The coronavirus pandemic is reaching into most aspects of our daily lives. In response, we want to make sure everyone in Adira’s community knows where to turn for information and support.

Both the World Health Organization and the Centers for Disease Control and Prevention should have the most up-to-date and accurate information.

Because so many of these changes to our daily lives—the declaration of a national emergency, school closures, workplace safety protocols and state mandates to close restaurants and offices—happened nearly overnight, little planning was done in advance. Instead, we are thinking retroactively about how to meet needs that weren’t there before. Many more are likely to pop up that we haven’t thought of yet. We plan to keep our eyes on any ways to help our community in light of covid-19.

If you have specific needs you want Adira to be aware of during this time, please be in touch through our form or email info@adirafoundation.org. That goes for people working with any of the five neurodegenerative diseases in our community, as well as people living with these diseases and their loved ones and caregivers.

Social support

Social support is one thing we know we all need that will be much harder to come by under these new safety guidelines. At Adira while working from home we plan to hold more regular video meetings.

Our friends at Our Odyssey, a nonprofit for young adults impacted by rare or chronic conditions, have scheduled three virtual meetups over the next month. We imagine other organizations will soon make similar opportunities available.

Of course, many online options already exist for finding support when you live with neurodegenerative diseases. That’s a good place to start if you’re looking for some support today. If you learn about new opportunities or know of any that have been missed, please be in touch.

General online forums and patient sites:

  • NeuroTalk – an online forum to support those with neurological and related conditions.
  • Patients Like Me – an online forum for people with any diagnosis to learn from each other.
  • Inspire – an online forum for people and caregivers connected to any condition to support and connect with one another.
  • My Health Teams – online social networks for many diseases including: My MS Team, My Alzheimer’s Team, My Parkinson’s Team.
  • New Life Outlook – online forums and private Facebook groups for connecting to people with chronic conditions including Alzheimer’s disease and MS.
  • Smart Patients – an online community for patients and families affected by a variety of illnesses, with specific communities for Alzheimer’s disease, MS and Parkinson’s disease.

Support for Alzheimer’s disease and other dementias

ALS support forums

Huntington’s disease online groups

Multiple sclerosis online groups

  • MS Connection – an online platform for people impacted by MS to talk with and support each other hosted by MS Society.
  • MS World – includes online chat, message boards & links to MS-related social media –
  • Multiple Sclerosis News Today Forums – online forums for people living with and impacted by MS.

Parkinson’s disease online groups

  • Parkinson’s News Today Forums – online forums for people living with and impacted by Parkinson’s disease.
  • Smart Patients forum in partnership with American Parkinson Disease Association – an online discussion forum formed through the collaboration of APDA and Smart Patients.

Other ideas

Check with:

  • Your local patient associations and support group leaders. Many groups may substitute a virtual or telephone option in place of the normal in-person meetings.
  • Your local hospital and specialty health centers. These may have virtual and telephone support group offerings.
  • Social media sites like Facebook and Reddit have private group pages or forums specific to Alzheimer’s disease, ALS, Huntington’s disease, MS, Parkinson’s disease, caregivers, etc. This is a great time to connect with them and see how they are supporting each other.