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Don't care what stage I am


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#1 Oakman

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Posted 10 March 2014 - 09:16 PM

Occasionally someone wants to know what stage of PD I am in. I don't know and don't care to know. A nurse at my wife's doctor office thought this was very strange. Am I missing something? What are the advantages of rating the degree of Parkinson's?



#2 Gardener

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Posted 11 March 2014 - 09:59 AM

I suppose, that in early stage there are more life style changes you can make that will help with functioning.  Also, it is my understanding that, for most people, early stage is longer and as you move to higher stages, the progression may go faster.  Other than that (and possibly to plan for future issues such as financial and care, I can't think of many reasons why the stage is important to know.


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


#3 lu states

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Posted 12 March 2014 - 01:20 PM

who knows ?   the various symptoms are so widespread, and come on differently for different people, the whole thing is a mystery.   i had symptoms for 10 years before it was obvious something was wrong.   i think " what stage " is the very odd question....and un-answerable in my opinion, until you are very advanced.   who knows when that will be ???      lu



#4 Beau's Mom

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Posted 12 March 2014 - 04:48 PM

Perhaps it is used to determine eligibility for things like walkers, electric wheelchairs, hospital beds, etc. by insurance companies. Or maybe it's a way for doctors to talk to each other about a patient with fewer words and symptom description. I don't find it all that helpful to ask myself. I simply ask myself if I'm happy each day, do whatever I can to be happy, and let it go at that! :D 

 

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.


#5 afroney

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Posted 13 March 2014 - 10:05 PM

Perhaps it is used to determine eligibility for things like walkers, electric wheelchairs, hospital beds, etc. by insurance companies. Or maybe it's a way for doctors to talk to each other about a patient with fewer words and symptom description. I don't find it all that helpful to ask myself. I simply ask myself if I'm happy each day, do whatever I can to be happy, and let it go at that! :D

Dianne


Social Security uses it for determining if you are disabled.

#6 blw

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Posted 25 March 2014 - 06:43 AM

It is hard to evaluate whist level you are a at.For me the progression is slow right now.I am a prayer person-try to be positive-eat right-some Physical activity and lots of vitamins.This is the hardest thing I have ever done.Will keep going til I no longer can.

#7 RNwithPD

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Posted 25 March 2014 - 11:33 AM

While it is necessary to have scales to rate PD symptoms for scientific study, I believe that PD is too complex and too personal of a disease to really compare one patient with another.  There are a couple of different scales one could go by, but each one fails to take into account the experience of the patient. Only the PWP truly understands how the disease is affecting them.  I could be a Stage II on the Hoehn and Yahr scale when I'm off of my meds, but be a Stage I when I'm on.  I could be a Stage II, yet my fatigue that is unseen is totally disabling.  Another person could be a Stage II and still feel pretty good and be able to work.  So rating scales don't truly reflect the condition and experience of the patient and are pretty much irrelevant in my opinion.

 

Kevin


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





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