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#61 Beau's Mom

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Posted 04 June 2014 - 01:08 PM

Annikin, since my PD started on my right side, I had undiagnosed pain that felt like it was right under my ribs. Doctors treated me for IBS and did a lot of colonoscopies and endoscopies. It was only after I was diagnosed that I asked Dr. Okun about it, and he correctly identified it. I did notice that it did not seem to be related to what or when I ate. It hurt more when I was working in the kitchen, so perhaps that had something to do with the misdiagnosis. After the dishes were done, I would sit in the recli er and it would feel better.

 

Dianne


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.


#62 Annikin

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Posted 05 June 2014 - 01:00 AM

Dianne I suspect the issues I have inhaling and the bruised feeling under my ribs is PD related. I also have noticed some shortness of breath the last year. The last 2 weeks I have had unrelenting coughing- now if I hiccup I want to scream. This needs to stop since my defense is in 11 days and it is diffcult to talk with out a coughing fit. Any ideas?



#63 Beau's Mom

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Posted 05 June 2014 - 10:50 PM

Annikin, carbidopa/levodopa has always relieved it for me. I can't remember if you're taking that or not. Perhaps a relaxation exercise every day between now and the defense of your dissertation. My favorite one for pain relief is by Richard and Mary Maddox. It is one of over 40 on the Meditation Oasis CD or podcast. I downloaded Meditation Oasis from i-tunes, or you can check their website at www.meditationoasis.com.

 

Have you had a chest x-ray recently, or a swallow study? The coughing and hiccips can be signs of swallowing problems.

 

Dianne


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.


#64 Annikin

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Posted 06 June 2014 - 09:14 AM

Not recently-the Dr. thinks I had some reflux from an antibiotic (I suck with medications) they think burned my throat and is causing the coughing part. The hiccups are a side effect of the requip and aren't too often but more than before the meds..

 

 

My good news today (and you will all be envious)-  I SLEPT ALL NIGHT AND UNTIL 9AM  this morning. It felt AWESOME!  Why you ask? B/C I fell asleep without my requip on board. And yes I am stiff as a board this a.m., crampy, and typing with one finger but I feel refreshed for the first time in days.  Off to take my meds now and oil my joints- the Tinman needs her oil can if she is to finish Ch. 3.

 

 

Have a great day everyone, unless you've made other plans:) 



#65 Brad24

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Posted 06 June 2014 - 08:28 PM

I am jealous. I have not slept all night in months. I took requip for a while had to quit. I was not good for me at all. I would stay up all night cleaning house because of it. Good luck with your work. Keep up the good fight. Don't let PD keep you down and remember, " the less you do because of PD, the less you will want to do". Keep active and it will make you want to do more.
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."

#66 Annikin

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Posted 12 June 2014 - 06:02 PM

IDID IT! IDID IT! All 311 pages were submitted yesterday morning after pulling an almost all nighter- and I think I wrote the last fourteen pages in my sleep. I was so tired I was down to typing with one finger again. I wanted to call it quits so badly- But at 8 am yesterday morning I finished the entire draft, I then worked a full day- in a semi comatose state with what feels like a severe shoulder spasm, then  went home- cleaned up much of the mess I made, took care pf my critters, then laid down on the couch and slept for 13 hours!   My defense is Monday - now if I can get the tracheal spasms I seem to have developed for my Requip under control by then, I may just  make it! In light of the fact that talking makes me cough- I am not so worried about the shaking now- I've got bigger issues- 45 minutes of my defense followed by up to 2 brutal hours of questions, Dianne or anyone- any advice?  I had to start Sinemet this week  so I have regulating that on my plate as well.

Oh and I am in a pretty fragile state right not so unless  it is supportive please wait til after my defense. I really need  moral support ( and a kick ass outfit) until then.






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