Parkinson Social Network

Research Means Hope

American Parkinson’s Disease Association (APDA)
Virginia Education Day – September 28, 2019

These are my notes from the third session which featured an Update on Research and Benefits. I’m sorry they’re so brief, but I’m not that confident explaining clinical information, so feel free to Google the key words and you’ll find lots more information.

Wearable technology can help people with gait and freezing. When it detects that the wearer is freezing, it can give an auditory signal to prompt the person to resume walking.
When experiencing anxiety, try focused breathing. One example is to inhale slowly and deeply through your nose (smell the flower), then exhale slowly with your lips pursed slightly (blow out the candle). It was about this time that my friend, sitting next to me, told me that she is finding a weighted blanket helpful.
Eye tracking is being trialed to diagnose Parkinson’s.
Virtual reality offers benefits with walking and physical therapy.
Studies are looking at the impact of inflammation on the gut and how it affects Parkinson’s.
There is research into early biomarkers as well as genetic markets for early diagnosis.
The Michael J Fox Foundation is trialing Repetitive Transcranial Magnetic Stimulation (rTMS).
Stem cell transplant has not been approved in USA and only improves symptoms – it is not a cure.
With regards to CBD oil, studies are weak because potential side effects are similar to what people with Parkinson’s are already living with – e.g. fatigue.
For more information on trials check out:
www.ClinicalTrials.gov  and  MJFF Fox Trial Finder

Bob Pearson, a local Parkinson advocate from Northern Virginia, spoke about Parkinson’s research. He told us how when you participate in research it’s like the old man who plants the tree even though he’ll never sit in it’s shade. You may not benefit directly but you may help others. It costs about $50,000 a year to treat a person with Parkinson’s with only about $200/person a year spent on research. Human volunteers are needed for studies – a lack of volunteers slows the chance for a cure. Bob advised us that we should never pay to be in a research trial because it’s not ethical.

If you’re adverse to participating in a trial involving medications or therapies, Michael J Fox Foundation offers observational studies – no medications or therapies involved. More information at www.michaeljfox.org/join-study. I’d also like to add that George Mason University’s Department of Rehabilitation Science is involved in various movement studies. I’ve had lots of good feedback from people who have benefited from participating. Clinton Wutzke from GMU visits our cafes every year to keep us up to date on what’s new. You can contact him at  703-993-1903 or  cwutzke@gmu.edu.


Hospitals and Parkinson’s
We’ve been talking to local support groups this year about staying safe in hospitals, so this article from Parkinson’s Life caught my eye. Are UK hospitals safe for people with Parkinson’s? Click here to read it. The experiences in this article sounded familiar to me, and I’m sure to you, too. Parkinson’s UK has a campaign called, Get It On Time. Sounds like something that would be helpful for us here in the US! Click here to read more about it.


Here’s some information about a helpful resource available from Fairfax County. 
The Human Services Resource Guide
is available on the Fairfax County website and gives immediate 24/7 access to detailed information on thousands of nonprofit and government services available to Fairfax County residents. Listings include detailed service descriptions, eligibility requirements, locations (maps and directions), and contact information.
There are resources for food, housing, financial assistance, medical/health/dental, domestic violence prevention, shelter, employment, clothing/household, transportation and veterans.
Click here to access the guide.


New resources for newly diagnosed
Parkinson’s Foundation (the national foundation based in Miami) has some great educational resources, some that we share in our PARKit. They have a new resource for newly diagnosed people, including a free kit you can download. Parkinson.org/NewlyDiagnosed


Thank you Cori, for sharing this information with us!
Caregiver Peace Corps
There are efforts to develop a national volunteer care corps for caregivers to help older Americans age in place. From the article:
This fall, project leaders will invite organizations across the country to submit proposals to serve “non-medical” needs of older adults and younger adults with disabilities. Next spring, up to 30 organizations will get 18-month grants of $30,000 to $250,000, according to Juliet Simone, director of national health at the Oasis Institute.
Click here to read the entire article on the Kaiser Health News website.


More Music
Last week I wrote about two local music therapy events. Then I received a newsletter from Capital Music Therapy Services that led me to this article – Using Music At Home: Music and Mindfulness.
Click here to read it. It reminded me of our caregiver appreciation luncheon and our speaker Martha Brettschneider who will be speaking about mindfulness . . .


Caring for our Caregivers
PSN’s annual caregiver’s appreciation luncheon is filling up fast!
Click here for details and to register (scroll down on the page) on our website, or click here to download the flyer and share with your Parkinson family caregiver friends.


Cafe Ashburn – slight changes for our October 23 meeting
There is a slight change in time for our cafe this month. We will meet from 11:30 am – 1:30 pm. This is because we are joining a local networking group, Loudoun Senior Interest Network, to hear the new Inova Movement Disorders Specialist, Dr. David Whitney, give his presentation on recent updates in Parkinson’s treatments.
Please RSVP today so I can give Waltonwood the numbers to help them plan.

I hope this newsletter is helpful and we’ll see you Out & About soon! This week we’ve got a two cafe week with Cafe Alexandria this morning and Cafe Ashburn on Wednesday. As always, details are below!

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

The Magic of Music

The Magic of Music

The graphic above was from an interesting article, Using music therapy to stimulate the brain can help address conditions ranging from PTSD to Parkinson’s. Click here to read the article on the Inlander.com website. Scroll down for details about music therapy for Parkinson’s offered in northern Virginia.

American Parkinson’s Disease Association (APDA)
Virginia Education Day – September 28, 2019

Here are my notes from the second session which was a discussion on
Understanding, Managing & Living with Parkinson’s Disease.

This session was moderated by Debbie Dellinger, NP with PADRECC in Richmond. PADRECC stands for Parkinson’s Disease Research, Education and Clinical Centers, and is part of the U.S. Department of Veterans Affairs. On the panel there were three neurologists, a neurosurgeon and Armond Reich, APDA/Hamptom Roads Chapter President and Caregiver. For more information on the speakers, please click here.

Here’s a comment I thought was interesting –
Humans are the only species with Parkinson’s.

Diagnosis of Parkinson’s
Primary care providers usually diagnose Parkinson’s. It can take 4 years to see and be treated by a neurologist.
Why see a neurologist? For an accurate diagnosis, and because a neurologist will be familiar with new therapies and can integrate patients into multi-disciplinary team care.

Not all that shakes is Parkinson’s.
Another memorable comment!

The best way to diagnose Parkinson’s is to talk to patients and try to understand them with the help of a good history, physical exam, and the help of care partner input.
Something that neurologists consider when making a diagnosis is, are the symptoms Parkinson’s or mimics? Mimics may look like Parkinson’s but are not Parkinson’s.
There is no blood draw or scan to help diagnose. There is a DaTscan, but it doesn’t differentiate between Parkinson’s and mimics. You can find more information about the DaTscan on the APDA website – click here.
As the disease progresses, changes may lead to Parkinsonisms.
Neurologists will probably order more therapy and exercise than lab results.

Dementia
The timeline for dementia is not predictable and is an active area of research.
Parkinson’s has it’s own fingerprint.
Bradyphrenia is the slowing of mental processing. Memories are not forgotten, just slow.
Is it possible that dementia can be reversed? Possibly, because it may be caused by low levels of B12, thyroid issues, depression and lack of sleep. Neuropsychiatric testing may help to pinpoint the cause. It is helpful to exercise the mind and the body.

What are medical and surgical options for treating Parkinson’s?
Medications treat the symptoms but don’t halt progression of the disease. Adjustments will always be required as the disease progresses. If the symptoms aren’t bothersome, there may be no need for medications.
Medications are tailored to the symptoms but cost can be an issue, and it is important to take other medications that interact into consideration. Different manufacturers have different formulas and some people can be sensitive to the manufacturer. Over time, other medications may be required.
The doctor should ask about non-movement symptoms such as constipation, mood, and drooling.

Who is a candidate for Deep Brain Stimulation (DBS) and when?
A patient who is 4 years past diagnosis, based on his/her goals and expectations for quality of life. Also if tremor is not being helped with medications. DBS will not directly improve gait and balance. There are new systems that can self-adjust, with more innovations in the works. If you are interested, it is helpful to talk to patients who have had it done.

Suggestions for living well with Parkinson’s
I’m sure you’ve heard this one before . . .exercise and therapy!!!
If you get stiff when exercising – be patient with yourself.
When you’re looking for a physical therapist, be sure to choose one who knows how to work with people with Parkinson’s.


The Inova Narang Foundation Active Living and Fitness Program is offering two new classes for people living with Parkinson’s and other movement disorders. I’m so excited about the singing class and I love the name – Neuro Notes! To gauge interest, they are initially offering two free classes with the intention of starting regular classes for a fee in the new year. If you are interested, and unable to attend either of the classes below, please send me an email at Sonia@ParkinsonSocialNetwork.org, and I can keep you updated about future classes.

Neuro Notes: Music for the Mind
free 90 minute trial session
Thursday, November 7 or Thursday December 5
from 12:30 pm – 2:00 pm

At: 8100 Innovation Park Drive, conference Room N4, Fairfax, VA 22301
Singing  |  Rhythmic Exercises  |  Music Listening
Singing can enhance voice volume and quality as well as improve respiration and swallowing. Music may also improve mood and cognitive function. The group music experience is also a great way to socialize!
Instructor: Toni Sweitzer, MMT, MT-BC, Co-founder and Creative Director of A Place to Be.
Questions? Contact myinovawell@inova.org.
To register, click here, then scroll down to Exercise for Life, and click on the down arrow next to Neuro Notes.

There is also a trial Parkinson’s dance class underway. One class has already been held, but if you are interested in attending the rest of the classes in this session, or in future classes, please email me at Sonia@ParkinsonSocialNetwork.org. I’ll connect you with the organizers.
Dance for Parkinson’s
October 9 – November 4
Wednesdays from 11:00 – 12:00 pm

At: 8100 Innovation Park Drive, lower level, Fairfax, VA 22301
Instructor: Lucy Bowen McCauley, Certified Dance for PD® Teaching Artist, Bowen McCauley


Here are details for another Parkinson’s music therapy class. You may remember when Capital Music Therapy Services held a class in late August.
Saturday Song and Social – Parkinson’s Music Therapy Group
Saturday, October 19, 4:30 pm – 5:30 pm

At: Capital Music Therapy Services
10560 Main St., LL-12, Fairfax
Cost: $20 per person paid on the day of the group. Cash or check. Spouses attend for free!
Registration deadline: Friday, October 18
For details RSVP: anna.piper@capitalmts.com or click here.


Caring for our Caregivers
PSN’s annual caregiver’s appreciation luncheon is filling up fast! Click here for details and to register (scroll down on the page) on our website, or click here to download the flyer and share with your Parkinson family caregiver friends.


Cafe Ashburn – slight changes for our October 23 meeting
There is a slight change in time for our cafe this month. We will meet from 11:30 am – 1:30 pm. This is because we are joining a local networking group, Loudoun Senior Interest Network, to hear the new Inova Movement Disorders Specialist, Dr. David Whitney, give his presentation on recent updates in Parkinson’s treatments.
Please RSVP as soon as possible so I can give Waltonwood the numbers to help them plan.

I hope this newsletter is helpful and we’ll see you Out & About soon! It’s Cafe Fairfax this week and Courtney is coming to see us again to talk about emergency preparedness. Hope to see you there!

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

A Positive Outlook Helps

American Parkinson’s Disease Association (APDA)
Virginia Education Day – September 28, 2019

Karl Robb, wrote about his experience in his blog, A Soft Voice in a Noisy World. Click here to check out his post, A Day of Parkinson’s Education in Williamsburg.

Here are my notes from the first session which was a discussion on
Living with Parkinson’s Disease.

Local Parkinson advocates, Karl and Angela Robb, were on the panel as were another couple, Charlie and Cammy Bryan. The gentlemen have both been diagnosed with Parkinson’s, and the ladies are their care-partners.

I’m sure you’ve heard how having a sense of humor helps when living with Parkinson’s but having a sense of humor about it isn’t the same as making fun of it. Karl noted that Parkinson’s isn’t funny but some of the things that happen are.

Karl and Angela are well-known for their positive outlook and when you meet with them, you will always come away with a smile on your face. Sometimes people think that having a positive outlook is kind of Pollyanna-ish but I liked Angela’s comment that it helps people to put one foot in front in front of the other.

Charlie talked about how difficult it was for him to give up the little things like loading the car for a trip. He can’t do this anymore because of his difficulties with balance and grabbing onto things. He’s also having to get used to Cammy opening the door for him instead of the other way around. One good thing about Parkinson’s is that it’s gradual so it’s easier to adapt.

The two couples were asked for suggestions about how to avoid stress and anxiety. They talked about how anxiety increases as medications dip and become less effective, how executive dysfunction increases, and how being in a crowd is stressful. They suggested that people always have a plan and be prepared to adjust your plan. You may find you need to have multiple plans and learn how to juggle.

When asked about the impact of Parkinson’s on their business or work, Charlie told us how he’d learned to pace himself and cut back on his load, particularly with the loss of his executive function (the ability to organize and multitask). Karl and Angela decided that best option for them was to be self-employed. One of the many things they do is write to books with a focus on living well with Parkinson’s, and their workbook, Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind and Spirit was in every attendee’s goody bag.

I’ll write about the other sessions in coming weeks. In the meantime, here’s some more news from APDA!
APDA Symptom Tracker app
Introducing an easier way to track your symptoms and manage your care.
Download the free APDA Symptom Tracker mobile app today.
For your Android    |     For your iPhone

Smart Patients Parkinson’s Disease Community
In partnership with APDA. The online peer-to-peer support of the Smart Patients Parkinson’s Disease community complements APDA’s resources, which provides outstanding patient services and educational programs, elevates public awareness about the disease, and supports research designed to unlock the mysteries of Parkinson’s disease and ultimately put an end to this disease.
Click here to learn from other patients and share your story.


Here’s something for caregivers . . .
Thank you, Angela, for sharing an email from the Caregiver Action Network’s (CAN). This is not Parkinson-specific but is for ALL caregivers.
Articles included:
Who Will Pick Up The Slack? about the crisis of care we are experiencing here in the U.S.
Dementia Caregivers are Tired
Grief is a Personal Journey
Help Them (and Yourself) about loneliness
Click here to go to the CAN website and learn more. I like how on the home page, they show different kinds of situations caregivers find themselves in and you can choose the one that fits you.


Free webinar from Parkinson’s Foundation
Expert Briefing: Coping with Dementia for Care Partners 

Tuesday, November 5, 2019 from 1:00 – 2:00 p.m

Who: Joseph Quinn, MD, Professor of Neurology and Director of OHSU Parkinson Center and Movement Disorders Program School of Medicine; Director, Portland VAMC Parkinson’s Disease Research, Education and Clinical Center (PADRECC) (Parkinson’s Foundation Center of Excellence)
As a care partner, understanding the signs and symptoms of dementia in Parkinson’s disease can be a challenge. While developing the strategies to optimize the quality of life for a loved one may be your priority, it can become easy to lose sight of your own health and self-care as a care partner.
In this webinar, Dr. Joseph Quinn will focus on the prevalence of cognitive impairment and dementia in PD and provide tips for care partners to address their needs as well.
CEU’s are available for social workers and healthcare professionals.
Click here to register.

Caring for our Caregivers
And speaking of care partners, PSN’s annual caregiver’s appreciation luncheon is filling up fast! Click here for details and to register (scroll down on the page) on our website, or click here to download the flyer and share with your Parkinson family caregiver friends.


You Are Invited To Thriving After 60 University
Saturday, October 12, 2019, 8:00 am – 1:00 pm

Northern Virginia Community College
8333 Little River Turnpike, Annandale, VA 22003
Join Kaiser Permanente for a no-cost, half day event focusing on preparing for retirement. Topics will include Money matters, Aging in place, Downsizing and decluttering (Matt Paxton will be speaker!), Medicare, Social security, and Volunteerism. Click here for more information and to register.


A few seats are still available for this discussion.
Advancements in the Treatment of Parkinson’s Disease: Neurorestoration and Beyond
Thursday, October 10, 2019, 4:00 pm
At: Fairview Park Marriott
3111 Fairview Park Dr., Falls Church, VA 22042
Join the Inova Movement Disorders Center for a discussion about the new treatments for Parkinson’s disease and the future of our field, followed by an extended question & answer session where patients and their families can direct the conversation.
Also come meet our new team members:
Dr. David Whitney, Movement Disorders Specialist (Fair Oaks/Gainesville)
Sonia Gow, Program Manager and Community Outreach (system-wide)
Please RSVP to: marie.bermudez@inova.org or call 703-776-3130


I hope this newsletter is helpful and we’ll see you Out & About soon! Our Side by Side support groups will be meeting at Virginia Hospital Center, Carlin Springs location at 10:30 am on Wednesday, October 9. For more details click here. Hope to see you there!

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

We’re (Talking About) Getting Organized!

Home Inventory

Over the weekend, several friends from Northern Virginia attended the American Parkinson’s Disease Association (APDA) Virginia Education Day. I took lots of notes which I’m planning to share next week. In the meantime, we had fun chatting with Susan about getting ourselves and our stuff organized at a couple of our cafes this month. This is what we learned . . .

Getting Organized with Susan
We enjoyed our visits with Susan Kousek from Balanced Spaces at our cafes in Fairfax and Ashburn in September. We learned about how to create a home inventory by taking photos and recording items in an Excel spreadsheet or in Word. Or how to take a video and talk about the items you’re focused on, but the method is harder to keep updated. Susan made the point that although we may think we know everything we own, we usually need to produce a home inventory after loss – for example, due to storm damage or fire. When we’re dealing with a crisis like this, it’s easy to forget things. Insurance companies also need to know things like how much an item cost and when it was purchased, so creating your list now, when you have more time to research might be easier. Susan also recommended that we contact our insurance company to determine the information it requires so we can replace the items we no longer have.

Susan covered other topics such as de-cluttering, time management, using a medical notebook, and managing paper. We all agreed that we could talk for much longer about medical records and paper stuff, so I’m pretty sure Susan will visiting a cafe near you again soon! In the meantime, click here for a handout (Do I love it?) with some questions to ask yourself while you’re sorting through your stuff. Click here for another handout (Do I love it? – for closets) with questions to help you clean out your closet.

A note about seasonal items . . . now is the time to donate your winter items to charity, as it is  difficult for them to store items between seasons. A couple of organizations that would really appreciate your donations are Women Giving Back for women’s clothing because they help homeless women who are looking for work. The Lamb Center was also recommended for both women and men’s clothing. Both organizations also appreciate other items like unopened make-up, toiletries, etc. Please check their websites for their wish lists.


Little Big Things™
Saturday, October 19,2019 from 3:30 pm ET

Where? Online, worldwide and from the comfort of your own home
What? A FREE dynamic community event inspired by innovations in Parkinson’s.

A Little Big Things™ event, presented by the Davis Phinney Foundation and Sunovion, is coming to Austin, TX on October 19 and YOU can watch live from anywhere by clicking here to register. Sign up today and tune in on October 19 at 3:30 pm ET for a dynamic event featuring thought leaders and innovators from around the world taking action to help people with Parkinson’s live better today.


Music Therapy for Parkinson’s
A couple of our friends attended the Kennedy Center REACH festival event on music therapy for Parkinson’s and wrote to tell me that “it was really excellent”. The instructor was Elizabeth Stegmoeller from Iowa State. (esteg@iastate.edu). It was also attended by Dianne Wawrzusin of the American Music Therapy Association. The association website has info on how to find music therapists in the area: www.musictherapy.org

The Arlington County 55+ program also has several music-related offerings.

Dance for Parkinson’s
The Kennedy Center will be having dance therapy for Parkinson’s events this fall and over the winter and spring.

Dance for Parkinson’s Disease: Mark Morris Dance Group
Saturday, November 16, 2019 11:00 AM

www.kennedy-center.org/calendar/event/EUEDE

Dance for Parkinson’s Disease: Lucy Bowen McCauley
Saturday, February 15, 2020 – Saturday, May 16, 2020

www.kennedy-center.org/calendar/event/EUEDR

They are free, but pre-registration is required. (Registration opens about a month before each event.) With the new REACH facilities, the Kennedy Center looks like it is expanding its offerings related to wellness.


From  Senior Services Alexandria
Senior Speaker Series Program – “Wellness: Mind, Body & Spirit”!
Thursday, October 17, 9:30 am – 12 Noon 

At: Beth El Hebrew Congregation, 3830 Seminary Road, Alexandria
Learn how you can benefit from alternative healing approaches, try out Tai Chi and Pilates exercise techniques, and get ideas on how to support an active life style through nutrition tips. Speakers will include the City’s Department of Recreation, Four Directions Wellness, Studio Body Logic and Inova Alexandria Hospital. This will be an informative and fun morning and it is all free with light refreshments.
RSVP online at www.seniorservicesalex.org or call 703-836-4414, ext. 110.

I hope this newsletter is helpful and we’ll see you Out & About soon!

Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org

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