Parkinson Social NetworkNutrition for Parkinson’s
This week I was asked if I could recommend someone local who has a good understanding of nutrition for Parkinson people. I’m not aware of anyone, so I did some research online and found a video that really impressed me. The panel addresses a number of issues I’ve been asked about such as protein and levodopa, unintentional weight loss, constipation, supplements, and more. They’ve packed a lot of good explanations and suggestions into 35 minutes, and I highly recommend it. Click here to view – it’s episode 3 on this page.
This video is on ParkinsonTV.org, part of the ParkinsonNet initiative – www.parkinsonnet.info (this is the link for the English language version) – led by Prof. dr Bastiaan Bloem. I heard Dr. Bloem speak at the World Parkinson Congress in 2016, and I appreciate how his explanations are so easy to understand.
Season one on ParkinsonTV covers the basics, and in season two they discuss mental health. In the episode on nutrition, they refer to the episode on medications (episode 2), and it’s worth watching, too. If you’re looking for something to do when you’re housebound on these snow/ice days, how about checking out these TV shows?
Cough and Cold Medication
This week I was also reminded about an issue with cough and cold medications, because it’s that time of year again, isn’t it? Here’s some helpful information from an educational supplement provided by the American Parkinson Disease Association, Medications To Be Avoided Or Used With Caution In Parkinson’s Disease:
medications that should not be taken with selegiline HcL (eldepryl, Deprenyl, Zelapar) and rasagiline (Azilect) – cough suppressant / Dextromethorphan / Numerous Brands.
With these over the counter (OTC) medications, it’s up to us to read the label. However, I’ve found that the instructions often give ‘fine print’ a whole new meaning, and this information about Parkinson’s is really hard to find. It’s a good idea to check with your physician or pharmacist before taking OTC cough and cold medications.
Parkinson’s Awareness Month – out of town events
April is Parkinson’s Awareness Month and information about events are starting to appear in my inbox. I thought I’d share these two with you so if you’re interested, you can save the dates on your calendar.
1) The Parkinson’s Unity Walk takes place in New York City’s Central Park every year. The 25th walk will be on Saturday, April 27, 2019. Click here for more info. (If you watch the video from last year you might see a couple of familiar faces – time 2:02)
2) The APDA Hampton Roads 2019 Optimism Walk at Neptune Park (31st and the Boardwalk) Virginia Beach is on Saturday, April 13, 2019; 9am to Noon. For details on setting up your team or joining one, call 757-495-3062 or check out www.APDAParkinson.org/va.
For Caregivers
1) BossySpa.com
This blog is written by a woman to support her sister who is caring for her husband with Alzheimer’s, every day she posts a reflection and note of support for her sister. It usually begins with a meditation on nature and ends with an instruction to give emotional support to caregivers. It’s very thoughtful and well-written. Recommended by Kristen – thank you!
2) JanetEdmunson.com
Janet shares her experiences as a caregiver for her husband, Charles, who lived with progressive supranuclear palsy, or PSP, a Parkinson-plus disorder. You can sign up on her website to receive a free weekly affirmation for caregivers (click here for examples). There are books and webinars, too. Ruth Ann has often shared the affirmations with us – thank you!
Hope to see you out and about again soon! Maybe next Monday at Cafe Alexandria or on Wednesday at Cafe Ashburn?
Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org
Hospitalization and Parkinson’s
Sonia speaking to Ashburn support group
This week, Ruth Ann and I spoke to the Ashburn support group. Our topic was Prepare For Your Care: How to Go Home From Hospital in Better Shape Than When You Went In. We stressed the importance of being prepared and this means everyone – caregivers and Parkinson people. We also talked about how important it is to be treated not just as a patient, but as a patient with Parkinson’s, how to get your Parkinson medications on time, and how to educate medical professionals about what you need. Alexandra from Old Dominion Home Care also joined us to share her perspective as someone who is advising staff at hospitals on how they can best care for our friends living with Parkinson’s. Finally, we sent people home with our new Parkinson Social Network PARKit (Parkinson’s Awareness Resource Kit). There’s an electronic version of most of the items in our PARKit on our website. Click here to view and download.
If you’d like us to give a presentation to your support group, please contact me at Sonia@ParkinsonSocialNetwork.org.
Also at the Ashburn support group we talked about when it might be helpful to work with a home care company both in the hospital and at home. The Guide to Retirement Living Sourcebook is a great resource that lists the various companies in the greater DC area that provide home care, residential care, and other services for older adults. It is updated three times a year and it’s free! While I had a few with me to share, I didn’t have enough to go around. I’ll have some more to distribute at our cafes this month, but in the meantime, if you’d like to check it out, you can click here to order it online (for a hard copy to be mailed to your home) or click here to browse the Sourcebook online.
Women with Parkinson’s in Northern Virginia
Did you know that there is a support group for women living with Parkinson’s? It’s the only one of it’s kind in Northern Virginia. Karl, Angela and I visited the group for their first meeting this year. Kudos to Lu for starting this group in 2014, and making it possible for women with PD to come together in a safe and supportive environment. For more information you can contact Lu at womenwithpd@gmail.com or check out their website at https://womenwithparkinsons.com/.
Webinars
I have information about some webinars below for you. One of the convenient things about webinars is that you can also watch them on your own time as they are generally available on the organization’s website a few days after the live event. In February at Cafe Fairfax we will learn how to access podcasts and webinars, so if you’re not sure what to do, I hope you’ll join us!
From Parkinson Voice Project (PVP)
Optimal Nutrition for Living Well with Parkinson’s
Saturday, January 12th, at 10:30am (CT) 11:30 (EST)
This event will be streamed live on the Parkinson Voice Project website and Facebook page. A recording of this lecture will also be available on their website by January 18th.
Lecture Description:
This presentation explains common Parkinson’s changes in the GI tract, how a reduced sense of smell and taste can impact appetite, and prudent choices of over-the-counter nutritional supplements. Scheduling medications for optimal absorption, minimizing swallowing problems, and managing constipation will also be discussed.
Click here for more information about the presentation and speaker, and to register!
From American Parkinson Disease Association (APDA)
Healthy Minds, Addressing Your Mental Health
This webcast is an archive of the live web/teleconference education program that was held on December 18, 2018. To view the webcast click here.
Managing Your Symptoms
Tuesday, January 29, 2019, 1:00 PM – 2:00 PM ET
Speaker: David G. Standaert, MD, PhD
To view the webcast click here.
Cafe Fairfax . . .
. . . is next Wednesday! Lindsey will be talking with us about Music and Memory. After our cafe, I highly recommend that you stay to hear an interesting talk about Normal Aging Versus Dementia at 1:00 pm (part of their Classes for Caregivers series). It’s in the same room where we have our cafe, and you might want to bring some lunch to munch on in between activities. I’ve heard this talk before and found it comforting to learn how the reason we forget things isn’t always because of dementia. We can forget things when we’re inattentive or distracted, too. You’ll find more information on our Cafes page.
Hope to see you out and about again soon! Maybe next Wednesday at Cafe Fairfax?
Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org
Parkinson Social Network 