we struggle daily with this thing called pd. if there was a symposiam put on entirely by parkies, and we each had a turn on stage to tell an audience of caregivers, docs, pharmaceutical reps, the media, etc... what would you say to them?

Please be patient with me. Unless we're talking about putting out a fire, just because you can do something faster than I can doesn't mean it has to be done by you. I think of my life now as the story of the tortoise and the hare. I used to be a hare but now I'm mostly a tortoise. And I don't mind. Please don't watch me if I'm struggling with something, it just makes me self-conscious and if I want help, I will ask for it. I know you are trying to be helpful and I appreciate your good intentions, but it is important to me to maintain a sense of usefulness, even if it is only to me.

I like that Yam1! I like it so much, I'll repeat it.

PLEASE BE PATIENT WITH ME!
Please let me finish my sentences even if it takes a long time. Please don't demand a quick answer from me when you ask a question. Please don't complain that I am moving slowly.

And here is what I would like to add-
PD affects my whole body. It is not just a tremor. It is difficulty walking. It is painful neck & shoulder stiffness. It is difficulty speaking, both finding the words to say and speaking with a clear voice. It is difficulty singing and swallowing. It is difficulty using my hands. It is fatigue. It is difficulty thinking clearly and remembering things.

I may look like an average person, but I take a pill every 5 hours plus an extended release pill in the morning, to allow me to do my normal activities. The pills help with all the above, but they don't cure and they don't work 24/7.

Following is a commentary provided to a caregiver forum that in my view should be added to any program offering to educate, advocate,advise, or otherwise inform interested parties about the perils of all PD patients.

PD SYMPTOMS I HATE

This is the first of several offerings that will look at Parkinson’s disease from a patient’s point of view. My objective is to provide those dealing with PD with at least one peek inside my mind.

I am presenting the list in a sequence ranging from symptoms least bothersome to the downright worst of the lot.

1. Tremors: Fortunately this symptom does not, as yet, have a serious impact on my day-to-day activities. My tremors are quite mild, and occur mostly in the morning before I take my morning meds. They are nevertheless on this list because they affect such activities as buttoning and zippering as well as cutting food. I have also learned not to order certain items from a restaurant menu. For example, I can’t twirl spaghetti anymore.
2. Poker Face: Every so often I am aware of it. I first noticed “the look” when looking into a mirror at the barber shop. I also noticed that I have it whenever I am not involved in group conversation.
3. Turning over in bed and adjusting bed clothes. It seems like I am constantly making adjustments and, of course waking up each time. Though she does not complain about it, I am sure my spouse (caretaker) is affected.
4. Hygiene: Showering used to be a five minute event but now averages about fifteen minutes. All my movements seem to take much longer than normal and I often feel unstable. Without a chair to be used when toweling off, I suspect I would be taking an occasional spill.
5. Swallowing: Although I frequently take meds without liquids I find food particles often seem to stick in my throat. Also, if I fall asleep on my back, I frequently have a reflux reaction and often cough until I turn on my side.
6. Walking, falling or “freezing”: I call it “my shuffle”. I get up slowly, move cautiously and sometimes feel I am losing my balance and have actually fallen only once since my diagnosis in December 2006.
7. Intellectual Impairment: My short term memory is more often than not unavailable but long term memories are easy to recall. Old song lyrics, school chums names and long poems like Paul Revere’s Ride are a piece of cake for me.
8. Vivid Dreams: Dreams sometimes seem bizarre and have most recently involved violent physical movement which has recently scared the dickens out of my wife. I am concerned that they could result in an unexpected traumatic episode involving me or my spouse.
9. Handwriting: I hesitate to write anything and am embarrassed when asked for a signature. Printing is satisfactory but done slowly.
10. Speech and salivation: I have the combined these symptoms because they often occur simultaneously and are equally mortifying. Stammering, drooling and nose running are symptoms easily observed and you can only imagine how they affect my psyche.
11. Drips & drizzles: Possibly is as much age related as PD originated. It is not uncommon for me to deposit soiled underwear in our hamper. Muscle coordination hinders my ability to maintain my cleanliness standards...


Well there you have it! The top ten things I wouldn’t mind losing with a cure for PD.

what i would like the docs to know:

what you see when i go into your office for an appointment is not a total picture of what i deal with during the entire day. it is important that you listen to me as i tell what all i go through and take into account that i may not know the terminology of what i describe i am feeling, but i am doing my best to explain what is very real.

i need more than just a few minutes of your time. i have questions about what my body is doing i need answers to in layman's terms. when i ask something, it may not seem important to you, but it is to me. i am not ignorant and have done research to my fullest, but ultimately i must lean on you for your knowledge.

remember that i am a human, not just another dollar figure. i need the security and trust in you to help me cope with this disease. please be available for phone calls, or at least have a nurse that will relay messages so i can interact with you between doctor appointments. there may be times that i call during a severe off time and what i state must be noted as important as it may be a clue as to what you do not see when i am in your office.

please have a questionaire available about my living environment. there may be stresses at home that are worsening my symptoms. this is vital information because it may hold an answer to helping me feel better other than trying me on a new medication. there should be a counselor available that is familiar with pd and stress that you can refer me to. if my insurance will not cover it, the provider should see me and charge me the cost on a sliding scale.

be open to alternative types of treatment. i may need you to write a precription for massage therapy, chiropractic, physical therapy, accupuncture, swimming, etc.

there are so many people in this world that are in soooooooo
much pain , I would tell them heal us- teach our children about nutrition
in our schools and give them nutrient dense food, clean water,
teach people while they are young about humanity, instead of who is the most beautiful on the outside, perhaps this will cut down the amount of
deaths caused by malnutrtion/ obesity/
get the toxins out of our grocery stores, and I would ask the doctors
all have mandatory intruction in nutrtion, for that is our best way to stay healthy -
I would ask bigpharma to take their commercials off TV, and leave it to the
pharmacist and doctors what is safe to prescribed
if I had to tell them about what it is like to have PD
to watch our documentary that Txlady and I were the money finders
and I gave my own money to have produced, as I sent the filmers
to DC and Texas, to speak with my Parkie friends, and my dear sweet
lilspud aka shauna who passed away a year and a half ago at age
34...
we need to have preventative care for "we the people"
so this plague of PD and cancers, etc, will be lower in the USA.
we have more wealth and less health than any country in the world !
link to video
~~~~~~~~~~`
link to view -
http://pwnkle.com/champion.htm

I shouldn't answer this...there are so many things I shouldn't do so I'll center my answer around it.

I think if you stay online long enough, you will eventually represent all of the parts - good and bad - of our generation. We studied hard, played hard, invested hard, did everything and tried to be everything to everybody....and we are still "that generation.....i'm not surprised that we lived to elect a man named Barack Obama as our President.

We live to create and excel. And we make big mistakes. Adding PD and so many chemicals to the mix, and you get some slobbery communications. I'm guilty of this, but don't see how you can understand the illness without looking at the psyche.

If I sound down, that doesn't mean I'm always down...it means I posted when I was down and did so honestly. It doesn't mean that an hour later I'm not laughing at the tv or dancing to my IPOD.

The Internet is misleading in this respect...people can hide behind the screen and not have to put on all the real life masks of social status, professionalism, fame, wealth, power, etc....that prevent more progress than they'll ever make; but at the same time, it can cause people to judge you as that person in yesterday's post.

My message to the world is: one day at a time. Live life without judging people from day to day. Focus on what you can take away from the message that is usable. The Internet is very now.....even a couple hours away things are real world and life goes on ...often pleasurably.

Understanding Internet communication possibilities without ego interference could produce the best communications ever.

paula

Because I so often am told that it's not clear what i am talking about...lol....bad habit -
I 'm editing to add, tho I usually don't name people, but this one is pretty obvious to anyone who knows him, that Stevem is a genuine example of the characteristics of an excellent Internet communicator. He does not judge [except George Bush] and shares his own experiences ..casual but you can trust him. ...straight talk, respectful. Consumers must stand up for themselves and expect this type of communication from everyone. Then there will be trust. Trust cannot develop in a void. Good grief I need my IPOD and my hoola hoop. Husband and grandson bought one for me [sigh] Humor, remember that anyone? lol...I need some Fiona to read.....cheers!

I think I said my piece in pegleg's thread, "Time to make noise about a few things!" Mainly, I think we, as patients/clients/customers/consumers can educate one another about PD, as we do here, and we can look for opportunities to talk with doctors or groups of doctors in order to "tell it like it is." Community groups need speakers all the time, as do adult Sunday School classes, where the topic could be the ethical choices made by legislators approving spending/funding.

I suppose what I want them all to understand the desperate struggle we put forth, more every day, just to get through the motions of the day, so that we meet challenges already spent.

I'm not thinking well enough right now to give a more imaginative answer. Skipped choir practice due to inertia, apathy, and detachment.

I recommend a YouTube video called Parkinson's How would YOU cope? to help family, etc. understand. We need more of these.

Jaye

I'm convinced that the Fox Foundation is paying attention to patients. Michael Rogan's posts in this forum, followed up by a patient survey on the MJFF website is one example. On Tuesday this week, Katie Hood and Todd Sherer were impressive in their response to patient questions and concerns at their Research Roundtable in the Seattle area. I was able to speak to Katie and Todd briefly before they had to leave for the airport, and I have since had a nice email exchange with Katie. MJFF is the real deal; they are innovative thinkers, and we are lucky to have them in our corner.

They are giving us a way to interact in the future by webcasting the Roundtables for the rest of the year. We should take advantage of this opportunity to ask questions and comment. It's a direct line to the people in power; in effect, the rulers of our world. You can register for the Feb 9 webcast here:
http://www.michaeljfox.org/newsEvent...cle.cfm?ID=288

Cheers!