Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

Where are you?

Location state YOPD under 50 region

  • Please log in to reply
39 replies to this topic

#21 annfisher43

annfisher43

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 28 December 2013 - 08:31 PM

I'm 48 and dx almost 5 years ago. I'm in ohio

#22 annfisher43

annfisher43

    Advanced Member

  • Members
  • PipPipPip
  • 80 posts

Posted 28 December 2013 - 08:32 PM

I'm 48 and dx almost 5 years ago. I'm in ohio

#23 Prospector

Prospector

    Advanced Member

  • Members
  • PipPipPip
  • 162 posts
  • LocationKy

Posted 30 December 2013 - 08:40 AM

41 diagnosed 2012. Louisville ky. Currently in deep depression after loss to UK in basketball. :)
Dx Nov 2012 at 40

Meds: generic sinemet 25/100 x4 a day
Azilect 1 mg x1 a day

#24 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,864 posts
  • LocationSeattle, WA

Posted 30 December 2013 - 12:04 PM

Prospector, I have a brother in Radcliffe, KY who works for Keyboard Carriage in Elizabethtown. His step-kids are all huge college basketball fans. One stepson and his wife and daughter actually live in Louisville. I can't remember, of course, who they root for.

 

Did we ever get dressed in 30 seconds? I can't recall how to be that fast any longer!


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.


#25 Gardener

Gardener

    Advanced Member

  • Members
  • PipPipPip
  • 266 posts
  • LocationOhio

Posted 30 December 2013 - 05:47 PM

Ann, where in Ohio are you? I'm in Ohio also. Gardener

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


#26 Annikin

Annikin

    Advanced Member

  • Members
  • PipPipPip
  • 371 posts
  • LocationCentral Florida

Posted 30 December 2013 - 08:02 PM

Melbourne FL   Symptoms started at age 36 (left thumb twitching) , diagnosed last year 11/29/12 at age 46 (went hang gliding the next day!). Still working and going strong. No history of PD in family.



#27 Twitch

Twitch

    Member

  • Members
  • PipPip
  • 26 posts
  • LocationRhode island

Posted 30 December 2013 - 08:51 PM

Bristol, Rhode Island. Diagnosed Dec, 10 2013. Symptoms started at least 10 years ago with severe stiffness, muscle and joint soreness. Developed a tremor in right arm that's been getting worse for the last year. Also have many other symptoms including gait issues. Haven't gathered myself since my diagnoses.

#28 bluedotsmom

bluedotsmom

    Newbie

  • Members
  • Pip
  • 9 posts

Posted 31 December 2013 - 04:38 PM

49, just diagnosed 12/18/13, noticable & problematic tremor noticed about October.  Looking back, loss of smell probably 10 yrs ago & have been watched for possible autoimmune disease for about six years.  No one in family with PD.

I live in AR



#29 Rogerstar1

Rogerstar1

    Rogerstar1

  • Banned
  • PipPipPip
  • 1,891 posts
  • LocationWashington, DC

Posted 31 December 2013 - 06:38 PM

Welcome.  But who is Bluedot?



#30 bjenczyk

bjenczyk

    Advanced Member

  • Members
  • PipPipPip
  • 121 posts
  • LocationLittleton, MA

Posted 01 January 2014 - 03:38 AM

49, diagnosed at 47 due to loss of arm swing.  Complained to doctor of loss of smell around 5 years ago.  I am a CPA just outside of Boston, Massachusetts.  My biggest problem is rigidity, not tremor.  Sometimes when the rigidity is really bad I can't bend my left leg and can't walk for more than 100 feet or so.  Still, try to stay positive and enjoy life.


Dx'd 3/12 @ 48. Symptoms 7 years prior.
carbidopa/l dopa 25/250 6x daily, CR 2 pills at bedtime
No DaT scan, normal MRI. Dx'd by observation of neurologist,

Symptoms: left side rigidity when "off", sleep disruption, no sense of smell, minor fatigue, back pain

 

Still an optimist - what is wrong with me?


#31 bluedotsmom

bluedotsmom

    Newbie

  • Members
  • Pip
  • 9 posts

Posted 01 January 2014 - 01:29 PM

Great question Rogerstar!  Blue is my oldest dds middle name & Dottie is my 2nd dd.  :-)

 

Sorry to be slow replying, I usually get a chance to read at my lunch break & it can be a while before I get back.



#32 johnnys

johnnys

    Advanced Member

  • Members
  • PipPipPip
  • 596 posts
  • Locationnys

Posted 01 January 2014 - 04:46 PM

66 now ,dx 2011,loss of smell 2009,upstate ny near rochester.

 

We are going to get a Noreaster  tonight .Love the vertical snow.

 

Happy New  Year all



#33 Rogerstar1

Rogerstar1

    Rogerstar1

  • Banned
  • PipPipPip
  • 1,891 posts
  • LocationWashington, DC

Posted 01 January 2014 - 05:04 PM

Hi Johnnys -  I envy you the impending snow storm predicted to exceed 12 inches with the 'lake effect" I hear.  I spent Christmas this year in your Catskill Mountains - little snow this time which was a disappointment to me.  Nothing quite like snow falling in the woods at dusk.  Robert Frost wrote of it so movingly and memorably in his famous poem:

 

 

Stopping by Woods on a Snowy Evening

BY ROBERT FROST

Whose woods these are I think I know.   
His house is in the village though;   
He will not see me stopping here   
To watch his woods fill up with snow.   

My little horse must think it queer   
To stop without a farmhouse near   
Between the woods and frozen lake   
The darkest evening of the year.   

He gives his harness bells a shake   
To ask if there is some mistake.   
The only other sound’s the sweep   
Of easy wind and downy flake.   

The woods are lovely, dark and deep,   
But I have promises to keep,   
And miles to go before I sleep,   
And miles to go before I sleep.
 


#34 FlyBaby

FlyBaby

    Advanced Member

  • Members
  • PipPipPip
  • 2,280 posts
  • LocationTacoma Wa.

Posted 24 May 2014 - 01:30 AM

currently 54, Dx in 2013 at 53.  Symptoms started in 1992. I am the 6th person in my family to have PD over the space 4 generations, the second with YOPD. Can we say "genetics"?


Edited by graflexmaster, 24 August 2014 - 07:21 AM.

Michael

Current age= 55

First symptoms: 1975

Prior mis-diagnosis: Dyspraxia, Essential Tremors, Ataxia, "Nerves".....

Final Dx. of Parkinson's: 2013

 

DBS surgery 12/2014............ Bilateral lead placement with a single battery/stimulator on RH side. Turned on 12/21/14 

 

"I will do what i can, while I can, and when i can't, I'll do something else"

 


#35 hercules957

hercules957

    Advanced Member

  • Members
  • PipPipPip
  • 94 posts
  • LocationToronto

Posted 24 May 2014 - 11:24 AM

56, dx one yr ago. First symptom was anxiety 7 yrs ago, then left tremors/bradykinesia 3 yrs ago.  Toronto, Canada


Norman

Dx 04/2013 at Age 56, No meds for 1yr. Now Sinemet 100/25 5 t/d 1 1/2 tab at 6:00, 1 tab at 10:00, 1 1/2 at 14:00, 1 tab at 18:00 and 1 tab close to midnight.

Main symptoms: Left side tremors, bradykinesia, fine motor skills problems, apathy, anxiety, swallowing problems.

Sinemet lifted the gloom and reduced all my symptoms, small tremors persist. Intolerance to stress persists.


#36 DanC33

DanC33

    Advanced Member

  • Members
  • PipPipPip
  • 123 posts
  • LocationFallon,NV

Posted 04 June 2014 - 07:42 AM

I am 45, DX Sept 2013. Have had symptoms for 10 years, dystonia/rigidity. I am in Nevada  Also have Lupus


YOPD and dystonia DX 2013  symptomatic for 15 years   25/100 Sinemet 5x daily  1mg Azilect  50/200 Sinemet CR at bedtime  Miralax 17mg  5mg Valium 3x daily


#37 RNwithPD

RNwithPD

    Advanced Member

  • Members
  • PipPipPip
  • 257 posts
  • LocationWest Tennessee

Posted 04 June 2014 - 06:24 PM

I'm right here.  Where are you?  :mrgreen:


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


#38 afroney

afroney

    Advanced Member

  • Members
  • PipPipPip
  • 253 posts

Posted 04 June 2014 - 08:06 PM

Just turned 29. Diagnosed at 27. Symptoms started at 21. I'm in Eastern Iowa.

#39 Annikin

Annikin

    Advanced Member

  • Members
  • PipPipPip
  • 371 posts
  • LocationCentral Florida

Posted 05 June 2014 - 12:54 AM

Afoney- what was the first symptom you noticed?



#40 afroney

afroney

    Advanced Member

  • Members
  • PipPipPip
  • 253 posts

Posted 05 June 2014 - 08:39 AM

Afoney- what was the first symptom you noticed?


REM Sleep behavior Disorder. Kicking punching and yelling in my sleep. Id wake up with a hole in the wall and bleeding knuckles. Insomnia was becoming an issue too.





Also tagged with one or more of these keywords: Location, state, YOPD, under 50, region

0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users