Wednesday, September 22, 2010

Bringing the WPC to You

In just five days, members of the Parkinson’s community will gather for the 2nd World Parkinson Congress in Glasgow, Scotland. Can’t make it to Scotland? PDF will bring the WPC to you.

We’ll be reporting straight from Glasgow, providing scientific updates, interviews with attendees, photos of the Parkinson’s Quilt display and more.

What do you want to know from the meeting? Give us some ideas of the topics you'd like covered.

We'll do our best to report back to you next week, with help from our on-the-ground reporters, members of our People With Parkinson’s Advisory Council and Clinical Research Learning Institute.

Please share your thoughts below.

  • To comment or view comments: Click "Comments" or "Post a Comment" below.

12 comments:

Anonymous said...

My mother had Parkinsons and one of the most difficult things we ran into was that there was a lot of information about the movement disorder but very little about Parkinsons dementia. All literature seems to center on movement but I have now come to realize that many Parkinsons sufferers will have mental/brain issues such as sequencing etc. based on their Parkinsons. In terms of care- it also made it very difficult as it was not memory loss such as Alzheimers and very few care facilities had any understanding of the specific mental issue related to Parkinsons. I would love to see more research and even acknowledgement of mental difficulties related to parkinsons.

Anonymous said...

I have never read anything about Parkinson patients being depleted in magnesium, but when my legs begin to quiver and I know reigidity is coming, I take magnesium by capsule form, and in about 20 minutes the problem is gone. What, if any, research, confirms what I have experienced?

Anonymous said...

(February 9, 2010) – Two recent studies by James Fallon, professor of psychiatry and human behavior at the University of California, Irvine, have had startling success with a neuroregenerative therapy tested in rats. The therapy may help cure Parkinson’s. The Intellectual Property is owned by NeuroRepair, a small San Francisco-based biotech company, committed to developing a procedure for repair of neurological damage based on a protein called Transforming Growth Factor alpha (TGF alpha). Is this "real"? Seen nothing since February.

Anonymous said...

Please bring all information from the WPC regarding neuroprotection. In particular, information regarding calcium channel blockers, anti-oxidants, mao-b inhibitors, anti-inflamatory agents, dopamine agonists, NMDA inhibitors, creatine, and other experimental therapies.

Anonymous said...

My husband has had Parkinson's for ten years and was very young at onset. I agree with the other commentor that we need more research and support from the Parkinson's Community in regards to psychological and cognitive changes. There seems to be much focus on the medication and movement part of the disorder but not much information on the psychological and cognitive impact of the disease. There is also little support for caregivers of young onset Parkinson's patients and their families.

kmaddox said...

I have Parkinson's and am interested in forestalling as long as possible the progression of the disease. The comment regarding magnesium (what dose?), the one requesting info on neuro-protection, any new information on exercise--all are of interest, as is anything on stem cell research (hang the religious objections), particularly overseas.

nanawis said...

I would like to know of evidence based treatment of camptocormia.

Anonymous said...

I would like to hear more about treating mild cognitive problems of PD with drugs like Aricept and Exelon and what results have been acheived with them. And are there other drugs or techniques which may help?

Tony said...

I understand that there have been instances of Liberation Surgery tried on PD persons.Apparently a Dr. Hubbard has done 1 or more of these operations. What are the results? and is this a subject for discussion at PD 2010 in Glasgow?

Anonymous said...

I was a caregiver for my father who had Parkinson's Disease. He passed away last year. I believe that there needs to be such greater awareness in the public about this illness and believe most people think of it only as a shuffling and shaking disease of the elderly, and I have communicated with so many people with young onset PD, I think it alarming and feel the numbers are not accurate. There needs to be more work in this regard and I am in the process of writing a book about my experience. I also think that while all doctors and nurses certainly want to help their patients, they do not actually do the best job in providing information, tips, basic essentials for helping their patients to live the best lives they can, including helping the caregiver to know how they can best help. There are a multitude of books, but with such a variation of symptoms in people with Parkinson's, I wish the medical teams would put together better material to help guide their patients and their caregivers in the best way to live the most productive life. I had contemplated designing a package almost like one that the dentist provides after a dental appt. with various items that would not work for all, but may be useful for some, or useful at a future date for others; items such as assistive devices to ease in self-care, ergonomic pens, straws, just a few examples. I also think that so many patients do not really want to hear in medical language the new medications in the pipeline, or promises like so many have received of cures that haven't come, but more information on how to live the best life today. Hope is always critical, but more tips without forcing patients to sift through various books, often difficult to find at libraries, etc., should be a given. Just a thought. I think the other comments here are great, but I also remind everyone that sometimes those simple suggestions that I hear are most often shared in a conversation that starts when someone learns someone else has PD, wind up being more rewarding that those at the visits to the doctor. I do not have PD, so may not have the best take on this, but I am merely sharing my experience and I found the very basic help most lacking. Thanks to PDF for all they do. I would also like to know how more people like myself who are totally devoted to advocacy can find employment in this area. Thank you.

PDF said...

Thank you to everyone for your comments. We are at the WPC now and sessions begin tomorrow. We'll try to cover the topics you have suggested are important to you and to answer the questions you've posed.

Remember, if you have individual questions about your experience with PD, you can call PDF's HelpLine now at (800) 457-6676.

Stay tuned for our report from tonight's opening ceremonies!

Anne said...

I would also (along with the woman who posted on Sept 24) like to know more about PD + dementia.
It is nothing like Alzheimers, but no one seems to know anything about it.
I have read about Lewy body dementia, and also some about hallucinations caused by medication, but I have to dig for this information.
My Dad passed away in February, however I continue to be involved with a family advocacy group in the healthcare center he was in. The one-day course on dementia that is required for CNAs here in Maryland, did not come close to scratching the surface of this complex problem.
Please--more on PD and dementia!