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