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DPB

Describe how you feel to someone without Parkinson's

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DPB    0

I feel tired, weak, stiff, shaky, anxious, sick to my stomach, sore, dizzy, fuzzy headed, depressed ........... all in the course of a day or even over a 4 hour block of time some days. Where I am located in terms of my 3 hour medication cycle determines what state I am in at any given moment. If I take the meds on an empty stomach or just consumed protein; if I only got 3 hours of sleep last night, if my work day started off stressful; these all change the game. Weirdly, some days I feel and act pretty normal (Parkinson's standards). Sometimes I'll say "I wish you could experience this for one day", then I catch myself and apoligize saying "I don't wish this on anyone".

 

The challenge is that all of us with Parkinsons are at different stages and even then, everyone experiences the symptoms differently.

 

How do you describe our world to someone without Parkinson's?

 

If a friend, family member or stranger really wants to understand how this disease effects us, what is the most effective way to convey our experiences without completely overwhelming them?

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PatriotM    806

My PD day starts out with being unable to sleep more than 3 hours continuously.  As morning approaches, I get increasingly stiff and my back becomes increasingly painful.  If I'm lucky, I'll wake up at 6am (if I'm not 4am or 5am).  Once awake, it is difficult to roll over and get out of bed.  Once standing up, I often have shooting pain in my back, which makes it difficult to stand.  I have to sit down to put on my pants and socks or risk falling into a wall.  After taking my first few steps, I have to remind myself that I didn't just turn 100, because I feel like I'm 100 years old.

 

My first priority after getting up is to take my Mirapex.  Many days, I'll wake up with a SEVERE headache and stiff neck.  The pain radiates down into my chest and I'm also nauseous.  On those days, I also immediately take an Imitrex. 

 

As the day proceeds, I usually begin to feel better, although I'm frequently battling severe fatigue.  My walking improves throughout the day provided I keep moving; the nausea typically disappears after mid-morning; and my severe headache and stiff neck slowly fade about an hour after taking my Imitrex.

 

By late afternoon, I am often experiencing severe fatigue and often take a nap.  By evening, I'm often still very fatigued and to the dismay of my wife, I'll fall asleep by 9pm, only to be wide awake by midnight.  Fragmented sleep continues throughout the night and the whole cycle starts over again.

 

That's my PD experience.  It's not pleasant, but it could be a lot worse.

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Annikin    154

Physically, I am the tin man, stiff and slow, and I no longer sleep. When I get nervous, excited, happy, sad or experience any type of emotion to any degree I shake on one side and feel like my blood sugar has dropped and as if I have been plugged into an electrical socket while my body hums. It hurts to move, it hurts not to move. It hurts to inhale and sometimes my neck is so stiff I cannot turn  my head for days, makes trying to fall asleep even more elusive.  I throw up as a side effect of my meds daily like a patient on chemo- strangely this is no longer the worst thing in my world Emotionally, I feel impossibly alone- that is the worst thing in my world.

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DPB    0

My PD day starts out with being unable to sleep more than 3 hours continuously.  As morning approaches, I get increasingly stiff and my back becomes increasingly painful.  If I'm lucky, I'll wake up at 6am (if I'm not 4am or 5am).  Once awake, it is difficult to roll over and get out of bed.  Once standing up, I often have shooting pain in my back, which makes it difficult to stand.  I have to sit down to put on my pants and socks or risk falling into a wall.  After taking my first few steps, I have to remind myself that I didn't just turn 100, because I feel like I'm 100 years old.

 

My first priority after getting up is to take my Mirapex.  Many days, I'll wake up with a SEVERE headache and stiff neck.  The pain radiates down into my chest and I'm also nauseous.  On those days, I also immediately take an Imitrex. 

 

As the day proceeds, I usually begin to feel better, although I'm frequently battling severe fatigue.  My walking improves throughout the day provided I keep moving; the nausea typically disappears after mid-morning; and my severe headache and stiff neck slowly fade about an hour after taking my Imitrex.

 

By late afternoon, I am often experiencing severe fatigue and often take a nap.  By evening, I'm often still very fatigued and to the dismay of my wife, I'll fall asleep by 9pm, only to be wide awake by midnight.  Fragmented sleep continues throughout the night and the whole cycle starts over again.

 

That's my PD experience.  It's not pleasant, but it could be a lot worse.

Sounds like you are really struggling. How old are you? how long since diagnosed? how many months/years have you been in your current condition?

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DPB    0

Physically, I am the tin man, stiff and slow, and I no longer sleep. When I get nervous, excited, happy, sad or experience any type of emotion to any degree I shake on one side and feel like my blood sugar has dropped and as if I have been plugged into an electrical socket while my body hums. It hurts to move, it hurts not to move. It hurts to inhale and sometimes my neck is so stiff I cannot turn  my head for days, makes trying to fall asleep even more elusive.  I throw up as a side effect of my meds daily like a patient on chemo- strangely this is no longer the worst thing in my world Emotionally, I feel impossibly alone- that is the worst thing in my world.

I am sorry that you are feeling this way; you described the symptoms well; I have much of the same so you are definitely not alone. How do we bring non-Parkinson's folks into our world? My wife really cares but complaining about the issues to her constantly is getting old. The first 10 years were fine; I exercised, had hobbies and really ignored my disease; I am no longer able to keep the positive attitude. I try to be optimestic but the actual disease is really setting in. I would love to have feedback from people who have very advanced symtoms and are still able to maintain a near normal existance.

 

 How old are you? how long since diagnosed? how many months/years have you been in your current condition?

 

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Beau's Mom    1,060

Hi, DPB,

 

I had YOPD for nearly 30 years before I was diagnosed. The symptoms in my late 20's were very slight tremor of my right hand, restless arms (before there was a term for even restless legs), and constipation. I never considered any of it worth talking to a doctor about. As time went on, depression hit, but was blamed on childhood abuse issues. I was the breadwinner and raised two kids during that time, much of it as a single mom. It's only been since 2007 that I brought up my increasing tremor to my doctor, but even then I wasn't even considering PD, and he never mentioned it. I knew nothing of it until I researched it at the time of my diagnosis. That means I missed all the worry about things getting worse over time. I also missed the golden opportunity those diagnosed at a younger age have to make beneficial, quality of life choices like exercise and eating right that might have kept me healthier longer than I was. I choose to see that a both a missed opportunity and a blessing, because I have been a worrier all my life until I found a 12 Step program that helped me to learn to accept what I cannot change and change the things I can.

 

Now, 3.5 years after diagnosis, I must use a walker or electric wheelchair. I have fallen and broken bones. My husband left me because he couldn't bear the sight of seeing me struggle. I am on a 2 hour cycle of carb/levo from 7:30 AM to 9:30 PM, with an ER dose to get me through the night. If I don't get meds for several hours, I can't move my body at all.

 

The best thing I did was to get immediately involved in this forum and face to face PD groups. There is great support in both places. People are willing to share their experience, strength and hope. Yes, hope, in the face a constantly progressing neurological disorder.

 

I've learned lots about the pain and misery of PD. In the beginning, that's all I focused on. I could not see myself as separate from my disease. I grew more depressed and irritable. Medication mistakes, quite severe, were made by an MDS that had my friends and family turning away from me in droves because of mania, which I had never experienced. I fought long and hard to control my disease, my circumstances, the people around me. I was powerless over all of that.

 

What I am not powerless over is my attitude and what I want the rest of my life (not just my body) to be like. I have re-prioritized. I want a restful, peaceful existence. I have that much of the time now because I am more focused on being happy than beating PD. I choose every moment of every day to release what I can't fix and stay as emotionally balanced as I can. Believe me, it seems paradoxical to find peace by giving up resistance, but it's what has worked for me.

 

There are a lot of groups for spouses and caregivers. On this website alone there is free literature covering most aspects, including how PD affects the entire family.

 

I find that the less I focus on the symptoms, the happier I am. I recently wrote a column for a local newspaper for PD awareness month in April. If you will private message me, I will be glad to give you the link. It addresses what I want my family to know about not just PD, but who I still am. Because I Still Am!!!

 

Dianne 

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bjenczyk    73

PatriotM, except for the headache you just described my day perfectly.  I had major trouble standing up this morning due to some pretty severe back pain.  Once I am up and moving it starts to loosen up and the pain isn't so bad, but those first few minutes are tough.  

 

You nailed it.

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Annikin    154

DPB- Ironically I am not  depressed- I feel alone because this illness  the YOPD version, isolates us because it is so rare. Except for folks on this forum , I do not even personally know anyone w/ PD let alone YOPD. None of my friends can relate and it is the big white elephant in the room for some I have told. I have chosen to maintain some sense of normalcy by not telling  most people I know- but that comes with  price and that means taking it on alone for as long as it will allow. Both my parents passed a few years ago (most of my friends can't even relate to that so we never talk about what that has been like) and I am single so my support system is very small no spouse or kids). Since I too do not want to complain to those who do support me as no one likes a Debbie Downer, I remain silent about what is happening to me but the PD gets louder every day if you know what I mean.

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afroney    124

My PD day starts out with being unable to sleep more than 3 hours continuously.  As morning approaches, I get increasingly stiff and my back becomes increasingly painful.  If I'm lucky, I'll wake up at 6am (if I'm not 4am or 5am).  Once awake, it is difficult to roll over and get out of bed.  Once standing up, I often have shooting pain in my back, which makes it difficult to stand.  I have to sit down to put on my pants and socks or risk falling into a wall.  After taking my first few steps, I have to remind myself that I didn't just turn 100, because I feel like I'm 100 years old.

 

My first priority after getting up is to take my Mirapex.  Many days, I'll wake up with a SEVERE headache and stiff neck.  The pain radiates down into my chest and I'm also nauseous.  On those days, I also immediately take an Imitrex. 

 

As the day proceeds, I usually begin to feel better, although I'm frequently battling severe fatigue.  My walking improves throughout the day provided I keep moving; the nausea typically disappears after mid-morning; and my severe headache and stiff neck slowly fade about an hour after taking my Imitrex.

 

By late afternoon, I am often experiencing severe fatigue and often take a nap.  By evening, I'm often still very fatigued and to the dismay of my wife, I'll fall asleep by 9pm, only to be wide awake by midnight.  Fragmented sleep continues throughout the night and the whole cycle starts over again.

 

That's my PD experience.  It's not pleasant, but it could be a lot worse.

That should be published in a book. Thats exactly how I feel.

 

Have you started Sinemet yet, Patriot? In my case, it blows Requip and Mirapex out of the water in terms of sypmtom relief.

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PatriotM    806

Afroney,

 

I haven't started Sinemet yet.  I think my neurologist is a believer in postponing starting Sinement as long as possible.

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dinnes    21

The first med I was prescribed is the Sinemet which I adjusted to quickly. I work and live much more comfortably. After 4 months of taking 3 a day I added one at bed time at the recommendation of my Neurologist. The one at bedtime keeps me more comfortable so I sleep so much better! It helps with the cramping muscles and therefore I have less pain. I feel like my symptoms are fairly manageable.

 

Sorry PatriotM if you have heard similar comments already. I am not able to tough it out and would not be keeping up with my life without the Sinemet.

 

The problem I'm struggling with still is the fatigue and sleepiness. I drink coffee throughout the day, but it's not enough. I'm worried about having to take a stimulant to keep alert enough at work. Along with this I have a demanding, not understanding family. We may be moving in the next 6 months-dread. 

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MarciaJ    267

My first neuro told me he thought I should wait to take meds till I could not function. The PD got so bad that I couldn't do anything. Pain everywhere. Could not eat without spilling half on floor. But it took five years to get to that point. We had moved and I started seeing a neuro here. The first med he gave me I felt like I had the flu all the time. Plus I fell going up the stairs at a restaurant . He switched me to another med. Mostly the side effects were gone. I still have problems like if I sit too long I get very stiff. I don't have much strength in legs or hands. At times I still have tremor in hands if stressed or not getting meds. I was told I am taking minimum meds. I walk stiffly at times and arms and legs get anxiety pains. Usually at night because I'm tired. It may be time to increase meds. My memory is shot and some I can remember better than others. I can't rely on it. If I'm telling a joke I may forget the punch line. Later remember it and tell it when everyone else had moved on to another subject. What a way to keep the conversation going.

 

Oops, I just dosed off. My finger had to wreck havoc here. Everyone else has trouble sleeping but I don't. Try writing a post or reading and there I go. Last week I couldn't sleep and drank hot chocolate which put me right to sleep. Next time I'll know to not drink in bed. Ha ha. I like laughing at my own jokes.

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jb49    653

Because I have Bradykinesia in my right arm, It is slow and doesn't respond well and my fingers are very slow to do things like buttons or zippers or get a dime from the bottom of my pocket.  Here in Canada, everyone has been cold after skating on an outdoor rink or sitting at a cold arena watching hockey or toughing it out ice fishing or working with small tools on a broke down snowmobile at midnite by the light of a flashlight.  I tell people who ask about my arm and hand that it is like trying to do something when your hand is numbingly cold and you are trying to get a tiny nut onto a bolt in a tight spot.  That sorta gives them an idea. 

 

Bottom line though is only a Parky knows how a Parky feels.

 

jb49

 

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old+slow    169

Seems like we all have very similar symptoms and you all discribe them very well. Actually.... I'm sitting in my recliner as we speak and am dreading getting up. After sitting awhile then try to get up, it takes me forever to be able to stand upright. It feels like I've been kicked by a horse in my back. Same thing when I get out of bed in the mornings.

 

I'm at the point that I need a daily planer for all the damn pills I have to take !

Take a pill for this, take a pill for that, you get the idea.

But in honesty, I also recently had a heart attack, so now I get to add all these pills to the ongoing list lol

 

To answer your question, I've stopped trying to explain what having PD is like. Most people don't have enough time and can't fully understand anyways. Those close to us understand and that's what matters to me.

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Ryan Jackson    11

So many of the statements above fit my own experiences. I shared this with my wife because she has heard me describe my PD in many of these same ways. Thanks to all for sharing.

 

My quick analogy I use to explain the discomfort associated with my PD to othes is as follows:

 

Imagine having a middle seat on a budget airline for a never ending, non-stop flight to nowhere and the seat belt sign never goes off. You are cramped, stiff, and uncomfortable. You feel the constant vibration of the engines in your core. You are itching to stand and stretch, even to just straighten your legs or make the shaking stop. But you can't.

 

Most can relate to that feeling of being so uncomfortable that you just want to scream. It is almost like claustrophobia, but instead of a confined space, you are stuck in a ever tightening body that refuses to relax.

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Doug    63

I think that it's not really possable to tell a nonparkie what it's like, the harder you try the more it gets tangeled in it's self. Not that people don't care but what you feel at this moment will change but you don't know when. Why somedays are off and taking your meds is a waste of effort, and the next day you take your meds and it's like flipping a switch to have a life. It still baffles and frustrates me to no end to be doing something like washing dishes or folding towels and in less than a minite I get shacking so bad it's not even possable to hang onto a towel let alone fold it, try describing that to someone. ARG as Charley Brown would say. So now it's my turn to try and pry myself out of the recliner make it up the steps and get into bed all before the sun comes up

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TexasTom    716

My quick analogy I use to explain the discomfort associated with my PD to othes is as follows:

 

Imagine having a middle seat on a budget airline for a never ending, non-stop flight to nowhere and the seat belt sign never goes off. You are cramped, stiff, and uncomfortable. You feel the constant vibration of the engines in your core. You are itching to stand and stretch, even to just straighten your legs or make the shaking stop. But you can't.

 

I like that description.

 

Somedays I'm great, other Days it feels like I've been in that plane for 24 hours.

 

Other day, at Costco, I did park on the far side of the lot.  Lone shopping cart just sitting there, yes I had my walker ready to go!  I always go for a cart, even for a few things. Cold weather and the dystonia fun in my legs (I love to stretch them by walking, but on cold days they are not moving well).  Got out of the car, just about ready to get the cart.  Someone runs past me, sees the loan cart, and snags it.  OK.  Another one a little ways up. Almost there, someone snags it, too!   Finally towards the front, and someone is being nice and takes in TWO carts.   I go to yell "leave me one"... but my voice was a whisper.

 

Finally made it into the store, got a cart, and I felt wiped out!  Between the 35F weather (rare for this part of Texas) and wind zapping me, I was pretty tired. No energy to remember to smile.  Got a few things (toilet paper & paper towel run... back wall in the store).  Made it back to the car, exhausted for that outing.  

 

MDS did agree having a Handicap Placard is a good thing on bad days.   Four days out of five, I'm moving pretty well.  Fifth day, of what joy to not have to use all my energy to run to the store.

 

So it is odd somedays I fell like I'm 30 years old, other days how did I wake up being 100 years old.    I'm 56... but still think I'm 18. :)

 

I always try to remain positive, and smile.  When I hurt, I do my deep breathing and focus on a warm sun.   MDS did have me bump up the sinemet. Still debating taking one at night. Currently adjusting to using a CPAP, and you really need three months to train your body to use that at night.  Also for the geek in me, fun to down load the SD card data and look at results on how I did sleeping.   If I have three months of data before increasing the bedtime sinement, it will give me pretty good data. 

 

Off to the Dentist this morning.  I hate the "you need to floss" lecture, but last check up my tremor was so much the joke was I did a decent job flossing!  I floss daily, but not always effective.

Edited by TexasTom

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Linda Garren    747

I like that description.

 

Somedays I'm great, other Days it feels like I've been in that plane for 24 hours.

 

Other day, at Costco, I did park on the far side of the lot.  Lone shopping cart just sitting there, yes I had my walker ready to go!  I always go for a cart, even for a few things. Cold weather and the dystonia fun in my legs (I love to stretch them by walking, but on cold days they are not moving well).  Got out of the car, just about ready to get the cart.  Someone runs past me, sees the loan cart, and snags it.  OK.  Another one a little ways up. Almost there, someone snags it, too!   Finally towards the front, and someone is being nice and takes in TWO carts.   I go to yell "leave me one"... but my voice was a whisper.  That sounds like a bad dream--each cart being whisked away shortly before you hobble over to reach it, and not being able to be heard since your voice comes out as a whisper.

 

Finally made it into the store, got a cart, and I felt wiped out!  Between the 35F weather (rare for this part of Texas) and wind zapping me, I was pretty tired. No energy to remember to smile.  Got a few things (toilet paper & paper towel run... back wall in the store).  Made it back to the car, exhausted for that outing.  Those huge box stores can do that do us, can't they. 

 

MDS did agree having a Handicap Placard is a good thing on bad days.   Four days out of five, I'm moving pretty well.  Fifth day, of what joy to not have to use all my energy to run to the store.

 

So it is odd somedays I fell like I'm 30 years old, other days how did I wake up being 100 years old.    I'm 56... but still think I'm 18. :)

 

I always try to remain positive, and smile.  When I hurt, I do my deep breathing and focus on a warm sun.   MDS did have me bump up the sinemet. Still debating taking one at night. Currently adjusting to using a CPAP, and you really need three months to train your body to use that at night.  Also for the geek in me, fun to down load the SD card data and look at results on how I did sleeping.   If I have three months of data before increasing the bedtime sinement, it will give me pretty good data.  That's great, Tom.  I'm a data person, too--like researching everything I can about things.  It should help you feel comfortable whichever way you go--more or less Sinemet.

 

Off to the Dentist this morning.  I hate the "you need to floss" lecture, but last check up my tremor was so much the joke was I did a decent job flossing!  I floss daily, but not always effective.

 

 

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lethe    199

"All Shook Up"

A well I bless my soul
What's wrong with me?
I'm itching like a man on a fuzzy tree
My friends say I'm actin' wild as a bug
I['m in love] i have PD
I'm all shook up
Mm mm oh, oh, yeah, yeah!

My hands are shaky and my knees are weak
I can't seem to stand on my own two feet
Who do you thank when you have such luck?
[i'm in love] I have PD
I'm all shook up
Mm mm oh, oh, yeah, yeah!

Please don't ask me what's on my mind
I'm a little mixed up, but I'm feelin' fine
When I'm near that girl that I love best
My heart beats so it scares me to death!

She touched my hand what a chill I got
Her lips are like a volcano that's hot
I'm proud to say she's my buttercup
[i'm in love] I have PD
I'm all shook up
Mm mm oh, oh, yeah, yeah!

My tongue get tied when I try to speak
My insides shake like a leaf on a tree
There's only one cure for this body of mine
That's to have the girl that I love so fine!

She touched my hand what a chill I got
Her lips are like a volcano that's hot
I'm proud to say she's my buttercup
[i'm in love] I have PD
I'm all shook up
Mm mm oh, oh, yeah, yeah!
Mm mm oh, oh, yeah, yeah!

I'm all shook up

 

 

Elvis....

 

 

 

 

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MusicMan    771

Afroney,

 

I haven't started Sinemet yet.  I think my neurologist is a believer in postponing starting Sinement as long as possible.

My MDS (Dr Okun) advised starting meds as soon as your symptoms start to negatively impact your life. He essentially said, "Why be miserable when you might get many years of a near-normal life"? Quite frankly, Patriot, you sound fairly miserable right now.

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PatriotM    806

My MDS (Dr Okun) advised starting meds as soon as your symptoms start to negatively impact your life. He essentially said, "Why be miserable when you might get many years of a near-normal life"? Quite frankly, Patriot, you sound fairly miserable right now.

My post above is from May 2014.  When I went back and read my post, I was surprised at how much my exercise program has changed the way I would describe things today.  

 

In short, my rigidity is significantly improved.  It's very difficult to be stiff/rigid when you're walking 8,000 to 10,000 steps a day.  The fatigue is still bad, but somewhat improved as compared to May.  My balance is poor, but the number of falls has decreased.  Tremor is somewhat worse than in May, but varies greatly depending on stress, cold, medication, etc.  

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Gardener    194

Patriot's description is almost exactly my experience (except for the headache) and I am on 700 mg of Sinemet.  I do get relief when my medication is at peak.  I need to walk more and will try Patriot's strategy instead of having my husband drop me off at the front of the store.

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Linda Garren    747

I feel tired, weak, stiff, shaky, anxious, sick to my stomach, sore, dizzy, fuzzy headed, depressed ........... all in the course of a day or even over a 4 hour block of time some days. Where I am located in terms of my 3 hour medication cycle determines what state I am in at any given moment. If I take the meds on an empty stomach or just consumed protein; if I only got 3 hours of sleep last night, if my work day started off stressful; these all change the game. Weirdly, some days I feel and act pretty normal (Parkinson's standards). Sometimes I'll say "I wish you could experience this for one day", then I catch myself and apoligize saying "I don't wish this on anyone".

 

The challenge is that all of us with Parkinsons are at different stages and even then, everyone experiences the symptoms differently.

 

How do you describe our world to someone without Parkinson's?

 

If a friend, family member or stranger really wants to understand how this disease effects us, what is the most effective way to convey our experiences without completely overwhelming them?

 

If someone really wants to know and is listening, I find it helpful to explain that dopamine is what helps the brain move muscles in the way we want them to move. I tell them that the problems are caused by low by dopamine by  the  time a patient gets dx'd, and so we can get slower, have profound fatigue, find it hard to do fine motor things like writing, begin having problems cognitively, and shake/have rigidity.  If they are still listening :-), I might go a little further, but usually I sense that is enough for them to take in.  Probably finding about three main categories that would cover most of these things would make it simpler for them to take in and remember. 

 

.

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Annemarcel    6

First of all its nice to find old posts that help me know I'm not isolated and alone in this parkie thing,  

 

I could copy almost everyone's description and paste it here.  Why some mornings it takes forever for meds to kick in is a mystery.  Is it my sleep (or lack thereof), what I ate last night or just PD being indiscriminate?

 

I rely on caffeine along with Sinement and Mirapex to keep me going through the day.  I'm sure the caffeine adds to my sleep problems but sometimes you have to choose.  Do I want to move now or sleep later?  And after years of experimenting on myself, I can't drink carbonated soft drinks without feeling deep muscle and joint pain in my back and legs.  Green tea and caffeine pills are ok.  Maybe its the phosphoric acid or food coloring   

 

I work hard to stay cheerful and remind myself that things could be a lot worse.  People seem to be amazed when I talk about PD because I treat it like an inconvenience.  But they don't usually see me when I'm off, or feeling discouraged because I'm slow or stiff or bone achingly fatigued. 

 

So my day is starting again and I'm waiting for things to kick in.  Dang.  I've got places to go and things to see.

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