Parkinson Social NetworkThe 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.
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.
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
Parkinson Social Network 