Please help me to understand my newly diagnosed 46yr.old brother

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As Ed/Yekkimo said, your brother has to come to terms with his situation. He'll undoubtedly share his condition with you when he's ready. He's lucky to have a sis like you who is so concerned. In the meantime you can educate yourself and be ready to support him when he's ready to tell others.

My husband knew right away because he was with me when I was diagnosed in 2001. I chose not to tell my then-mid-teens sons or other family because I didn't want them to worry. There wasn't anything they could do anyway and my symptoms were easy to hide. (Maybe that's how your brother is feeling now???) I/we still haven't talked at length with my boys about my diagnosis because I don't want them to be concerned. My brothers and parents pretty much understand the significance, although I haven't really needed their support yet.

I told my co-workers about a year after I was diagnosed. I thought some of my co-workers had noticed my tremors. However, when I did tell folks at work, it turned out that no one had a clue. But ... telling them relieved stress I was feeling.

Hopefully your brother in seeing a good neurologist or preferably a movement disorder specialist (MDS). Most folks start out on a medication that falls in the category of a dopamine agonist - usually Mirapex or Requip. Sometimes it takes awhile to get the dosage right and to work through some of the side effects - nausea, etc. There probably will always be some side effects to any pd medication he takes - is how it is.

Support from others is so important. It is difficult, however, for a person who doesn't have Parkinson's to truly relate to the situation. I've found pd chat rooms and pd support groups to be very valuable. They can also be helpful for caregivers, family, friends, etc. The most important thing is for the person with Parkinson's to educate themselves about their alternatives. They are their own best advocate!

Hang in there. Your brother will share his situation with you when he's ready. In the meantime you can arm yourself with information and be there for him when the time is right for him.

lizzy4451

I understand your comments about feeling cheated if your brother moves and the issue about you knowing and other family members not knowing. But ... the issue is still the same. It's your brother's place to share his medical condition when he's ready. Until then, you can ready to support him when he comes to terms with his Parkinson's.

Regarding the move ... 2 years is a loooooong time away. I bet your brother will have shared his situation by then which will open the door for discussions about potential future care issues. I would enjoy today. Tomorrow will come soon enough.

Lastly, I'm from Indianapolis and am involved with 2 support groups in Indy. I know you said you're from Fort Wayne. If/when you look for a support group in your area, give me a holler. Also ... the Indy support group called  PAACI puts on a fabulous PD Symposium every year (I can say that because I'm on the Symposium Committee ... tehehehe). It probably will be in October this year. I know it's a bit of a drive from Fort Wayne, but keep it in mind. I maintain the website for the young-onset support group in Indy and will post the Symposium info on the website when the date is determined. The Young Parkinsons of Indiana young-onset PD support group website is: http://www.YPIndiana.org  (I can't get the hyperlink to work, so you'll have to copy and paste that URL.)

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Hi, Lizzy

I'm sorry if you misunderstood, I"m from Richmond, In and my brother is from Ft.Wayne.  I have a cousin who lives on the outskirts of Indy, called Fishers I believe?

You know I'm not even enjoying my brother at this point. I ask him a question about anything on line and he will answer with a yes or no, and leave it at that. He's pulling himself away, which he has to know I"m noticing.

I'm trying to get him to open up a little for he works for the state of Indiana and a private company has taken over, as much as alot of state jobs now, so he's working for another company, same position and hates it, but they have told him and others they a couple of years to still work there, so theres alot on his mind right now, and he has developed a "whatever" attitude and I just say to him, I understand for I too lost my job a couple of years ago.

I don't see him often with the distance but theres no way I can see him again, without it showing on me that I know. My sil just confirmed what I already knew by putting two and two together. The issue is he's getting defensive and he's making it harder for me to play dumb here. I feel I need to let his wife know secretly how he's acting around me now, which she doesn't know and maybe she will tell him he needs to tell me.

I don't know anymore.............he's pulling away, so how could it be better for him to wait until it's right for him, when it's effecting us anyway?  Thanks a bunch!  Joanna