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Top of the Afternoon


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#1 redsox34john

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Posted 12 December 2013 - 11:54 AM

:razz:

 

Hello everyone, 

 

My name is John and I am originally from the Green Isle. Ireland now living in the states. I was diagnosed with PD this yr, and was re-confirmed the other Day by Dr. Okun he is wonderful.. I am new to the forums, my visit with Dr. Okun was wonderful first thing he said that I was undermedicated, so he fixed that right away. My tremor is in my right hand, I already have big time balance issues, and walking sleep is horrible he gave me some thing for that too,

 

I take 2.5 Carbidopa/Levodopa 25/100 every 4 hrs and now 1mg Azilect.. So I am hoping this makes things easier. I hope that I can meet some new friends on here, I have an Orlando Young Parkinson's Page on FB we here in Central Fl are many but not too many will want to meet up, the Support group I attend the youngest there is 56, I just turned 40 last month. This is something that I look at as a obstacle and I stay positive as much as I can. I have been looking for a wristband similiar to the Breast cancer ones for Parkinson's but I can not find any, Does and know of one out there.

 

Well That's all for now

 

John


Edited by redsox34john, 12 December 2013 - 12:04 PM.


#2 Beau's Mom

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Posted 12 December 2013 - 07:12 PM

Welcome, Irish John turned Floridian. You are currently in the warmest spot in the whole US! You are a lucky, lucky man to have seen Dr. Okun in person and to live in the warmth. Come summer, you might want to visit Seattle, which is where famous American author Mark Twain said he spent the nicest winter he'd ever had during a summer in Seattle! I

 

There is much experience, strength and hope here. Feel free to avail yourself of it. Also feel free to gripe or complain about what PD does to your life when you need to. There isn't a one among us who hasn't already done it!


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.


#3 redsox34john

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Posted 12 December 2013 - 08:07 PM

Welcome, Irish John turned Floridian. You are currently in the warmest spot in the whole US! You are a lucky, lucky man to have seen Dr. Okun in person and to live in the warmth. Come summer, you might want to visit Seattle, which is where famous American author Mark Twain said he spent the nicest winter he'd ever had during a summer in Seattle! I

 

There is much experience, strength and hope here. Feel free to avail yourself of it. Also feel free to gripe or complain about what PD does to your life when you need to. There isn't a one among us who hasn't already done it!

Thanks So Much DIanne, I really appreciate the Warm Welcome, Yes Dr. Okun really cares about his patients and he takes his time listening to you. 

 

Seattle is a place that is actually on my Bucket list to do. :) one of these days, Yeah Florida missed the memo on WInter lol I hate to complain but I do have my bad days.

 

Happy Holidays By the way!!



#4 Annikin

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Posted 14 December 2013 - 07:48 PM

Hi John-  I am  also person w/ YOPD living in Central Florida  ( I was diagnosed last year at 46 but I can track symptoms back to about 37 yrs old) as well so you are not alone in the sunshine state. Since so many older folks retire here PD support groups tend to be mostly seniors  and not necessarily what you might be looking for in a support group. But we are here for you. Welcome and enjoy the winter! 

BTW- I saw PD bracelets on the Parkinson's Disease Foundations website in their store.



#5 redsox34john

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Posted 15 December 2013 - 09:53 AM

Hi John-  I am  also person w/ YOPD living in Central Florida  ( I was diagnosed last year at 46 but I can track symptoms back to about 37 yrs old) as well so you are not alone in the sunshine state. Since so many older folks retire here PD support groups tend to be mostly seniors  and not necessarily what you might be looking for in a support group. But we are here for you. Welcome and enjoy the winter! 

BTW- I saw PD bracelets on the Parkinson's Disease Foundations website in their store.

Top of the Morning Annikin.. Love the name and the Movie...

Thanks so much for the welcome I am so new to this talking about it with other people. I appreciate the support so far, the youngest member in our Orlando Group is 52 he is a good guy. I would love for Central FL to have a Young Parkinson's conference to where we can attend and meet one another and get a support group started up. Thanks for the Tip on the bracelets I will check them out. I look forward to meeting many people who share the same thing I have, I know I am not alone in this and I am a great listener as well when my memory is there lol...

 

Have a wonderful Day!!  :razz:






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