Cedars-Sinai SB PD Conference Notes

Cedars-Sinai Overview

Those of us who were able to attend the Cedars-Sinai presentation heard some exciting presentations. Here are my notes:

Dr. Michele Tagliati, MD presented Symptoms; Redefining PD in which he acknowledged all those non-motor symptoms of PD that thus far, most doctors have ignored. This includes psychiatric issues, sleep disorders, autonomic problems, and sensory problems. As he said, “Ignoring these symptoms leads to a lower quality of life”. So true! He also mentioned that many of these issues precede the onset of the traditional symptoms like brandykenesia and tremor. One thing I found interesting was that some symptoms like constipation are very early – up to 50 years before diagnosis. This does not mean that those with constipation will get Parkinson’s, but now doctors are looking more at the connection.  The other three issues discussed were Sleep Issues (specifically REM Behavior Disorder), Depression and Loss of Sense of Smell.  All this understanding we hope will lead to not just better diagnosis, but also better treatment.

Dr.Ayesha Sherzai presented on Nutrition and Lifestyle. One scary statistic she began with is tha only .4% – yes, point four percent – of Americans have a healthy diet. Yikes! We rank #27 out of 34 industrialized countries. She recommends the following:

  • ü  Lower protein intake
  • ü  Whole food, organic, plant based diet
  • ü  Lower dairy intake – specifically milk
  • ü  Colored “flavonoid” foods are really good for you
  • ü  And, caffeine (up to 2 cups a day) is not just okay, but recommended!

Finally, she emphasized, again, EXERCISE! Not just a little stroll, but at least 10 minutes a day of sweaty movement. You should get to the point that you cannot complete a spoken sentence.

The final speaker was Dr. Echo Tan who introduced us to New Wearable Technologies.  These are really cool, but unfortunately not available at this time.  Keep an eye out for products from Fox Insight Wearables, Kinsesia Products and Global Kinetics Corp.

 

The place was packed and it is very clear that there is a need for medical specialists in our area. The best news is that Drs Sarah and Erin now have a website! www.movementdocs.com Make sure to click on the Contact Us link and fill in the form to add yourself to their patient list when they get going.  When? They are planning on the beginning of the year.

DBS LIVE ON TV THIS SUNDAY!

National Geographic Show on DBS this Sunday.  Don’t forget to watch!
6 pm and again at 9 pm on National Geographic (NATGE) Channel 127 in SB 

The patient will be fully awake throughout the proceedings.

The deep brain stimulation surgery taking place at University Hospitals Case Medical Center in Cleveland, Ohio will be shown for two hours in a special called Brain Surgery Live With Mental Floss. The procedure will be captured with two handheld cameras and several robotic cameras in the doctors’ surgical equipment.

Deep brain simulation is an elective surgery used to treat essential tremor in Parkinson’s Disease. The patient is awake and able to speak during the operation, which allows the doctors to know if they have accessed the correct area of the brain. Journalist Bryant Gumbel will host the show and neurosurgeon Dr. Rahul Jandial and neuroscientist and podcast host Cara Santa Maria will provide running commentary.

The neurosurgerical team includes Dr. Jonathan Miller, UH Case Medical Center’s director of the Center for Functional and Restorative Neurosurgery, Dr. Benjamin Walter, director of the Parkinson’s & Movement Disorders Center and medical director of UH Case Medical Center’s Deep Brain Stimulation Program and neurosurgeon Dr. Jennifer Sweet. The network has not yet identified the patient.

“By partnering with National Geographic and Mental Floss, two incredible brands with a passion for exploring science, we hope to demystify brain surgery, diminishing the fear and stigma of this operation,” Miller told The Hollywood Reporter.

“We hope that this live broadcast of a deep brain stimulation surgery will educate viewers and offer a comprehensive look at this cutting-edge surgery.”

Lower your Risk…

Lifetime choices presented by the Alzheimer Association to lower your risk of dementia. I think they are just plain good choices to make in life!

  • Exercise every day
  • Dance
  • Laugh
  • Sleep more
  • Lower your stress
  • Learn a second (or third) language
  • Learn an activity you can do with your hands
  • Get a massage
  • Marry only for love
  • Enjoy your loved ones
  • Cultivate your friendships
  • Drink plenty of water
  • Avoid excess alcohol
  • Quit, or better yet don’t start, smoking

And to add my own,

Carpe diem!

August News

Caregivers and Men’s groups will meet at noon on Wednesday, August 5th at St. Mark’s.
General Meeting will be the following Tuesday, August 11th at 4:30 at St. Mark’s. We have a great speaker, Dr. Dale Ekstrum from Lompoc who will share his knowledge about nutrition. Besides exercise, nutrition is the most important thing you can do to care for yourself – with or without PD.
That same day (Tuesday), Dr. Sarah Kempe-Mehl  will be speaking in SB at 2:00 at St. Andrew’s Church.
If you missed her last presentation, I highly recommend you attend this. You will learn about the latest research from the world conference she recently attended, share her insights and have a Q & A.
But if you can’t make it, that’s okay because Dr. Sarah will be our October speaker in Los Olivos.

July meeting and more!

Get ready with your questions for the doc!

Dr. Erin Presant of Pacific Neuroscience in Oxnard is our speaker tomorrow at our general meeting. There is lots happening in research about PD and Dr. Erin will fill us in.

4:30 Tuesday, July 14, St. Mark’s in Los Olivos. Snacks and drinks provided by New Frontiers Market as well as a couple member bakers!

But, before that, tune in to the conversation with FREE PD @ Home telephone support group/education program.

Topic:  Side effects of PD Medications

Speaker:  Emad Farag, MD

VA-Greater Los Angeles Healthcare System and UCLA Movement

Disorders Attending Movement Disorder physician

Date:  July 14, at 10 am PT, 11 am MT, 12 noon CT, or 1 pm ET (1 hour)

Call-in info:  1-800-767-1750   Code 54321#   (call in about 2-3 min prior to the hour is fine)

If that’s not enough info for you, join me in SB on Wednesday, July 15 at 1:00 to hear Dr. Sarah’s presentation.  We will arrange carpools at Tuesday’s meeting, but let me know if you can come and if you can drive or if you prefer a ride.

Dr.Sarah.collage1

Hugs to everyone. I know this has been a challenging month for many of you. That’s why we’re here…support!

Speaking of research…

Whether or not you have Parkinson’s disease, you can participate in Fox Insight to fuel Parkinson’s research. Getting started is easy, and by coming back over time, you’ll give researchers key insights into your unique experience.

  1. Create your Fox Insight account. Fox Insight will prompt you to follow easy steps to tell us a bit about yourself. Because Fox Insight is a clinical study, you’ll also be asked to read and electronically sign an informed consent form.
  2. Fill out the study questionnaires. Once you’ve created an account, you’ll be prompted to fill out four study questionnaires: Symptoms, Family Neuro History, Daily Living and Medical History. Completing these questionnaires constitutes your first “study visit.”
  3. Come back in 90 days. Fox Insight aims to collect longitudinal data, or the same data over and over again to show patterns or changes over time. Fox Insight will remind you to come back for your next study visit to fill out your questionnaires.
  4. And 90 days after that. You get the picture. Fox Insight will email you every 90 days when it’s time to come back for your next study visit. Each visit should take no longer than 20 minutes, but entering your data again and again can have an incredible impact on PD research.
  5. Use Fox Insight Tools. Visit your dashboard to take advantage of various tools to help you manage your care. You’ll find an Appointment Keeper to remind you of upcoming doctor visits, a Physcian’s Report to fill out before your next appointment, printable summaries of your questionnaires, access to other clinical trials in your area, and more.

PD Tips and Tricks that Work!

Trouble turning over in bed? Try satin pj’s or sheets – just not both!

Satin sheets

Getting up off the toilet?  Install a grab bar. Just make sure to install into a stud (not your husband)!

Toilet  bar

Freezing?  Sing a few notes of Happy birthday (in your head, please).

Birthday cats

Hips tight?  Get (and use) a hula hoop!

hula hoop

Can’t reach to undo your bra? Try a front clasp. Or ask for help from your husband!Unhooking bra

This may be TMI (too much info), but if wiping your bottom becomes a challenge, use some hygiene wipes like Cottonelle. Way better than asking for help from someone!

cotonelle

Trouble keeping food on your plate?  Use a bowl instead.

cereal bowl

Constipation? I know this is counter intuitive, but stop eating bran and increase your fruit intake.  And don’t forget to drink tons of water. I mean you should have a half ounce per pound of body weight. So, if you weigh 150 lbs, we’re talking 75 ounces of water a day!

water-drinking-aug09

More to come!