Sorry for the delay guys. The Bible tells us fathers not to provoke are children to wrath, I am afraid that I do like to push their buttons. One of my famous quips is when one of them, especially my daughter, would start a sentence with "I have been thinking". The first thing out of my mouth is "does it hurt?" Thinking may not hurt but it is exhausting. After a 10 day trip I just do not feel like conversing.
I think, I think to much. What I see, whether it is a result of the Parkinson's or me just being me. I have shared my crazy theory with you all but as long as what I think is going to happen keeps happening I will still believe my theory. I shared it with you in the hope that there was someone out there that says, you know that makes sense. My wife has to deal with me though. She knows her family would think I am crazy. I just can not help myself. I was starting to go in to my theory with one of the family and I get a text ( PLEASE DON'T ) it was from her. But I am right I thought in my own head so I continued...... Then another text saying (Please don't with the praying hands emoji.) At that point I became suddenly aware that as long as the two become one that we both have Parkinson's.
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Serenity_finaly-1
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Wow! I do understand. I can be so mean to the people I love. I don't know why, I mean I know how to hold back, bite my tongue, grit my teeth but, you know, I just can't seem to help myself. I feel like Dr. Jekyl and Mr. Hyde! I get so angry at people when they tell me how good I look and just don't understand why I have pain. They cannot see how Parkinson's is destroying my life, changing me, wearing me down, taking away any pleasure I may find. Every day this damn disease stripes me of another piece of myself! No one can hear me screaming, no one can see the terror in my eyes and it jut maddens me. So my anger gets the best of me and the hurtful words come out.
Thank you for your honesty. I understand that you and I are different people than we use to be. I just didn't get that my wife suffers with me and therefore she has Parkinson's too. I need to know what she is going through just as much as I want people to know if what I am going through.
My husband tells me my Parkinson's is worse for him than me! I just want to hurl a chair at him! So far I've restrained myself, but it doesn't bode well for the future when he might actually have to help me.
My Robert has been with me for the last 7 years and I have had Parkinson's for 10 years. I told him about the Parkinson's and my other health problems from the git go and yet he still chose to stay. I love him for that. There are times when he pushes me too hard and I either go to our room and hide or give him "what for", which results with him shaking his head and wondering if I'm bi-polar! I know this disease is hard on him, I just don't know what to do about it.
It is like the movie The Incredible Shrinking Man. We are dealing with our world getting smaller and smaller.... independence to dependency. All we can do is examine our life, know we are here for a purpose, and with God there are no zeros.
It is just the most awful disease and I do feel as though I am getting smaller. I don't want to lose who I am. I have worked so hard on my life and just when I thought the bad times were behind me...BAM Parkinson's!!!
When it happens to me, I can not force, push , pull or otherwise coheres the real me back. He is so damn ugly at that point.
I have a place, a comfortable familiar safe surrounding where I can rest, read, take medications and wait. I Cancel every appointment and go there. I find after day 2, that I feel like myself a bit more but still odd. I hear that poems are good and good food with a small glass of wine helps.
Jane, I am so sorry that is how it is for you. Are you doing everything for yourself that you can? Exercise to the best of your ability? Taking, or have tried, NAC? Are you medications well adjusted? Qigong has been helpful for me: healthunlocked.com/parkinso...
Yes fatigue and exhaustion is a problem. I have a rare neuro muscular disease that cause my muscles to cramp and spasm all the time. I was hospitalize for 3 days when my diaphragm was in a spasm and was not letting me breathe properly. I have many health problem but none of them seem to be changing who I am like the Parkinson's does.
57 years married now. My husband has the Parkinson's. It seems to be getting worse fast now. I feel so bad when i get irritated out of exasperation. I have very little of any other life now, except for great kids and some friends. I want to fix him and i can't.
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PARKINSON'S REGISTRY RE-VISITED
Parkinson's awareness??
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