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A Typical Dystonic Day


This is my Life. Today I woke up and stumbled around because I had no balance, no one could understand me because I spoke in cursive, that is the joke around our house. I couldn’t get my medicine so my wife had to do it all the while trying to clean up the house. Usually I have to have one cup of coffee in the morning to get the wheels somewhat turning, if I have any left.
   Roger Hall made me a cane that has been very helpful, and I thank him for that because without that I would be on the floor most of the day with my wife having to pick me up. My thoughts may be somewhat scattered today because that is the state I am in.
    With Dystonia the electrical impulses do not always go to the correct place, that is why sometimes I cannot speak, but I can still sing, sometimes I stutter but when I sing I do not. It is all a mystery to me and to all my Doctors. My sister has been going through this for well over twenty years. Today as well my legs feel like one giant Charlie horse, very painful, My wife is getting things ready because her brother is having a garage sale and we need some money to get the car out of the shop.
    It was interesting when I counted the receipts for this month and found out between prescriptions, and Doctors appointments,  and the cost of medical insurance it came almost to $1300 Dollars, and for those of you on social security disability you know that amount is about what you get when on SSDI. Somehow the Lord takes the money I make and stretches it sometimes through gifts from our church and sometimes through individuals. I thank the Lord for all his provision, because without them we would not make it.
    I wanted to go back to Maine this year and see everyone, but with the flooded and basement and lack of funds it doesn’t look like I am going to be able to go, but as I have learned I do not get to do what ever I want.
     I can’t tell you how many times I have lost my train of thought during this writing, but this is a typical day in my life. I want people to understand and know the difficulties of the disease physically and financially.
     We do not qualify for any kind of help be cause somehow what I make is a wage the legislature of the state of Oklahoma thinks I can live on, I have asked my representative to try an live on this wage with a family of four and pay insurance and buy groceries get the prescriptions for his children and see how comfortable he is, or if he can make it on what he has decided is a livable wage. Not to my surprise he did not answer. I am glad my Gog can supply all my needs and I do not have to rely on the government!
   I am sorry if this bored you, but I think it is important to know the struggles that Dystonia brings mentally, financially, and physically. I think I have reached my limit of typing things people can understand, or I may go through this later and wonder what I was thinking.
If you have read this I appreciate it you can subscribe by clicking the subscribe link on the top of the page or follow by clicking the follow button. If you would follow it would be blessing to me, and if you choose not to because you do not want people to know that you know me that is fine as well. 😊 I don’t know there may be some out there! God bless, and remember to pray for the struggling families I know I am not the only one.

Comments

  1. Josh, I had no idea life was so difficult with this disorder. I am not familiar and so am interested in learning more about. I am very sympathetic to you and your family. God be with you as you struggle to cope.




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