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Where are you?

Location state YOPD under 50 region

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#1 BrianT

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Posted 27 November 2013 - 11:48 PM

Where are us YOPD people located? We know there are few of us (%). Us YOPD operate differently the our older peers. We think the needs we have are different. Perhaps some regional or growth to YOPD support groups will be the outcome of my question.

btw - Grand Rapids, Michigan (4/29/2011).

#2 joy h

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Posted 28 November 2013 - 12:11 AM

54 diagnosed 2011 but had tremors at age 22. Rockville va

#3 Beau's Mom

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Posted 28 November 2013 - 01:36 AM

60, diagnosed at 57, first symptoms age 26ish. Seattle, WA where I facilitate a YOPD support group. Two newcomers to next week's meeting are a nurse and a neuropsychologist.


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.


#4 sarahjo

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Posted 28 November 2013 - 02:49 AM

45, dx august 2013 started having symptoms in early 30, but started looking for answers in 2005, Pismo Beach area, Ca.



#5 Daven

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Posted 28 November 2013 - 04:04 PM

52, dx April 2013.  My first symptoms was no arm swing when I was 49.  I'm from Aldie Virginia starting this coming Saturday.

 

Dave



#6 Beau's Mom

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Posted 28 November 2013 - 07:40 PM

Sarajo, when I was forcibly retired due to PD, I took my lifelong dream trip up the California and Oregon coasts to my home state of Washington. We stayed at an RV park in Pismo Beach and had nectarine pie. We walked our Yorkie Beau on the beach. It was his first view of the Pacific Ocean. I don't guess Bugs Bunny ever made it there, although, like him, we went through Albuquerque! Forgive me if it doesn't make sense.


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.


#7 Donald Ennis

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Posted 28 November 2013 - 08:06 PM

42, Tampa FL, I was diagnosed earlier this year, (April 2013) I am the 3rd one in my family  with PD



#8 sarahjo

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Posted 29 November 2013 - 03:24 AM

dianne perfect sense..i remember the cartoons.  yes i am very blessed



#9 CynthiaM

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Posted 29 November 2013 - 03:49 AM

50, Diagnosed 3/2011, first symptoms 1999. I live in Arkansas. First one in my family with PD.


Life isn't about waiting for the storm to pass......It's about learning to dance in the rain.

#10 lu states

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Posted 29 November 2013 - 04:04 PM

not young, now 64, diagnosed at 63 this spring...... BUT,  had left hand tremor at 40, both hands by 45, and everything growing from then until lost my job august 2012.  my parents died young, so don't know if i would be the first diagnosed or not.  i lived in san francisco 45 years, but after losing my job, moved two hours north ( heard of rents in S.F. ?   worse than you have read ) to a little hill on the russian river called monte rio.



#11 young_dad

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Posted 06 December 2013 - 12:28 PM

42 now, diagnosed in 1/2006 at 34 with first symptoms at 32 (right thumb tremor).  I live in San Diego, CA.  I am the only one in my family with PD.



#12 Drummergirl

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Posted 07 December 2013 - 11:06 PM

53 now, dx at 34, Had motor symptoms at 31. no family history. Resting tremor in my legs.
I am a native Vermonter, still reside in hometown and work for school district I attended.
Karen

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.

#13 noah

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Posted 08 December 2013 - 11:49 AM

It's encouraging to see someone who has pd so ling and is still working:)

#14 Rogerstar1

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Posted 08 December 2013 - 12:58 PM

...and, based on her many posts, does so with such grace.



#15 Drummergirl

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Posted 09 December 2013 - 05:59 PM

Thank you Rogerstar1.
Karen

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.

#16 noah

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Posted 12 December 2013 - 04:22 PM

Anyone from central New York.?

#17 redsox34john

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Posted 12 December 2013 - 08:23 PM

40 was Diagnosed when I was 39 

Central Fl My Grandfather, and Uncle both had PD!! Good to meet you all 



#18 newbob10

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Posted 13 December 2013 - 04:25 AM

48, diagnosed at 47. Architect/HR director in Milwaukee, WI. Grateful to have mild enough symptoms that I continue to work at relatively full strength. Exercise is my best medicine.

#19 Beau's Mom

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Posted 13 December 2013 - 12:59 PM

Hi newbob! Nice to hear from you! jb was asking after you in the Good Morning forum, but of course I can't remember whether or not you've already responded there!


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.


#20 BrianT

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Posted 14 December 2013 - 10:38 PM

Thanks everyone!







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