The Tulip Festival

     It is hard to believe just two short years ago that I was diagnosed with MSA. So much has changed since then, before that I could run around the canal now I must be pushed in a wheel chair. If someone had of told me during that marathon this would be your last time getting around the canal by yourself I would never had believed them.

     I cannot walk myself but still want to go for fresh air, so my husband takes me when he comes home from work and weekends. Usually if it is nice Hunny calls me in the afternoon and says how nice it is, and if I would like to go for a walk when he gets home. I know I am very fortunate and there are lots of people who do not get out. Have you ever had to considered this before, you are totally dependent on someone else to take you for fresh air? What if this person does not want to go walking, or out or is tired?  Another thing to consider is when we go for a walk Hunny has to clean the tires of the wheel chair when we come back, so when things are wet it is definitely more work. When the snow comes I will not be out as much, besides all that slush spraying off the wheels is not very appealing.

        

     We went for a walk around the canal to look at the tulips.  We took my chair of course. It was so nice to see all those colours. The Tulip Festival is the largest in the world, if you can believe this, even bigger than Holland. Ottawa was given 100,00 tulip bulbs as a thank you gift in 1945 for taking in the exiled royals and helping free the Netherlands during the Second World War. There are over 300,000 tulips to see with their vibrant colours.  It is a huge celebration with a return of spring. Each year it is the kick off to music, shows and lectures. Around the canal is always nice because if you look at the water it is so peaceful and tranquil but if you look in the other direction there is so much life.

 

      Having MSA sure changes your perspective on not only  life but life events and you realize what may be little things to someone else is a big thing to you. I love getting visitors. My niece and her mom stopped by. My niece was competing in a gymnastic tournament so they dropped in for a quick visit. It hard to speak English now let alone French, so my husband did most of the translating. Good thing love is universal,

     In the beginning of the month I had to go and have a swallowing x-ray done. I choke more often now and that is a symptom of MSA. I saw Dr. Lamont, he is a Speech Pathologist at the Ottawa Hospital. He sprayed a liquid in my throat so that I would not be gagging on the instrument. The liquid should be on the program Fear Factor because it was awful.  The Dr. said my swallowing reflex is there, it is slow, like every other muscle in my body. I have already changed my diet; you only have to choke on something a few times when you do not want to eat it again. When it causes the airflow to stop it kind of has this effect on you.  This is the first appointment; I will have to have a Barium Swallow Test done, Speech Therapy and go to the Speech Rehab Centre to learn techniques for communicating. This is important for me as I not only communicate in person, but on the phone and Skype. So this will be interesting.

 Never a boring moment!

New Friends

     Remember last year when I wrote about becoming a Mermaid, well I have since given that profession up. Since diagnosed with MSA I have one speed now, SLOW. It is not good physiologically when 80 year old's are faster than 48 year old's. 

Also we all know my speech is affected. I not only have trouble with projection but articulation as well.  The natural order is as you age your hearing goes, and none of these Mermaids would want to tell me they couldn’t hear or understand me. To me it feels like I am shouting but I am not. Even though I grew up around the Atlantic, we had ten acres on the water; I must wear a floatation belt now. I had to stop going for the reasons I mentioned above but also because when I swim unless I think kick, kick, and kick my legs will stop moving and I start to sink. Another symptom of the MSA is the lack of coordination. So, instead of putting the other Mermaids and myself through this I just stopped going. They still invite me to their potlucks, which attend. If you every want to feel love, just go one of these!

     When I first started going to the pool there was a fellow Mermaid who told me about a friend who had a Rare Disease, I mentioned that I knew this disease Multiple System Atrophy. She asked how did I know of it because most people hadn’t heard of it. That is when I told her that I was diagnosed with the same thing.  She looked at me shocked, of course to have someone so young have this awful disease. 

That is when I introduced her to Tim's  Shoe and asked her to bring it to her friend and tell what it is all about and take a picture.

     I'd come to learn there were three women friends and three men friends. The men friends had worked together and were in the military together. Well one of the friend's got sick with MSA. Each week these friends would get together and visit their friend and the wives who were also friends would visit.  

     One of these women was a retired schoolteacher, who wanted to meet, and to occasionally write for their monthly bulleti TLC. She wrote to introduce me to the rest of the group. It is amazing sometimes how other's see us, We have to learn too see ourselves through others eyes and remember we are someones wife, mother, partner, sister, relative or friend. I accepted her request but for my own selfish reasons, these were all people with so many life lessons that they could teach me so much. This group had helped a friend through a rough period and lives in Western Canada, well this person sent me “Angie” a Guardian Angel Bear to watch over and protect me. She sits on my table and watches my every move.

     At this time the wife my fellow Journey-Person with MSA wanted to meet me. So we agreed to all meet. She was just small but I thought how strong she must be. What she must of experienced over they years, being the spouse, mother of his children and love of his life. I knew first hand what MSA does to plans and dreams. We have to learn to forgive ourselves for getting sick and changing all that.

    These three women and me met for lunch. To think for years they heard their husband talk about their friend with MSA and now know someone else who has MSA. For a disease that is suppose to be so rare, to be in contact and personally know two people in one lifetime with the same disease.

It is amazing how many friends I have lost because of MSA but it amazing how many new friends I have gained because of MSA!

A Raise & A Promotion

     It has almost been two years since my diagnosis of Multiple System Atrophy (MSA). Over the past two years I have had to accept a lot of things, which sometimes affected my pride and dignity.  I have shed many tears of anger, sorrow and frustration. To think the big part of having our children young was not only having the energy and strength to be active with them but also being young when the grand kids come along. Now I do not let myself think that far ahead because I will never be able to hold the baby, have sleepovers or play on the floor. If I think of this it makes me sad and I cry. MSA has stolen so much but something it will never take is my pride in my children.

     Our son, who is the oldest, is a graduate of Royal Military College (RMC). He has been in Ottawa the last two years.  We have enjoyed this immensely! Not only has he been able to take advantage of important events but “just because” events as well, which are just as important. Turns out this month he is getting promoted to Captain. He as well as his Dad and I are very excited. He has applied for his Master’s and was accepted at RMC! Along with this of course is not only the promotion and the accepted, which it means a posting as well. He will be going back to Kingston, but that is only two hours from here.  It is important to prepare his future.

     

     Our youngest, is our daughter. She is a graduate of the University of Ottawa.  She thankfully is staying here I would definitely be lost! She always pays attention to the little things. Her brother gets off easy as she always has good ideas for him for events.  We have a great relationship and we are in contact most days and her and her husband visit often and come to Mommy-sit when I need her to. She has been working at Chase Banking and has been doing very well. A position became available and she interview for it.  Secretly I did not think she would get it. Not because of her competence level or intelligence but she was the new kid on the block and after only 8 months someone else would get it. I just thought she was not there long enough. I said to her try for it, I thought the practice would be great. Well turns out she got the job!

    
      We wanted to share in their success, so we had them over for some champagne and laughs and of course gifts.

    


     

      
     We have been very fortunate that we have two successful children and they figured out the important things at a young age and without a lot of pain. It makes all the time and energy we spent in their growing up so worthwhile.

It is great to be so involved in their lives and we continue to play an important roll.

Even though I have this terrible disease what better children to take on this Journey with us!

Spring Visit

     

    

    This is a good week; one of my nieces is coming to see us. I have not seen her since my daughter’s wedding, almost a year. I send family up dates every three or four months, of how the MSA is progressing but reading and seeing this happen to a loved one is two, different things! I write to make it easier telling family and friends but when I see them we always cry.  We don’t have to say what is happening but we are mourning for has been lost.

        

    This niece and I am only three years apart and her mom took care of me when I was a little girl so we had the same mothering, both mothers and wives, so she can relate to the turmoil inside. 

   

     

    
      The next morning after my Helper left we put my walker in the car and drove to the museum, the National Art Gallery (NAG).  It is still hard to believe two years ago I could run 42 km now I cannot walk 42 paces. This is something this Multiple System Atrophy (MSA) has done to my body that I will never get use to.

      I knew when we see the famous spider we were at the right place. The building is so immense with extraordinary glass and granite. As you enter the Great Hall you can sense you’ve entered an amazing place.

     The Gallery houses a lot of Canadian art but some renowned artist as well like Van Gogh, Monet, Picasso and Andy Warhol. We spent the afternoon here but didn’t see it all…oh well, I guess we will have to go back.

                                            

    

     My kids are very close to to their cousin as am I. We lived in Alaska for four years, life was simpler then.  My niece came to Alaska for a few months for a visit. My kids really got to know this cousin very well. We were with the military then and lived far from family so it was a treat for them. My kids were young and she was their big cousin but now that they are young adults it is very different. I thought it would be fun to get a photo of then and now. I am so happy to get to experience this. We had some great times there and explored a lot of this State together. We spent the night remembering Alaska and talking of the present and MSA.

    My niece was gone by noon but promised her next trip wouldn’t be so far away!