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DaynaE

Actual Parkinson's Diagnosis now

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DaynaE    6

Hope everyone is doing well. Well, I was expecting this and it happened... I was diagnosed with Parkinson's.

 

My MRI was clear, but the Neuro said he expected that. He just wanted to rule out stroke, tumor, etc. He diagnosed me with Parkinson's, upped my Requip to 2mg per day with Extended Release tablet, and referred me for physical therapy for 3 times per week for 1 month.

 

My pharmacy said the insurance company has to approve the XR tablet, and I have not obtained that approval yet.

 

I also attended my first yUHr Move class at the local Hospital Healthplex. This class is Tuesdays & Thursdays and is provided FREE courtesy of Movers & Shakers Against Parkinson's of my County. It is for anyone with a movement disorder. So glad to have this class available to me.

 

I begin my first physical therapy session tomorrow at the same Healthplex, and will be seeing the same therapist that normally does the free class. Since I have only 30 PT sessions per year, I was thinking about maybe asking the therapist if the two free classes are similar to PT. If yes, could possibly do one PT session per week (and the two free classes) to extend the sessions to 7 months instead of 4 weeks.

 

I am also doing Silver Sneakers fitness classes M-W-F and Aqua Fit T-Th afternoons at the YMCA. I plan to do the free classes in the morning on T-Th and Aqua in the afternoon. Busy schedule!!!

 

I just started Ashwagandha as well. Who is taking it and what is your optimal dose? I see anywhere from 450mg to 6,000mg per day... very wide range!

 

Hope everyone has a great day! :)

 

Dayna

Edited by DaynaE

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DaynaE    6

I was just diagnosed with PD, and had my first Physical Therapy appointment today.

The PT did an assessment and I scored 42 out of 56 on the Berg Balance scale.

 

Interpretation:​

41-56 =​ independent

​21-40 = walking with assistance

​0 –20 = wheelchair bound

 

So, I scored on the low end of independent. Although I was just seen by my

Neurologist January 25, 2017 and Diagnosed February 24th, many of my

non-motor symptoms go back years, and I have been able to document my

hand and leg tremors going back three years, based on old Facebook posts.

 

My job is a server in a chain restaurant where we also have to dance every hour

for a short period. My ability to dance, and especially do a 360 turn (impossible

at this point, without falling) is extremely hindered. My hands have problems

grasping things, and separating paper napkins to lay on the table for drinks. I

have trouble carrying plates and trays, get dizzy while carrying large trays of food,

and I am concerned I will no longer be able to do my job efficiently within the

next year. I am 51 years of age and have been a server for 8-1/2 years. I was in

an office environment prior to that, before being downsized. I have no college education

and no real other job prospects I can see at my age that would not require me on my

feet and moving around a lot.

 

A friend said I should attempt to file for disability now, even though I am still working.

I am not sure if that would be the correct thing to do or not. However, I fear my PD is

farther long than most who have been just diagnosed, based on my symptoms

(38 total now and counting), severity of mobility issues and dizziness, as well as the poor

score on the PT test. I honestly see myself at Stage 3 based on all that. The movement

issues have gotten extremely worse since last June. Especially with my abilty to do the

foot moves required in the line dances at work.... songs I could dance to three years ago are

next to impossible to do now, and my thinking, memory and other brain difficulties are also

greatly affecting my work. Any guidance would be appreciated. Thank you.

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PatriotM    800

The purpose of the physical therapy is to improve. The score of 42 that you had at your initial appointment certainly shouldn't be your score when you finish physical therapy. Furthermore, the physical therapist should show you how to do the exercises at home. You should not continuously be in physical therapy.

 

It takes years (decades) for the increasing loss of dopamine to cause symptoms that can be diagnosed as PD. Almost everyone has symptoms for years before they are diagnosed. I was diagnosed in 2013. I probably fell over 100 times in 2014, including more than a dozen times on one particular day that I remember vividly. After a lot of work and practice on balance, I very rarely fall today. You can and should dramatically improve with physical therapy, exercise, and practice.

 

I saw my MDS in November. He wanted me to see a neuro physical therapist and speech therapist. I saw them both for probably a month and am now doing the exercises they suggested at home, along with all the other exercises I already do. In particular, I was having a frequent problem with choking when relaxing. I had one incident when I choked so badly that I almost passed out. The speech therapist stuck a camera in the back of my throat and discovered that my vocal cords are badly bowed (instead of being parallel which is normal). They trained me on specific exercises to correct the problem and I've only had one relatively minor choking episode since. I must do these exercises every day at home if I expect the results to last.

 

The point of this post is to say that you should get significantly better than you are now.

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Beau's Mom    1,053

During my initial PT in 2011, I regained my arm swing, which had been gone for over 15 years. My balance improved and my stamina improved. I wouldn't worry too much about any particular score. A score only reflects function at one moment in time. My abilities can change hour by hour. Getting started right away with PT is smart.

 

Dianne

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BillBRNC    25

I'm starting something called Big and it is paid via Medicare as I'm 66. I have decided not to start until after I get the Sinemet balanced out for my situation, so it might be another month before I start. I did take two starter classes, which were sufficient to convince me that it couldn't hurt and could only help. Balance will be a big issue for me, as I have fallen a few times. Bill.

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LAD    202

Keep doing the dancing! My MDS recommended it. My husband & I have been taking ballroom for 2 years. I move so much better with music playing. And keep exercising- I do the PWR4life program.

Edited by LAD

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