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teacher0707

YOPD Facts

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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.

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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

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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

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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

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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

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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.

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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

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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

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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
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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
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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?

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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.

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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

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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-dictionary.thefreedictionary.com/pill-rolling+tremor

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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

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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?

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I was out in the living room humming Sound of Music and my husband had to come see if I was alright....  Is that a commentary on my singing?  I hope not. Maybe he's just concerned for my sanity since I've been out here for nearly 3 hours entertaining myself instead of sleeping. 

 

Musicman - I was diagnosed by DatScan as well, with tremors in my right hand and foot too.  I went in for diagnosis because I'd start shaking salt and just couldn't stop... then it would get more vigorous until the whole table was salted!  That was last April.  Started Azilect, currently 1MG.  Now I'm tremoring with the Azilect.  I'm seeing a new Neurologist that is an MDS at the end of the month and believe he'll move me up to a more aggressive medication regimen.  Supposedly he's part of a "Parkinsons Center of Excellence" group, so that should help.  I'm starting to rally the troops and get a "team" figured out since my symptoms are getting worse.  Unfortunately it's going to be a 2 hour jaunt every time I need to go to the Dr., or one of his "team". 

 

I used to hope I was misdiagnosed, but I don't think so anymore.  I have a very strong family PD history.  The Azilect helped remove any tremor at all for many months.  The symptoms match up with stuff I've had forever.  The best thing about catching onset early is that I can work really hard at doing some of the stuff I'm reasonably sure I won't be able to do later in my life.  I don't know how I got so blessed to find a Primary Care Doctor and then a General Neurologist that both had the good sense to listen, then look at me and say, "Parkinsons".  I feel so badly for people who struggled for years to get a diagnosis not knowing why they were getting progressively worse.  It's an unfair waste of precious time worrying rather than preparing yourself and your family.  At least I know what to blame. 

 

Hey... I'm finally almost done with the Christmas Stocking counted cross stitch I started 16 years ago when I was pregnant with my son!  I work diligently on it when I'm having a really good day.  I know that if I don't it may never get done... or I'll have to talk one of my friends into doing it... and they're not nearly as skilled at needlework as I am.  ;) 

 

Sorry, rambling...  I think I'll try bed again.  Good Night!

Keeper

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Musicman

Posted Yesterday, 01:24 PM

Yeah, Michael, I would say it kinda does that    
 
Thanks MM, I was thinking that maybe I had some weird tremor thing going......... At least I now know that I'm not the only one like this....lol      

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