Posted 03 May 2012 - 05:01 PM
Posted 03 May 2012 - 06:09 PM
I have very good friends that are willing to help me when I need it. It's hard for others to know what to do. Sometimes I don't want help..just want to do things at my own pace.
Posted 04 May 2012 - 05:23 PM
I wish I were wrong, but target, to some.
Posted 05 May 2012 - 06:46 AM
Posted 05 May 2012 - 06:51 AM
Friends say sorry and listen.
Neighbors say "I noticed him walking funny" and "we know 'so and so' who had it too."
Overall everyone has been kind.
Posted 05 May 2012 - 08:00 AM
Of course, the way other people react to us, is -also- the reflection of our own attitude. Therefore, i think we should try...
-keep as high as possible our self-esteem, our emotional strength and our functional independence.
-avoid discussing our problems with people who fail to understand them.
-don't pay much attention to what other people say, think etc...and
-keep our minds busy doing the things we love...
-English is not my first language !
-Aged 39. Diagnosed at 35.
-Currently on madopar (levodopa and benserazide, 500mg daily) and Azilect (1mg daily).
Posted 26 May 2012 - 06:47 PM
Posted 29 May 2012 - 05:34 PM
Posted 30 May 2012 - 04:31 AM
Posted 30 May 2012 - 01:56 PM
I share your frustration with family members not being willing to learn how PD affects us or even discuss the issue. I went walking with my dad this morning and for the first time since I was diagnosed in late 2010 he said, "So, what do you have? Parkinson's?" I gave him a little information on dopamine loss and exercise being neuroprotective. My mother knows all about my appts, but doesn't understand the fatigue. I thought she was filling in my dad about my diagnosis but maybe she's not. That's just crazy. Apparently if I'm not around and don't bring it up, they ignore it. That doesn't keep me from taking frequent rest breaks at family functions. I'm firm about that. I believe they are afraid to know the full details, so I just give information in very small doses when they seem interested.
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 30 May 2012 - 03:40 PM
Currently age 42. Symptomatic at age 36. Diagnosed at age 39. Sinemet 25/100 mg 2-tabs every 4 hrs (800-1000mg levodopa daily); carbidopa/levodopa 50/200 mg CR at bedtime; entacapone 200 mg every 4 hrs; Amantadine 100 mg 3 times/dayy; gabapentin 200 mg 2 times/day; gabapentin 400 mg at bedtime; Klonopin 0.5 mg at bedtime; Seroquel 50 mg at bedtime; Effexor 75 mg daily; Vit-D3 5000 IU daily;Vit-B Complex daily; Melatonin 3 mg at bedtime
Posted 30 May 2012 - 07:06 PM
And the brick wall therapy.Any break throughs? Volunteer study?
Seriously,in your profession, I can see your frustration. But for a lot of us, incurable diseases was just not summer reading.
As I bobble this keyboard, I wish I'd never heard of dopamine and that "Back to the Future" was the extent my knowledge.
I now know "it's a shaking and stress thing."
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