Time to make noise about a few things!
 

I love David Letterman's Top 10 list, which can be hilarious. But I want to talk to you about a few serious topics relevant to Parkinson's disease. I also noticed that paula's signature carries a link to the Faster Cures website and their Top 10 "wants" for this year. Faster Cures was established by the Milkin Foundation after Mike Milkin survived a bout with cancer. Now the philanthropic Milkins are putting a bundle into helping all diseases find faster cures. And they aren't alone. The Grove Foundation (Andy Grove - former CEO of Intel who also has PD) is uncovering every shell they can to solve curing or at least better treatment of PD than a 40-year-old drug. And look at the Fox Foundation; Mike's org has raised upwards of $132 million in helping find a cure.

Everybody wanted "change," and believe you me - it's coming! I feel for the Obama administration.. One can only imagine a different political party going into office after 8 years; there will be so many hands out asking for help that some will have to go home totally empty. and it's going to be up to us (grassroots) to get their attention. So this thread is to brainstorm what our Top 10 list should be.

TOP 10 LIST FOR THE PARKINSON'S COMMUNITY

1. FIND OUT HOW MANY PEOPLE HAVE PD!
I have volunteered with PAN for 8 years (Parkinson's Action Network), and each year at teir forum we go through 2-3 days of "training" and research updates, then visit our legislators on Capitol Hill too tell our story. Every time somebody asks me, "How many people have Parkinson's in Tennessee?" And every time I have to answer, "er . . . um . . . I don't know." Enough said!

2. WE NEED A TEST FOR DIAGNOSING PARKINSON'S !
Not only are we confused as to how many have PD, but we aren't really sure if those diagnosed really have PD! – we’re trying to cure a disease diagnosed purely by symptoms. And on top of that – our clinical trials are based on “observed symptoms.” Who’s to say that a number of people out there taking Sinemet for years were just shaking from anxiety on initial diagnosis and the rest of their symptoms are as a result of the meds. There’s something wrong with this picture.

3. WE NEED __________________?
aha! I'm turning it over to you for a few thoughts.

Please join in this discussion

Peg

more noise !
 

3. We need biomarkers for Parkinson's. Loss of sense of smell is one that most scientists agree on.

4. We need research on the many "types" or subgroups of Parkinson's. It's time for an open acknowledgement that PD is actually many diseases. And let's have current researchers / movement disorder specialists begin a database of the subgroups they have encountered. Share the data.

5. (Re: Peg's #2) We need to get FDA approval for DAT (dopamine transporters) imaging with SPECT (single photon emission computed tomography). This has been tested and found to identify parkinson's disease in people with early PD. I was one hundreds tested in the PRECEPT and PostCEPT trials (2003-2005). And there are other trials going on right now. So why isn't there a big push to complete the trials and to use it as an FDA approved diagnostic tool?

number 6
 

6- We need recognition of the fact that PD is more than neurological and includes endocrinology, immunology, and gastroenterology at a minimum.

Thanks!
 

keep em coming! up to 6 already
peg

Promote best practices
 

7. We need to establish "best practices" for Parkinson's care, promote such to all health care professionals and make known to all patients. Better care now can improve quality of life now.

8. We need to continue to raise our voices as patients, and seek avenues to be heard by those who are making important decisions on our behalf.

great idea by the way!
 

Peg - another post to say that this is a great idea! If we can get a solid list of ten, we can present it to all/each of the orgs plus to influential people at the FDA, NIH, other orgs (like Faster Cures, epatients). It gives great focus to the problems we face.

I'm going to an MJFF research roundtable next week; I'd love to be able to present a list like this to Katie Hood!

Let'em have it!
 

9. We need to educate patients/clients/customers/consumers on how to relate to their doctors and get their questions answered without dissing the hardworking individuals who study and train for up to 12 years after high school graduation to qualify as neurologists with a movement disorder specialty so we can consult them about maximizing our health. We also need to teach these patients/clients/customers/consumers that they may terminate any relationship (with medical personnel) that is causing them stress and anxiety beyond their PD symptoms and move on to another until they find one they can work with.

10. We need to educate doctors, especially neurologists, that PD is a global brain disorder, but we retain our full intelligence, at least at the beginning and in many cases for as long as we live, and that we are adults capable of making choices for ourselves. I have recently spoken to the internal medicine residents at JHU, who are destined to be primary providers for many patients. It's been reported to me that they loved the presentation given by my internist, my husband and me because they learned so much about how PD feels and how insidious is its onset. We need more patients/clients/customers/consumers seeking such opportunities.

11. We need to change the king-of-the-mountain status of pharmaceutical companies and know the reason why a new drug is so costly and why they can get away so much secrecy about their clinical trials results and the true cost of research. For example, I was prescribed Requip XL, for which the mail order pharmacy bills me and my insurance company $959 for a three month supply. Sure I have the best care, my friends keep observing, and the cost of my PD drugs to me and my insurance company has reached about $15,000 a year. I wonder if dogs with RLS pay that much.

12. We need to press our educated doctors and our educated patients/clients/customers/consumers to make it a priority to get volunteers into clinical trials and other research studies, because the primary cause of the time lag in testing new treatments is lack of patient volunteers. It seems to me that the most likely tool for that effort would be a PD Patient's Research Bill of Rights as part of the law of the land, with enforcement funded in all jurisdictions by all powers of justice.

13. We need another Bill of Rights for PWPs in extended care facilities and a certification system for those facility managers who have sent their staff to education programs on proper protocols for care of PWPs (modeled on Bill Bell's NWPF).

thanks peg!
 

More patient involvment in setting research agendas and in clinical trial design. There is a human sociological and pscychological element, perhaps yet to be fully discovered or defined, that is missing in the scientific process of healng people.

Alternatives in the use of placebo. Deception and trickery are not working and the patients it affects are ignored and forgotten.

paula

16. We need legal aid provided for PWPs whose marriages go down the sewer due to that often unspoken complication of PD: sociopsychological misunderstandings and resentments in partners, who feel cheated out of their spouses services, don't understand PWPs motor fluctuations nor their sensitivity to stress, and who too often leave PWPs emotionally abused and abandoned at the time of their greatest need.

17. Before #16, we need psychological (as in neuropsychologists) trained to help families and PWPs anticipate some of the emotional changes and less obvious physical challenges, and we need doctors to be honest about what difficulties we might logically anticipate before the marriage is on the rocks.

Jaye again

consolidating the list
 

I've consolidated everyone's suggestions under 8 categories; some suggestions fall under two or more categories, so I used them multiple times. Please let me know if you have alternate ideas, and keep adding to this list!

A. Collect better epidemiological information about Parkinson’s disease.

1. FIND OUT HOW MANY PEOPLE HAVE PD!
I have volunteered with PAN for 8 years (Parkinson's Action Network), and each year at teir forum we go through 2-3 days of "training" and research updates, then visit our legislators on Capitol Hill too tell our story. Every time somebody asks me, "How many people have Parkinson's in Tennessee?" And every time I have to answer, "er . . . um . . . I don't know." Enough said!

18. Press for a mandatory, national registry

B. Define Parkinson’s

4. We need research on the many "types" or subgroups of Parkinson's. It's time for an open acknowledgement that PD is actually many diseases. And let's have current researchers / movement disorder specialists begin a database of the subgroups they have encountered. Share the data.

6. We need recognition of the fact that PD is more than neurological and includes endocrinology, immunology, and gastroenterology at a minimum

14. More patient involvement in setting research agendas and in clinical trial design. There is a human sociological and psychological element, perhaps yet to be fully discovered or defined, that is missing in the scientific process of healing people.

C. Develop a Definitive Diagnosis for Parkinson’s

2. WE NEED A TEST FOR DIAGNOSING PARKINSON'S !
Not only are we confused as to how many have PD, but we aren't really sure if those diagnosed really have PD! – we’re trying to cure a disease diagnosed purely by symptoms. And on top of that – our clinical trials are based on “observed symptoms.” Who’s to say that a number of people out there taking Sinemet for years were just shaking from anxiety on initial diagnosis and the rest of their symptoms are as a result of the meds. There’s something wrong with this picture.

3. We need biomarkers for Parkinson's. Loss of sense of smell is one that most scientists agree on.

5. (Re: Peg's #2) We need to get FDA approval for DAT (dopamine transporter imaging) imaging with SPECT (single photon emission computed tomography). This has been tested and found to identify parkinson's disease in people with early PD. I was one hundreds tested in the PRECEPT and PostCEPT trials (2003-2005). And there are other trials going on right now. So why isn't there a big push to complete the trials and to use it as an FDA approved diagnostic tool?

D. Develop Best Practices of Care Model

7. We need to establish "best practices" for Parkinson's care, promote such to all health care professionals and make known to all patients. Better care now can improve quality of life now.

9. We need to educate patients/clients/customers/consumers on how to relate to their doctors and get their questions answered without dissing the hardworking individuals who study and train for up to 12 years after high school graduation to qualify as neurologists with a movement disorder specialty so we can consult them about maximizing our health. We also need to teach these patients/clients/customers/consumers that they may terminate any relationship (with medical personnel) that is causing them stress and anxiety beyond their PD symptoms and move on to another until they find one they can work with.

10. We need to educate doctors, especially neurologists, that PD is a global brain disorder, but we retain our full intelligence, at least at the beginning and in many cases for as long as we live, and that we are adults capable of making choices for ourselves. I have recently spoken to the internal medicine residents at JHU, who are destined to be primary providers for many patients. It's been reported to me that they loved the presentation given by my internist, my husband and me because they learned so much about how PD feels and how insidious is its onset. We need more patients/clients/customers/consumers seeking such opportunities.

13. We need another Bill of Rights for PWPs in extended care facilities and a certification system for those facility managers who have sent their staff to education programs on proper protocols for care of PWPs (modeled on Bill Bell's NWPF).

17. Before #16, we need psychological (as in neuropsychologists) trained to help families and PWPs anticipate some of the emotional changes and less obvious physical challenges, and we need doctors to be honest about what difficulties we might logically anticipate before the marriage is on the rocks.

16. We need legal aid provided for PWPs whose marriages go down the sewer due to that often unspoken complication of PD: sociopsychological misunderstandings and resentments in partners, who feel cheated out of their spouses services, don't understand PWPs motor fluctuations nor their sensitivity to stress, and who too often leave PWPs emotionally abused and abandoned at the time of their greatest need.

E. Educate Patients and Health Professionals

9. We need to educate patients/clients/customers/consumers on how to relate to their doctors and get their questions answered without dissing the hardworking individuals who study and train for up to 12 years after high school graduation to qualify as neurologists with a movement disorder specialty so we can consult them about maximizing our health. We also need to teach these patients/clients/customers/consumers that they may terminate any relationship (with medical personnel) that is causing them stress and anxiety beyond their PD symptoms and move on to another until they find one they can work with.

13. We need another Bill of Rights for PWPs in extended care facilities and a certification system for those facility managers who have sent their staff to education programs on proper protocols for care of PWPs (modeled on Bill Bell's NWPF).

F. Clinical Trials & Research

12. We need to press our educated doctors and our educated patients/clients/customers/consumers to make it a priority to get volunteers into clinical trials and other research studies, because the primary cause of the time lag in testing new treatments is lack of patient volunteers. It seems to me that the most likely tool for that effort would be a PD Patient's Research Bill of Rights as part of the law of the land, with enforcement funded in all jurisdictions by all powers of justice.

14. More patient involvement in setting research agendas and in clinical trial design. There is a human sociological and psychological element, perhaps yet to be fully discovered or defined, that is missing in the scientific process of healing people.

15. Alternatives in the use of placebo. Deception and trickery are not working and the patients it affects are ignored and forgotten.

G. FDA/Prescription Drugs/Big Pharma

5. (Re: Peg's #2) We need to get FDA approval for DAT (dopamine transporter imaging) imaging with SPECT (single photon emission computed tomography). This has been tested and found to identify parkinson's disease in people with early PD. I was one hundreds tested in the PRECEPT and PostCEPT trials (2003-2005). And there are other trials going on right now. So why isn't there a big push to complete
the trials and to use it as an FDA approved diagnostic tool?

11. We need to change the king-of-the-mountain status of pharmaceutical companies and know the reason why a new drug is so costly and why they can get away so much secrecy about their clinical trials results and the true cost of research. For example, I was prescribed Requip XL, for which the mail order pharmacy bills me and my insurance company $959 for a three month supply. Sure I have the best care, my friends keep observing, and the cost of my PD drugs to me and my insurance company has reached about $15,000 a year. I wonder if dogs with RLS pay that much.

H. Advocacy / Patient Voice / Bill of Rights

8. We need to continue to raise our voices as patients, and seek avenues to be heard by those who are making important decisions on our behalf

12. We need to press our educated doctors and our educated patients/clients/customers/consumers to make it a priority to get volunteers into clinical trials and other research studies, because the primary cause of the time lag in testing new treatments is lack of patient volunteers. It seems to me that the most likely tool for that effort would be a PD Patient's Research Bill of Rights as part of the law of the land, with enforcement funded in all jurisdictions by all powers of justice.

14. More patient involvement in setting research agendas and in clinical trial design. There is a human sociological and psychological element, perhaps yet to be fully discovered or defined, that is missing in the scientific process of healing people.

15. Alternatives in the use of placebo. Deception and trickery are not working and the patients it affects are ignored and forgotten.