COVID-19, Coronavirus Announcement and Resources

 With the concern surrounding COVID-19, Coronavirus, PSP & CBD Foundation is here to answer questions you may have!
Individuals with PSP & CBD are at increased risk if they contract this virus. Many of those diagnosed with PSP or CBD are in their 50s+ and present with increasing weakness and reduced coordination of the mouth and throat muscles. Just as many are already taking precautions to decrease risk of the development of pneumonia, those precautions can also be utilized to limit exposure to Coronavirus. We want to advise everyone to:
➡️Always thoroughly wash your hands with soap and warm water for at least 20 seconds
➡️Avoid touching your mouth, nose, or eyes with unwashed hands.
➡️If you are coughing or have cold symptoms, wear a mask if you must come in contact with an individual with PSP- CBD.
➡️Limit exposure to crowded places and decontaminate common and foreign spaces often, before persons with PSP and/or CBD are exposed to it.
➡️Limit guests/family visits for the near future. Plan video or phone visits instead!
➡️Have a thermometer handy at all times and be vigilant about checking temperatures! Clean device often.
➡️Plan ahead of time and contact your primary care physician about how to receive medical attention without leaving the house. Do they offer Telehealth?
Also, PSP and CBD patients automatically qualify for hospice assistance in many locations! Check with your local hospice companies.
➡️Make a list of who to call to have medical equipment and prescription medication delivered to the home.
➡️Make an emergency contact list and post it in a visible location.
➡️If your loved one is in a short/long term care facility, contact the facility to discuss their plan of action against contraction of the Coronavirus. Ask if you may provide and/or post a visual chart in persons room listing precautionary measures that are needed. Discuss an alternative mode of communication/visitation if a nursing home bans visitors.
➡️Many in-home care and hospice companies have basic medical supplies they may be able to provide (masks, oral care supplies, medication delivery, medical equipment, etc.). ⚠️Now is the time to see what services your local health care providers are able to provide from a distance!!
Those with neurodegeneration may present with increased difficulty with independence and activities of daily living.
➡️We encourage caregivers/family to provide continued verbal, visual, and/or gestural reminders to help remind individuals with PSP&CBD, as well as their main caretakers, of what they need to do to decrease risk of pneumonia.

With regards to compensatory swallowing strategies to help decrease pneumonia risk, we advise:
➡️Contact your local speech-language pathologist, who specializes in neurodegeneration and dysphagia. SLPs provide individualized compensatory swallowing strategies and education! Your primary care physician should be able to refer you. Contact us should you need assistance with finding a local SLP.
➡️Individuals should be sitting upright at a 90 degree angle or as close to, during all meals and drinks, and after for at least 30 minutes or longer.
➡️Throw out old toothbrushes and ensure individuals are receiving proper oral care; at least 2 times a day- and always after meals (you may utilize a wet and rinsed toothettes to rinse mouth after brushing, should individuals with PSP-CBD have increased difficulty rinsing mouth with water.
*Wear medical gloves if possible when providing oral care to individual with PSP-CBD*
⚠️Providing proper oral care will be the #1 thing you can do to help decrease risk of aspiration pneumonia, and staying vigilant with proper care precautions will be the #1 thing you can do to help decrease risk of pneumonia in general.
➡️Please check out and become familiar with the CDC website regarding information pertaining to the Coronavirus and their hotline number. We encourage everyone to know how/where they can retrieve testing if needed, receive proper medical care, and retrieve supplies necessary to provide optimal care.
We are thinking of you all❣
PSP&CBD Foundation Team.

 

Resources to Stay up to date on COVID-19, Coronavirus:

CENTER FOR DISEASE CONTROL WEBSITE: COVID-19, Coronavirus Disease 2019

Communication Resources:

COMMUNICATION RIGHTS TOOLKIT

FREE COMMUNICATION TOOLS FOR PATIENTS/PROFESSIONALS 

Mental Health & Coping in Daily life: 

CDC: COPING & STRESS

PSYCHCENTRAL:10 INSTANT WAYS TO CALM YOURSELF DOWN

JOY 4 ALL PROJECT:

Listen to jokes of the day, poems, and messages of positivity tailored for elderly and/or isolated from children throughout communities!

You can call:

1-877-JOY-4ALL  (1-877-569-4255)

Want to contribute to spreading the joy? Click here for more information:  Joy 4 ALL Project 

Additional Resources: 

CUREPSP : COVID-19 Resources

GLOBAL GENES: COVID-19 Resources

Brain&Life: 6 COVID-19 Safety Tips for Neurologic Patients

Phone: 540-425-0467

Your contribution makes a huge difference in the lives of many!