Virtual Viking Run/Walk for Myasthenia Gravis

 

2020 Virtual Run/Walk Goes Virtual!

June 14-30, 2020

The pandemic forced everyone to change plans. In March, just days after Conquer MG’s  Run/Walk Committee scouted a new location (trees, bathrooms, parking!), it became clear  that we couldn’t gather in person for the 8th Annual Viking Run/Walk.
But… the Run/Walk is essential to the mission and financial strength of this organization. What could we do? Answer: Virtual!
But…what will it look like? And will they come?
Thanks to many supportive individuals, we didn’t need to worry. You walked and ran and biked on your own schedule, in your own neighborhood. And you donated and fundraised to the tune of nearly $20,000.
Thank you for acting like warriors to support our mission. Together we can conquer myasthenia gravis!

Thanks to all our donors!

Rosecrans Raiders – Bob, Marlene, Janine, Megan, Bob

Glen Ostdiek with Peggy Cashman

We’re grateful for each and every person who helped support this organization in whatever way they could through the Virtual Viking Run/Walk. Thanks, especially, to these top fundraisers:
  1. Bob Rosecrans, Rosecrans Raiders ($2,095)
  2. Peggy Cashman, Park Place Pacers ($1,810) (Shown with Glen Ostdiek, supporter for many years)
  3. Michael Brady, The Rainbow Men ($1,795)
  4. Sydney Miranda ($1,745)
  5. Arthur & Julie McCracken ($1,285)
  6. Tracy Shackelford, Teal We Find a Cure ($856)
  7. Steve & Dorothy Litwitz, Team Steevie ($605)
  8. Tom Banks, Banks Warriors ($515)
As top fundraiser, Bob Rosecrans receives a CVS gift card plus an Egg Harbor Cafe gift certificate.

And oh, those photos!

 

Victor Yipp, Best Viking

Jean Fee, best t-shirt

As part of the Virtual Viking Run/Walk, Conquer MG pledged to award prizes for best photos. Winners (with CVS gift card):
  • Best Viking: Victor Yipp
  • Best T-shirt: Jean Fee (#1 “Myasthenia Gravis Bites”)

Megan Rosecrans, T-shirt Honorable Mention

SeAnn Ferguson (2nd from left) & Team, Honorable Mention

Honorable Mention (with bragging rights):
  • Megan Rosecrans (#2 t-shirt “Work out like a Viking/You’ll be Thor in the morning”)
  • SeAnn Ferguson (2nd from left, in turquoise t-shirt) and her team for the most different MG shirts

Lonnie Smith (5th from left) and his team take it outdoors.

SeAnn Ferguson’s team takes it around the neighborhood.

SeAnn with her strongest supporters: husband Jobez and parents Sandra and Stanley Collins

 

Thank you, Sponsors

We’re grateful for the meaningful support provided by these organizations.
    

 

Blasts from the Past

Check out LOTS more photos from past years on our Facebook page.

Janet Bauer’s team was ready to Conquer MG!

Bob Ratzel offers up Connie’s Crunchie cookies for sale.

Sophia gives grandmother Vi a hug.

Janet Bauer’s Family & Friends: “Somewhere Over the Rainbow There’s a Cure for MG!”

 

 

Webinar: MyRealWorld MG Study – Nov 12

Learn about an innovative research study

Webinar: Thursday, November 12

2:00 pm to 3:00 pm Central Time

Photo source: https://myrealworld.com/uk/en/myasthenia-gravis/

Speakers

Katherine Perez

argenx Head, Global Patient Advocacy & Policy

 

Lisa Carfangnini Guererro

MG Patient and Owner of Lake Street Bean, Grayslake IL

 

MyRealWorld MG is an international two-year study that looks at the impact of myasthenia gravis on patients’ lives. We invite you to click the Register Today button to learn more about this innovative project. The study offers a way to share your myasthenia gravis journey to help researchers understand the impact and burden of MG on patients and their families.

The study is sponsored by argenx, a biotechnology company working with patient organizations from 9 countries (US, Japan, Germany, UK, France, Italy, Spain, Canada, Belgium). argenx is inviting MG patients from around the world to participate and share information through the use of the MyRealWorld mobile app. Click here to LEARN MORE.

Please note: Conquer MG is pleased to provide information about current MG research to the MG community. Please note the study is sponsored by argenx, and all webinar content reflects the views of argenx and other panelists. Conquer MG does not endorse this or any other study.

Myasthenia Gravis and Telemedicine

Rabia Malik

Rabia Malik, MD, Asst. Professor, Rush University Medical Center

Recap: Conquer MG Webinar – August 30, 2020

In mid-March 2020, the U.S. Congress approved emergency use of telehealth services in response to the COVID-19 pandemic. This allows patients to receive medical care from their homes through the use of smartphones, tablets or computers.

Rabia Malik, MD, recently explained to the Conquer MG audience how they can make the most of telemedicine visits with their doctors. Dr. Malik practices at Rush University Medical Center. She is an Assistant Professor, Department of Neurological Sciences; Director, MDA Care Center; and Director, RUMC EMG Lab.

Click to watch the video presentation.

Click here to print a summary of guidance for your telemedicine visit.

Preparing for your video visit

For your visit, you will need:

  • Smart phone or ipad. It should be fully charged. If it’s not charged, make sure it’s connected to a power source. Alternatively, you can use a laptop or desktop computer with camera. However, some apps are not supported on the laptop or desktop, and so the experience may be easier and more efficient on your phone. Be sure to prepare your device in advance.
  • Internet connection
  • Instructions from your healthcare provider’s office
  • Download the app. Your doctor’s office staff will tell you how to download the app onto your device, and how to access your visit. The app is usually free.

Set up needs to happen a few days before your clinic visit, especially if it’s your first time using the app.

  • Sign into your patient portal or app to ensure that you have the correct login information and password. If you have problems getting into the application, now’s the time to troubleshoot.
  • Appointments can be accessed through a link sent via text to your phone or email. You just need to click the link.
  • If you’re using an app, each one is a little different. Usually there is a section in the app that lists your upcoming e-visits. You can go into that section and see details about the visits you have scheduled. When it’s time for your visit, click into it and connect.
  • The clinic staff should be able to help you trouble shoot. If you have questions, call the office and have them work through the app with you.
  • It often helps to have a family member provide tech support and hold the camera/device.

On the day of the visit…

  • Log in 15 minutes prior to your visit.
  • Position yourself in a quiet and private area.
  • Minimize noise, distractions (turn off TV).
  • Make sure the room is well-lit.
  • Avoid eating and drinking, just as you would in a clinic visit.
  • Be patient as you may encounter technical challenges like video freezing, audio lag (It’s also challenging for your doctor!)

Your visit will start like an in-clinic visit.

  • Your neurologist will confirm identifying information such as your name and date of birth.
  • If it’s your first visit be prepared to talk about:
    • A timeline of your symptoms (when did it start, how did it progress?)
    • Medical history (your other risk factors, for instance, stroke, high blood pressure)
    • Family history (we’re looking for certain risk factors, such as another family member who has an autoimmune disease)
    • Social history (where you work, if you live by yourself, history of smoking and alcohol consumption)
    • Current medications (keep a list of all meds you take so we can make sure our records are up to date)
    • Allergies (we want to know if you’re allergic to any medications)

 

Virtual Neurological Exam

This part of the exam is different from an in-person visit. You can take several steps to ensure we get the information needed.

Image of woman centered, facing straight forward, with light source illuminating face and background

Image of woman sitting centered with light source behind her creating dark shadow

Light source and camera position. We will want to be able to see your face clearly. Position yourself to face a light source. A large part of the exam is the strength of your eyes and face, so it needs to be illuminated. The light should not be behind you.

Woman sitting centered, forward facing, in total view

Position your camera so the whole face can be seen. We need to check your face for symmetry, for instance, to see if the eyelid on one side droops more than the other side. A caregiver or family member can positon the camera for you. If you’re by yourself, prop the camera with books or boxes. Get the camera close to your eye level.

The Virtual Exam Components

  • Eye and facial movements can be assessed over a video visit. It’s important that you sit where your face is well-lit, and your camera is positioned so we can get a good view of your full face.
  • Ptosis fluctuations (drooping eyelids) can be assessed as well, as long as the camera is well-positioned.
  • Speech assessment. We will listen for slurred speech and fatigability.
  • Be prepared to walk so your gait can be assessed. If you are at risk for falling, make sure a family member is present to provide support. If you are by yourself, one way to be prepared is to prop the camera on a chair, vertically. (In other words, you’ll need a second station where you can prop up your camera.) The lower level of the camera allows us to see the whole body from head to toe. We can assess how you walk (your gait), plus do a component of the strength exam in the legs.

Mobile device propped straight up by books on chair

View of full body as seen on mobile device propped up by books on chair

  • Vital signs

    – weight, temperature, and blood pressure – can be recorded if you have access to a scale, thermometer, and/or blood pressure cuff on the day of your exam.

 

 

  • Mental status

    will be checked. We’ll ask questions to check your orientation, comprehension, memory and language.

  • The strength exam is limited when you do a virtual exam. When you come to the clinic, your muscle strength is tested by “confrontation.” This means you push against your doctors hands, so it’s your effort against our effort. Your doctor assesses where muscle weakness occurs. In a virtual exam that’s not possible. However, we can get a rough estimate of muscle strength.
    • We can ask you to raise the arms above your head. First, Can you do it? Second, can you sustain it, or is there fatigability with arm elevation?
    • Next we’ll ask you to do slow finger taps, tapping each digit to the thumb one after another. That gives an assessment of how weak the finger muscles are.
    • We can assess strength of the hip muscles by seeing if you can stand up from a chair easily, with arms crossed. That tells whether hip muscles are strong.
    • Similarly, for trunk muscles we see how easily you can get up from a bed.
    • We may have you stand on one leg at a time, or stand on your toes or heels. That gives us a sense of the strength in the leg muscles.
  • The sensory exam is limited as well. But with the help of a caregiver or family member, we can determine if there are any differences in sensation between your left and right sides. That person can rub their hands over each of your arms, and you can report if it’s the same sensation or different. You also can demonstrate whether there is a difference between the upper part of the arms and legs (the proximal) and the lower part (or distal). If there is no one available, we may ask you to draw an imaginary line around the area of numbness.

Typically, sensory symptoms problems are not part of MG. So the more important parts of the exam are the face, strength exam of arms and legs, and speech changes during the interview.

End of your visit

At the end of the visit, be sure to:

  • Ask your questions. Keep your list ready.
  • Summarize the recommendations and plan with your neurologist. For example if you’ve been given a change in medications, make sure you know the amount and schedule change.

Your doctor can e-prescribe your meds, and place orders for lab, bloodwork and imaging studies. Although you may be hesitant to come to the hospital for blood draws and studies, keep in mind there are regulations and precautions in place to prevent you from being exposed to many people in a room. For instance, many places require that you come by appointment to get blood tests. This ensures fewer people are in the waiting room.

 

When is an in-person visit needed?

It’s important for a doctor to see you in person when:

  • You have significant changes in your MG
  • A change in medications is made
  • Detailed examination is needed
  • New patient visit
  • Red flags: swallowing difficulties, feeling short of breath with little activity and neck weakness

Keep in mind, clinics and hospitals are taking special precautions against COVID-19.

  • Mask are required
  • Patients are social distanced in waiting rooms
  • Surfaces are wiped down regularly with disinfectants
  • With each patient, the office will review symptoms of COVID-19
Vector graphic image of covid-19 symptoms

Vector graphic image of covid-19 symptoms