My younger brother (48), has recently been diagnosed with Parkinson's disease.
I want to help him, leave him alone, honor him, save him, let him handle it as the mature man he is, and go make it all better for the little brother he will always be to me. awful.
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hornplayernem
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Hi, Understand your concern, best is be there for him if he needs support. You could help yourself by finding out information and knowing a little of his "Parkie problem". He may react denial, bitter,.anger, lethargy, finally and hopefully acceptance of the Disease. Just be there for him. Believe me it helps in the being to have a shoulder to cry on.
The best thing I ever did was to join the blogs. The key word is "be there". I am fortunate to have 3 daughters, and a son, who have been fueling me with love, compassion, do's and don'ts and try to stop the flow of tears. btw I enjoyed reading your blogs. I was diagnosed w PD for 12 years now and until now, I have been dealing with suffering. I found that if your mind is occupied the tremors and shakiness is less.
When my husband was diagnosed with Parkinson's I suspect I took it worse than he did - for a while. Then it was a case of finding out more together. That helped me because until then he had shut me out of Parkinson's and his depression. He now says so that I didn't get bothered! Fat chance of that.
Get armed with the facts, treat the possible symptoms like a menu, look at what there could be on the plate but don't assume you'll actually get any of them of even if the dessert will follow the mains or vice versa.
Be aware that non motor symptoms can be harder to handle than the motor ones and when he is ready to laugh again, be there to find his jokes funny!
If you are in the UK there is a wonderful support structure for people with the condition and their families. I don't know so much about other countries. You are not on your own and neither is he
Sue, I love your response! I think that learning about Parkinsons together makes you a team in dealing with a disease that can be so isolating..
The confusing part is that Parkinsons can bring a huge amount of uncertainty.-presenting with different symptoms on different days..You never know what Parkie will do on any given day..
There is so much we DON'T know ...so much the "experts" don't know..
If you keep a united front, learning,documenting changes and meds,with an understanding that your loved one will have good days and bad days.....and when they are frustrated..they are NOT mad at you...you will both benefit.
The person with Parkinsons can express their feelings and symptoms and not feel isolated and alone.
My father has Parkinsons, and I see that the same great guy with the quick wit and unconditional love for me is still there and we are closer than ever.Some days he comes in a different wrapper but he is always my Dad and my hero!
Unlike my children who helped me to accept my conditions, my husband kept quiet did not even want to tell any of our friends. So I dealt with this for 12 years and until now when I showed him the blogs
did he understand that this sickness is suffered by many people and its not contagious. He has a better understanding now, so arm yourself with knowledge! Go withe flow! Thanks, Sue
The best advice I have seen or read is: Only help when asked or welcomed. Give him the dignity of as much independence as he can handle. Let him do & manage whatever he can. Don't leave him alone. Honor him. Don't try to save him or make it all better because you can't. Trying & not succeeding will cause you emotional distress & take precious time & energy from doing the things you can. The most helpful thing you can do right now so soon after diagnosis is to provide emotional support & research Parkinson's. Listen to him & let him know you understand PD & his feelings. He's very lucky to have such a caring brother to be there for him. Adjusting & coping are so much easier when you have family support.
I would agree, do as much research as you can. The worst reactions I have received is from people who don't really understand this quite complex condition were: Initially hearing my family whisper concerns when I was out of the room, then my 77 yr old mother who would not stop ringing me - sometimes 3 times a day, a good friend who hugged me tightly and wouldn't stop crying when I told him, other friends who also cried, and then of course the 'friends' who run for the hills and you don't hear from at all, then there are the people who only seem to see you on a good day who adamantly maintain there is nothing wrong with you it must be a mistake.
I think it's almost as hard for those close to you receiving diagnosis but I can honestly say a year on after diagnosis, we are all settled down now and the panic has left us and it will all be ok.............
The good thing about it is I certainly know who are my true friends now.
When my husband was diagnosed, he didn't want to tell anyone. People knew there was something wrong but he was in denial for nearly a year. In the meantime, I reached out and found a suipport group. I learned all i could and keep learning more. I am there when he needs help but I try not to hover. I can tell when he is off and predict how the day will go by the way he wakes in the morning. Just let him know you love him and to call when he needs you.
If you're in the NYC area there are great programs and support groups for pwps (persons with parkinsons--we don't refer to ourselves as patients ) and their "caregivers". hope they find a new term for caregivers. my daughter had a meltdown over it. But we have fun!
The very best you can do for him is be patient. There is no need to become a expert on PD, but try to understand a bit of what is happening to him. If this was prettg much just laid on him, he will need a lot mkre support than if he expected something like this. My wife and I expected my PD for a long time, may 3 to4 years. When we found out it was more relief. A confirmation I wasn't just a hypocondriact or some thing. To just be hit with it.... ouch. If you understand he is not an invalid, but will need both help and space, realize he most likely isn't after pity,but there are times he will need a shoulder for support, or what ever. Just understand he's still there just slower, stiffer, and a bit woobley. He may not smile at the jokes so easy, but he will still think their funny (if they are) . You may need to learn what to do with strange things, like freezing, in many forms. Walking, talking,and reaching out. Most of all stay his brother, there are plenty of EXPERTS out there.
When I was diagnosed last year, I didn't want to tell anyone. I was sure the doctors were wrong, and was I ever in denia! Only my immediate family members knew what was going on. I think they had a more difficult time with it than even I; but I really needed someone to talk to about what I was going through. Someone who wasn't so close to me because I've learned the hard way that it upsets my family or makes others uncomfortable. And, it's true, you learn rather quickly who your "true" friends are. I tend to keep things to myself because I don't want to upset those close to me. It has been helpful to me to have a support group through this website. There's always someone out there who will listen, and we are all going through the same things. I've said it before; but I am so thankful I stumbled upon this website while searching for information on PD. There is a wealth of information on this site. Everyone is supportive, understanding, and kind. My advice to you would be to educate yourself about Parkinson's and be there for your brother should he need you to lend him emotional or physical support. And, yes, as olpilot said, it is important to stay his brother. I commend you for loving your brother enough to reach out in order to try to help him through this difficult time. Welcome, my friend and best wishes to your brother and yourself!
As a brother, you will know the best way to be supportive, My brother, for instance, likes science and so we talk about my PD from that angle. Humor is a big factor with us, too. But basically just treat him as person and not as a sick person with a scary incurable disease.
Thank you for the opportunity to post thoughts and concerns. Your comments are helpful, and give direction. The diagnosis was sudden for my Brother. He's been incredibly healthy and vital. With the new diagnosis, he was able to piece together, symptoms discovered over the last few years. Makes sense to him, now. Thankfully, we do enjoy a ridiculous sense of humor. Tears and laughter. Thank you, everyone.
just always be there for him for when he needs someone. whether he feels upset, frustrated, angry or just wants to talk. but the main thing is never stop treating him any differently to what you always have and that is with lots of love. xxx
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