Telling The Family

      I took the doctors advice and went home and read everything I could find on MSA.  The prognosis, as I suspected, was not good.

     MSA is a degenerative brain disease that affects your autonomic muscles, the ones we have no control over; such as breathing, bladder, swallowing and the others.  For more info check www.msawarness.org and  Parkinson Society Canada . I was already having balance issues, bladder control problems as well as speech and swallowing.

  To think 5 months ago, I ran a full marathon and now cannot run a flight of stairs. In 3 to 5 years, I could be in a wheel chair, with a life expectancy of 10 years... it did not make sense. I kept thinking that the doctors made a mistake.

     Even the neurologist I saw in October asked how did I manage to run the Army Run the month before?  I think back to this, the last ½ marathon that I will ever run and I almost passed out a few times. I had to keep stopping and walking. I remember there was so much pain, my legs were like lead, but I knew I had to finish.  I remember holding back the tears at the finish because I knew something was wrong, but I would never suspect anything like this.  How could I? I  had never heard of MSA before.

     Still in disbelief, I felt numb, angry and frustrated that there was nothing I could do.  I would wake in the middle of night and sneak out of bed not being able to shut off my brain from thinking.  I felt that MSA was not only ruining my life but my husband's as well.  We always walked 20 -30 Km each weekend, we hiked, biked and all that was gone!

     I had dreams of being the young grandma that would be able to rollerblade, skate, bike, and much more with my grand kids but that is all changed now. I will not be able to walk around holding them and rocking them in my arms. I will not be able to keep them for a sleepover unless someone was with me. Just to scoop down and pick them up will not be possible. My heart breaks when I think of this.

     But there is not much sense thinking this far ahead, I had to figure out the best way to tell my kids.  I decided to invite them separately so they could be honest about their feelings and not worry about the other person. 

     First, my son came out to visit and I told him that I had MSA, which was kind of like Parkinson’s (cannot believe I held it together for this), but there is no cure and no treatment.  Actually it is quite rare, 4.6 in every 100,000.  I said, perhaps ,I should have bought the lottery this day, I had the same odds of winning. I told my son that I had a disease in the Parkinson family and they do not know what causes it, so, they do not know how to cure it. I said that is what we will focus on. I tried to keep it light to try not to worry him.

       Secondly was my daughter’s turn. Of course I gave her the same details, not realizing that she was taking courses at the University on brain diseases so she had more questions than her brother.  She wanted to know what it was called and what the prognosis was. These questions, I answered as best I could, I was still learning about this disease.

     When she went home, I guess she researched this condition more and spoke to her brother. During our next conversation, she said she felt bad for her brother because I had given him the PG version. This was actually funny. Needless to say, I agreed she was right, and I had my son out for another visit so we could have another talk.  It is hard to tell people that you have a death sentence.

     Next was my family, all 12 of them.  How was I going to do this? Most of my family live  in Cape Breton and four of us live in Ontario.  One of my sisters was getting married in December, I was planning on attending but did not want to spoil her day. I thought perhaps I would wait until after the holidays but my sister’s here in Ontario did not think that was a good idea, because the next time I would see everyone, we did not know the condition I would be in. So I thought I would tell a couple of my sisters and let them tell everyone. When I went for the wedding, first family reunion in 25 years, no one was to talk about it  - it was to be a happy time.  We had a great time and even managed to squeeze a family photo in there

One Year Ago

     Well today is my birthday and this is my gift to myself.  Happy Birthday!

      It all started about one year ago while training for a marathon. I had just finshed the Ottawa full marathon in May and now was traing for the Army Run, which is a half marathon. This would be my third time running the Army Run.

      I started having problems like falling off the sidewalk, muscle cramps, muscle fatigue , bladder issues, blood pressure dropping (even though I had high blood pressure for the last 22 years). It seemed that even though I was training, my time was not getting better.  

     I had gone to see the doctor many times, but we both thought it was all the training and my body was lettting me know I was overdoing it.  It was not until I fell while holding neighbors baby (and landed safely sitting down) that I thought that I will have to see what is really happening. 

     So, I went back to my doctor and suggested that instead of looking at this symptom by symptom, we should look at it like one big picture... this is where the fun began. You see, I had been noticing other problems and thinking it would get better.  I was having trouble brushing my teeth, my typing was getting worse, in fact I was ayways doing typing tests and praticing when no one was looking.  My hand writing was terrible, I would print off the writing excercises we usually  give to our children in second grade to improve their penmanship. One of my collegues was always saying to speak up and that I sounded like I was mumbling.

      When ever I would mention these things to people, rightfuly so, they would dismiss them. I was an athlete, after all. One who ate right, excercised and lived a healthy lifestyle, and people who take care of themselves like that do not get seriously sick. 

      My doctor sent me to see a neurologist at the end of September. I did not realize how much this was bothering me until I heard her words, " I don't know what is wrong, but there is definitely something and I believe you". The doctor then said that she would like me to see two of her collegues. One is a Myasthenia Gravis specialist and the other deals with Movement Disorders. This is when I began to have a melt down... 

    I had gone on the bus there by myself, so I knew I had to gain my composure to get home, which was 45 minute bus ride. I had not mentioned to my children or my siblings that I was going to the doctor because I did not to worry anyone.

     My children had a beautiful 25th Anniversary surprise party for us at our house on October 2nd, 2010.  They invited our family who ived in the area and some close friends.  There was a lot of effort put into the evening, it was evident. When the children gave their speech and said how they treasured the time we have spent showing them how to love someone, it broke my heart. I knew I had to keep it together and not think of my upcoiming appointments and what the future may hold. 

     I went to see these two different neurologists. First I went to see the Movement Disorder Specialist.  It was October 22, 2010.  I went there alone, again, and on the bus, because I really thought, what could he have to say? I was expecting him to say they were going to do some more tests.

    When I first arrived I saw the understudy to my current doctor. This understudy did a series of tests which involved history, and the movement tests and reflexes.  After the examination, he then reported to my current doctor. A few moments later he came back along with, 'He Who Shall No Be Named', my current doctor. Then the two of them started the tests all over again.

    When they were finished, they asked me if my husband was with me, to which I  responded that I was there alone. They looked at each other and then told me I have Multiple System Atrophy, I knew by the sound, anything with the word atrophy in it can not be good.  Needless to say, I started crying.

    I was then given some websites, and text about Multiple System Atrophy (MSA) and told to go home and read and find out what it is all about and then come back in  a month. I left there just numb.

     I definitely had the, "Fight or Flight" response and my instints were saying to activate the flight. But where would  I go and what would I do? There is no place to hide where MSA cannot find me.

     I got on the bus and headed home. My husband called and then I broke down as soon as I heard his voice.  He said he would come and get me, to get off the bus and wait for him to come.  He picked me up and we went home. Of course I was so upset I cried for hours.  All our dreams and plans changed right at that moment. 

   The next day, I went to see the neurologist that deals with Myasthenia Gravis, for more testing.   There symptoms that MSA and MG have in common, so, I started treatmet for MG. For awhile, I was being treated for both MG and MSA. 

     Finally, they discovered I have only a mild case of MG and my symptoms were more MSA-C which means cerebellar.

     Now I had the challenge of telling my children and siblings of my fate!

(to be continued....)