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crmmom

Help.....

10 posts in this topic

Hello, I could use some insight please. My husband was diagnosed with PD on 6/2012. He is 60 yrs old and very active. Two months ago his mds put him on azilect. After a few weeks he started making decisions that are not his usual self at all. Also his patience level dropped! He said the azilect made him shaky inside so he stopped taking it. For a couple of weeks he seemed to be getting back to his old self but then out of the blue it happens again. Actually tonight! First, could someone tell me what young onset means? Second is this normal and or is it to soon for him to be experiencing emotional affects from this disease? Also is there a book that explains the symptoms and at what stage they can surface? I just don't know what to expect and when. We are thinking about retiring early and moving to Fl. but truthfully I'm frightened about our future. Any and all help will be genuinely appreciated.

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Young Onset PD is where symptoms set in before the age of 50. Azilect is notorious for causing compulsive behaviors like gambling, sex, spending, shopping. You weren't specific about what is happening emotionally to you DH. Dr. Okun (in the Ask the Doctor forum) is an excellent resource regarding all aspects of PD. The emotional problems I have had related to PD are depression and anxiety, which are really quite common. I have not been successful with Azilect or other agonists, so that did not cause my problems. I'm sure others will jump in and offer their experience, strength and hope as well. Please keep us posted on your situation. I know when anyone writes in for help I am immediately invested in how things work out!

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Of necessity this wil be a brief comment but, obviously your husband has been devastated by a crushing diagnosis. When I received mine years ago I recall a period during which I actively pursued a course I believed would push a lover away so that she could have a life free of the curse which had befallen me, a full, happy life pursuing dreams that once upon a time we had held mutually. I pushed, she bailed and I felt my behavior honorable. Still do. She called the other day as she does from time to time and I enjoyed being brought up to date. Not sure this is even relevant but a dynamic that factored in my life. I wish for you both the very best outcome possible.

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RogerStar1- Wow. That was a very generous gift you gave to your wife. I'm surprised she took it, but the fact that she did suggests to me that you did the right thing. I could easily see myself doing the same thing. In fact, I was a little more direct and told my husband of 23 years that he was welcome to pursue his life without me as I did not relish the idea of being dependent on someone. So far, he hasn't budged and I don't think he ever will. I do wish at times that I was alone because I think I would fight even harder to stay independent. Best wishes to you.

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This is a hard time for you and your husband. Sorting out what is a result of the PD, side effect to medications, or our responses to it all can be difficult. You've come to a good place with lots of support. Dr. Okun has provided lots of helpful info for my husband in the Ask a Doctor Forum.

 

The books that I have found most helpful are:

 

Navigating Life with Parkinson Disease by the American Academy of Neurology, 2013

Basic facts but written in an easy-to-understand manner with patient stories and practical suggestions

 

Take Charge of Parkinson's Disease by Anne Cutter Mikkelsen, 2011

I love this book not just because the recipes are wonderful (they are and the author is a chef) but because of the story she writes about the journey she and and her husband have had since he was diagnosed with PD. It was so true to what I have experienced that at first I couldn't read it straight through (just switched to the recipes when it hit too close to home). Since then, I've read it more than once and have found it helpful each time.

 

The booklets and information available from NPF are excellent too. I've often found just what I'm looking for on the NPF website. They are good about sending hard copies of the materials too.

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If only the progression of this disease were more predictable. Only 2 years since diagnosis, but some days feel almost unaffected, other days feel like i'm on the way to...... ( can anyone help me with the word i'm looking for here?) Would I be selfish pushing the love of my life away, or would it be more noble to continue to push myself to continue being the provider, working 6 days a week in a high stress job with the goal of possibly retiring in 3-4 years?

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1. I think it means basically Parkinson's disease diagnosed before the age of 50

 

2. His behavior could because by several things Medicine or withdrawal from medicine Or the disease itself Or could be his own response to the diagnosis Please talk to Dr. about this.

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When I received mine years ago I recall a period during which I actively pursued a course I believed would push a lover away so that she could have a life free of the curse which had befallen me, a full, happy life pursuing dreams that once upon a time we had held mutually. I pushed, she bailed and I felt my behavior honorable. Still do.

More than honorable! and noble.

Though i firmly believe that couples should stick together. through good and bad times. sickness and health.

and your wife just missed the opportunity to share her life with a wonderful man.

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Of necessity this wil be a brief comment but, obviously your husband has been devastated by a crushing diagnosis. When I received mine years ago I recall a period during which I actively pursued a course I believed would push a lover away so that she could have a life free of the curse which had befallen me, a full, happy life pursuing dreams that once upon a time we had held mutually. I pushed, she bailed and I felt my behavior honorable. Still do. She called the other day as she does from time to time and I enjoyed being brought up to date. Not sure this is even relevant but a dynamic that factored in my life. I wish for you both the very best outcome possible.

 

Roger was this your wife?

I suppose people think I live in Lala-land. But just what is "a full, happy life"? Parkinson's disease has not taken away my ability to live a full happy life. It has changed life in many ways, But it has actually strengthened my wife's love for me and mine for her. By no means do I mean to put you down by saying this. I suppose the determining factor is what a person believes love truly is. For me the definition of love is found in a bloodstained cross 2012 years ago. It means giving your life away.

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Thanks everyone for all your comments. Actually my husband made the remark that if I wasn't happy I could walk away without feeling any quilt. Sorry I can't. I took a vow, through sickness and health! But that's just me! I'm learning that this is a one day at a time thing. Thanks Golden for the doc and book suggestions!

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