Parkinson Social NetworkUnderstanding and Patience
I hope this doesn’t sound like a lecture and you’re wondering what prompted this? But when I read it, I thought of our friends living with Parkinson’s and how they’ve talked about how frustrating interactions with some people can be. I came across this graphic thanks to a post on Facebook by the Cerebral Palsy Society of New Zealand, but I felt that it applies to people living with Parkinson’s, too.
Sometimes our friends can be slow to respond and are considered non-verbal. Sometimes their facial expressions don’t show how they are feeling the way they used to.
People living with Parkinson’s still think, hear, understand and feel. To this message of “Let’s practice non ignorance” I would add “Let’s practice patience”.
The young lady who shared the above graphic is a speech language pathologist who also lives with Crohn’s disease. She has often shared posts about how frustrating it can be when people don’t believe she’s ill because she doesn’t look like she is. I know this happens with people living with Parkinson’s, too, particularly with young onset. I don’t know how many times I’ve heard someone say, “He/She doesn’t look like they have Parkinson’s!”
Which brings me to an article I read this week through Parkinson’s Life out of Europe – “There’s a stigma that if you don’t ‘look sick’ then there is nothing wrong”. I imagine quite a few of our readers can relate to what the author has to say.
** The author mentions that she started a Facebook group called StrongHer: Women Fighting Parkinson’s. There are over 1,100 women worldwide in this community of support.
Here’s an event that looks like fun and features the chef from Brandywine Assisted Living – our hosts for Cafe Alexandria.
Senior Health & Fitness Fair – Alexandria
Wednesday, May 29, 9:30 am – 12 Noon,
At: The Lee Center,
1108 Jefferson Street, Alexandria
This annual Health and Fitness Fair is sponsored by the City’s Successful Aging Committee and will feature a discussion from Inova Alexandria Hospital about how to maintain a healthy weight as we age, and good nutrition tips. Breakout sessions follow with a cooking demonstration from Brandywine Assisted Living’s chef; healthy screening for blood pressure and glaucoma as well as fitness programs including tai-chi. This popular event is a lot of fun. It is free with light refreshments. RSVP online at senior health fair or call 703-836-4414, ext. 110. Click here for their event flyer.
Cafe Fairfax is really hopping this week!
Grace Lynch from Fairfax County has been so helpful in getting the word out about our Parkinson Social Network and our events. She will be visiting us with Jim Person to help us understand how we can access the many podcasts and webinars that we can use to learn about all kinds of things from the comfort of our homes. We will also be visited by Mike Harrigan and participate in brain and body activities.
Hope to see you Out & About soon! Will we see you at Cafe Fairfax?
Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org
More on Nutrition for People Living with Parkinson’s
If you’ve noticed that your Out & About is a couple of days later than usual, that’s because it is! With more interesting things to share with you, I thought I’d aim to send it to you on Sunday/Monday.
I’m frequently asked if I know a local nutritionist who specializes in Parkinson’s to speak to groups. I don’t, but lately I’ve had lots of good information from experts in Parkinson’s and nutrition from around the world. We’ve created a webpage at https://parkinsonsocialnetwork.org/nutrition to put all this all in one place.
Thank you to Diane Sherman, editor of the Dartmouth-Hitchcock Parkinson’s Newsletter for today’s nutrition information! You’ll find information from 2 sources.
From the American Parkinson’s Disease Association (APDA)
From Dr. Rebecca Gilbert, APDA Vice President and Chief Scientific officer: “The role of nutrition – food and supplements – in the management of Parkinson’s disease”
Click here to read Part One of Dr. Gilbert’s blog: “What we know about avoiding particular foods & supplements for Parkinson’s.”
Click here to read Part Two of Dr. Gilbert’s blog: “What we know (and don’t know) about taking particular foods & supplements for PD.”
(Part Three of Dr. Gilbert’s blog, “What we know and don’t know about adhering to particular diets,” will be posted soon.)
Diane found the following information on the Parkinson Voice Project website.
*To download a printable version of the info below: Click here.
Nutritional Guidelines for People with PD
By Susan Imke, Family Nurse Practitioner (FNP), Certified Gerontological Nurse Practitioner (GNP-C), Senior Health Solutions, 2018
• Parkinson disease (PD) slows gastric motility.
Chewing and swallowing are prolonged; stomach emptying is delayed, and food moves through the intestines more slowly than in someone who does not have PD. Nutrients are better absorbed when small amounts are eaten frequently rather than three large meals per day.
• Most patients get more benefit from levodopa when taken on an empty stomach.
A tablet, taken prior to eating (even 15 minutes is beneficial) with 4-5 oz. non-dairy liquid, is “washed” through the stomach, into the small intestine where absorption begins. Think of it as allowing levodopa a “head start” on absorption over the food about to be consumed.
• If levodopa causes nausea,
a small cracker or bite of fruit can be taken with doses required between meals. Pretzels are excellent, since they require no refrigeration. Crystallized ginger can be nibbled to offset nausea.
• Some people with PD get benefit from altering the amount or timing of protein intake to avoid interfering with levodopa absorption.
These are typically patients who experience significant on/off motor fluctuations and may take levodopa four or more times per day. To verify if protein is interfering with your L-dopa absorption, experiment with a vegetarian diet for 3 days to determine whether levodopa effect and motor function is significantly improved.
• Weight maintenance
can become a problem for some people who have PD. Frequent, small meals can help maintain optimal weight. Sometimes patients or caregivers are so diligent in limiting fat intake and worrying about protein restrictions, that they deprive themselves of much needed calories.
• Many dietitians recommend augmenting dietary intake with a daily vitamin and mineral supplement
as a nutritional “insurance policy”. Do not choose a mega-dose formula. Always take supplements with food.
Tip: Our natural sense of thirst diminishes with age.
Antiparkinson drugs also dry out the body. It is important to drink water “by the clock”, as precisely as you take your medications. This allows better absorption of nutrients from foods as well as medications and reduces the risk of dehydration.
Hope to see you Out & About soon! Next week we have our Side by Side support groups in Arlington. Will we see you there? More information on our Side by Side web page.
Cheers,
Sonia
email: Sonia@ParkinsonSocialNetwork.org
Parkinson Social Network 