Skip to main content

DBS

Last week I met my parents in Gainesville at my grandparents house. They drove down here with my aunt to go to my doctor's appointment with me. Thank god they did because it was a very scary day and I couldn't have gone there alone. I went to a clinic known as Tyler's Hope for a Dystonia Cure. I thought I was going to go in there and get botox and meds and walk out and be better in a few weeks. Things didn't work out like that. The doctor doesn't think botox or meds would help me. They think that deep brain stimulation (DBS) would be the best thing for me. I have to go through some testing and they have to watch a video of me then they will make their final decision. I am very happy they want to do something and they want to help me but at the same time I am more nervous then I have ever been. I have all these thoughts running through my head and I don't know where to stop. Every night I have nightmares of them cutting my head open and its terrifying. I am mostly scared for Hailey. What if something goes wrong? What if it doesn't work? All I want is to get my hand back and pick her up and squeeze her so tight with 2 hands!! I really hope this works but I am so scared I dont know what to do.

Comments

  1. Marilyn TremblayJanuary 30, 2011 at 6:10 PM

    Oh Mandy! It just makes me so sad to hear of your trials and tribulations with this awful disease. And then it makes me so happy to hear of your unconditional love and happiness you have with your daughter! I know that whatever you decide to do will be the right thing. My thoughts and prayers and love are always with you, honey.

    ReplyDelete
  2. asleeperJanuary 30, 2011 at 7:02 PM

    Thank you so much.

    ReplyDelete
  3. MarleneJanuary 30, 2011 at 9:18 PM

    Mandi,
    It is time to pray to God. He knew you the from the moment he knit you in your mother's womb. He has plans for you. I pray that you have peace and comfort in knowing that God will provide for your needs. Pray for a sign that DBS is right answer. He will tell you, you just have to trust in him completely.
    Good luck, Darling! You will find what you're looking for.

    ReplyDelete

Post a Comment

Popular posts from this blog

update on Dystonia and Family

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me ...
13 comments
Read more

Be the best you that you can be

A few months ago I was feeling pretty lousy and every day I was noticing new symptoms. I was so exhausted I could barely drive and staying up to watch a show or play a game with Jim was impossible. My eyes started giving me problems and I was getting dizzy quite frequently. When I tried to read, all the words in a paragraph bunched up into one big blur. I was overweight but couldn't find the motivation to even walk to my mailbox to try to lose some weight. It was the worst I ever felt and it was causing me to be miserable and not be the mother and wife I needed or wanted to be. I had an appointment scheduled for a physical so I decided to talk to my doctor. She told me that fatigue can be caused from so many things and she would do some blood work but she suspected it was just from having a baby and getting muscle spasms from my dystonia. I knew it was more than that but figured I would just wait and see what the blood work showed. Not long after my appointment I started gettin...
Post a Comment
Read more

Dystonia awareness

Some days its hard to find the words to explain what dystonia feels like. It's invisible to most people, yet it shapes every hour of my day quietly, persistently and often painfully. I don't share this because I want sympathy, I share it because awareness matters and too many people still don't know what dystonia is, let alone how much it can affect someones life. Dystonia affects my hands, feet, back and neck. My hands ache as though they've been gripping something for hours, even when they're resting. My neck strains as if theres a weight hanging from it and no amount of stretching helps. My feet cramp and curl making sonething as simple as standing still feel like a test of endurance. I've grown stronger in ways I never expected. Ive learned patience, determination and resilience. Ive learned to celebrate small victories, like waking up with a little less stiffness or being abke to open a jar of spaghetti sauce. Im sharing this because I want people to under...
Post a Comment
Read more