Dystonic storms, from what I have seen, can been seen or just noticed, My wife notices when I have a bad day, but I do not have a manifestation of the Dystonic storm. Other times it can look like I have Parkinson's disease because I have the constant shaking with no twisting, and I also have the kind where I am not sure if I have legs, arms hands, or fingers because I cannot see, and I there is no feeling in them.
The type I am going to talk about today, I do not know if anyone that has this disease has had experience with, is Sometimes during a Dystonic storm I will forget where I am, or how old i am I will go back to thinking I am a child. These are the ones that are most frustrating, not most painful, usually but frustrating. It seems like I suddenly wake up and I am somewhere I am not familiar with. I am afraid my parents will be upset because usually these are late at night. I do not remember that I am marries or have children or even have grandchildren. These are also frustrating for my wife as you can imagine! this can go on for long periods of time, and even after the physical part of the storm has passed I still think I will wake up from the dream and be at the house we lived in when I was a child on 64th street and trying to convince me otherwise is a almost impossible task. I will ask my wife where my mom or dad are, where we are because this is not the house that I expected in which to wake. In my head I still hear the big Zenith console record player playing or a tape the song is usually "Victory Is Sweet, by the Inspirations Quartet and the album is "Night of Inspiration" and for some reason that is etched in my memory somewhere.
Somehow my wife has to bring me back to the reality of where I am because obviously I have no clue! there can be many triggers to get me back to remembering where I am, because to me nothing looks familiar, who I am because i still think I am about 9 sometimes younger. after I my wife has gotten me to a point where I remember everything she will tell me what trigger she had to use to get my mind back to where I am now.
The First thing she will do is bring a wedding picture, and see if that will trigger any response. If it does not, as you can imagine, it is very difficult for her because our wedding at that time I do not remember, she knows I will remember, but she wants that to be the trigger to my starting to remember who or where I am.
The Second thing she will try is a picture of our children again sometimes this works, and sometimes I lay there thinking of who are all the people in the picture! because none of them look familiar to me. This is very scary sometimes for me. It seems I have a complete stranger telling me what my life is, but this is not my life as I remember at that moment. I am thoroughly convinced I should be at a different time and place, and often times I will pinch myself trying to wake myself up from this dream I think I am having. If this trigger does not work She will try something else, she always has a plan!
We still have 2 children living with us and she will call them and have them talk to me. This is usually the trigger I need to start remembering somethings because it takes awhile for my full memory to comeback, and sometimes memories from the day before will never come back, but atleast I know who and where I am.
In the most Drastic of circumstances when none of the above work and I am growing very frustrated she will use this last one, and to date it has never failed to work. after I reveal it to you I think you will understand why she does not like to use this particular trigger. We Lost a Granddaughter when she was nine days old due to Trisomy 18, and this had a profound effect on me, I still go visit this headstone very often she would have been and is my only granddaughter she is being cradled in the arms of my Lord. Her name is Hallie Marie Brown. She will say her name and show me a picture and usually within 1 or 2 minutes tears will begin to fall down my face I remember that day! My wife will gently wipe the tears away and she will not have to ask if I remember, She knows I remember, and this is why she does not like to use this trigger, but if every other one fails this one never has. I seem to always start to remember things. It takes awhile, but I remember who I am and where I am.
Not know these 2 things can very scary, but I am glad I have a wife is patient, kind, and willing to do what it takes, even if the memory is tough for her as well, to "get me back" as she calls it. I do not know why the Lord chose to take her, or why this is a trigger that always works, but it does! even as I am trying to tell this story I have those same tears running down my face, but I know I will see her again, and I know that her Heavenly Father loves her more than anyone else could ever think. I am Just selfish.
I do not know if this has happened to other Dystonia patients I just know that it happens to me, and symptoms can be different for everyone.
If you have read this I thank you just please remember to be in prayer for our family it is a struggle to get through each day, as I am sure it is for most of you, but prayers are appreciated.
You can subscribe to this blog by clicking the subscribe button or follow it by clicking the follow page. I thank you again for following my story. This story, by far, is the hardest and most difficult that I have shared so far, but I hope it might help someone understand the disease a little better! and be a little more compassionate if you see us and we do not have a smile on our face, or look rundown! You might not know what we have just been through