In Memoriam: Gladys González-Ramos, Ph.D.

As many of you know the Parkinson's disease and social work community has lost a true leader and very bright light in Gladys González-Ramos, Ph.D.  Though I only knew her and worked with her briefly, I will greatly miss Gladys.  Gladys had a perfect blend of warmth, passion, ability to connect, and great intellect that made her such a bright leader in the world of PD and social work.  If you have a moment please post your fond memories and comments on the NPF "Ask The Doc" board.  

NPF Ask The Doc board can be found here:  http://forum.parkinson.org/index.php?/topic/10187-in-memoriam-gladys-gonzalez-ramos-1954-2010-a-leader-for-parkinsons-disease-post-your-memories/?s=6326719314a99f8f97ca1cc15d9c95e1

 

Gladys you will truly be missed.                                                                                           

Jason Malcom

 

 

Happy Holidays

Happy Holidays!  It has been great to connect with all of you and I hope our connection continues and grows in 2011.

Happy Holidays to all of you and your families and loved ones.

Jason

Study on disparities in care for PD

An interesting study out of Maryland looking at the disparity of PD treatment comparing African Americans and Caucasians. 

http://www.medpagetoday.com/Neurology/ParkinsonsDisease/23921

Jason

Healthcare & Social Media

Recently here at the Parkinson Center of Oregon we have been talking a lot about social media and and it's role in the provision of education and outreach in health care.  Specifically we are currently using Facebook, Blogs, Twitter, and YouTube to provide education and outreach and to provide another way for patients, families, and professionals to stay connected to our center.  Check out the video above to see an example of a video we recently shot to answer an unanswered question written to us by a patient/family from our last symposium.

Also, here is a link to the Parkinson Center of Oregon's Facebook page:
http://www.facebook.com/pages/OHSU-Parkinson-Center-of-Oregon/102479433136676#!/pages/OHSU-Parkinson-Center-of-Oregon/102479433136676?v=wall

And here is our YouTube channel:  http://www.youtube.com/user/OHSUPCO

I would love to hear if anyone else is utilizing social media to provide education and outreach.

Happy Holidays everyone,

Jason Malcom

Houston

It was great seeing you all in Houston and meeting all of the new NPF social workers.  Welcome to the family!  I thought it was a good but short conference.  Hope to see you all again soon.

Jason Malcom

National Family Caregivers Month

In recognition of National Family Caregivers Month I thought I would share this link from the NPF and say thank you to all our care partners of PD. 

http://www.parkinson.org/Caregivers/Caregivers---On-The-Blog/November-2010/Appreciating-Family-Caregivers

Here at the Parkinson Center of Oregon we are running an 8 week group specifically set up for carepartners of PD.  That we are offering it during National Family Caregivers Month is purely coincidental, but it got me to wondering what other type of specific programming do other social workers and centers offer to their carepartners of PD.....

jam

New Study Links Urban Pollutants to Parkinson’s Disease

manganese

A new study out of Washington University School of Medicine in St. Louis is linking exposure to urban pollutants with higher risk for Parkinson's disease.  Specifically the study looked at urban areas with high levels of copper and manganese and found people living in these areas are at higher risk (in some cases a much higher risk!) for developing PD.

http://www.webwire.com/ViewPressRel.asp?aId=126466

jam

AGENT ORANGE Fast Track Claims Processing System

Many of you have likely heard of this already, but I thought I would post anyway.  VA has a fast track webpage dedicated soley to Agent Orange and Parkinson's disease claims for service connection. 

https://www.fasttrack.va.gov/AOFastTrack/home.do

jam

Study on Depression and phone follow-up care

Some interesting research out of the university of Michigan regarding depression and efficacy of telephone-based "check-up" calls to patients. 

http://psychcentral.com/news/2010/10/27/phone-reinforcement-improves-depression-care/20201.html

University of Michigan also set up a website called depressiontoolkit.org that appears to be family and patient friendly.

http://depressiontoolkit.org/

jam

NPF Chapter Leadership Conference in Houston.

Roll call time social workers!  Who is headed to the NPF Chapter Leadership Conference in Houston in December?

http://www.parkinson.org/Improving-Care/NPF-Network/NPF-s-Center-of-Excellence-Network-%281%29/NPF-s-Center-and-Chapter-Leadership-Conference-%281%29

After missing last year's conference, I'm excited to go this year.  I know Arlene D'Alli from Duke is going and we both hope that social work is well represented at the conference.  I think it would be great if we can meet up as a group as we did 2 years ago in Houston. 

Looking forward to seeing you all in Houston!

Jason Malcom (jam)
Oregon Health & Science University
Parkinson Center of Oregon

Social Support and Health

A brief article from PscyhCentral about social supports and health.  http://psychcentral.com/news/2010/10/25/social-support-friends-can-help-our-health/20106.html
jam

HD genetics testing assessment form

Hi everyone,

Does anyone have a form or format they utilize when interviewing patients coming to clinic for genetics testing for HD?  If you do and you can share it, I would love to see it.  Thanks.

Jason

World Parkinson Congress

I heard the World Parkinson Congress in Glasgow was a great success.  How many Social Workers attended?  If you did attend let us know how it was and how Social Work was represented.  And.....I'm jealous. :-)
jam

Mental Aging

Kind of an interesting article on mental aging from the Mental Health Social Worker blog.
http://mhsw.org/mental-health/new-study-reconciles-conflicting-data-on-mental-aging/
jam

End of Life Care

A colleague of mine recently forwarded me a great article in The New Yorker, titled "Letting Go:  What should medicine do when it can't save your life."

It is definitely not a light article but it is well written and covers great topics that Social Workers are often called upon to help address; advanced directives, palliative and hospice care, and working with families to help them decide what they want in terms of medical care that allows for what is most important to them as they go through the end of life.

A link to the article:  http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande

jam

Self help workbooks

Just wanting to share a website that has a number of self help workbooks for people coping with health conditions and related depression, stress and anxiety. The site is www.comh.ca and has many download-able worksheets.

Huntington's disease Team Hope Walk

It's that time of year again to dust off your walking shoes and get out to support the HDSA's Team Hope Walks in states across America.  You can set up your very own fund raising page to help raise money for the HDSA.  It's quick and easy to set up.  To sign up for a walk or to create your very own fundraising page visit the HDSA website and click on the 'Join Team Hope' logo.

http://www.hdsa.org/

jam

Vietnam Veterans and Parkinson's disease

Everyone's probably already see this but there has been some good news coming out of the VA this week regarding Vietnam veterans and service connection.  See the link below for some details.

http://www.stripes.com/news/us/with-new-ao-rule-out-va-readies-spigot-of-payments-1.116955

jam

Annual Parkinson's disease Symposium

The Parkinson Center of Oregon is putting on our 27th annual symposium!  We are excited to have a great line-up of speakers:

Our featured speakers are Dr. Ergun Uc from the University of Iowa,

Dr. Ergun Uc

Dr. Martinedale from Oregon Health & Science University hospital,

Dr. Robert Martindale

and Dr. Charlie Meshul, PhD from Oregon Health & Science Univeristy hospital.

Dr. Charlie Meshul, PhD

For more information follow the link:

http://www.ohsu.edu/xd/research/centers-institutes/neurology/parkinson-center/news/options-opportunities.cfm

jam

New book for caregivers

I recently heard of a new book for working with caregivers by Linda Edgar called " Caregiving: Good Coping in good times and bad". I have not yet read it but it was recommended by a colleague who works with cancer patients.

Co-pay assistance for PT/OT/ST

Does anyone know of any organizations out there that help patients with co-pay cost for PT/OT/ST?  I met a patient today that is having trouble paying the co-pays for his LSVT appointments.

jam

PD, Depression, and Pharmacology

Prevalence estimates of Depression in PD is highly variable; studies indicate these rates vary from 7-76%.  But most providers would probably place the actual prevalence towards the latter end of that range; probably anywhere from 50-70%.

http://neuro.psychiatryonline.org/cgi/content/full/17/3/310

We actively screen for indicators of depression in our clinic using the Center for Epidemiological Studies-Depression (CES-D) scale.  If they haven't already done so our providers then have the conversation with our patients about the issue of Depression and PD.  First-line treatments are usually pharmacological; the SSRIs, SNRIs, and occasionally the Tricyclic antidepressants.  Depending on the circumstances they will then refer the patient to see me.  We also refer patients for counseling, particularly if they are not getting much symptomatic benefit from pharmacology.

A 2010 study in the Journal of American Medicine seems to call into question the effects of pharmacology on mild to moderate depression.  This is very interesting considering the wide-spread use of pharmacology in the treatment of depression.

http://jama.ama-assn.org/cgi/content/short/303/1/47

Another interesting factor in the treatment of depression are the recent findings that pharmaceutical companies were selective in their publishing of articles demonstrating the effects of drugs to treat depression.

http://www.nejm.org/doi/pdf/10.1056/NEJMsa065779

Depression has been found to have the greatest influence on quality of life in PWP, making the role of the SW in working with PD that much more important.

http://jnnp.bmj.com/content/69/3/308.full

jam

Parkinson's disease Social Work Survey

Gladys Gonzalez-Ramos and Elaine Cohen have updated their survey on the role of Social Work in Parkinson's disease and are asking all PD Social Workers to help out by filling out the updated survey.  If you haven't already filled out the survey, you can do so online by going to this site:

http://www.surveymonkey.com/s/53NVJBR

There are only a few days left to complete this important survey. 

jam

Social Relationships & Mortality Risk

If you are like me when someone asks you what comes to mind when you think about risk factors for early mortality you probably think about factors such as smoking, diet, inactivity, obesity, or possibly one's genes. 

A colleague of mine recently introduced me to a great study that sheds light on another factor that was found to be a comparable or an even greater risk factor for mortality than the risk factors we typically think of:  Social Relationships.  The importance of social connectedness and social relationships cannot be understated with PD and with carers of people with PD.   Isolation due to depression, apathy, anxiety, or just due to having PD is a common problem for people with PD and their carers. 

It is well known that social connectedness provides a psychological buffer to chronic stress, depression and anxiety.  This meta-analytic study illustrates how social connectedness and social relationships also provide a health buffer to early mortality.    A take away quote from the Conclusion section of the article is telling:

"Data across 308,849 individuals, followed for an average of 7.5 years, indicate that individuals with adequate social relationships have a 50% greater likelihood of survival compared to those with poor or insufficient relationships.  The magnitude of this effect is comparable with quitting smoking and it exceeds many well-known risk factors for mortality (e.g., obesity, physical inactivity)."

As Social Workers we are the professionals that have the time, skills, and expertise to assist patients and families in becoming and staying more socially connected.

To read the entire article or download the PDF:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2910600/

jam 

Helping PD patients apply for Social Security Disability.

We are all probably pretty familiar with assisting and supporting people with PD when they have made the decision to apply for federal disability insurance.  Each case varies, but when I assist patients and families with this usually daunting task I typically do the following things in assisting them:

1. Interview the patient (and spouse if possible) to find out more about their occupation, their symptoms, and how their symptoms impair their ability to work.  I utilize the PAN work-related disability assessment form during this process.
2. Provide education about the federal social security disability insurance process and timelines here in the U.S. I also discuss health insurance options.
3. Work with the patient's neurologist to write a letter detailing what PD is and what symptoms the patient is experiencing.  I use the criteria language that the SSA uses to describe PD in their listing of conditions.
4. If appeal is needed, refer the patient to a good, local SSDI attorney.

I'm curious to know what you all do to support patients and families in this process.  Does anyone else write letters in support?  Do you work with neurologists to ensure appropriate language is used in the chart when documenting the neurology appointments?  What have you found useful in helping patients and families with this?

jam

First of it's kind national neurorehabilitation "helpline"

The American Parkinson Disease Association (APDA) in partnership with Boston University's Center for Neurorehabilitation has launched a toll free neuro-rehab "helpline."  People living with PD and their loved ones (as well as professionals) can call and speak directly to a licensed Physical Therapist.  Patients can call to get information about PD and exercise, information about programs in the caller's area, and general information and resources.  Social Workers and other professionals can call to get information on the latest evidence-based management of PD symptoms through exercise and rehabilitation interventions. 

I have not yet tried this service out but it seems like it could be a good service. 

Here's the link:  http://www.apdaparkinson.org/userND/index.asp

jam

This is a great idea...thanks for setting it up. Sue (in Philadelphia)

Research Roundtable and "Shake It Till We Make It"

Brian Grant will be putting on another great PD fundraising event in partnership with the Michael J. Fox foundation here in the Portland area.  The inaugural Shake It Till We Make It should be a great event attended by many.   
http://shakeittillwemakeit.com/


Also, in partnership with the Michael J Fox Foundation, the OHSU Parkinson Center of Oregon will be hosting a research round table for patients and the general public, and will feature a panel of experts discussing cutting edge research and findings on Parkinson's disease. Special guest appearance by Brian Grant! The event ...is free, but registration is required. Call 503 494-7231 or email pco@ohsu.edu to register and for more information.
http://www.ohsu.edu/xd/education/schools/school-of-medicine/departments/clinical-departments/neurology/news/neurology-calendar.cfm?trumbaEmbed=view%3Devent%26eventid%3D90359854


Have a great weekend everyone.


jam

Caring for the Caregiver Conference 9/29-10/1

At MCG, we are trying to focus a little more on the caregiver this year. Here is a link to an upcoming event that you might be interested in:
http://www.clemson.edu/fyd/caregivers.htm

Amanda

Info on Music Therapy

A couple of the support groups in my area (GA/SC border) are interested in learning more about music therapy. We have few therapists and resources for the discipline around here. Does anyone have any suggestions for what we can do without the direction of an experienced therapist?

Social Work in Washington D.C.

I haven't posted in a bit because I'm on vacation and currently in Washington D.C.  Speaking of Washington D.C., I just learned that there is a Social Work Library in Washington D.C.  I did not find much information on it but here is where it is located:

http://www.google.com/#hl=en&q=Social+Work+Library+Washington+D.C.&aq=&aqi=&aql=&oq=Social+Work+Library+Washington+D.C.&gs_rfai=&fp=d706bc2a5dba00d4

I believe that the NASW is also headquartered here in Washington D.C.  A little bit of research also revealed that Jane Addams was offered a burial plot in the National Cathedral next to President Woodrow Wilson.

http://en.wikipedia.org/wiki/Jane_Addams_Burial_Site

Happy summer everyone!

jam

Depression and Parkinson's disease

Depression in Parkinson's disease is a very common symptom.  The combination of PD and Depression and the associated cluster of symptoms can make it especially difficult to effectively treat Depression in PD.  Recent research is strongly suggesting that in many ways Depression can be considered a disease of the brain, meaning the depressed person with PD has 2 neurological disorders not just one!  In one study researchers measured the size of the hippocampus in patients with and without depression and found that those who suffer from depression demonstrated marked hippocampus shrinkage over time.  Further, their research indicated that early and successful treatment of depression with anti-depressant medication prevented this shrinkage from occurring and in fact in some cases could stimulate brain cell growth.  For more information about this and other studies related to mental and emotional health issues check out the great PBS series "This Emotional Life:  In Search of Ourselves.....and Happiness."

 Check out the website at:

http://www.pbs.org/thisemotionallife/






jam

Great short video about PD

At Parkinson's Resources of Oregon we were involved with the creation of this wonderful video. It was made for our 30 year anniversary celebration. You are more than free to share it with anyone who could use a bit of feel good empowerment. It will bring a tear to your eyes.

Watch "One Safe Place" at www.youtube.com/ParkinsonsResources

Sarah Schurr, LCSW

In honor of Mr. Nathan Slewett

I did not know him, but Mr. Nathan Slewett, a tireless advocate of the PD community has passed away.  Mr Slewett was "a tireless volunteer leader and supporter of the National Parkinson Foundation (NPF) and has left an indelible mark on the lives he has touched through his personal philanthropy."  You can read the full article about Mr. Slewett's support of the NPF at the link below. 
The Parkinson's disease community could definitely use more Nathan Slewetts.

http://www.parkinson.org/getdoc/b2ba6de9-5029-421b-9cc8-a0631ab809bd/default

And here is a short video about Mr. Slewett's service to the Parkinson's disease community:

http://www.youtube.com/watch?v=597aJwwLDN0

jam

support for teens of parents with Parkinson's Disease

Recently I have had a number of patients diagnosed with PD who have teenage children. I am wondering if anyone has any resources (ie. books, articles) that would be written for the teens themselves to help them deal with issues that result.
ebook

New tool to assist patients and families in applying for SSDI.

Parkinson's Action Network (PAN) has created a brand new form that can be used by the person with Parkinson's (PWP) when they are getting ready to apply for Social Security Disability Insurance.  The form is set up in a simple, straight forward manner and it can (should) also be used by physicians as a guide to help ensure that important medical information makes its way into the patient's medical document. I like the form because it is not too long and does not require the patient or family to write a great deal to complete the form.  Here is a link to the PAN website and the form.

http://www.parkinsonsaction.org/pdform

jam

HDSA Convention 2010, Raleigh, NC

I just returned from the HDSA Convention in Raleigh, NC.  What a great group of people!  I was very moved by the people I met, especially the families living with Huntington's disease.

It was great to be able to meet with other Social Workers from across the country who are also working everyday to help the families who are living with this very difficult disease.

The picture above is of the "candlelight" ceremony in remembrance of the many people we have lost due to HD as well as in honor of those who are fighting on and working with HD.  It was a very powerful and moving ceremony, something I will not soon forget.  More to come soon!

jam

Learned resilience.

There have only been a few decades of research on the topic of resilience and most of this has been in the area of pediatrics growing up in hazardous conditions or as survivors of trauma. Much of the research discusses factors of resilience for children as they develop.

What about adults? If an adult is not predisposed to these factors of resilience or did not develop these factors due to trauma(s), can resilience be learned later in life. New research is suggesting that adults can learn new pathways to resilience and in fact many adults can find a multitude of pathways to resilience.

George A. Bonanno, PhD out of Columbia University, has done quite a bit of work on resilience and coping with grief and trauma. His research is pointing to the fact that not only can resilience be learned, it is in fact quite common.

Here is a link to George Bonanno's website at Columbia:

http://www.tc.columbia.edu/faculty/index.htm?facid=gab38

This leads to the question of best methods to develop or enhance resilience in Care partners of PD, particularly for care partners that have been in the caring role for many years. I believe Cognitive Behavior Therapy is a method that can help enhance resilience in the face of adversity.

What do other Social Workers working in PD find is effective in assisting care partners or PWPs enhance their resilience?

jam

Group CBT for Caregivers of Parkinson's disease

Now that our young persons with Parkinson's disease symposium, Insights and Inspirations is done my focus has shifted to developing a curriculum for a Cogntive Behavior Therapy (CBT) group for carepartners of PD. I am currently co-leadig a CBT group for people with PD, but we have never offered such a group for the spouses of PWP.

The curriculum definitely needs to be adjusted to address the often unique needs and issues that carepartners of PD face. I have just begun altering the curriculum and I expect it to take several weeks. Thus far I am taking the core concepts of CBT and adjusting the curriculum content to include Resilience and how to enhance this, in addition to Depression and Anxiety. I have a feeling that barriers to change will be an area that will be included as well.

I would be curious to hear if any other PD social workers are working on a similar project.

jam

Insights & Inspiration

We had a great turn out for our Young Person living with Parkinson's symposium, Insights & Inspiration. Former Trailblazer Brian Grant had some great welcoming remarks to get us started and we had some great speakers. We had about 100 people show up and what a great group of folks they were! Our speakers and their various topics seemed to be well received. We alternate this symposium with our Caregiver Conference, so it will be two years before we have another one.

The next major project that I will be tackling is the development of a Cognitive Behavior Therapy psycho-education/therapy group tailored for care partners of people with PD. This should be a very challenging but very worthwhile project. We have had some initial interest from care partners and we expect this to only grow. There is very little in the way of research that has looked at CBT with carepartners of PWP, and none that I know of that looks at CBT in a group format with carepartners of PWP. If anyone has had any experience in using CBT with carepartners of PWP I would be very interested in connecting with you.

jam

Young People w/Parkinson's disease symposium

Just a quick note. I wanted to make sure I post the link to the young people with Parkinson's disease event that I have put together. It should be a good event and it takes place next weekend.

www.ohsu.edu/xd/research/centers-institutes/neurology/parkinson-center/news/events.cfm

jam

Foremost

For some time now I have been wanting to put together a blog focused on the role of the social worker working with people with Parkinson’s disease (PWP) and their families. A site where other social workers interested in Parkinson’s disease (PD) can come to share their ideas, their successes, their struggles, their stories, or to pose a question as they work to help patients and families live well with PD. It is likely that we face similar challenges in our work, and it is unfortunate that we often work within silos and do not share what works and what does not. So this will be the foremost function of this site.

I have been at national conferences and trainings with other social workers and I consistently leave these trainings and conferences with two shared sentiments:

1. What a great group of Social Workers we have working in the area of Parkinson’s disease and

2. We need to stay regularly connected and share our ideas and resources.

To that end, it is my hope that this site serves this purpose; and that it leads to better service for our patients and families. With that I leave you with one of my favorite quotes from the mother of Social Work:

"The good we secure for ourselves is precarious and uncertain until it is secured for all of us and incorporated into our common life." -- Jane Addams

jam