Posted 20 February 2013 - 08:10 PM
Posted 20 February 2013 - 10:21 PM
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.
Posted 20 February 2013 - 10:25 PM
Posted 21 February 2013 - 06:23 AM
Posted 21 February 2013 - 09:31 AM
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
Posted 21 February 2013 - 07:41 PM
Posted 23 February 2013 - 10:03 AM
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.
Posted 23 February 2013 - 01:22 PM
More than honorable! and noble.
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.
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).
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.
Posted 15 March 2013 - 08:33 AM
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