I decided last night what needs to happen.

People can understand what is is like to be blind by having their vision cut off for 24-hours or so...dark glasses, something wrapped around the head, etc.

People can understand about being obese by wearing a costume and going out onto the street.

There are many other examples

What we need is a magic wand to cause hospital personnel to have Stage 3 or above PD for 24 hours with meds, and another 24 hours without meds. Maybe then they would realize how uncomfortable and painful it can be to have PD, allowing them to find the empathy that we need.

The part I hate the most is the, "you are too young"...heck I'm 58..."are you okay," when you can only shuffle a little bit..."are you nervous" when your tremor is really bad...do I look okay, NO...or (as Paula drew the picture a couple of months ago) just totally ignore it as though it isn't important.

After being sick for 12 hours and not being able to take meds, then 9 hours in the ER...I would have given away my lottery winnings for a Sinemet and a Mirapex. While I had assistance to sit up on the bed in the ER, get my legs off the bed to stand up and "run" to the bathroom, etc...LOL...that was as far as it went.

How awesome it would be to hear, "let's get you feeling better so you can take you meds"

open the hospital room window.
tie the sheets together and dangle them out of he window.
hit the call button 20 times fast.
hide and watch the fun.

uh...wait...don't do that...
but you can think about it.

michael b.

Carolyn,

I'm sitting here thinking 'where's Carolyn ?"as we do seem to have some uplifts today...and then I read this. Where are you now?

Paula

Too funny Michael!!

Paula, I am home, but get this one. Medicare Part D is such a wonderful things...NOT! I am far from well, but at least I am home and no longer on that damnable, uncomfortable gurney!

The doc rx'd a strong anti-nausea...keep in mind that the rx was written by an ER doctor on a hospital rx form. At noon today I dropped the rx off at the pharm. At 6pm, I found the energy once again to go out and pick up the rx.

Pharmacy..."The insurance company (my Part D plan) WON'T allow the rx to be filled without verbal authorization from the doctor."

Excuse me...isn't the fact that the doc is from the ER and the hospital RX form enough!!

So I said, how about a generic I pay for myself.
Yes, that is available, but even the generic is very expensive. That was kind of the Pharmacist to tell me that...there is still thoughtful people.

So...since Gettysburg is a small city due to the encroachment of the battlefields all around...I drive the two blocks to the hospital to ask that the doctor call the damnable insurance company. Even the doctor didn't know what to do, so I have to return with my formulary.

Besides, the TV commercial says that Part D is so wonderful that 90% of all eligable are enrolled. Goodness, I thought they were enrolled because Medicare is changing a retroactive penalty if you don't enroll...silly me...surely the TV commercial is right. I mean the people in the advertisement are so healthy and have such fun picniking in the countryside and parks.

Goodness...you would think that our fantastic Medicare would have insisted that all insurance companies use the SAME formulary.

Where is my head......must be in the clouds. Certainly a regular citizen wouldn't have the ability to figure this one out! So, I must be wrong about using the same formulary.

I don't sound cynical do I. Oops, how unkind of me!

FYI - I take my formulary with me when I suspect a new medication may be rx'ed, but I didn't think to do that last night since I could barely move and was "sick as a dog." Heck at one point it took me five minutes to figure out how to get out of my bed, and then many minutes to get out of the bed I think I am having a hard time getting rid of this c*** because I have three other infections going on right now.

I just love living alone with PD

I like Michael's idea.

I've talked about this a lot with friends. With PD, nothing BLEEDS. There's no swelling. No BONE sticking out. It's all in the brain.

"But you're so young!"

"But you LOOK OK."

"I get an occasional twitch, too!"

"Are you drunk?"

"You look ******. What's wrong?"

If they don't have it, they don't understand it, and we waste energy when we get frustrated with them. We know. And we take care of ourselves.

How can people understand what it means to have PD when even those who love us most don't really get it?

A great example involves my best friend who I've known for 34 years now. She and her husband came to my house last summer to pick me up to go to dinner followed by a concert. As often happens when I'm trying to get somewhere on time, I was in a royal state of "off" and wasn't ready to go when they arrived. Watching me struggle for several minutes, trying to tie my shoe, my friend finally asked if I wanted help. I joked that "only if she wanted to make it to the concert that night!" So, she tied my shoe and off we went. Later that night, noticing that my shoe was untied again, she asked me if I wanted her to tie it. I told her "no thanks" and with the expertise developed over 40+ years of shoe tying, I swiftly re-tied my shoe. She looked at her husband in total shock and said "She couldn't do that - at all - three hours ago!"

She knows I have good days and bad days, good hours and bad hours. But I guess she just hadn't really grasped before the wide swing I can have in my abilities from one moment to the next.

If someone who's known me for 34 years, someone totally close to me without actually living with me, if someone like that doesn't truly grasp what PD does to me, how can we expect total strangers to? PD is shaking to the general population, shaking done by elderly people. How can we make others understand the total grip that PD has on all the facets of our lives? If even just the physical challenges aren't totally understood, how do others understand the mental changes that may occur, the memory loss, the depression, the unfounded fears that can develop, etc.etc. etc.

I'm not sure what the answer is. Educate people one by one is a start!

The one I dislike the most is the silent "she must be drunk or on drugs."

I fear the day will come when some responsible citizen who includes these words after the ones I quoted above..."I think I will watch and see it she is driving a car"...and a few minutes after I drive away a cop is pulling me over.

I think it is time for the millions of us to have what the autism community has. We carry these and hand them to people when we feel the need...like when my grandson is having a sensitivity tantrum (for lack of a more appropriate word).

It is his way of telling us that we missed seeing something in he store he wanted to see, but didn't know how to tell us...how long would it take for you to figure this one out...I have gotten very good at this guessing game. Or it is because the lights are too bright in the store, or the noise is to over stimulating, or there may be too many people around, or the colors are not right...could be any stimulation issue...another guessing game.

So to get to my point. The autism community has cards.

The reference I use to write the words below is third down on the right on this webpage http://www.autismcards.com/autism-cards.html
I know of these card, as my youngest grandson is autistic. Words are off the top of my head at the moment, and I am sure they can be improved upon.

Parkinson's Awareness
You've just had an encounter with someone who has Parkinson's disease
My behavior may seem puzzling to you.
My physical appearance may have been puzzling to you.
This behavior and/or physical appearance might appear inappropriate to you, but it's the best I can do for the moment.
Please understand that when when my medication is not working well, I am not only puzzling to you, but I am puzzling to myself. When my body is stress, like when I am medically sick, my medication(s) doesn't work correctly.

The back of the card would like information similar to the back of the autism card.

I will email a few organization about sponsoring the printing of such card, for purchase by PWPs. I think the time is right for these.

The informational cards that are available today just aren't enough.
They don't address the physical appearance...only basic information about PD and listing medications.
We are no longer an elderly population that rarely leave the house.

We are an active population, some with jobs and families to raise.

I just had a funny experience of how people react when they understand or don't understand your condition. I had a skin cancer (basal cell, surface only) removed from the crown of my head, and they wrapped gauze around and around my head and under my chin to keep the thick pad of dressing in place. I looked like a classic accident victim. I skulked out of the place with a hat with chin flaps pulled firmly into place, and went shopping. It was way too hot to be wearing a hat like that, and I got a lot of looks that told me "you are weird". So I thought, to heck with it and took the hat off. Then the looks were all of smiling sympathy.