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#1 crmmom

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Posted 20 February 2013 - 08:10 PM

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.

#2 Beau's Mom

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Posted 20 February 2013 - 10:21 PM

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!

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

Diagnosed December, 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 62: Sinemet 25/100 ODT every 2.5 hours while awake (7/day). One Sinemet 25/100 CR between midnight and 4 AM. Trazodone 200 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 115 caregiver hours/month keep me sane.

 

All of the above subject to change based on progression, stress level, and dyskinesia. Whew! I'm glad I finally wrote that all out.


#3 Rogerstar1

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Posted 20 February 2013 - 10:25 PM

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.

#4 Gardener

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Posted 21 February 2013 - 06:23 AM

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.

Gardener, female, 59, diagnosed at 55, 1,100 mg of Sinemet daily


#5 Golden01

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Posted 21 February 2013 - 09:31 AM

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.

Husband diagnosed in 2005-Medicines: Azilect, Artane, and Amantadine, Levodopa (1X/Day); Sister and Best Friend from Childhood also have PD


#6 vipowitz

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Posted 21 February 2013 - 07:41 PM

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?

#7 Luthersfaith

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Posted 23 February 2013 - 10:03 AM

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.
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#8 christie

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Posted 23 February 2013 - 01:22 PM

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.

-English is not my first language !

-Aged 39. Diagnosed at 35.

-Currently on madopar (levodopa and benserazide, 500mg daily) and Azilect (1mg daily).


#9 Luthersfaith

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Posted 23 February 2013 - 02:35 PM

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.
"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#10 crmmom

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Posted 15 March 2013 - 08:33 AM

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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