[jeanb]

I've been asked to speak at different Ariz State U. Kinesiology class in a few weeks: "Movement and special populations."

I spoke to the instructor to find out what kinds of things she wanted me to talk about. She said the class was comprised of future physical an occupational therapists plus some pre-med.

They also plan to tape my presentation so future on-line classes can view it and then I'd be available in a chat room for questions, or on line some how "live" to answer any questions that "on-line" students might have. (I love the idea of using this technology to help online students.)

Because I don't want to miss anything important , my question for this Board is: what things do you think are important to tell these future health care workers about living with PD?

thank you for any help you can give me!

Jean

[soccertese]

Originally Posted by jeanb

I've been asked to speak at different Ariz State U. Kinesiology class in a few weeks: "Movement and special populations."

I spoke to the instructor to find out what kinds of things she wanted me to talk about. She said the class was comprised of future physical an occupational therapists plus some pre-med.

They also plan to tape my presentation so future on-line classes can view it and then I'd be available in a chat room for questions, or on line some how "live" to answer any questions that "on-line" students might have. (I love the idea of using this technology to help online students.)

Because I don't want to miss anything important , my question for this Board is: what things do you think are important to tell these future health care workers about living with PD?

thank you for any help you can give me!

Jean

the most important thing is maintaining quality of life.
that as healthcare professionals they are wasting their time unless they know the patient's medical history and if they need medication and/or if they are taking it right. a pill can do in 1hr. what months of therapy can't. just having someone show up and say they have pd ain't going to cut it.
involve a neurologist, nutritionist, psychologist at least to give a cursory checkup of the patients.

that's where comprehensive programs make the most sense but that's obviously not easily attainable.

[Sasha]

Originally Posted by jeanb

I've been asked to speak at different Ariz State U. Kinesiology class in a few weeks: "Movement and special populations."

I spoke to the instructor to find out what kinds of things she wanted me to talk about. She said the class was comprised of future physical an occupational therapists plus some pre-med.

They also plan to tape my presentation so future on-line classes can view it and then I'd be available in a chat room for questions, or on line some how "live" to answer any questions that "on-line" students might have. (I love the idea of using this technology to help online students.)

Because I don't want to miss anything important , my question for this Board is: what things do you think are important to tell these future health care workers about living with PD?

thank you for any help you can give me! Jean

Couldn't resist this one! What a honor you've been given. Wow!

After a recent week in a hospital, with all the predictible problems, it seems to me that the biggest issue with all levels and stripes of staff is whether or not they care about my situation and have respect for my plight. I struggle every day to maintain my functioning where it is. I do my best. Realilstically, no one can "fix" many of my problems, but some staff responded with caring and empathy, and this made a huge difference to me. People who were cold and "professional" left me cold. We are all in this life experience together - please don't patronize me; do have a little empathy for my situation, and being a bit friendly doesn't hurt, either. I just see this as a basis for any medical care - the patient must trust the treater enough to allow the process to go forward. Distant, uncaring staff do nothing to spur even minimum complience with recommendations.

We've suffered an enormous blow to our dignity and self-esteem as the disease has robbed us of so many abilities - at some level, this loss needs to be addressed by treaters who, though their actions and attitude, affirm our basic worth as human beings. When this is accomplished, I'm ready - eager actually - to hear about what else they have to offer me. Occupational and physical therapists are in a uniquely good position to help us in dealing with these issues.

Sasha

[stevem53]

A drug, a treatment, or something to address the dyskinesia and dystonia problem

I will hazard a guess that when most people see MJF on TV not being able to sit still, they associate the side effects of Sinemet and Stalevo with the symptoms of pd..I think most people dont know that the treament can be a double edged sword for many of us..Cant move without it, and cant stop moving with it

On an average day, I only experience dyskinesia about a half an hour per day..so far..(Thank God!!)..but a little bit of dyskinesia goes a long way

I think people need to be informed that the gold standard treatment for pd, can be as much of a hinderance as pd itself, and that this is a very serious issue for some of us

[imark3000]

Thank you Jeanb for talking for all of us. From my experience in Calgary, I hope you will shout the following:
1) Doctors should take the time to Listen to patient carefully and discover the unique issues for every one.
2) Doctors should take the time to discuss rather than dismiss right away the patient pursuance of alternative medicine such as exercise, special diet, supplements, yoga, taichi, acupuncture, etc.
3) Take the time to discuss life style of patient and the unique constituents of good quality of life for each patient.
4) Discuss methods to reduce stress for patient.
5) Be ready to discuss PD research with patient
6) Be a friend and consider the patient a partner working together to defeat the illness.
I found that all the above points are completely absent during my encounters with 5 neurologists in Amman-Jordan and Calgary-Canada.
Good luck Jeanb and thank you again.
Imad

Originally Posted by jeanb

I've been asked to speak at different Ariz State U. Kinesiology class in a few weeks: "Movement and special populations."

I spoke to the instructor to find out what kinds of things she wanted me to talk about. She said the class was comprised of future physical an occupational therapists plus some pre-med.

They also plan to tape my presentation so future on-line classes can view it and then I'd be available in a chat room for questions, or on line some how "live" to answer any questions that "on-line" students might have. (I love the idea of using this technology to help online students.)

Because I don't want to miss anything important , my question for this Board is: what things do you think are important to tell these future health care workers about living with PD?

thank you for any help you can give me!

Jean

[jeanb]

Thank you to everyone who responded. I will make sure your voices are heard.

There is plenty of time for others to respond if they would like to.

Jean

[pegleg]

I spoke a month ago to a class of freshmen OT students at a local college. They did the physiological presentation as part of homework. Then, I and another PwP followed up with what those symptooms meant in day-to-day living (the othher PwP taught physics at this same school before disability retirement.)

Examples of what I mean are to have students try to button a jacket wearing thick work gloves, to have some try to drink a little water from s cup while another shakes his arm violently, to hand one or two a book with the pages glued together and other simple "demos."

We each picked a couple of real life stories explaining the frustation of not being able to do some things and stressed how unreliable we were. We talked about it strains family relationships at times, but end on a hopeful note.

I also handoout a factshheet with contact info

It's rewarding! Good luck
peg

[lindylanka]

The huge importance of keeping on moving is one that often gets missed out. That this should be something that it there from the moment a person is diagnosed - that they should have a plan to keep active.....

That there are aspects of Parkinsons that hinder people from moving, such as apathy, inability to multi task easily, and problems with initiating tasks. That there is nothing like friendly encouragement to make a huge difference to this aspect of PD.

Best wishes with this
Lindy

[bandido1]

Congrats on your speaking invitation! Knowing you to be an active participant in the process of educating the uninformed I am assuming you will direct your audience to the comprehensive book being prepared for publishing within a few months by PCC (Parkinsons Creative Collective). THANKS

[tulip girl]

Good Nutrition, Sleep and EXERCISE, EXERCISE AND EXERCISE are the best forms of treatment for PD.

Tulip Girl

PS busy puppy training 24/7