[pkell]

We often complain about the state of care or the condition of research or the need for our input in the way things are done, but if you had a wish list what would be on it. I'm not talking about a cure but rather a list of things that theoretically, could be implemented right away. One of my friends with PD would like in place of those treacherous tables (with the stool, so perilously small that for the balance impaired, executing a pirouette and landing on the table and not the floor is verging on miraculous). It would be a low adjustable chair much like those at the dentist. This improvement alone would speak volumes to patients regarding where they stand in the ranking of priorities of the clinic staff.

Another friend would like to have the ability to see a physical theorapist when the need arises without having to swim the Mississippi up river to get it approved.

I would personally like to see treating doctors actually talk to the other physicians and health care workers who are participating in my case allowing us to all be on the same page. And since it's my thread, I get two, so I would like to be asked upon every visit what the most bothersome issue since I was last seen has been? Plus I want the issue addressed not just noted. I don't mind their taking most of my time with motor issues, that's what they do, but just to make sure they look at the right things, shouldn't they at least ask what's important to me?

If wishes came true what would you wish for?

[lurkingforacure]

I know, it's not a perfect world. But a doc who actually listens to the patient is paramount. My mom , in delicate health and very much a senior, would have had an exploratory abdominal surgery to find a hole no one had been able to actually see on any of the numerous scans, scopes, or sonograms that had been done, but for my insisting on a second opinion...the second doc actually listened to what my mom said and realized surgery would not help her a bit, and that, in fact, she did not have any hole at all. Scary, yes?

This doc LISTENED to my mom describe what was going on, and in less than fifteen minutes had re-diagnosed her and cancelled the surgery the other doctor had set up (his partner, no less, talk about guts (whoa, there's a funny). I really think if doctors truly listened to their patients, the care standard would go way up.

I understand from someone who lived in Asia not so long ago that doctors are paid to keep you well: if you fall ill, doc is fired! What a concept.

[paula_w]

One thought i had, was to follow the schools in developing individual plans and objectives for us.In the schools it's all ex.ed students, including gifted who must have these plans. It's a multidisiplinary document, written by all involved. ex ed could be substituted with chronic medical conditions. There is no need to get that detailed on every patient. just the ones with conditions that are not going to go away.

In schools across the nation, up to 10+ professionals come to each special ed students' meeting once a year ands write goals and short term objectives for a year. parents are also there and when appropriate, the student.

meetings no longer have to be in person. webcasts, skype - there are options - it's never been easier to have multi-disciplinery meetings. I know having a gastroenterologist, an endocrinologist, a movement disorder specialist, neurologist and internist sharing insigihts into a pwp is bound to yield new conclusions or possibilities. Meetings should be given at least 30 min. - once a year.

A written account would help everyone. Review each year.

[lindylanka]

A team, much as Paula describes, whose aim would be to keep me moving, not medicated. And it would include exercise specialists who would work with me. I am sure in the long run it would be more cost-effective.......

[just_me_77]

Originally Posted by lurkingforacure

I know, it's not a perfect world. But a doc who actually listens to the patient is paramount. My mom , in delicate health and very much a senior, would have had an exploratory abdominal surgery to find a hole no one had been able to actually see on any of the numerous scans, scopes, or sonograms that had been done, but for my insisting on a second opinion...the second doc actually listened to what my mom said and realized surgery would not help her a bit, and that, in fact, she did not have any hole at all. Scary, yes?

This doc LISTENED to my mom describe what was going on, and in less than fifteen minutes had re-diagnosed her and cancelled the surgery the other doctor had set up (his partner, no less, talk about guts (whoa, there's a funny). I really think if doctors truly listened to their patients, the care standard would go way up.

I understand from someone who lived in Asia not so long ago that doctors are paid to keep you well: if you fall ill, doc is fired! What a concept.

HMMMMMM.......doctors really taking the time to "Connect & Listen" to the issues of the patient; imagine that being the Rule rather than the exception. Did i recall doctors in my youth that did actually make house calls or was that a dream? Just think of all the savings of overhead a doctor could make by not having to fully staff an office! Any doctors listening?

[made it up]

This, we let all medical practitioners who are treating us be they our GP, neurologist etc communicate because we've asked them to.
Whether it's by or as well as a phone call and letter.
You're entitled to read thse letters they send to each other so you can ask for a copy.
That's how my Drs know what's happening in my world plus I get what their proposed treatment is and an (at times) incorrect version of what I've told them in the copied letter which I can then remind them about.
Cheers

[paula_w]

just me,

You did not dream it; i think it might have been routine in "emergencies". I can remember our family doctor coming at night because my mother thought my brother might have appendicitis. But I was very young.

Originally Posted by just_me_77

HMMMMMM.......doctors really taking the time to "Connect & Listen" to the issues of the patient; imagine that being the Rule rather than the exception. Did i recall doctors in my youth that did actually make house calls or was that a dream? Just think of all the savings of overhead a doctor could make by not having to fully staff an office! Any doctors listening?

[CarolynS]

I would like to see student doctors and nurses learn about Parkinson's with more than a one hour study. The only part of this wish is that we as a PD community need to fulfill this wish by getting into community colleges and other school to present PD.

For example, we have a community college here is south PA that has a nursing school on all campuses; primary site in Harrisburg and all satellites that are scattered throughout. My daughter is an administrator at the Gettysburg campus, so the following would be easy for me.

Teaching them about, 1) what to look for, 2) why we need our meds on OUR schedule when in the hospital, not on the 7/12/6 schedule that is the norm for them, 3) why we look the way we do; I am not drunk or on drugs, this is called dyskenisa and/or poor balance and 4) why it takes so long at the check out register just to get the bills, not to mention the coins out of my purse or pocket. I am there are many more to add to this list.

Have I done this, no, it has only been a "pipe dream" for me. Do I need to get off my rear end and do this...you bet.

We also have Penn State College of Medicine (doctor and nursing) in Hershey, where just one hour from my home.

[paula_w]

I just read lurking's post in Digger's thread about Pink 1. i didn't read the article and after reading the thread i don't have to. I'd just agree with her anyway. Digger you must always remember that we are not shooting the messenger.

Patients online are different now. We are knowledgeable enough to follow science and get much of it, but we lack [most of us] the general knowledge of chemistry, biology,the language of research, etc.

So when an article like the pink 1 shows up, we can sometimes tell that it's for other reasons than saving lives. But I don't think the majority does and I don't always recognize it either.

That's one of the reasons we need to talk to scientists on a regular basis. Combining what they can inform us about with what we can inform them about....has to be a productive thing.

Not all pwp are ready to talk with scientists and i'm not saying one is any smarter than another...just educated about it all and stuck in limbo with not enough current direct contact with scientists and frustrated at how much we have to speculate.

[indigogo]

I want every PWP to have what I have - and that is everything wished for in this thread regarding a doctor who listens, understands PWP, and works with a comprehensive team. I know it can be done - it doesn't surprise me that this is the number one wish. It is so much easier than a cure, and it can happen now. Why is something so seemingly simple so hard to accomplish? NPF is involved in "Allied Health Care Team Training," but we need to expand and grow the concept.

One impediment is lack of money. I think it is hard to sell care to donors - cure is sexier - everyone wants to fund a cure. Below is the talk I gave in September at an event in Seattle in honor of Bill Bell's retirement as Executive Director of the Northwest Parkinson's Foundation. It's about how we can fund both care and cure without shirking our duty to either one - and what Bill accomplished by using the foundation to establish the Booth Gardner Parkinson's Care Center. It got a really good response......
------------------------------------------------

Remarks at NWPF Benefit, September 28, 2010


I am so pleased that I was asked to speak about Bill Bell and the Northwest Parkinson’s Foundation. They are central to my life, and I love to talk about them – and do, whenever I'm given the opportunity. This is a story about how Bill Bell and the NWPF have made a difference in the lives of so many people by taking the road less traveled.

The day that I had my first appointment with a neurologist for suspected Parkinson’s disease was, no fooling, April 1, 1999. And I remember on that day that the front page story in the P. I. was about Parkinson’s and a guy named Bill Bell who had several family members with the disease. But the shock of the diagnosis was too fresh; I really wasn’t ready to "read all about it," so I filed the information away for later. Hopefully, much later. Turns out denial wasn’t that easy. In a couple of weeks I received a phone call from an old college friend. “What’s new?’ she asked. “I have Parkinson’s disease,” I said. “That’s funny,” she said, “I know a guy who started a foundation to build a new kind of Parkinson’s clinic. His name is Bill Bell. You should meet him.”

Obviously, there would be no escaping Parkinson’s disease or Bill. I’m glad I had no place to run. Bill supported and promoted my foray into the world of PD politics and advocacy, and serves, most importantly, as a reliable reality check – steering me clear of my worst impulses and cheering for the best. He keeps me laughing, bugs me to go outside, and is an indispensable comfort to me and anyone else with Parkinson’s who's called the Foundation and found him answering the phone. At national meetings and conferences, he can be found relaxing with patients at the end of the day – not the usual practice of the ordinary Foundation executive. That's because Bill Bell is not ordinary.

In fact, both Bill and Craig are extraordinary. As they helped their mothers live with Parkinson's they were disappointed in the care that was available – and knew they could do better. The foundation they built and the clinic they conceptualized are original and remarkable for one very important reason: quality of life is at its heart.

It was not the easy or traditional path. It would have been so much simpler to have one or two splashy events to raise money for a cure. Isn’t that the best way to help someone suffering from disease – give money to research to just stop the beast in its tracks?

Yes, that certainly is a legitimate reason for philanthropy, and thank god a lot of money has been raised for Parkinson’s research. But the truth is, it has been eleven years since my diagnosis, and we are no closer to a cure. In reality, we are still decades away. This is not because of a dearth of money for research or because the researchers are not doing their jobs, it’s quite the opposite – well funded, the best minds in science, working at an accelerated pace for the past ten years, have discovered that the more they learn, the less they know. Parkinson’s is far more complicated than originally thought. Technological advances have given us ways to go where no man has gone before – into a vast, exciting, neural frontier. Undoubtedly, scientific exploration will, some day, yield new treatments and maybe that elusive cure. The search is relentless, but the process is realistically slow.

Meanwhile, back at the ranch, what's a girl to do? My hands shake with more frequency, my legs move more slowly, my words come less fluently, and my world becomes smaller. The drugs I take to control my symptoms have been on the market for 40 years, and they do nothing to treat the depression, anxiety, and apathy that are just as common in Parkinson’s disease as my tremor, and more debilitating. New medications are just versions 2.0 of the old. Surgery is available if necessary – but it, like the drugs, does not halt or cure, it only suppresses the symptoms, and only for a while.

This is why I’m glad that Bill Bell chose the less worn path, and created the Foundation to build the Booth Gardner Parkinson's Care Center. The Center is one of only two in the United States; one of five in the whole world that uses the concentrated team approach to care, with a premium on wellness. My doctor, Medical Director and Movement Disorder Specialist Monique Giroux (Bill had the good judgment to hire her – twice!), has become the leading expert in the most cutting edge, state of the art, Parkinson’s treatment available today. It’s not a new drug, but instead a model of care based on taking time and listening to the patient, recognizing that each person who walks through the clinic door is a unique individual, with their own set of symptoms, along with a family, a job, and life that is quite possibly falling apart. The center was there for me when my life crashed. A team of health professionals including neurologists, psychologists, occupational, physical and speech therapists work together under one roof to keep patients healthy, active, moving, and productive for as long as possible – at least until those scientists return from their explorations with a new discovery. Hopefully in a convenient pill form.

Even those dedicated to finding a cure are paying attention, including the world's best. At a Michael J Fox Foundation Research Roundtable in Denver this summer, it was completely satisfying to see Dr. Giroux hold forth on care and wellness, her expertise getting the same respect and equal time with the famous neurobiologists and research scientists that have long held sway at the Fox Foundation. The Northwest Parkinson’s Foundation has influenced the conversation and changed the landscape. People are noticing, and the Foundation's expertise is in demand.

If I have to have Parkinson's, I'm lucky to live in Seattle – and grateful that Bill and Craig took the unconventional route. The services provided by The Northwest Parkinson’s Foundation improve patients’ lives right now, not in twenty years. I depend on those services to make my life better – and it is.

So …….. maybe this is a good time for Bill to say goodbye. Leaving the Foundation with an outstanding reputation? tangible accomplishments? a solid record of improving lives? a legion of adoring Parkinson’s patients with crazy ideas, long stories of woe and his cell phone number? You might want to change that.

Thanks for always being there for all of us, Bill. You are a true friend. We’ll miss you – please don’t go too far!
.
And to Colleen – welcome! I think we’re in good hands, the future is promising.
In closing, Parkinson’s disease isn’t going anywhere fast real soon – it’s the lesson of this story and the nature of this disease. There is still so much to accomplish. I have a daughter. Her name is Elizabeth, she just turned 22 last week, and is beginning her senior year at the University of Washington. She is the most important thing in my life. I am so proud of her, and so excited for her future. I refuse to be a burden to her. I must keep healthy – I have no other choice. I live alone, but I can't do it alone. I need the Northwest Parkinson's Foundation in my corner. To everyone here tonight, please find it in your heart to keep the foundation strong so it can continue to serve as an inspirational model to others, and as a real help to me, my family, and all those living with Parkinson’s in the Northwest. It’s a good investment in the health and happiness of our community. Thank you.