COVID-19 Updates

Given the uncertain times that we are in, we would like to remind you that we are here for you and will continue to be here for you. MND does not stop and neither will we.

While the situation around COVID-19 (coronavirus) is rapidly changing, we understand that up to date information is vital. We advise visiting the following Ministry of Health website for the latest updates and advice. As well as general information for everyone, there are also specific resources for people with disabilities and their carers.

For New Zealand Government updates, please visit : https://covid19.govt.nz/

What is COVID-19?

COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a type of coronavirus. There are simple steps you can take to protect you and your family/whānau.

The symptoms of COVID-19 are:

  • A cough
  • High temperature ( at least 38°C)
  • Shortness of breath

If you are experiencing COVID-19 symptoms, contact Healthline immediately for advice on 0800 358 5453.

More information, including regular updates and advice for people with disabilities and their carers is available on the Ministry of Health website here

New Zealand Government response to COVID-19

From 11:59 Wednesday 25th March, New Zealand will be on alert level 4 with everyone required to remain at home and only essential services operating.

More information about alert levels and the New Zealand Government's actions can be found here: https://covid19.govt.nz/

General advice you and your family should be following

  • Wash your hands often with soap and water for at least 20 seconds or use an alcohol-based hand sanitiser.
  • Use an alcohol-based hand sanitiser that contains at least 60% alcohol if soap and water are not available.
  • Cover your cough or sneeze with a tissue, then throw the tissue in a bin. If you don’t have a tissue, use your sleeve.
  • Avoid touching your eyes, nose, and mouth with unwashed hands.

MND and COVID-19

  • Because COVID-19 is a respiratory illness, people living with MND are more vulnerable than others.
  • If you have specific questions about your personal situation, please contact your support team member or health care professional.
  • Continue to take usual medications and use NIV in the same manner as you normally would unless you are advised by your doctor
  • If your respiratory symptoms worsen, then contact your NIV team using the usual methods of contact
  • If you’re concerned about what will happen if a paid caregiver becomes sick, talk to your service provider to find out what will happen in this instance

The Ministry of Health has put together a website specifically for disabled people and their families. Click here to access it.

Information for caregivers

It is important that as a carer you have a plan so that someone else is able to provide care for your loved one if you fall ill, or need to self-isolate.

Think about who could step in should you need help. Even in a lockdown, one person from outside your household can provide support for you. It is essential that this person is also taking the same precautions to avoid exposure to COVID-19 as you yourself are taking.

Write down detailed instructions of how you do things to provide this care so that the person with MND feels confident that their care will continue in the same way and others feel confident to perform these cares.

  • List the names and doses of medications.
  • List the names and contact details for healthcare providers – GP, pharmacy, hospice nurse, NIV contact person, SLT, OT, support team member, NASC coordinator, Talklink etc.
  • Keep your environment clean using disinfectants. Ask all those entering your house to wash their hands using sanitiser before they enter.
  • Use technology to keep in contact with family, friends and your community. Remember that your MND support team member is available for support through phone calls, texts, email, video calls etc.

Countdown Priority Assistance

Countdown has launched an initiative to help vulnerable members of the community. Priority booking for Countdown supermarket delivery has been set up to benefit people who have health issues that make it dangerous for them to go to the supermarket for essential supplies.

To register for this, you must first be registered as an online shopping customer with Countdown.

Visit shop.countdown.co.nz and either create an account or sign in if you already have one. Once this is done, complete this form to register for priority assistance : https://shop.countdown.co.nz/shop/content/priority-assistance

MND New Zealand and our services

From Monday 23rd March, all MND New Zealand team members are now working from home.

We know this is a stressful and confusing time for everyone. We want to assure you that we are still here to support you via phone, text, email or video call.

Contact details for support team members can be found here and for national office team, here

The Fulton Hogan MND New Zealand Support Fund is accepting applications as usual. More information can be found here

MND New Zealand is a registered charity, reliant on donations from the public.

Donate here to help enable MND New Zealand to continue our vital work, supporting people living with this devastating disease today, and those who are sadly yet to be diagnosed in the future.

 

University of Auckland/ADHB MND genetics screening and MRI scanning studies

We understand many of  you will be interested in what is happening with this during the lockdown period. Click here for a statement from Dr. Emma Scotter, Head of the Motor Neuron Disease Research Lab.

New Zealand Motor Neuron Disease Registry 

It's understandable that you may have questions about what's happening with the New Zealand Motor Neuron Disease Registry. Click here to access an update from the registry.