Mindfulness

While mindfulness practice has been around for a long time, it is really gaining popularity. So I have been on the search for simple materials to introduce mindfulness to my patients.

I came across some good information on mindfulness and chronic illness on the Northwest Parkinsons Foundation website (nwpf.org) I found it under the wellness tab, then under persoanl healing, then personal healing tips and the specific article is called Silence the Mind with Mindfulness Therapy. If anyone else has a mindfulness resource, please share!

The start of December tends to be the start of a busy time for many. Perhaps we can all benefit from some mindfulness practice!

Best of the holiday season to all!
Elaine

Aware in Care project

Hi there
Just heard from NPF that the www.awareincare.org site should be live November 18th!
Check it out!
Elaine

2011 NPF Center Leadership Conference

The NPF Leadership conference was recently held in Chicago with great representation from Social Work! In addition to the speakers and poster session, the social workers had the opportunity to meet over lunch to share information about the social work role at their centres as well as an exchange of ideas.

NPF also launched the Aware in Care campaign (designed to help people with PD get the best care possible when hospitalized) and I would encourage all of you to look at the website (www.awareincare.org) to learn more about it.

Janis Miyasaki, neurologist at Toronto Western Hospital Movement Disorders Center, presented on Palliative care and PD with some new and interesting ways of looking at advanced PD. Her power point may?? be available on the NPF website.

If anyone else who attended would like to share a highlight from the meeting, please do!

Elaine

PSP caregiver support

Hi everyone,
I am working with a caregiver of a patient with PSP and he is looking to connect with other caregivers of PSP. He (and I) have done some internet searching to find a chat room or online support but have not found anyting. Does anyone know of such on line support for caregivers of PSP patients?
Thanks
Elaine

DBS Support Group

Thanks, Elaine, for taking this on. It is certainly worthwhile. I have obtained some helpful information from this site.

Now, a question to all the social workers out there..........does anyone offer a support group for DBS patients? I have facilitated a DBS Support Group since January, 2007. I am curious to hear about other such groups, especially in Canada.

The fall is a time for new beginnings

Hello everyone,
Just a note to say I have agreed to challenge myself and try to follow in the footsteps of Jason's wonderful work on this blog. As I am only somewhat technilogically capable, I am spending a bit of time learning how to manage the blog and feed interesting articles etc.

I am also wondering if anyone is going to the NPF conference in Chicago at the end of October. If so, I would like to suggest the social workers together at lunch perhaps on Friday and have a chance to share information and ideas.

Send me a note at elaine.book@vch.ca if you are going to be there.

Until the next post,
Elaine

It has been a pleasure

It is with mixed emotions that I write this blog entry.  I have decided to take a new job in Palliative Care and will be leaving the Parkinson Center of Oregon on 05/05/11. I am very excited about this new opportunity but it is definitely difficult to leave the Parkinson Center of Oregon and the greater Parkinson community. It has been a pleasure and a privilege connecting with you all at national conventions and learning about all the great programs you offer families with Parkinson's disease. I do not know what my future availability will be to manage Neurology Social Worker, so if anyone would like to take over administrative duties for this blog, please send me a message through our google group.

It has been a pleasure.

Jason Malcom

Sign the Global Parkinson's Pledge

In support of Parkinson's Awareness Month, our clinic is encouraging patients to spread the word about the Global Parkinson's Pledge. We have created and displayed a poster briefly detailing what it is about and how to be involved. Every little bit helps! And we have fresh tulips in the waiting room!

April is Parkinson's Disease Awareness Month

Social work month is winding down (Happy Social Work Month to everyone!) and tomorrow we will be on to Parkinson's disease awareness month for April.  In honor of PD Awareness Month I thought it would be a good idea for everyone to post the activities and programs you are involved in to help raise awareness about PD.

In April Here at the Parkinson Center of Oregon I am co-facilitating an eight week group for spouses living with someone who has PD called the The Mindset of Healthy Caregiving.  This group has some elements of CBT and is based on the EduPark program out of Europe. This program focuses on skill building to live well with PD (either as the person with PD or as the caregiver).

On April 14th we are putting on our Caregiver Conference, a night set up just for family caregivers of PD.

And finally throughout the month of April and all of spring we will be promoting our PD walk called Paws for a Cause: A benefit for Parkinson's disease, which takes place in July.

It will be a busy month, that is for sure. I am frequently inspired when I learn about the programs other PD Social Workers are involved with at their centers or chapters. I am proud to work with such a great group of  Social Workers and we all do so much to help families throughout the year. Take a moment and let your colleagues know about the great programs you offer at your center or chapter.

Jason

Placebo to treat depression?

According to some new research out of Austria, 75% of "healthy" people would be okay with receiving a placebo to treat depression. This whole topic is rife with ethical concerns, but it is interesting that 3 out of 4 people believe that they would be okay with taking a placebo to treat a very serious condition like depression. It also speaks to the power of the placebo effect and some research that calls into question the possibly overestimated efficacy of anti-depressants in treating depression.  Interesting as well, is the fact that the researchers polled "healthy individuals" about this.  These are people who have presumably never been depressed and so I would think are not in a very good position to say they would be okay with receiving a placebo to treat their depression.

Here is a link to the article:  Placebo to treat depression?

Jason

Advanced Care Planning

British Columbia is putting alot of effort into educating health care workers and the public about the advantagese of advanced care planning. A fantastic workbook has been created to help people have conversations about future health care decisions and to think about choices in care. I would recommend looking at www.fraserhealth.ca and search "My Voice Workbook".
Elaine

National Sleep Awareness Week

Who knew it was National Sleep Awareness Week?  Who even knew there was a National Sleep Awareness Week?  I know I didn't.

More light is being shed on the importance of sleep and this gentleman from the Harvard Business Review believes that sleep is more important than food.  I know I am one who used to skimp on sleep in favor of other activities, and I was worse for it.  I no longer skimp on sleep (usually), however many of our PD patients and their spouses are not so lucky.

Sleep is More Important than Food

Jason

HDSA National Convention, 2011

It's a little ways off but never too late to start planning to go if you can make it.  The Huntington's Disease Society of America's yearly national convention is a great event.  If you haven't been to one before I highly recommend that you try to make it.  The convention is attended by many people in the Huntington's community including families and the leading HD experts.  This year's convention is in Minneapolis.  Click the link below for registration and other information.

HDSA National Convention--2011

Jason

Peer Support: Effective treatment for depression?

A new meta-analytic study is providing yet more evidence for the value of social connectedness.  The analysis suggests that peer support is just as effective as CBT in the treatment of depression.

Peer Support in the treatment of depression

Jason

Parkinson's specific form for VA PD service connection claims

I cannot remember if I have already posted this or not, but there is a Parkinson's disease specific form veterans who served in Vietnam should fill out if they are pursuing service connection for PD and probable Agent Orange exposure. 

Here is the link:  PD Disability Benefits Questionnaire

I usually help the veteran fill the form out and expand on the information either via a letter or in the comments section of the form, as the form itself is not very descriptive. In addition to this I always have the veteran get connected with their local Veteran Service Officer (VSO) to help with the applicaiton process. 

Do many of you work with Vietnam veterans who inquire about service connection benefits for their PD?

Jason

Berries and PD

Some interesting research on incorporating berries into your diet leading to a decreased risk of developing PD.

Berries and PD

Jason

Dopamine Agonists and Compulsive Behaviors

It seems there has been an increase in news stories of late about  dopamine agonists (DA) and their side effects, particularly compulsive behaviors. Two such stories recently have featured men with PD who are now suing the makers of these drugs because they developed compulsive behaviors that lead to financial or other loss in their life.  Here is one of the stories out of Scotland:

PD drug and gambling addiction law suit

Though infrequent, I have seen a handful of families in clinic that have experienced some level of financial ruin due to compulsive spending or gambling after beginning a dopamine agonist. Our clinicians do a great job of counseling patients AND spouses about the risk for side effects associated with these drugs, but a handful of patients experience these very troubling compulsive behaviors anyway and often lack insight into their behaviors. These compulsive behaviors nearly always cause hardship, loss, and grief for the patient, the spouse, and their relationship. Our clinicians are careful to assess for the presence of these troubling side effects at follow-up appointments with both the patient and the spouse, but due to the nature of the compulsive behaviors (often secretive) these compulsive behaviors can go on for some time with detection by the spouse or provider.

What is the Social Worker's role in counseling patients and spouses about the risks of these drugs before they start taking them and as they are taking them?  How much should providers and Social Workers assess for the existence of these compulsive behaviors beyond discussion of the matter in clinic?  There is no doubt that many PD patients can get substantial relief from some of their PD symptoms with the use of these drugs. But the prevalence rate of the terrible side effects associated with the use of DAs seems to be high enough that it begs the question of weighing the risk vs. the reward in taking these medications. There are other side effects associated with these drugs that are more common than compulsive behaviors (fatigue) that are troubling to PD patients as well.

I would love to hear others' thoughts on this matter. Specifically: 

• How much do your providers use these DAs in the treatment of PD?
• What is the prevalence rate of the compulsive behaviors side effect in the use of DAs?  
• How frequently do you see the terrible side effects of compulsive behaviors in the use of these drugs?  
• And ultimately how can we as social workers intervene to assist families with this issue?

Jason

Book on swallowing in PD just for Caregivers

Our Nurse just passed on this resource for caregivers dealing with swallowing difficulties in PD and other medical conditions. I have not read this book yet but our center will be getting a copy soon. Has anybody else encountered this book yet?

Swallow Safely

jam

Inside the Battle to Define Mental Illness

By now we have probably all heard of the American Psychiatric Association's (APA) effort to revise the DSM-IV to create the DSM-5. 

I came across a very interesting article on the internal battle currently going within the APA regarding this revision process and about the entire DSM system of diagnosing in general.  This is a must read for anyone diagnosing and/or working with patients/clients suffering from mental illness.  It will be very interesting to see how this all plays out in the next few years. 

Link:  "Inside the Battle to Define Mental Illness"

Jason

VA finalizes regulations to for Agent Orange and service in Korea.

Some more good news coming out of the VA for veterans who served in Korea from 1968 to 1971 and who were likely exposed to Agent Orange and who later develop Parkinson's disease.

Jason

Allied Team Training for Parkinson (ATTP)

The next Allied Team Training for Parkinson’s will be held in beautiful Chapel Hill, NC from March 9-12, 2011.

This is an excellent 4-day training on everything Parkinson's disease.  It is intended for professionals both somewhat experienced and new to the field of Parkinson's disease. This training is intended for SWs, PTs, OTs, SLPs, Music Therapists,etc, and is lead by experts in the field.  There is a targeted training just for the Social Worker as well.


I highly recommend this training to anyone working with Parkinson's disease.


Link to register:  Register Here for the ATTP


Jason

Baby Boomer Caregiver Use of Technologies and Social Media Increasing

"Is e-mail a good way to communicate with you?"  "Have you used Google before?"  "Are you familiar with navigating the Internet?" 

If you are like me, you have asked similar questions of your patients and their care-partners. Increasingly, I rely on the Internet to find, locate, and print materials for families when helping them get connected to resources. An area of interest of mine is harnassing the power of the Internet and Social Media in the field of Social Work to better serve our patients. This last year, our center has also become more involved in utilizing social media to provide some outreach and education to our patients and families. Given that we serve a mostly older population, I have often wondered what percentage of our patient and care-partner population make use of the Internet, e-mail, and Social Media to obtain information or help them select resources.

I know when I ask my patients and care-partners the above questions, most seem to have an e-mail address and feel comfortable using it, but I cannot comfortably say the same about their responses to the Google and Internet questions. Generally speaking, I find the older the patient, the less likely they will feel comfortable utilizing the Internet, Social Media or e-mail to communicate or obtain information about resources. Given that our society is so heavily dependent on the Internet and social media (and growing more so everday) I think Social Workers provide an increasingly vital link to these e-sources of information for our patients and their care-partners. 

On January 10th two studies were released that looked at Baby Boomer caregivers and their use of social media and the internet.  The studies reveal some pretty interesting data. For instance, when looking at Internet usage by care-partners one of the studies revealed that "70% reported having used the Internet for caregiving related information or support..." I would not have guessed this number to be so high. 

Here is the link to the article that discusses the two studies:  Caregiver use of technology

I believe Social Workers can play a very important role in helping our patients and their care-partners make use of the Internet and other technologies. One thing that comes to mind is to offer a "Navigating the Internet" course for our patient and care-partner populations. I have also considered creating a website set up specifically for caregivers that is a "one-stop shop" for Parkinson's disease/caregiver-related resources.

I would love to hear from any other social workers and mental health professionals about what you are doing in this area for your patient and care-partner populations.

Jason

Light Therapy for Older Adults

Researchers have found more supportive evidence for light therapy as an effective treatment in not only Seasonal Affective Disorder in older adults, but depression as well.

Light Therapy

jam

Bikes used to diagnoses type of Parkinsonism?

Riding bicycles is near and dear to my heart so I was immediately interested in this article about some research being done with Parkinsonian patients who ride bicycle.  The researchers are looking at Parkinsonian patients' without a definitive diagnosis and their ability to ride a bicycle (or not) as a helpful diagnostic factor to determine if patients have iPD or PD+, or other type of PD.

Link:  Bikes to help in diagnosing PD

Jason