Posted 25 June 2013 - 06:13 PM
I always used to say 'whatever it is that I have', 'whatever is wrong with me', or 'people like me'... But never 'I have Parkinson's'...
I have not told anyone, bar my saint of a wife, and I've no plans to do.
I would say that I've finally hit the 'Acceptance' stage... No more denying it... No more bargaining with some nebulous, all powerful being... Little fits of feeling down, or self-pity, but I quickly get myself sorted... Chin up, chest out and get on with what needs getting on...
However, I am still angry... So much so that if I hear a Michael J Fox joke I am ready to literally curb stomp that person. Not that I even like MJF, I really, really do not, but that is a different post entirely.
But accepting it, verbalizing it... I've made it that far... And it took me almost 3 years.
I take 2 x 25/100 Sinemet every 4 hours, 1mg Azilect in the morning, and 1.5mg MirapexER a bit before bed to see me through the night... and about 50mg of Valium through the course of the day to hide my shaking limbs, hands, etc...
I didn't mean for this to become a whinge-fest... I am hoping to meet some decent friendly people who can understand, or at the very least empathize.
I hope I am not making the impression that I am a miserable bastard who just whinges about this and that... Just bear with me... I'll get there, eventually. While I've been on this 'journey' for a few years I feel like I've taken more backwards than forwards steps and have been relegated to the sidelines.
Which I truly have been in a most literal sense. I am unable to play cricket or football anymore... I no longer have the speed, mobility, agility or stamina... but in my head I still do.
I suppose I'll end on that note...
Cheers for reading...
Posted 25 June 2013 - 06:33 PM
Posted 25 June 2013 - 06:48 PM
Posted 25 June 2013 - 07:10 PM
Posted 25 June 2013 - 07:30 PM
Posted 25 June 2013 - 09:48 PM
Posted 25 June 2013 - 09:56 PM
Posted 26 June 2013 - 12:35 AM
Posted 26 June 2013 - 12:44 AM
Posted 26 June 2013 - 07:10 AM
My pd didn't show up until I was 58 so I didn't experience many of the frustrations that young onset folks do. I do however empathize and can relate to most of the issues common to all pwp. I'm currently on a business trip with 5 colleagues and realized how hard it is for me to be the person in the group who has "special needs" or just being different from them. For example, I'm one of those pwp that wakes up every night between 2 and 3 a.m. (and cannot go back to sleep) regardless of what time I go to bed. So to take care of myself I really should go to bed around 7 p.m. so if I get to sleep by 8 I can get at least 6 hours in. I have shared my the fact that I have pd with my colleagues and they are understanding and supportive. They are more than willing to get me back to the hotel by 7. I find I go through layers and levels of acceptance of the disease and try to remind myself that what ever level I'm at is ok. I think the issue of being different is that I feel like "damaged goods" or "defective" As I said, I experience this even with very supportive people around so it's clear to me that it is my issue.
Anyway, feel free to vent here. We're all in this together.
Posted 26 June 2013 - 07:15 AM
Posted 26 June 2013 - 07:55 AM
So glad you shared with us. Keep coming back!
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 26 June 2013 - 09:54 AM
Posted 26 June 2013 - 03:15 PM
This is a great place to be to share, carp, joke, or just read along and jump in where/when you can. Hope I can be of help to you somewhere along the way and I hope you won't mind doing the same.
Posted 26 June 2013 - 08:08 PM
Posted 27 June 2013 - 02:43 AM
Posted 27 June 2013 - 07:15 AM
Welcome, I'm sure you'll get a lot from this forum. I'm newly diagnosed, last month, so I understand the concept of denial. My visual/physical symptoms are pretty minor in comparison to everyone else on here, at least that's my impression from reading everyone's posts.
Posted 27 June 2013 - 08:56 AM
Welcome to the forum .
Edited by MarciaJ, 27 June 2013 - 09:03 AM.
I had treatment for cancer in 2003-2004.
Symptoms started shortly before Diagnosed 2006. At Age 54 .
Waited 5 years before it was necessary to start meds.
Meds-Carbidopa/levodopa 25-100mg cr tabs four times daily
Benztropine 2mg tabs twice daily
B12 tab for memory loss, one daily
Posted 27 June 2013 - 11:21 AM
You have come to the right place for support, answers, and humor. Thank God for the humor. It keeps me going and gives me hope that you can have a life.
Edited by she-ra, 27 June 2013 - 11:24 AM.
Current age= 61
Symptom Onset- 2009 (56)
Current meds:Sinemet 3X/day (25/100)
Posted 27 June 2013 - 02:56 PM
Everyone comes to terms with this diagnosis in their own way and their own time. We're all in this together! I hope you find as much camaraderie here as I have!
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