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 have to care for me so much, but she would spend all winter under a blanket in bed because she can't stay warm! So we do not know which one is better.
As far as the Dystonic Storms go I have had my fair share this week. I fell out of the chair the first one I had this week and so I had the storm on the floor all together I have had about 11 this week. I have had better weeks!
My mind has been a mess I cannot remember anything this week, but I am not sure why, and my speech has been slurred. so I am hard to understand! I even text words back words when I text people.
It has been a frustrating week because my wife has had to do so much! the basement is dry enough to start putting it back together so I am hoping we do not get anymore rain! the sooner we get it finished the less storms I will have because of the windmills and lightning, I will talk about the windmills in a separate post sometime, because they may be echo friendly, but they are not Dystonic friendly.
I have been in pain most of the week, and so has my wife so it has been rough so for those of who see us on a semi regular basis please do not judge us based on our mindset at the time. I will not be rude on purpose, sometimes I do not remember what I said or if I said it. It can be discouraging going to the doctor every month just to have them tell you they are doing all they can, but the medicine stays the same! I have to learn to be content which is not easy! so I may sit and not say much, but it does not mean that I am upset at anyone, or I may step outside to get away from noise, please do not take offense it is not you it is my life I am used to it.
Just think about your week if you are able to get up and go to work, and be thankful for the Job that you have been allowed to have. Monday I could not get out of bed until almost 3:00 in the afternoon because I could not move very well. I have used a cane most of the week so I can walk! I want you to be thankful for your health if you have it, and be empathetic to those who don't because regardless of how healthy you have been someone else may not have that Luxury.
Dystonia takes a mental and physical toll on your body, and It is discouraging sometimes. So all someone may need is for you to listen, and not to criticize because it may be you in that situation at some point in your life! and you would want encouragement when you are discouraged!
I am not sure this has made sense my mind is ever wondering away from me so putting something together that makes sense is difficult for me, but these are my thoughts, and yes they may be random, but that is how my mind works now!
This week has been discouraging so I am Struggling to deal with this disease still
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