Posted 25 January 2013 - 01:31 AM
Anyways I am 36 years old and was diagnosed by a datscan and clinical diagnostic procedures about 3 months ago. I have alot of the symptoms including resting tremors (left hand ) , rigidity, bradykinasia, dystharia, double vision, mulitasking issues, cognitive issues and of course walking issues. My mds was surprised that i had not been diagnosed early in my life. (Stubborn me just blew it off as fatigue and stress. )
So far meds are 3mg ropinerol 3x daily and Wellbutrin. Meds not as good as they could be... starting not working as good. May need to talk to mds next visit.
I have been put on disability leave from work and am struggling with them to find a suitable position...afraid of long term disability. I am a manager for a railroad that required extremely long shifts, high stress... etc.
I am married and have 2 boys. I am still in denial alot of the time and am simply afraid...understandable under the circumstances.
Anyways just wanted to say Hi... and to thank you for all the great advice in the forums.
Posted 25 January 2013 - 07:45 AM
It sounds like you’re already getting a pretty good handle on the situation; although, you might want to work on those posting procrastination skills.
Improvise, Adapt and Overcome
Posted 25 January 2013 - 12:13 PM
Posted 25 January 2013 - 01:39 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 25 January 2013 - 07:59 PM
Edited by Brad24, 25 January 2013 - 08:03 PM.
Posted 25 January 2013 - 08:22 PM
Dx in 95' at 35- Normal MRI, Abnormal Da t Scan- Resting tremor- right foot, leg tremors. RX- 25/100 Carb/ l <600 mg,
1mg -Azilect, 3x daily -25/100 ER Carb/ Levodopa.
Posted 25 January 2013 - 08:40 PM
Posted 30 January 2013 - 06:57 AM
When my work quality began to suffer, and I was exhausted trying to perform at the same level and pace that earned me that high level job with a six figure salary, I took another 12 weeks of FMLA and applied for the LTD benefit offered by my employer. The benefit provides for the payment on a monthly basis of 60% of my salary til age 65. Ii also applied for SSD which was approved.
I cried and felt sorry for myself because I loved my job, worked hard to earn it, and didn't want to give it up. But I have to say it was the best thing I did. I seriously don't know how I could possibly still work 55-60 hour weeks and perform at the level required.
If your employer has a generous LTD benefit, you may want to consider taking advantage of the opportunity. Not everyone is lucky enough to have that option.
Welcome to the forum. There are great people here who are willing to share their knowledge and experiences with others. I consider myself lucky to have found the group and feel like I've gained a large number of friends who know and understand what I'm going through; who pick me up when I'm down; and who are always here when I need them.
And, hey everybody, guess what! I cut my own toenails last night and still have all ten toes?
Posted 30 January 2013 - 08:35 AM
I am still in denial alot of the time and am simply afraid...
Aren't we all...in denial and afraid...OK, maybe not all....maybe just some...or maybe just me...LOL
Welcome eloah! Glad you jumped in!
PS: we need MORE active posters. Not just readers. Sign in, write, share.
-English is not my first language !
-Aged 39. Diagnosed at 35.
-Currently on madopar (levodopa and benserazide, 500mg daily) and Azilect (1mg daily).
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