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July events, June Speaker summary

Thank you to Lu for writing a summary of the speaker presentation at our June meeting!

June Speaker Summary

Speaker: Dr. Jessica Lehoist, D.O.

Opening comments:

• There are a lot of new drugs in the pipeline in the next year or two.
• Recommends www.clinicaltrials.gov to see what clinical trials are going on and what’s being developed and tested.

Autonomic Symptoms

• Autonomic refers to systems which you don’t control like blood circulation, respiration, etc.
• Dehydration can lead to orthostatic hypotension
• Dopamine receptors in your gut explains constipation issues
• You can have dry mouth and drool at the same time.  You replenish your saliva through swallowing.  Because you don’t blink as often either, you get dry eyes.  OTC tear formulas work well.
• Bladder issues:  It’s possible to have bladder urgency and frequency at the same time.  Complicated by men’s prostate issues as they age.  Can cause recurring UTIs.
• Some problems with the sexual organs are caused by mood and depression and some autonomic issues.
• Orthostatic hypotension is when your top blood pressure number drops more than 20 points and your lower number drops 10 points. For example, if you have ideal blood pressure of 120/80, and when you stand it drops to 100/60, you have a problem.
• Sinemet can cause a drop in blood pressure.
• To deal with low blood pressure, increase salt intake and fluids, such as water and non-caffeinated coffee/tea.
• Try not to jump up and rush out the door. Give the body time to adjust.
• The amount of dopamine in your blood level varies during the day, even for people without Parkinson’s, and is also affected by hormones.
• A walk after dinner helps your blood to circulate, and helps with constipation.
• Fluid intake is critical to prevent constipation. Lots of fiber in your diet is recommended as well as stool softeners, Miralax, probiotics and yogurt.  Enemas change the electrolytes in your body which can be dangerous.
• Unused muscles atrophy.
• For drooling, increase amount and volume  of speech – practice in the shower.
• If your doctor prescribes a new medication, you can ask about starting at half the prescribed dose to see how it will work in your body.
• Botox can work if drooling is a big problem.  Warning:  Its a paralyzing agent used for dystonia but it can cause muscle atrophy.
• See a speech doctor for drooling issues.
• There are medications that help with excessive sweating.

Behavioral Symptoms

• Between 5-80% of people living with PD are depressed.  Some percentage are also apathetic, surrendering because Parkinson’s can make so many things more difficult. Its due to dopamine levels, and can cause personality changes such as paranoia, anxiety and frustration.  PD hallucinations aren’t big and scary but dark things or shadows you see out of the corner of your eye and usually don’t have an auditory element.  People living with PD do have a  higher risk of dementia.
• It’s possible to have impulse control issues with dopamine agonists.  A medicine change can resolve the compulsion.  If you notice it, its important to tell your doctor.  Dr. Lehoist has seen people go into huge debt because of it.

Cognitive Symptoms

• Word retrieval problems are common.  Also its possible to get stuck on one topic, have difficulty with directions and have a decrease in alertness and depth perception problems. The memory loss is different than Alzheimer’s.  With Alzheimer’s , you can’t make new memories; with PD, you can make new memories but they’re hard to pull up.
• 3:00 PM is a common ‘bad time’ for people with PD due to a dip in dopamine at that time.  Schedule around such a time. Resting will help dopamine to recharge.  Taking a regular short nap around that time was recommended.
• For memory, lists are great.  Memory is helped by Sudoku, crossword puzzles and such.  Also you can try to use the opposite side of your body.  For example, brush your teeth with your left hand.
• There are many programs to help you to speak louder if you have speech problems, such as the Big and the Loud programs. (Our speaker in July will talk to us about the LOUD program.)
• There are three kinds of sleep issues:
–  insomnia where you can’t fall asleep ,
–  insomnia where you can’t STAY asleep
–  sleep fragmentation where you wake up multiple times in the night.
Restless Leg Syndrome can contribute to sleep issues as it can be a PD issue.
• There exists a disorder called REM behavior disorder.  Folks who have this experience a disruption of the normal paralysis of the skeletal muscles in the REM cycle.  It can cause dream-enactment, yelling out and acting out during sleep.  You may have  no recollection of it happening.  This affects 30-60% of all people living with PD.
• This doctor strongly recommends melatonin for sleeping.  Her advice is to take it 1-2 hours before bedtime.  She said when her patients bring up sleep issues, she always suggests melatonin first. (Please check with your doctor first.)

Closing Thoughts and Responses to Questions

• Exercise and diet do more for people living with PD than prescription medication.  As for which type of exercise, she recommends doing all kinds.  Why exercise? It keeps muscles strong, maintains flexibility and stimulates dopamine production.
• As for diet, she recommends the Mediterranean diet.  It encourages you to eat lower saturated fats, and increase the amount of nuts, veggies and fruit.  Red meat is discouraged.
• Sugar or Artificial Sweetener? She’s prefer less sweet over all, but encourages natural sweeteners, including stevia.
• She’s a proponent of trying alternative therapies like acupuncture and massages.  As a D.O., she does spine manipulation.  Find someone who knows about PD and your rigidity that can be gentle.
• Sleep attacks are sudden fatigue that hits you so hard, you can drive right off the road.  Should always be careful when introducing a new prescription.
• Drinking alcohol before bedtime can interfere with REM cycles but red wine is good for you.  Limit it to one glass.
• Shoulder pain is often the first PD symptom, followed by cramping in the arms and legs.
• Eyes have dopamine receptors.  Vision can change during the course of a day . . .


From Karl & Angela Robb, Fairfax City Support Group
Richard London author of A Handbook for Life holds a Parkinson’s chat every Monday evening. Richard always has lively conversation and interesting speakers. Karl and I have both listened to Rich’s chats and find them to very informative. We wanted to share this info with the group. Here’s the webpage where you can find the chat schedule and archived shows:

July support group events

Evening Socials
1st & 3rd Wednesdays – July 2 & 16 at 6:00 pm

We meet at: Jason’s Deli 12955 Fair Lakes Shopping Center, Fairfax, VA 22033

Just an informal get together to connect with your support group friends. No need to RSVP, just drop in! Light meals, beverages and desserts are available.

Mall walking & coffee
every Friday at 10:30 am

At: Corner Bakery at Fair Oaks Mall
The idea is that you can walk before or after joining the group for coffee and a chat with your support group friends at Corner Bakery at 10:30 am. If you’re really feeling enthusiastic you can walk before AND after! No need to RSVP.

FYI – it’s .75 of a mile to walk around on one level, inside of the mall, including all the nooks and crannies.

Support group meeting
Saturday, July 26, 10:00 am – 12 noon

At: Sunrise at Fair Oaks, 3rd floor 3750 Joseph Siewick Dr, Fairfax VA 22033

Speakers: Kimberly McPhee and Jennifer Katzen from Washington Speech
Topic: LSVT/LOUD program

Upcoming meetings . . .
August 23
September 27 – Speaker: Jennifer Robinson, massage therapist
For more information about Jennifer, please click here.
October 25

Fairfax City PD Support Group

no meetings in July & August
At: Green Acres Community Center, Room 112 (click here for directions).
Contact: Karl & Angela Robb
Fairfax City PD Support Group
home phone: 703-277-9666 email: angela.robb@cox.net

PFNCA Events

Save the Date! Sunday September 14, 2014 – Walk for Parkinson’s
For the latest information about PFNCA events check out www.ParkinsonFoundation.org.
Annual symposium in Falls Church was on March 1. If you weren’t able to attend, they usually post the slides from the presentations on the PFNCA website. Click here to view slides from previous symposiums.

Partners in Parkinson’s Washington DCsave the date!

Sunday, October 12, 8:00 AM – 4:00 PM (N.B. – change of date from 10/11/14)
Partners in Parkinson’s is a free educational event for people with Parkinson’s and their families and will take place at the Walter E. Washington Convention Center. Breakfast and lunch will be provided. The program features presentations and panel discussions with local Parkinson’s specialists, research experts and patient panelists. It also includes a resource fair to connect attendees with local support groups, clinical sites, allied healthcare providers, and more.

For more information or to register, visit www.partnersinparkinsons.org .

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