Binswanger’s Disease and Me

Here I am wanting to write about this disease I have in my brain , that I have just been diagnosed with not to long ago, and I am having a hard time finding the words to say. For so long now I was told over and over I had MS but was never given a definite  diagnoses for MS. I was always in denial about having MS cause the only test that came back positive was the brain MRI’s I had done. I have had several MRI’s done too, and they have all shown the lesions in my brain.

I have been told by doctors that Binswanger’s disease mimics MS, that it’s a sister disease to it if you will. I have the same symptoms that people with MS have also. It’s been a long haul for me , and a real struggle too. But I am glad to finally have a diagnoses! I have always known something was wrong with me. And I knew it was in my brain, and in my body. Know what I mean?! It’s kinda hard to explain. But I am going to try.

I have a hard time with walking, my balance is always off. My left side is worse then my right. I haven’t fallen down for a while now. But I still stumble and lose my balance allot. I have to be very careful going up and down stairs, walking in the dark, walking in my yard, and things like that.Taking steps over things , like a curb can be a challenge for me too. Sometimes I don’t have to do anything at all to lose my balance and fall down. My left leg seems to drag allot , and not keep up with the rest of me. It takes allot of concentration just to walk on some days.I would really like to start walking in the summer for exercise, but we shall see. I would have to have someone go with me for sure.

Everyday, I have pain in my body somewhere. My bones and my joints hurt me allot. Some days I cant lift my arms, or some days, I cant write or use my hands very well. Sometimes I can’t even get dressed or fix my hair, or put make-up on, due to the pain in my body. I have good days and bad days, just like you do. But my bad days are probably allot worse then you can imagine. My good days are not pain free either, they are just tollerable.

The worst part of this disease, well I think it is anyway, is the part in my brain. I have severe short term memory loss, my personality has changed, my behaviors have changed, I have changed from the person I used to be. Decision making is very hard for me, I struggle with even the simplest decisions sometimes. I get confused very easily. One day I went to pick up my son from elementary school and when I went in to sign him out, I could not remember his name . That was so horrible and embarrassing for me.I felt so ashamed! I always struggle with remembering what grade they are in and there teachers names, but to forget my sons name, was really heartbreaking! And then the office lady was not to kind about it either. I cant believe I forgot my own sons name!! Whats going to happen next??

I don’t drive much anymore, and I don’t go very many places by myself either. Sometimes I feel trapped inside myself. This as really affected my family too. They tell me I say things and agree to things and etc., and I really don’t remember if I did or not. As this disease progresses in my brain , I could end up not knowing or remembering my family, and people I love and care about. I could also end up in a nursing home. All which I do not want! I cant imagine not being able to take care of myself, or not knowing the people I love. That would devastate me.

They also say that about 5 years after being diagnosed with Binswanger’s, most people die of a stroke. But I am not believing that for one second! I believe the report of the Lord!! And I figure I have already had this disease for at least 5 years anyways! Ha! I am involved in a study that is trying to figure out why this disease is affecting people my age. This disease usually affects people in there 80s and 90s. I am looking forward to being in this study cause it will help me to keep track of how my disease is progressing and all.

I am also trying to keep my Diabetes and High Blood pressure under control too. The doctors say that helps to slow the progression of this brain
disease. I am really trying hard NOT to let this disease get the best of me. And I want to stay ME, who I am. And not let the disease change me. Know what I mean. It’s been a learning experience that’s for sure! I have been through allot with this disease so far, but I am going to battle it with all I have! And I also have my Lord Jesus to help me in this battle, and to get me through it!! Thank You Jesus!! If you know anything about this disease, or anyone who has it please let me know and feel free to share on Open Talk Mom. I would love to hear from you! God Bless you!!

photo credit: don.wing45

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About the author  Christie Garcia is Mom to 7 children, ages 8 to 31. She also has 4 granddaughters, ages 1 to 7. Christie lives with several diseases, still in the process of being fully diagnosed. It is Christie's desire to interact with other mom's who are going through stuff too, to encourage, strengthen and build each other up. Read more from this author

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