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YOPD Facts


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#1 teacher0707

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Posted 01 February 2013 - 02:21 PM

Hey everyone,

I am running a road rally this summer with my YOPD support group to raise awareness and funds for research and to help patients in need in our area get the medication they need. What I was wondering was if any of you had any interesting facts about PD that we could use on our road rally. Or if you have any tasks that are difficult for you that we could easily have the participants reinact so they understand what we go through everyday. Thanks for all the help.

#2 Daven

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Posted 01 February 2013 - 04:45 PM

The hardest thing for me so far is overcoming the waves of extreme fatigue throughout the day. It really puts a damper on your day when you're trying to be productive at work.

Dave

#3 joy h

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Posted 02 February 2013 - 02:07 AM

exhaustion like i have never felt before. Some days the thought of showering and dressing seems like a Hugh task, I have grown weaker, thinking before acting, thinking ahead, organization, memory what i need to do where i put things, remembering appts, finding the right word, directions, where i parked the car, tremor makes walking tricky, cant multi task, sleep difficulties, speaking loud and clear, telling folks the same thing twice, cold, dystonia in my fingers, neck, ankles and feet, your way around store or mall, sequence of stops, tying shoes, buttons, weight loss, strange eye movements, dry mouth cause loads of problems. Sorry this is not organized it is how my brain listed it

#4 joy h

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Posted 02 February 2013 - 02:09 AM

I forgot to add I'm 53 and have never in my entire life felt this kind of exhaustion There are days when I have to call my home from drive and say im so exhausted [lease come help me undo my bed I need to lay down. Also falling asleep during the day

#5 Luthersfaith

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Posted 02 February 2013 - 07:40 AM

Parkinson Disease is a progressive neurological disorder that has debilitating effects on a persons ability to control voluntary movement.

Symptoms include: Tremor, Slowness of movement, Stiffness of muscles, Loss of balance, Speech & memory difficulties, Freezing and Falling, Along with other symptoms.

Parkinson's usually affects people over the age of 60.However, people with Parkinson's being diagnosed prior to 60 is on the rise.

Young Onset Parkinson's (under 55) accounts for approximately 15% of all Parkinson's Disease cases.

People with YOPD and their families face many challenges unique to their age.

Many are still working or just getting a career underway.Many have families with children under 18.

Most are still paying bills such as mortgages, child expenses, car payments, etc.

YOPD often forces patients & their families to face some very difficult decisions early in life, including long term health care, filing for disability, loss of career and income.

There is a need for support & education for people with YOPD and their families.

http://www.pdoutreach.org/yopd.html
"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)

#6 teacher0707

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Posted 02 February 2013 - 10:15 AM

I agree with you Joy I am 22 and have alot of the same issues. Thank you for the information. i am hoping that by raising awareness people like us won't be over looked or seen as scarry.

#7 Tmj

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Posted 03 February 2013 - 11:12 AM

I grew up watching The Sound of Music - my parents must have made us watch it at least 20 times. So for those of us that know the tune, here is my rendition of the song 'favorite things'.

SIGNS OF PD

Issues with memory and slowness of recall
Losses of balance and fears that I might fall
Problems with neurons that cause me to freeze
These are a few of the signs of PD

Neuro appointments and meds by the truckload
Shaking called tremor and voices of low tone
Cramping and stiffness that causes distress
These are the things we have more or less

Issues with sleeping and expressions of face
Dealing with drooling and slowness of pace
Confusion, depression, anxiety and stress
These are some things upon us that press

When fatigue strikes
When the leg drags
When I’m feeling bad
I simply remember that I have PD,
And that there are worse things to have

#8 bajansunbabe

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Posted 03 February 2013 - 12:19 PM

Awesome song Hokie! Put a smile on my face!

Deanna

#9 Beau's Mom

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Posted 03 February 2013 - 12:25 PM

Once I was able to recall the tune, it was very clearly a song I would love to sing!!!! Thank you.
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#10 RNwithPD

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Posted 09 February 2013 - 05:23 AM

Interesting PD fact: 20-30% (depending on which source you reference) of all PD patients do not have a tremor. In fact, tremor is not necessary for diagnosis.

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet 2-tabs every 4 hrs (800-1000mg levodopa daily); Amantadine 100 mg 3 times/day; Primidone 50 mg 3 times/day; gabapentin 200 mg 3 times/day; Klonopin 1 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


#11 christie

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Posted 09 February 2013 - 07:00 AM

Interesting PD fact: 20-30% (depending on which source you reference) of all PD patients do not have a tremor. In fact, tremor is not necessary for diagnosis.

Kevin


interesting indeed...of all four cardinal clinical features of parkinson's (rest tremor, rigidity, bradykinesia and postural instability), bradykinesia is the most specific for PD and absolutely essential for diagnosis. in the absence of true bradykinesia (with reduction of both speed and amplitude, fatiguing and arrests of repetitive movements) the diagnosis of PD cannot be established, even if all the remaining features are present.

Edited by christie, 09 February 2013 - 07:01 AM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#12 graflexmaster

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Posted 12 September 2014 - 06:44 AM

Tmj

Posted 03 February 2013 - 09:12 AM

I grew up watching The Sound of Music - my parents must have made us watch it at least 20 times. So for those of us that know the tune, here is my rendition of the song 'favorite things'.

SIGNS OF PD

Issues with memory and slowness of recall
Losses of balance and fears that I might fall
Problems with neurons that cause me to freeze
These are a few of the signs of PD

Neuro appointments and meds by the truckload
Shaking called tremor and voices of low tone
Cramping and stiffness that causes distress
These are the things we have more or less

Issues with sleeping and expressions of face
Dealing with drooling and slowness of pace
Confusion, depression, anxiety and stress
These are some things upon us that press

When fatigue strikes
When the leg drags
When I’m feeling bad
I simply remember that I have PD,
And that there are worse things to have          
 

 

I love this re-write of a wonderful song........ it describes us oh so well........ and needed re-posting


Edited by graflexmaster, 12 September 2014 - 06:46 AM.

Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#13 musicman

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Posted 12 September 2014 - 07:01 AM

interesting indeed...of all four cardinal clinical features of parkinson's (rest tremor, rigidity, bradykinesia and postural instability), bradykinesia is the most specific for PD and absolutely essential for diagnosis. in the absence of true bradykinesia (with reduction of both speed and amplitude, fatiguing and arrests of repetitive movements) the diagnosis of PD cannot be established, even if all the remaining features are present.

So, what you are saying is that I, with just a resting tremor, could easily have been misdiagnosed?

Age 58. Diagnosed 7/14 by a DatScan. Currently only display a right hand/arm tremor. Beginning Azilect 8/6/2014


#14 graflexmaster

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Posted 12 September 2014 - 07:38 AM

I would say MM, that yes, you very well could have. Then you would have been stuck in the horrible limbo that many others have been dwelling in.


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#15 christie

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Posted 12 September 2014 - 08:17 AM

So, what you are saying is that I, with just a resting tremor, could easily have been misdiagnosed?

 

Not necessarily. Most likely you do have some subtle bradykinesia, which may not be clinically evident to you but still demonstrable on physical examination.


-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#16 musicman

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Posted 12 September 2014 - 10:25 AM

Actually, the only other sign I showed (according to the dr) was a "slight cogwheeling in the right wrist". But I guess with the DaTscan, the tremor, and the slight cogwheeling, there's probably not much doubt. Still, it raises questions....

Edited by musicman, 12 September 2014 - 10:25 AM.

Age 58. Diagnosed 7/14 by a DatScan. Currently only display a right hand/arm tremor. Beginning Azilect 8/6/2014


#17 young_dad

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Posted 12 September 2014 - 11:30 AM

Also, there are many types of tremor, not all of which would indicate PD.  I started with a pill-rolling tremor (which I had when I first saw my MDS and she identified almost immediately.

 

tremor /trem·or/ (trem´er) an involuntary trembling or quivering.

action tremor  rhythmic, oscillatory, involuntary movements of the outstretched upper limb; it may also affect the voice and other parts.
coarse tremor  one in which the vibrations are slow.
essential tremor  a hereditary tremor with onset usually at about 50 years of age, beginning with a fine rapid tremor of the hands, followed by tremor of the head, tongue, limbs, and trunk.
fine tremor  one in which the vibrations are rapid.
flapping tremor  asterixis.
intention tremor  action t.
parkinsonian tremor  the resting tremor seen with parkinsonism, consisting of slow regular movements of the hands and sometimes the legs, neck, face, or jaw; it typically stops upon voluntary movement of the part and is intensifiedby stimuli such as cold, fatigue, and strong emotions.
physiologic tremor  a rapid tremor of extremely low amplitude found in the legs and sometimes the neck or face of normal individuals; it may become accentuated and visible under certain conditions.
pill-rolling tremor  a parkinsonian tremor of the hand consisting of flexion and extension of the fingers in connection with adduction and abduction of the thumb.
resting tremor  tremor occurring in a relaxed and supported limb or other bodily part; it is sometimes abnormal, as in parkinsonism.
senile tremor  that due to the infirmities of old age.
volitional tremor  action t.
 

http://medical-dicti...-rolling tremor



#18 musicman

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Posted 12 September 2014 - 01:03 PM

well I definitely don't have a "rolling" tremor. Mine is more like the flapping type, like if you're trying to signal to someone that you're on the phone and someone is yacking on the other end, on and on...
It can get quite violent

Age 58. Diagnosed 7/14 by a DatScan. Currently only display a right hand/arm tremor. Beginning Azilect 8/6/2014


#19 graflexmaster

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Posted 12 September 2014 - 03:04 PM

Gee MM, does that mean you can't do the "princess wave"?? Well neither can I, because my hands/fingers flap like yours......lol I could slap someone silly though........

 

Hey? on a more serious note, if you try to stop it by closing your hand, does it migrate into your lower arm? with a twisting motion, like as if you were twisting a screwdriver back and forth?


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#20 musicman

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Posted 12 September 2014 - 03:24 PM

Yeah, Michael, I would say it kinda does that

Age 58. Diagnosed 7/14 by a DatScan. Currently only display a right hand/arm tremor. Beginning Azilect 8/6/2014





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