Parkinson's: EMPOWER U EXPO
EMPOWER U EXPO
Taking Control
of Parkinson’s Disease
Here is the schedule for the
day. The sessions in red were the ones
we planned on going to. It didn't always
work out, we ended up resting and snacking in the food area and schmoozing with
other people on this journey. I loved it!
9:00-9:25 am
PD 101
Erin Zinn, APRN-CNP
New Technology for Living with Parkinson's
James Liao, MD
9:35-9:55 am
Cardio Drumming
Angela Smith, APAD Fitness and Senior Drumming
Lake Community YMCA
10:05-10:30 am
Optimizing Sleep with Parkinson's
Carlos Rodriguez, MD
Sleep Medicine Specialist
What's New in Medication Therapy?
Shannon Shaffer, APRN-CNP
10:40-11:00 am
Chair Chi
Teresa Gregg, ADC, CDP and Mary Loy, CDP
Danbury Senior Living
11:10-11:40 am
Local Resources: Support for Patients and Care
Partners
Kathie Stull, OPFNE and Laura Summers
Parkinson's
Foundation
Improving Quality of Life with Surgical
Options
for Parkinson's Disease
Cleveland Clinic Team and Patients
11:50 am-12:20 pm
Thrive Through Tennis for PD
Brian
Smallwood, USPTA Thrive and Rock Steady Boxing
12:30-12:55 pm
Practical Tips for Daily Living with PD
Dee Dee Hesson, OTR/L
Genetics of PD 101: Knowledge is Power
Ignacio Mata, PhD
1:05-1:25
Come Dance with Me
Dianne Discenzo, BA, MLS and Fred Discenzo, PhD
1:35-2:00 pm
Managing Emotional Highs and Lows of Parkinson's
Taylor Rush, PhD
Improving Walking and Balance: Tips From a Physical
Therapist
Christina Bebb, DPT
2:10-2:30 pm
Fight Parkinson's with Total
Healthworks
David Zid, BA, ACE, APG
2:40-3:05 pm
Memory and Thinking Changes in PD:
What to Expect and What You Can Do About
It
Darlene Floden, PhD
What's New in Parkinson's Research?
Xin Xin Yu, MD
3:05-3:30 pm
Ask the Parkinson's Experts
Cleveland Clinic Center for Neurological Restoration
Staff
Things I learned at the Expo:
First up: New Technology for Living with Parkinson's
The wearable
technology is non-invasive and
made me feel hopeful about the future with Parkinson's.
The vibrating
glove. It is not yet ready but it is close, 3 new studies are pending.
The Ear Stim, will be in phase two of clinical trials, in 2024, It looks kind of like a hearing aid, sits in your ear and stimulates it and can control trembling and other symptoms of PD. This one looked very promising.
The Cala kIQ is a wearable device like a watch, that stimulates the nerves and can control trembling. The Cala kiQ is already out. A 40 minute session of Cala Taps Therapy will control postural and active trembling for over 1 hour afterwards. To learn more about it, visit www.CalaHealth.com
Strive PD-an apple watch app for PD- helps with analysis. Works with siri. www.strive.group
Physical Cue-Augmented Reality for freezing and gait- projects lazor light onto the floor in front of you.
Some of the wearable technologies, had tables in the Exhibit hall where you could get brochures about them. There were a lot of Exhibitors. I stopped in at all of them, and had fun picking up freebie stuff that they gave out. When we got home, I gave the swimming caps that looked like brains, (it said they were to decorate your bicycle helmets) to my grand daughters. They loved them, and immediately both wore them as Brain Hats on their heads.
I signed up for the Total Healthworks, free, 14 Day trial of live Brain & Body training exercise classes over Zoom. David Zid taught a session at the Expo and ROCKED IT! It was such fun (can I, Nancy Mellon, really be calling any exercise fun?) and so doable.
Do you remember my
post about Snack Exercises? Well that is the way they run it- with very short,
but intensive exercise for 20 or 30 or 40 seconds, followed by
20, 30 or 40 seconds of rest. You get
to choose what exercise you are going to do but they also give you many
ideas and show you what they are
going to choose. So you can also just
follow them, if you want to. And
they tell you how you can do it sitting down or standing up. They mix the
exercise portions up with brain and balance work. And talk, lots of talk. David
sprinkled great Parkinson's tips, laughter and positive, uplifting vibes
through out all of it. Everyone came out of that session with big smiles and
full of energy.
I have done all the free trial Total Healthworks classes now and plan on starting their program, for $49.99 a month. They have live sessions at noon, Monday, Tuesday, Wednesday, Thursday and Saturday. They also have many videos of their sessions online for you to do at any time. The classes are led by David Zid and Jackie Russel. They are friendly, warm and fun to exercise with. (I had heard about David from Chris Primm and Jim Sheridan. They had both thanked him in their Snarky Parky posts.) David and Jackie greet and talk to everyone individually. They are also very knowledgeable of Parkinson's and our needs. TotalHealthWorks.com
One of the things I wanted to know about was the medicine Rytary, it is an extended release carbidopa and levodopa capsule. I have been interested in it for awhile, because I am having many off times during each day (and night.) I came home with a folder full of info. I got to talk with a young man at the table, who asked me “what did I want to know?” I said “ I have been told it is a very expensive medicine. How can I pay for it?” He told me about BlinkRx.
You can contact
BlinkRx at 833-984-2820. or you can visit RYTARY.com.
I haven't done
this yet, so no promises.
The cardio drumming session was a gigantic giggle. It was not (as I had thought) with drums, all 200 of us got drumsticks and banged them together, following the very energetic and cheerful leader's movements and rhythms. We clicked them them up over our heads and clacked them to the left and clapped them to the right and on and on. It was a roaring good time.
I also wanted to know more about Duopa, it's a surgical procedure that frees you from taking so many pills and cuts way back on your off time.. A while back, we had listened to a woman doctor. talk about it. She had asked, “why didn't her patients want this?” And she was very convincing about the positives about getting it. This procedure was touched on in one of the sessions, but mostly they concentrated on DBS another surgical procedure where they put rods in your brain...
BUT, I found an exhibitor's table for Duopa. The woman who was the Duopa representative,
was fascinating. I went back to speak
with her 3 times. I told her about my worries that the tube that goes from your
intestines to outside your body would be very hard to keep clean. She said she
had a tube, for a different problem, (was it diabetes? I don't remember) and it wasn't hard to deal
with. And weirdly, I believed her. I
also got in their information, a number to call to be able to sign up to speak
with a Duopa Mentor, (someone who has had this procedure done.) And that sounded like a good idea to me. If
you are interested it is 1 855-766-8966
M-F 8 am – 5 pm CT or you can go to www.Duopa.com/mentor
Since then, I have
read a lot about the procedure in the Parkinson's Foundation's booklet called:
Surgical Options. (The Parkinson's Foundation had a table there with lots of
their booklets to pick up.) And I have a serious case of ICKS!
Anywho, it was a magnificent day.
There is more that I learned, but I am tired.
So, until next time, sweet friends, Nancy & the Snark
PS.
This quote came
from Fran-
Hope opens the door to
possibility and allows us to envision change, particularly change that we
desire. But hope alone will not affect change—that requires movement.
Andrew Mellen, “UnStuff Your
Life”
Comments
Post a Comment