Saturday, April 3, 2010

Too Fast or Too Slow?

Through my tears I sobbed, "It's happening so fast."

I had a particularly rough day Thursday. I knew from the moment I woke up that something was wrong. While I have days where my right side motor skills are troublesome, Thursday they were like my wiring was short circuited. I guess in a purely medical sense, it is.

I struggled to shower and dress for work, gimped my way to the car, and drove to work. My leg muscles tighten when I'm at rest and after my 30 minute commute I almost fell exiting the car.

I managed to put my ten hours in productively and drive home. Superwoman met me at the door and ask me how my day was. That opened the floodgates. I had spent the day steeling myself against the pain and swirling emotions, but now the dam broke.

"It's happening so fast," I said to her tearfully. I felt so guilty for letting her see me that way. Even though it has been a two year process it still seems like yesterday that I'd spend Sunday afternoon on a 60 mile bike ride.

It's happening so fast!



  1. Sometimes I feel so helpless. I wish I could just reach through this screen and give you a great big hug.

    Hang in there. It's okay to talk, to cry, to scream at the top of your lungs. Go ahead...scream!!

  2. Theresa,
    I was stuck at a train crossing when your comment popped up on my Blackberry. I took your advice and let out a truly lustful man-scream. It felt good, though I'd neglected to remember that my sun roof was open. A small crowd at a nearby bus stop looked a bit startled. It made me smile. Thanks!

  3. Prayers are what I'm sending on behalf of you and your family. Hang in there.


  4. My mom was diagnosed with CBGD in October of last year. She is 56.

    I have read through your entire blog and find it more helpful and inspiring than you will ever know. Thank you for opening your heart and mind to those that need this! Thank you, thank you, thank you!


  5. Secretia,
    Thanks, that means a lot.

    Thank you for adding meaning to my efforts. I wish I was talented enough and had the time to try to really say what this is like. In the absence of skill, I just write what I feel in hopes that someone will gain something from my loss.

  6. I read every single one of your posts.. just something about it is so compelling.. I don't regularly comment as I am not sure what to say.. I wish I could say something or do something that would make it all OK.. don't feel bad at all, (not one bit) about showing your emotions to super woman. Who else can you be this vulnerable to?

  7. Ms. OT,
    Thank you for caring. Superwoman tells me the same thing, but it's in my nature to try to be her rock. I can't imagine how insecure she must feel as her "rock" crumbles.

  8. Thank you for your blog. Wish I had found it sooner. My wife has CBD. She is 36yrs old and we have a 4 yr old son. Although she had some symptoms for over 2 yrs she was just diagnosed last june. The disease has been very progressive and she now lies in a hospital bed unable to speak, walk, laugh, smile, or give us a kiss. Cant wait to bring her home but she continues with a fever.
    I wish she would have had the strength to speak about her disease the way you are. It really depressed her and she wouldnt talk much about things we needed to discuss. Now i feel i should have pushed harder for her to speak to me about things because now its too late.
    So thank you for sharing your experience with everyone and being so strong.

  9. Hi, I just got married to the man of my dreams on January 23rd. He was diagnosed with CBD on Nov 2nd.Fortunately the neurologist knew exactly what was wrong, so we didnt go through a series of tests, frustrations, etc.
    It was a long distant relationship before the marriage so I didnt begin to notice the symptoms of this terrible disease until about 10 months ago.He literally went from being normal to what I thought was just being 58. I used to tease him that his hand had a mind of its own.I used to get upset that he was displaying bad manners at the dinner table or when we went to a restaurant.his driving would irratate me beyond mad.
    Now I am noticing that he takes a long time to dress or undress. he starts daily tasks and doesnt finish them.or takes a long time to finish. he doesnt call me like he used to when I am working on the road and the intimacy is just about gone. He fades in and out. He is 58 years old and I will be 41 in two days. I moved away from my family and friends to marry him and I can't stop feeling lonely and out of control. I get impatient and angry and sad. He gets impatient, frustrated and angry. My whole idea of us living happily ever after is gone, I wanted to get pregnant next year.
    He is in total denial about the seriousness of this disease and I don't have the heart to tell him all of the terrible information I am getting on the internet. He doesnt even have an email address. He doesnt even know how to surf the web. He is an active, outdoor person,still goes to work and is very successful and smart.. and I can't stand to see him not being able to do the things he loves to do in what will probably be in just a few more months to less than a year.I am so sad and lonely, but I can only imagine how he is feeling. He is in complete denial. Help me please!! How can we begin to prepare for the end?How can I make his life better? How can we talk about this disease? I am lost. T


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