Welcome to Our Parkinson's Place

I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's
diseases as well and thought it would be nice to have a place where
updated news is in one place. That is why I began this blog.
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Friday, February 27, 2015

A View from Both Sides of the White Coat

Feb. 27, 2015

In this essay, Alice Lazzarini, PhD, discusses her work on discovery of the alpha-synuclein genetic mutation and her own experience since being diagnosed with Parkinson’s disease.

For years I only saw Parkinson's disease through my microscope; now Parkinson’s is there every time I look into the mirror.
In 2004, I was working on a drug for Parkinson’s at a large pharmaceutical company when I began developing symptoms of the disease. Like many people do, I initially reverted to denial. I chalked the evidence up to being too immersed in the disease research. Acceptance began to take hold only once I realized that my perspective from both sides of the white coat was a story worth telling, that I could use it to speak out in support of Parkinson’s disease awareness.

During the 1980s, I coordinated a service program, the New Jersey Huntington’s Disease Family Service Center. Then, in 1990, Dr. Roger Duvoisin, Chair of the Department of Neurology at Robert Wood Johnson Medical School at that time, recruited me to study neurogenetics.

Until the 1990s there had been little credence to Parkinson’s being genetic. For our 1994 paper in the journal Neurology (“A clinical genetic study of Parkinson's disease: evidence for dominant transmission”), I reviewed hundreds of medical records from Dr. Duvoisin’s Parkinson’s patients. That publication helped to turn the tide of thinking toward a genetic component. Then, finding a rare family in which the disease was passed from generation to generation ultimately reversed the field’s position.
Dubbed the “Contursi kindred,” the family originated from a little village southeast of Naples, Italy. Over the generations, there had been more than 50 family members with Parkinson’s, but there were 10 from whom we could collect DNA. Comparing samples from those ten to those of their unaffected relatives gave us the statistical power to locate a causative gene.
Dr. Duvoisin arranged collaborations with researchers at the University of Naples and at the National Human Genome Research Institute, part of the National Institutes of Health (NIH). In July 1996, I traveled to Contursi to collect samples needed to confirm preliminary results reported by the NIH lab. The Contursi kindred allowed us to identify the location of the first Parkinson's disease-causing mutation. This was a breakthrough that would change the future of Parkinson’s research.

I was thrilled when our discovery made The New York Times. The November 15, 1996 headline read “Scientists Identify Site of Gene Tied to Some Cases of Parkinson’s.” That same day, the NIH held a press conference at the National Press Club in Washington, DC, where we announced the publication of our discovery to the scientific community.

Within a few short months we determined that the Contursi mutation was in the gene that coded for the protein alpha-synuclein, which was soon thereafter recognized as the major component of the classic hallmark of Parkinson’s disease, the Lewy body.

Identifying a disease-associated gene and the pathways it affects is the first step in the development of novel therapeutics. After our discovery of the alpha-synuclein mutation, millions of dollars poured into research laboratories throughout the world in an effort to determine the role of alpha-synuclein in Parkinson’s disease.
The Michael J. Fox Foundation has supported much of that research, such as toward a vaccine to target alpha-synuclein and compounds to clear out Lewy bodies. The scientific and patient communities believe that targeting toxic alpha-synuclein might block its ability to spread between cells, forestalling and — dare we hope — reversing the course of Parkinson’s.
It has been nearly 20 years since our genetic discovery, and we are at last witnessing its potential to directly impact people with Parkinson’s. Whether or not this will have a therapeutic benefit for me remains to be seen, but I get immense personal satisfaction from seeing our research come full circle.

So what do I see now when I look in that mirror? I see a face that’s begun to mask. I see a tremor that I can’t control, and I see a body that moves with a great deal more effort that it once did. But when I talk to that reflection, I can now say, “Of all times to be staring down Parkinson disease, we are living in the most promising.”

Alice Lazzarini, PhD, is a clinical assistant professor in neurology at Rutgers-Robert Wood Johnson Medical School. She is the author of “Both Sides Now: A Journey from Researcher to Patient.”

Stem cell therapy a boon to Parkinson's patients

Bengaluru:Feb 27, 2015, DHNS

Two courses of stem cell therapy have helped Ashok Kumar, 59, who suffered from tremors and rigidity due to Parkinson’s disease, recover completely, much to the joy of his family.
“The man was brought inside my cabin in a wheelchair. He was unable to even sit on the chair without support. Today, he walks independently. Stem cell therapy has made it possible for him,” said Dr Naseem Sadiq, Director, Plexus Neuro and Stem Cell Research Centre, who began treating Kumar in October, last year.

Previously, medication and surgical procedure were the only treatment option for Parkinson’s disease. Medication in the long-term often lacks effectiveness and may cause side effects, while surgery is not always feasible. Lately, stem cell therapy has turned out to be a boon for patients with Parkinson’s, Dr Sadiq said.

Kumar is among the few who have benefited from stem cell therapy. However, though the State has been reporting an increase in the number of registered stem cell donors, it is far behind sufficient as the genetic match between donor and recipient could be anywhere between one in 10,000 and one in two million, according to experts. 

Speaking to Deccan Herald, Raghu Rajgopal, co-founder, Datri, a registry for stem cell donation, said, “The response we get from Karnataka when we conduct stem cell camps is great. We see a lot of people and registering with us.” 

As many as 6,000 people have registered from the State under the Datri registry. A total of 72,000 people have registered across the country. In Kerala, 11,000 have signed up, the highest so far, he said. 

“Among the common myths are that by donating stem cells one turns infertile and weak, have increased chances of cancer and also that there would be excess loss of blood,” he said. 

According to studies, over one lakh people are diagnosed with Leukemia (blood cancer) and other blood disorders every year in India. The Indian Council of Medical Research has predicted that by the end of 2015, Leukemia cases will reach an estimated 1,17,649 and 1,32,574 by 2020. Stem cell therapy is a widely used treatment mechanism for Leukemia.

Alzheimer’s, Parkinson’s and diabetes research at forefront of Cambridge University's £54.6 million investment in city

Cambridge University's Senate House

By Cambridge News  |  Posted: February 27, 2015
Cambridge University's Senate House
Cambridge University is planning £54.6 million of investment in the city centre, with two major new developments soon to be in progress.
Last week the university’s general council approved plans for a new Chemistry of Health Centre in Union Road, and confirmed its intention to extend the Judge Business School in Tennis Court Road.

The new chemistry building has been estimated to cost approximately £22.7 million, and will provide up to 2,865sq m of laboratory space over six floors.
It will house the Centre for Protein Misfolding Diseases, a Chemistry of Health Incubator, and the Molecular Production and Characterisation Centre.
loop the related articles and see that at least one is live (value = 1). if it is, show everything below
A report of the council’s decision, published in the University Reporter, said: “The building will enable the CPMD to effect a step change in basic and translational research on molecular approaches to combat modern pandemics such as Alzheimer’s and Parkinson’s diseases and type II diabetes.
“The incubator will be at the core of this vision, with research scientists from industrial partners and start-ups occupying laboratory and desk space alongside academics from Cambridge and collaborating institutions.

“The MPACC will provide support and access to state-of-the-art instrumentation for academic and industrial users in Cambridge and from across the UK.”
The university has applied for a £17.645 million grant from the HEFCE’s UK Research Partnership Investment Fund for the project, with the remaining funds raised from philanthropic donations to the department.

The council also confirmed its approval for a new building on the site of the Bridget’s and Nightingale Hostels, which would both be demolished.
The new building, which will include a bridge link to Keynes House in Trumptington Street, will house 25 academic staff, at an estimated cost of £31.9 million.

It will be named the ‘Simon Sainsbury Centre’ in honour of the settlor of the Monument Trust, which has committed up to £8 million to the project. The remaining funds will be found from a university loan.
Professor Steve Young, the university’s pro-vice-chancellor for planning and resources, has now been authorised to accept a tender for the works.

Both new developments are expected to be operational by September 2017.

Changing the Tides of PD Stigma from Whispers and Staring to Support and Caring! By Dr. De Leon

Maria De Leon People with Parkinson's Advisory Council
Maria De Leon, M.D.

I have been dealing with Parkinson’s disease patients and their families for 25 years. During this time, I have seen many great changes in the science of Parkinson’s and great strides have been made in improving the quality of life of those who suffer this illness yet despite all the advances one thing that continues to plague my mind is the stigma many of us who live with PD continue to face on a daily basis.
Many of my previous patients and newly diagnosed friends continue to hide behind a cloak of invisibility for fear of being ousted, made fun of, or ostracized in public. This fear can be more freighting when you live in a small community as I do. Having a tremor or experiencing gait difficulty may suggest to someone that you are anxious or nervous or even inebriated. I have had to write letters and defend patients who were accused of DUI’s due to their neurological illness one time too many. While speech impediments that accompany PD may falsely convey to someone, who is unaware of the condition, a possibility of intellectual disability. Well, no wonder going out in public can be terrifying for many of us and prefer to hide in the safety of our homes where our intellects are not questioned!
Although our motor symptoms can invite a lot of open stares our invisible non motor symptoms like our depression, memory loss, bladder problems, can be even more challenging and bring forth a lot more harsh judgment from others if we try to hide our disease from others who won’t understand why we keep forgetting things or having to go to the bathroom a million times. Instead they might formulate erroneous thoughts like we are not very competent.
Sometimes, even well meaning people can contribute to the stigma by making comments like you have PDF and you are able to do that!
Sometimes, people can be cruel to the point of singling out someone out repeatedly, otherwise known as bullying. These individuals will mimic the impediments of the chronically ill, such as PD persons, to the point of causing PTSD (post-traumatic-stress -disorder) in some of those individual’s.
I have personally witnessed bullying in the nursing homes and assisted living communities where the more able pick on the less able in scenarios that play out like a movie scene from “Mean Girls.” Unfortunately, my experience with bullying has been at times more personal than that. I, too, have experienced firsthand the staring, pointing, and negative comments of those around me when I have found myself unable to ambulate without use of a walker or cane. These types of negative commentaries and reactions were extremely upsetting to my young daughter which in turn made me sad for the fact that she had to witness such cruelty.
It did not bother me they were poking fun of me rather that they made her feel bad which made me mad for the ignorance that led to this behavior. I was not ashamed of having PD but suddenly felt bad for all the neurologically ill persons who have to deal with this on a daily basis. I realized and explained to my daughter that their comments and attitude were more about them than about me and my illnesses since they were willing to expand so much energy on a stranger.
Since a lot of the time, cruelty and bullying come from ignorance, lack of knowledge, and understanding. Therefore, it is important that we educate others about our disease. But in order to do this effectively and efficiently, we ourselves should not be ashamed to have the illness or be disabled, or shaky or slow. Embrace your illness and teach others about what it is like to live with PD; by doing so you will be empowered. How do we expect others to understand us, be compassionate, or have empathy when we ourselves are ashamed?
The stress caused by the stigma of the disease can exacerbate our underlying neurological disease. So YES, you are bound to shake even more as you step out in public as you fear the scrutiny of those around wondering why that slow, crazy old lady just can’t be still or walk faster?
How do we deal with this?
Counter the culture:
Dr. Corrigan says that “self -stigma is an egregious impact of stigma in general, a diminished sense of self esteem leading to a ” why- try ” attitude in many people.” We need to put the power back in the hands of those suffering with the illness- you the patient!
The first thing you have to do is be kind to your own self- less critical of your impediments. A lot of times in my experience is our mental image of ourselves that gets in the way. Others may not even notice a problem. other times, people are scared by brain diseases simply because the brain still remains a mystery and symbolizes the epitome of ones being. Others are scared about what they heard which in my opinion usually is a lot of myth with little bit of facts. It is up to us who suffer with the disease to set the record straight and educate our neighbors, friends, and people in our communities.
A Rehabilation Professor at NYU Langone Medical Center  urges individuals to let go of their biases and  learn more about their illnesses, “this allows the person to maintain an active role in society and, ultimately, a sense of dignity, ” she says. Which is what I encourage all my patients and friends to do.
From experience I know that
    1. Patients are the best people to advise and educate others about their illness; that breaking down barriers starts with the individual letting down his or her guard and letting others in. Once you are willing to be vulnerable and let others know you have PD, you will find that a person’s attitude will change from skepticism to total support or PD champion.
  • Thus, not only do I teach about PD to health professionals and lay people alike but I also teach regarding the perils of adult bullying in the community as it pertains to chronic neurological illnesses like PD. Meantime emphasizing that in the elderly- aggression and bullying can be the initial presentation of a neurological disease such as PD itself.
  • So let’s all do our part and turn staring and whispering into caring and PD supporters. 
Sources: Stephens, s. ( February/ March 2015): ” Overcoming the stigma: turning staring into caring.” Neurology Now. 34-38.
Parkinson’s disease: the basics –
Dr. M. De Leon is a movement disorder specialist on sabbatical, PPAC member and research advocate for PDF (Parkinson’s Disease Foundation); Texas State Assistant Director for PAN (Parkinson’s Action Network). You can learn more about her work at you can also learn more about Parkinson’s disease at or at www.wemove.orghttp://www.aan.org All materials here forth are property of Defeatparkinsons. without express written consent, these materials only may be used for viewers personal & non-commercial uses which do not harm the reputation of Defeatparkinsons organization or Dr. M. De Leon provided you do not remove any copyrights. To request permission to reproduce release of any part or whole of content, please contact me at contributor Contributor