Jump to content


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

yopd diagnosis


  • Please log in to reply
9 replies to this topic

#1 eloah

eloah

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 25 January 2013 - 01:31 AM

Hi all, I have been contemplating writing on here for the past 6 months. About time right?...lol.

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.

#2 Ken_S

Ken_S

    Advanced Member

  • Members
  • PipPipPip
  • 148 posts
  • LocationNorthwest Wisconsin (Lake Nebagamon)

Posted 25 January 2013 - 07:45 AM

Welcome aboard eloha.

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. :cool:

Improvise, Adapt and Overcome


#3 Vanillab1027

Vanillab1027

    Advanced Member

  • Members
  • PipPipPip
  • 166 posts
  • LocationJacksonville, FL

Posted 25 January 2013 - 11:28 AM

Welcome, eloah!



#4 Island Woman

Island Woman

    Advanced Member

  • Members
  • PipPipPip
  • 408 posts
  • LocationNewport RI

Posted 25 January 2013 - 12:13 PM

Welcome eloha, you're not alone...all of us have had some form of denial plus periods of being afraid but we come here knowing that we can vent our feelings and obtain great info.

Patricia

#5 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,813 posts
  • LocationSeattle, WA

Posted 25 January 2013 - 01:39 PM

Eloha, welcome. Denial is the first stage in the grief process, which eventually winds its way around to acceptance. You are absolutely on track to begin a healthy coping pattern for dealing with a YOPD diagnosis. You reached out and shared--keep up the good work!

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.


#6 Brad24

Brad24

    Advanced Member

  • Members
  • PipPipPip
  • 256 posts
  • LocationPA

Posted 25 January 2013 - 07:59 PM

Hi, I was DX'd at 41 ( 11 months ago) I also have two sons. One 2 1/2 and one 10 months. I can understand a lot of your concerns and denial. I still go through times when I wonder if it's a mistake DX then I get the tremor, cramping and dystonia in my left shoulder. This is a good forum to talk, ask questions and vent if you need to. I have been on the site since November and have found the other members to be caring, nonjudgmental and sympathetic. It is not like other non-related forums where people argue or start drama. This is a good place to learn and listen to others. You will see you are not alone. What I guess I am saying is we all may be from different areas of the world, have different occupations and financial status but we all have one thing in common and we all understand. Good luck with every thing and love those boys up every chance you get.

Edited by Brad24, 25 January 2013 - 08:03 PM.

DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#7 Drummergirl

Drummergirl

    Advanced Member

  • Members
  • PipPipPip
  • 432 posts
  • LocationWhite River Jct. Vermont

Posted 25 January 2013 - 08:22 PM

Welcome, I was dx at 35. I can't believe it has been 17 years. Stay positive, active, active, active and make the best of every day!

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.

#8 Luthersfaith

Luthersfaith

    Advanced Member

  • Members
  • PipPipPip
  • 891 posts
  • LocationIndiana

Posted 25 January 2013 - 08:40 PM

Howdy. Glad you decided to jump in. One day at a time.

"I have told you these things, so that in Me you may have [perfect] peace and confidence. In the world you have tribulation and trials and distress and frustration; but be of good cheer [take courage; be confident, certain, undaunted]! For I have overcome the world." - Jesus (John 16:33)

#9 Jenette

Jenette

    Advanced Member

  • Members
  • PipPipPip
  • 490 posts
  • LocationPennsylvania

Posted 30 January 2013 - 06:57 AM

Don't be afraid of LTD. I was diagnosed in 2010 and took 12 weeks of FMLA to get my body adjusted to the new medication and basically to rest. I went back to work half days first because, as you know, the fatigue is rough. I was an executive officer for a diversified financial institution and needless to say, my job was very stressfully. Giving it up was very hard because I busted my ass and earned that executive position having started at the company in an entry level position.

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?

#10 christie

christie

    Advanced Member

  • Members
  • PipPipPip
  • 754 posts

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).





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users