and me to bed. I can no longer roll over in bed and have a bed rail.  My hips get sore from lying on the same side, therefore, if I want to change sides this has to be done in stages.

     In my shower, I have bars and a chair to sit on. Just last week I fell off toilet and my legs would not work to get me up. My Knight in Shining Armor was there again and got me back on my feet.  It is getting very hard to wash my hair and Hunny usually has to help me get off my sweater, because I have fallen on that left shoulder so many times that it is sore to move. I usually fall daily but, at least I know the nine foot windows will support me as I got to test this last week. Because of these falls, I now have a Lifeline.

     We don’t really go to restaurants any more because the food is to hard for me to cut and getting to bathroom is a challenge, but Hunny buys me the best steak and cooks it just right so I don’t have to fight with it and I can even have a glass of red wine because I know that Hunny will take care of me. Hunny also makes the best pizza and cuts it into manageable strips for me.

     I can't brush my teeth like I used to so, I got an electric toothbrush. I no longer write so my husband has to do this, as well as the household chores, as I fall more often now.

But…….

      Even though there are lots of not so good things there are great things as well. I have a great relationship with my husband that I know I can count on. We are Soul Mates!
  And I have amazing kids who will be there with me through it all.

     I have conversations daily with family who are just a phone call away and close friends who I can rely on. I am never left alone unless that is what I want.

I have met some great people through Mermaids and in my building. I met two women who know two of us who have MSA. Hard to believe something so rare can impact a ones’s life personally twice-in one lifetime.

      I  started this, my own Blog, which has had over 8,000 views since September. I was hoping to get 1,000 people.

     I have been named an Ambassador for MSA, for bringing awareness to this disease, which is a great honor. 

 "For her efforts in educating others about Multiple System Atrophy through her blog "One Day at a Time - Brenda's Journey with MSA" http://msaonedayatatime.blogspot.com/ I hearby nominate Brenda Paquet as an “MSA Awareness Ambassador”. Brenda, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!"

     ... And I was quoted in a MSA Awareness press release. 

     

     We brought Tim’s Shoe to see our Mayor, Jim Watson. My friend, my husband and I also got Jim Watson to Proclaim March as MSA month.  

     Recently I was asked by a group called Tread Lightly Company (TLC) to become a partner, which I gladly accepted. This is her introduction:


"COURAGE IS CONTAGIOUS

Recently I have had the good fortune to be in touch with one of your newest Ambassadors, an impressive woman by the name of Brenda Paquet.  Brenda lives in Ottawa, Canada.  She is the Featured Partner this month in our Tread Lightly Company (TLC) Bulletin, TLC being a private support system for a few dozen friends who are scattered across our country.  Brenda is being a fine Ambassador for MSA during the Multiple System Atrophy Awareness month; moreover, as she spreads the word about MSA she has also managed to share her courage with others who are dealing with a variety of health issues.  We’ve all learned so much that we did not know before about this challenging condition. We wish to applaud Brenda’s successful efforts. As evidenced by the two MSA patients we know personally, there’s certainly nothing wrong with the intelligence or amazing courageous spirit of either one!

A Tribute to Brenda Paquet

respectfully submitted by

Nancy Freeman"

     I have joined many support groups online, met some wonderful strong people and through all this I have learned a valuable lesson, there are lots of good people in our lives and positive events.

     In our difficult lives, it is easy to see the negative because it is right in our face and all around us and sometimes we have to look a little harder but the positive is there to.

Just keep looking we all have to look a little closer!

A Shopping Day

 

     My son had the day off so he came and spent it with me. He was leaving for Europe in a few days so I thought we could spend some time shopping and stopping for coffee of course.          One of his good friends, who he graduated RMC with, was getting married in Germany. What joy that must be to have four of your friends who you graduated with, travel half way around the world to spend one of the happiest days of your life.

      
     He needed some sport clothes that were lightweight and easy to store since he was only taking a backpack and drinking beer, apparently. So, we went to Bushtaka, then to Expedition Shoppe then we stopped at Starbucks, then we stopped at the MEC (Mountain Equipment Co-op). I was excited for him to go but things change fast with MSA. 
     I was experiencing symptoms already. With Multiple System Atrophy comes from the loss of nerve cells in the nervous system. Symptoms are grouped into three main categories:
Autonomic dysfunction – symptoms such as urinary incontinence, erectile dysfunction in men, drop in blood pressure when standing (orthostatic hypotension), fainting, constipation
Parkinsonism – tremors at rest, rigidity of muscles, slowness in moving
Cerebellar dysfunction – difficulty walking (ataxia), maintaining balance, and coordinating voluntary movements.
Other symptoms such as difficulty speaking or swallowing, sleep apnea, and cold hands may be present.

     I was using a walking stick at this point and even though a could still walk quite far I had to remind him he had to be of the left of me in case I lose my balance, I do not want to fall in front of a car. I also cannot go very fast, I always say I have one speed now. I see the hurt in his eyes; He is use to me being the strong person. For years when my husband was with the military and he would be away and it would only be the three of us, and I could take care of us no problem but, times are different now.  

     When we were having coffee, we dicussed this book by Robert Munch, which we consider our book. When he was four and I picked him up after school. He jumped in the car and threw his arms around my neck and said, “I’ll love you forever, I’ll like you for always, as long as I’m living my baby I’ll be". The story continues with the boy being a typical boy growing up. Of course, as he is growing older so is the mom. One day, the mom calls the boy and says "You better come see because I'm very old and sick." So her son came to see her. When he came in the door she tried to sing the song. She sang: I'll love you forever I'll like you for always....But she couldn't finish because she was too old and sick.

    

     The son went to his mother. He picked her up and rocked her back and forth and sang, I'll love you forever, I'll like you for always, As long as I'm living My Mommy you'll be . 

 My son got everything he needed for his trip but what I got can"t be bought and more valuable, I know as long as I am living my family they'll be.