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Topic Newly diagnosed, doesn't want to talk about it Go to previous topic Go to next topic Go to higher level

By mgardner On 2013.01.01 16:52
Hello, I am new to this site but very glad I found it. My husband was diagnosed with Parkinson's about a month ago. The neurologist announced this news with all the sensitivity of telling my husband he had a hangnail, and didn't provide any further information. Well, my husband has been equally cavalier about it. He's asked about it hardly at all, and doesn't seem too concerned, outwardly. Meanwhile I've been trying to find out everything I can (that's how I came to be here).

Do you think I should go along with my husband's seeming disinterest, and only provide information if and when he asks for it? I have a suspicion he's afraid the more he knows about it, the more depressed he'll become. What are your experiences? Thank you.

By LOHENGR1N On 2013.01.01 19:29
mgardner, Hi and welcome to the forum. What you describe as Your Husbands reaction and also Yours is common in morning or grief. Which is what will happen when a diagnosis of Parkinson's Disease is made. It can be common to try to ignore it just as it can be common to try to learn as much as one can about it. There are stages of grieving one goes through upon diagnosis of a disease like Parkinson's and denial is one. It might help to read about that process now to understand the feelings you and your husband may experience over these next few months and years as we can go from one to another then back all over again throughout the disease. Again welcome to the forum. Please ask whatever you want for questions between all of Us here there's a good chance someone can help. Right now try to relax, catch Your breath and digest what's happening. we look forward to conversing with you.

By jcoff012 On 2013.01.01 21:43

Welcome. Al beat me to it, although I agree. Everyone experiences the news differently, in his or her own way, in their own time. My husband has the "it is what it is" attitude, but I am the researcher and the complainer ;)

Please come back with questions. You will find amazing folks here, some who are facing all stages of PD.

It is a terrible feeling to be told you have a debilitating disease for which there is no cure...who hasn't seen the movie with Lou Gehrig facing his disease? I cannot imagine being told this is it, and there is no cure, and you are going to get worse, not better.

This disease is hard on everyone close to the PWD, just read the boards. But, through it all, you will have a place to vent, to ask questions, to seek answers, or to cry.

Come back often. It is. Long haul. Good luck and nice to meet you. Jane

By mgardner On 2013.01.02 15:01
Thank you both for your responses. Nice to know ours are normal reactions, I guess. I have a feeling I will be coming back to this board often. Nice to meet you too.

By Trusting On 2013.01.02 21:58
My husband was only diagnosed a little over a year ago. He would talk to me but really didn't want others to know at first. I didn't realize that there are stages of dealing with diseases but I suspected there might be b/c of the roller coaster of emotions we have been on together. At first I think I thought everything would be okay, then I became afraid, I've gone through some anger, and more.

I wish you both well on this new journey. Enjoy life one day at a time.

By mgardner On 2013.01.04 01:41
I think what my husband and I both want right now is to be able to pretend it's not going to get any worse, or that the symptoms are just "old age" characteristics. Perhaps this is a form of denial, or a stage. I think for now that's all we want to deal with, and as for the future we'll worry about that when we get to it. I mean really, what can you do? Yes, I've been researching PD, but I'm at a point where I need to take a break from it. Does that sound reasonable, or is it childish?

By lurkingforacure On 2013.01.04 12:38
Neither, it sounds normal for you:) Everyone processes this in their own way. Learning what PD may be like in 10 years when you just got dx'd would be horrible, IMHO. You will learn stages as you are ready. In the meantime, enjoy your lives.

By Lynnie2 On 2013.01.06 16:42
My husband was diagnosed 5 years ago at age 59. We were told by his heart doctor and it hit us like a brick wall. We didn't take his say so, but went to a Motion Disorder Doctor who was top in his field, who confirmed PD.
For the first six month or more we only told our family and our brothers and sisters. He didn't tell our friends but it was hard on me keeping it from them and I did tell a few of my friends. It's easier now that everyone knows.

You will just have to take one day at a time and as the symptoms increase he will deal with them. Make sure he does exercising so he won't stiffen up and keeps going if he has the energy. Hopefully his progression is slow.
My husband just ordered a exercise bike so he'll be able to get some exercise in the cold weather. There are a number of exercises for different part of the body, so hopefully your husband starts to do some of them. Golfing is good and bike riding if he enjoys it. Take care and just know that you aren't alone in this journey.

By carman96 On 2013.01.09 16:14
We were much the same way when my husband was first diagnosed. It is shocking to get a diagnosis like that. What we did do is travel as much as possible. I'm glad we did since it's getting harder to travel as time goes by.
The future is uncertain for all of us. PD is so different for everyone.
For now just enjoy life is my advice. Also make sure you have a good neurologist that will take the time to answer your questions.

By mgardner On 2013.01.10 23:24
Thank you for your honest replies. It does help to know we are not alone!

By Liliana On 2013.01.11 05:22
My fiancÚ was diagnosed last year, he's young..we both are I'm only 39.., he was in denial over his symptoms for along time, was in denial when he was diagnosed and now I'm just not sure anymore. I wrote the post on hyper sexuality, sought out this forum in desperation just a few days ago and it has really been helping me reading about other peoples experiences. Like you I don't feel alone any more. I bought the book 'stop parkin'and start livin' by John c.coleman when he was first diagnosed as I really wanted him to follow the natural medicine route rather than pharmaceutical drugs but he just wasn't interested, it's a good read though. He hasn't read anything and doesn't show an interest in understanding the disease or the consequences of drugs, and if you read my post you will understand that we now find ourselfs in a difficult scenario. All of the researching online can be exhausting and daunting and scary and I completely understand how your feeling right now. You get great advice and insight on this forum, I've taken lots of time to read through the many posts.

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