13 thoughts on “Done

      1. Matt,
        I don’t like the sound of this post. Talk to your OT family….we have all been there; and you are at the worst stage of OT. It knocks us all down, but we have to be strong and pull ourselves back up, and move on. As you have said before, OT is not a death sentence, like Cancer or other diseases, although sometimes it feels like it. Things will get better. Feel free to message me on Facebook if you need the voice of experience, or there are a number of good people in the OT group (which I have left) who would be glad to help you. There really is life after the diagnosis of OT, although I always say, ‘OT is not for sissies’. Take care.

        Liked by 1 person

      2. Nobody really cares about our disease, except the people that have it. I’ve done all I can. Over 2500+ connections on FB and less than 20 donated. Nobody even responded, other than the ones that always do. Not worth my time. I will no longer participate on FB either.


  1. “I can do all things through God who gives me strength.” Philippians 4:13 Never give up!! God loves you and He will help you through this. Jesus shows his love for us by what he suffered on the cross in order that we can have forgiveness of our sins and the promise of eternal life with Him. There is no greater love than this.

    Liked by 1 person

      1. “When you are in distress and all these things have happened to you, then in later days you will return to the Lord your God and obey him. For the Lord your God is a merciful God; he will not abandon or destroy you or forget the covenant with your forefathers, which he confirmed to them by oath. Deut. 4:30-31

        Matt, please know that many, many are praying for you and hope you will rejoin our group soon. This disorder can be very frustrating and the lack of research funding is discouraging, but please know that some of us gave generously to the OT fund at University of Nebraska before the end of 2017 (not knowing what the new tax laws will bring) and before your Go Fund Me appeal. But, more importantly, rest assured that your OT pals hold you in our hearts and our fervent wish is that you will rejoin our OT family!


  2. I’m so sorry you’re feeling so down, but please know that it is a normal place to be when you are first hit with a chronic disease. You really need to talk to someone who can help you to understand/accept it, so you can get beyond this stage. I once wrote that OT robs you of the life you once knew, and it does; but once you accept that and learn to modify your life, things won’t all seem so negative. Your life will never be the same as it was, but you still can have a good life, if you can accept some limitations and move on. I used to go to YouTube and look at videos of people with movement disorders and it made me realize that I have a lot to be thankful for because I can still go somewhere and be reasonably normal, and I’ve been dealing with this for pretty close to 30 yrs. You can do this, and believe me, I truly know how you feel…..especially the part about thinking that no one cares about OT, except those of us that have it because I’ve also felt that way for years, but we do have Dr. Torres and his staff now…so SOMEBODY else does care. I have contacted the NIH, NORD, the magazine, “Neurology Today’ and a few other places and begged for studies or just a small article in the magazine, to no avail. I explained about the lack of knowledge by doctors to the editor, and said how much a small article would help to make an awareness and was told it was being considered for the next issue. The next issue came out, and they had redundant articles about headaches and other topics that they’d written about time and time again! ….so I do get it. It’s an uphill battle all the way, but we can do it. Hang in there…


  3. Hello Matt
    You have every right to feel angry and frustrated by this horrible condition. Even those closest to us really have no idea how hard it is to do simple tasks. We look so well, and yet inside our whole being is in turmoil. It it is totally un-natural to feel so bad just by simply trying to stand for any length of time. I have no answers either. I have come to accept that there will be no real help from the medical profession pr research. I refuse to take OT medication, as I feel the side effects outweigh the benefits and I don’t want my personality to be changed by drugs. I refuse to let this condition depress me. I find activites and hobbies that I can do while seated. If I start to have negative thoughts I listen to beautiful music or work on my hobbies. I love my family and, even though they find it hard to understand what I am going through, they love me too.
    Try not to push away those who love you. Try to make your own little world as happy and as safe for you as you can. You have done your best to try and get the outside world to learn about OT. It is now time to concentrate on what is best for you.
    Take care and be safe.
    Sue Smart xx


  4. Dear Matt,I am really sad & upset for you. My heart goes out to you as I know how you are feeling. I have been in that dark place & thought I would never get out of it. I got over it thank goodness. So my advice to you is to hang on because in the end it was worth it.Please be strong for your wife & family & for all your OT family who love & care for you. We have been so distruate. Please hang on Matthew for everyone.Love to you,Ann Dodd.xx


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