We received an email from Norma at The Lewy Body Dementia Resource Center in New York and promptly asked her permission to share it on our blog. Thankfully, she was totally ok with us posting it so here it is! This has some great information in it and we urge you to take a moment to read through. We hope this finds you well and you are all staying safe and positive in this uncertain time. You can read the email below and check out The Lewy Body Dementia Resource Center website through the links at the bottom of this post.
Dear LBDRC Friends and Caregivers,
We are thinking of you and hoping you and your families are staying safe and healthy. At this time, we are reaching out to offer additional special support and suggestions. As a reminder, we are always available to speak by phone through our Helpline at 516-218-2026 seven days per week from 8 am to 8 pm.
There is helpful information below so please scroll down.
PRECAUTIONS, ILLNESS & CONFUSION
People with LBD and other dementias may forget to wash their hands or take other recommended precautions. In addition, diseases like COVID-19 and the flu may worsen cognitive impairment due to dementia. Increased confusion is often the sign of any illness. If a person shows rapidly increased confusion, please contact your health care provider for advice.
When needed, demonstrate thorough hand-washing with soap for 20 seconds. Consider posting signs in the bathroom and elsewhere as reminders. Alcohol-based hand sanitizer with at least 60% alcohol can be a quick alternative to hand-washing if the person cannot get to a sink easily.
Ask your doctor or pharmacist about filling prescriptions for a greater number of days to reduce trips and deliveries to/from the pharmacy. And please know that many physicians are meeting their patients via telephone in the coming weeks so there may be no need to venture out to a scheduled appointment.
Think ahead and make alternative plans for care management if the primary caregiver should become sick.
During this difficult time, one of the most challenging things for many people, particularly seniors, has been getting enough supplies to have at home. Snopes.com has curated a list of all major food suppliers who are offering special hours for vulnerable populations. Find the list here: https://www.snopes.com/news/2020/03/20/grocery-stores-special-hours/
VERY INFORMATIVE VIDEO FROM A NEW YORK PHYSICIAN
Dr. David Price of Weill Cornell Medical Center filmed this video on March 22nd as an update on findings on COVID-19. If you don't want to watch it until the end, the first 15 minutes are very informative: https://vimeo.com/399733860?fbclid=IwAR2uRLD7igMSl0l8uwF7qDINkYG6llYD1EYIV-UZRElxdCLqTB0iRyk7ivA
Quick info from the video: 1) Wash your hands or use hand sanitizer after you touch ANYTHING. 2) Wear a mask or bandana out in public--not to protect yourself--but to train and prevent yourself not to touch your face. 3) Stay 3 to 6 feet away from people. The way you get this disease is by either touching your face with your hands, or by staying in close proximity (less than 3 feet) to another person with the disease in an enclosed space for a sustained amount of time (15 to 30 minutes).
EXERCISE AT HOME
Dance for Parkinson's has many wonderful videos (both short and long) that can be done from the comfort of your home. After you click on the link, keep scrolling down. There are many videos to choose from. www.danceforparkinsons.org/resources/dance-at-home
And a little bit of humor. . .
1. Some men after days without sports:
"I found a young lady sitting on my couch yesterday. Apparently she's my wife. She seems nice."
2. "They said that a mask and gloves were enough to go to the supermarket. They lied. Everyone else has clothes on."
Hoping everyone is safe and doing the very best they can. Please know we are here for you via phone and email. As a reminder, all support groups will take place via conference calls until further notice. They will continue to be led by Ileene Stern for Nassau, Susanne Pargament for Suffolk, Susan Visconti for Westchester, and Norma Loeb, Laura Kramer and/or Mary Lou Falcone for Manhattan.
Thank you and stay safe,
Founder & Executive Director
As I am sure you know, the Canadian government is taking precautions to halt the spread of this new strain of novel coronavirus (Covid-19). Due to this, our society has slowed, travel is not allowed and many businesses are shut down until further notice. They have also called for social distancing and personal isolation. This is not something to be taken lightly and we here at CLBDI urge everyone to follow the instructions given to them by their local, provincial and federal governemnt and take this very seriously. Listen to the experts, respect your fellow human beings and remain calm. We are. You know, we are all going through this together and we will make it through this. Try to enjoy the time you have now to relax, read or write, take up a hobby and reflect. Remember to laugh and stay connected to your friends and family. People will need support now more than ever.
As far as what we are doing...
For the safety of everyone involved in CLBDI we are announcing that there will be no personal meetings and that everything we had planned involving larger groups and the community, including our spring event and presentations, has been postponed to a later date (to be announced). We are still working and coordinating with one another using the internet but things will slow here until we all pass through this.
We are wishing you the best in these uncertain times. Wash your hands, keep your distance and do what you can to take care of your mental and physical health.
First and foremost, we would like to announce that Carol has returned and we are back at work. We are beginning to plan our summer events and LBD presentations. There will be plenty of ways that you can get involved with us as and we urge anyone who wishes to connect to us to use the form on the "Contact Us" page. We have a bunch of ideas coming down the pipeline that we cannot wait to share with everyone.
We also thought we would let you know that together we have raised $2,796 towards LBD research since we started this project in October. We have been told that there are still some donations processing so the number will be a bit higher but WOW! This is already wonderful news! We will continue to share donation numbers as the year progresses so check back regularly.
In other news, we are happy to announce that we will have a dedicated Facebook group for everyone who wishes to be a part of our community in the near future. Keep an eye out for that in the coming week or two. We also wanted to send out another heartfelt thank you to everyone who has reached out with condolences or donated to Robarts after Bob's funeral.
Keep your eyes peeled as more information will be coming your way soon.
All the best,
The CLBDI blog is run by Advisory Board member Joseph Daniel.