Living With Dystonia

We are now finally in the process of trying to get everything cleaned up after the recent flooding removed us from our room in the basement. It is now dry enough to start trying to seal the concrete again and get it ready to move back into. My wife cannot wait, she does not like clutter, but we have a basement full of clutter upstairs. A friend from our church has been kind enough to help us out, and through various donations we have enough to begin    We began the process this weekend. I should not say we because it has been so hot I haven't been able to do much. I am still having the problem with my skin feeling on fire, but that will get better, but probably never go away. because of this we have been going to bed earlier and the new medicine allows me to wake up earlier so I can enjoy a little bit of the day before the heat sets in.     We got the brick and mortar picked up so we can brick the outside of the finished part of the basement and seal it, that is where most of t

I have yet another doctors appointment tomorrow at 9 in the morning. It seems to me that all I do is visit doctors. I think I keep the medical field in business or at least keep my doctor in his Mercedes. This time it is to discuss new medication for my Neuropothy, or at least that is what they think it is. I think my mental state is I have given up on doctors try to sort out what I have and what I do not have,  at this point I think they are just coming up with big words to describe symptoms that they cannot explain.     So far no one has been able to explain why or what causes a Dystonic storm they just know it is not an epileptic seizure, and that it is not a seizure of any kind. It just when the brain desides to throe random signals around in your brain that cause your arms and legs to twist, and it causes some type of mental issues when it does, but in there defense the brain is very complex. I just wish sometimes they would say that they did not know, but as for anyone those wor

I woke up this morning in an extraordinary amount of pain. The Neuropothy is still bothering me so it felt like mt skin was on fire, However the Dr. changed my medicine I am doing somewhat better in that regard.   I couldn't feel my left leg or my right had so I positioned myself in a way that I could see why. as it turns out my arm had turn itself all the way around at some point in the night and my leg had done the same thing so I little to no circulation in either. I used my left arm to turn my hand back around so it was normal again, talk about painful, I could feel my arm when I turned it around into the correct position. Turning my leg was a little but harder because I could feel my hip twisting which in turn probably caused the rest of my leg to twist. After awhile I managed to get myself untwisted, but I am still sore from that ordeal.This is not unusual for a Dystonia patient may times I find myself dreaming about having a Dystonic storm and sure enough when the pain wake

I was not able to go to church yesterday because my skin still feels like it is on fire, and if I step out in the heat it makes me feel like I am boiling, and the summers here are hot!   I am not going to get to go to Maine for vacation this year because we do not have the finds to do so, and that it always one of the highlights that has kept me somewhat sane these past three years. We have been able to go, but I am glad my parents are able to go my mom has had a rough year so I am hoping she gets to have a little fun in the great state of Maine they embarked on their Journey today.   My Dad bought a little Mobile home to make the Journey for my mom a little more comfortable. So my hope is the traveling isn't to bad on them. My mom got her knew mobility chair so she will be able to do more things on her own, and will be able to get around better than she has been able to lately so I hope they have a good time while they are gone.  As for me I am not sure what the next step is th

This week has been a particularly poor week for me physically and mentally. It started off with the diagnosis of neuropothy last week and it has begun to get worse through this week. I am only going on 2 hours of sleep because  Dystonia, along with many other diseases,  doesn't allow your mind to slow down everything just seems to move faster and faster in your mind as you lie there trying to get some rest, but rest seems to allude me.    I know I am not supposed to dwell on what was, but sometimes that is easier said than done as with most things. I feel trapped in my own head and I cannot seem to get out! I dream of Dystonic storms now. When I am asleep I am dreaming about being awake having a storm, or not knowing where I am, and then ultimately it leads to my waking up and having a storm. I cannot tell you how many times I have been dreaming about having a Dystonic storm only to wake up and find out that it is real. It is very weird for me. This week has been so hot I haven

Dystonia can manifest itself in many different ways. Sometimes mental, sometimes physical. This week head been particularly difficult with the new diagnosis of neuropathy. My skin feels like it is on fire, and nothing seems to help. My Doctor says it has to do with the brain sending the wing signals to the nerve endings in my body.   One thing I have found out with this disease is it can always be a different symptom, and you never know what that new symptom might be. It is an ever changing disease.     I would like to find a work from home position, but those seem very hard to find, but I have to keep hope alive that I will find something. When I cannot contribute to the family or cannot provide for them it can be very mentally stressful, and that makes the Dystonia worse, but what am I to do?    Yesterday I stepped outside and I thought my skin was going to boil because it was so hot. My Wife said that it wasn't very hot, but yet telling my body that.   On top of that my dau

This probably will be one of the shortest Articles I have written, but on there are certain times my mind will not shut down. A day is ending where I had three violent thrashing seizures, and I am exhausted, but cannot sleep. I am very sore because my hip and shoulder popped out during the seizures and my wife had to pop them back into place, not an easy job for her.  My mind wonders what I could be doing if I did not have this disease where would I be working, would I have the same job as I did when I had to stop working. These are all questions that I have, but no answers. I think of how much easier my wife's job would be if I could do the normal things that a husband is supposed to do.   I have been looking for work that I can do from home, but those jobs seem to be few and far between, and I have not gotten a call back in 2 years on some that I am qualified for. Dystonia can take alot from you it can even take the identity of the person that you thought you were, and change

First of all I hope all of you that read this have had a good week. I have had better weeks, and worse so I am caught somewhere in the middle,    I went to My neurologist this week and he gave me the typical exam. He did say I have overactive reflexes on my left side and no reflexes on my right side. This is typical of dystonia patients. The doctors never know what is going to be affected. I have felt that my skin was on fire from the heat that we have hear. and he did a test and said I had Peripheral Neuropathy which-- refers to the conditions that result when nerves that carry messages to and from the brain and spinal cord from and to the rest of the body are damaged or diseased.I learned something this week. My Doctor also told me the only remedy was to move to a cooler climate which again puts my family in quite the conundrum. My wife feels better in a hot climate and she is the one that does all the work, but if we were in a colder climate I would feel better and she wouldn't

    People are always asking questions about my husband. How is he doing? Is the weather bothering him? Did the storms bother him? Most of the questions are not well, yes and YES.  Often times people forget about the caregivers for the ill. They don't understand the strain it puts on the ones who care for the sick. Now,  I'm not complaining, just enlightening. We as caregivers do a lot more then just give meds or food. It's a minute by minute job. One minute I might be in the kitchen preparing a meal and then have to run and sit on the floor holding his head til the seizure is over. Then I have to help him to his chair, with the help of Scoobie of course.                                                                                                                                                                                                                                               When we go shopping I can't fully engage because I'm watching his every move m