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News

Postal Correspondence

April 6th, 2020

Dear All

Following a meeting of the MDI Management team, a decision has been made to limit all mail and postal deliveries to Head Office until further notice.

We would ask everyone to please assist MDI in this effort. If you have sent post to Head Office in the past week,  particularly in relation to fundraising and donations and have not received a response,  please contact patrick@mdi.ie  and for general post please contact  ceo@mdi.ie

Keep safe and well,

From the MDI Team


EASTER EGG HUNT – UNDER  12’s

April 5th, 2020

The MDI Youth Workers have put together a fun activity for your son/daughter to get involved in if you wish. This one is the one for those under 12 years of age.

Click on the images below to download and open a PDF version of same which you can then print out.  Complete the “riddles” and send your answers via text/WhatsApp or email to your relevant Youth Worker.

Also, if you need a little help text/phone your Youth Worker for a clue. Feel free to send back pictures of finished art which we can feature on MDI Facebook page and website.

If you do not have a Youth Worker, you can send answers to Amanda on 086-6066108 or yrwne@mdi.ie

Closing date Wednesday 15th April 2020

All entrants will be put in a draw to win a €50 one for all gift voucher, winners announced on Friday 17th April 2020.


Update on Beaumont Hospital Respiratory Clinic April 3rd

April 1st, 2020

 

Dear All

We have received confirmation from Beaumont Hospital that all outpatient appointments that had been scheduled for 3 April with the Respiratory Clinic have now been cancelled.

Professor Costello will be going through his patients and making contact with them all in due course.

 

Keep safe and well,

From the MDI Team

 

 


FREQUENTLY ASKED QUESTIONS ABOUT CORONAVIRUS (COVID-19) AND NEUROMUSCULAR DISEASE PREPARED BY ADULT NEUROLOGY SERVICES

April 1st, 2020

What is Coronavirus?

Coronavirus disease 2019 (COVID-19) is a new illness that can affect your lungs and breathing. While most people with COVID-19 develop mild or uncomplicated illness, people with NMD are at higher risk of becoming very unwell.

Coronavirus is spread in sneeze or cough droplets. To infect somebody, the virus has to get from an infected person’s nose or mouth into the eyes, nose or mouth of another person.

What are the symptoms?

The main symptoms to look out for are:

  • a new cough
  • shortness of breath
  • muscle pain
  • Fatigue /tiredness
  • Fever equal to or above 38/Chills

How can I tell I have coronavirus if I also have NMD?

Some of the symptoms of COVID-19 might seem similar to those of NMD – e.g. shortness of breath.  But these symptoms have to cluster together, along with a temperature, to make us suspect that this is COVID19

How do people get coronavirus?

You have to have been in close contact with somebody who has been affected with for more than 15 minutes.

What can I do to protect myself?

The HSE guidelines for how to protect from getting COVID-19 are here

https://www2.hse.ie/conditions/coronavirus/at-risk-groups.html

  • Stay at home
  • Do not shake hands or hug people
  • Do not touch your face with your hands
  • Tell visitors not to visit if they have any symptoms of coronavirus.
  • Ask visitors to wash their hands properly.
  • Ask visitors to keep a space of at least 2 metres (6.5 feet) between you and them.
  • Make a joint plan with family, friends and neighbours on what to do if you become ill.
  • Do not have any more than 2 visitors at a time to your home.

 What should I do if my prescriptions run out and I cannot contact my GP?

You can call your GP or local clinic, and they should be able to arrange to send a prescription to you and your pharmacy.  If you continue to experience problems you can also contact the email advice  MNDADVICE@gmail.com

What happens if somebody in my family gets COVID-19?

They should follow the advice of the HSE and isolate themselves.  You should not be in the same room as them.  They should use a different bathroom, cooking implements, dishes and cutlery.

All surfaces in the house should be wiped down regularly with disinfectant.

Clothes other items belonging to the infected person should be placed in a plastic bag, and washed at high temperatures.

 

What happens if I get COVID-19?

It is very important to following the HSE advice about social isolation to protect you from getting coronavirus.

From discussion with doctors in Italy and Spain, there have been no or very few cases of coronavirus in NMD patients in these regions.

This shows that social isolation works.

If you do develop symptoms, you should first call your GP / the HSE helpline to arrange testing.

You should assume you have the virus until the test come back negative.

If your test is positive you should rest at home, socially isolate in accordance with the HSE guidelines, and take paracetamol.

Please let us know if you have tested positive and we will give you additional telephone advice.

Most people get better.

 

I am using Non invasive ventilation.  What happens if I get COVID-19?

If you follow the HSE advice, it is unlikely that you will contract the virus.

But if this does happen, you should continue to use your NIPPY.

However, you should be aware that the NIPPY blows air out from your lungs, and this air will contain coronavirus particles. This means that the room in which you use the NIPPY will be contaminated.

You should remain in this room when you are sick.

Other people in the house need to avoid being in this room if at all possible.    If they go in, they should use a mask and practice safe distancing as much as is practical.  All of the surfaces in the room should be regularly wiped down with disinfectant .

All the people in your house are at risk of contracting and spreading the virus and they should also self-isolate.  This means that they should not go outside for 14 days, even for shopping.

Please let your IMNDA /Beaumont nurse know if you have tested positive and we will give you additional telephone advice.

 

I am using Cough Assist.  What happens if I get COVID-19?

If you are using a cough assist machine you should follow the same advice as for NIPPY. Use it only in one room. If possible, use the cough assist on your own or if you need help, limit this to one person who should wear a mask. Other people should avoid going into this room for one hour after you have used the cough assist. The Physiotherapist is available for advice if required.

 

I cannot attend my clinic appointments for review, and my GP cannot visit me. What should I do?

The IMNDA and the National NMD Centre at Beaumont Hospital and Cork University Hospital have come together to form a team of 6 nurses, 3 consultants and 4 doctors.

This medical team will provide remote clinics by telephone / video link for all NMD patients.

These clinics will take place on a Thursday (Beaumont) and Tuesday (Cork).

The IMNDA and Beaumont nurses will continue to provide telephone advice during the week and will also provide an emergency out of hours help line087 4393213

If you need to be visited at home , the team can arrange this.

 

I am worried that if my family gets sick they won’t be able to take care of me

This is a very understandable concern.  The NMD team will know about everybody’s situation, and who is at the highest risk.

The team will work with the HSE to make sure that you receive care, even if the normal caregivers are temporarily out of action.

 

With NMD, will I be at risk if I’m given oxygen therapy for COVID-19?

Prolonged use of oxygen therapy can be risky with NMD. It can cause an upset in the balance between oxygen and carbon dioxide in your blood stream. However, there may be situations where oxygen can be used for short amounts of time to bring levels up.  It is ok to use oxygen with your Non-invasive ventilation.

 

I have read that people with COVID-19 might need to go on mechanical ventilation.  But I have also read that mechanical ventilation is not a good idea for those with NMD.

Both of these are unfortunately true.  The best way to avoid this problem is to avoid getting COVID-19.

But if you do become infected, the NMD team will visit you at home and discuss with you and your family  what the best options are for you.

I am a carer of somebody with NMD. What should I do?

  • Follow the HSE guidelines about social isolation
  • Take regular exercise
  • Wash your hands frequently
  • Wash down surfaces in your living space frequently
  • Do not shake hands or hug people
  • Do not touch your face with your hands
  • Tell visitors not to visit if they have any symptoms of COVID-19.
  • Ask visitors to wash their hands properly.
  • Ask visitors to keep a space of at least 2 metres (6.5 feet) between you and them.
  • Make a joint plan with family, friends and neighbours on what to do if you become ill.
  • Do not have any more than 2 visitors at a time to your home.
  • If you loved one is using NIV, you should be aware that this spreads droplets around the room. So if possible, the NIV should be used in only one room in the house, and surfaces should be cleaned down regularly.
  • If you think your loved one has developed symptoms of COVID you should call your GP, and your NMD nurse. The GP will decide if testing is required.

What happens if I have outside  carers?  Do these  increase my risks?

  • Carers have been educated about spreading COVID-19, and will reduce their risks
  • They will not come if they think that they are likely to give you the virus.
  • They may wear a mask when they visit you. Do not be alarmed about this.

I have heard the children are invisible carriers.  What should I do about children visiting?

  • Schools have been closed now for 2 weeks to stop children spreading the virus
  • Follow the HSE guidelines about visiting
  • If you have children, they should not have playdates, or visit playgrounds.
  • Children should be taught to wash their hands regularly.

What else should I think about?

If you haven’t already done so, now is an important time to talk to your family about your wishes should you become ill and not be able to speak for yourself.  If you have an advanced decision plan you should review this and update it. You should also discuss what might happen should your family members become ill.

We understand that this may be a frightening time for people with NMD and their families. We are working hard to make sure you get the best care we can offer whilst protecting everyone from the virus as much as we can.

Whom can I contact for more advice or help?

To make sure that people with NMD continue to receive excellent care, the clinical and research doctors and nurses providing the national NMD service in Beaumont Hospital and Cork University Hospital  have joined forces with the IMNDA Nurses to provide ongoing phone and telemedicine care, along with home visits throughout the country. If you have any concerns you can call an emergency phone number that will be on all the time.

Emergency phone number: 087 4393213

Or of if  you have any other concerns relating to NMD and COVID 19 you can also email MNDADVICE@gmail.com  (Please note in case there is any confusion, we can confirm that the email address is MNDADVICE@gmail.com and not NMD, as it is also serving people with Motor Neurone Disease.)


Update on MDI Annual General Meeting 2020

March 30th, 2020

Dear All

In response to the current Government Guidelines in relation to ongoing Covid 19 emergency and the restrictions in place, the decision has been made to postpone the MDI Annual General Meeting (AGM) 2020 until further notice.

The AGM was scheduled to take place on Saturday 16th May at the MDI Head Office in Dublin.

We will of course provide an update on new date for AGM to be held.

Keep safe and well,

From the MDI Team


Drawing Activity

March 20th, 2020


Marvel Comic Book artist Will Sliney has launched a daily drawing activity challenge called #wewilldraw.   Every day Will shares a challenge on and videos showing he made his drawings, Kids,grown ups and celebrities are all getting involved, and you can too by following Will’s Twitter page through the link below

Take a look at Will Sliney (@WillSliney): https://twitter.com/WillSliney?s=09


Lunch Doodle

March 20th, 2020

Mo Willems, artist-in-residence of the Kennedy Centre in the US, has begun daily drawing videos on YouTube called LUNCH DOODLES.   The videos will be streamed live every day at 6pm and are available on YouTube at any time. Click on image below.


Update from the Neurology Clinical Programme: Access to Neurology Services and Covid19

March 20th, 2020

We wish to share with you Guidance issued today from the Neurology Clinical Programme: Access to Neurology Services and Covid19

Neurology services will continue to operate with some changes. Patient safety is being prioritised to limit the risk of COVID infections. For this reason, most  face to face out patient clinics have been cancelled. However, phone consultations are being provided by the Neurology teams and if clinically necessary, a face to face appointment can be scheduled in a non-COVID area if your consultant deems this to be necessary. Please note that this may be different from the normal out patient setting.

If you have any concerns about your condition, you should contact the neurology service or specialist nurse helpline that is providing your care. Please bear in mind that phone lines and neurology services will be extremely busy at this time, and that it make take some time to get through.

If you think you might have contracted COVID19, please follow the HSE Guidelines. This means that you should self-isolate and telephone your GP to arrange a test at one of the testing centres. Do not go to A&E without discussing with this with your GP or Neurology team beforehand.

If you are on treatment for a neurological condition and you are worried about your risks of developing COVID, you should follow the HSE guidelines of self-isolation, avoid physical  contact with others, wash your hands regularly with soap, and do not touch your eyes, nose or mouth. If you have any specific concerns, you should contact  your GP or your neurology team.

For specific guidance relating to MS, Parkinsons Disease, Motor Neurone Disease or Epilepsy you can contact your specialist nurse. Many individual voluntary organisations also have very helpful information on their websites.

 


MDI Update on Beaumont Hospital Neurology Clinics for April

March 20th, 2020

 

Dear All

We wish to inform you that MDI has received notification from Beaumont Neurology Clinic that they plan to run virtual clinics in April for people with neuromuscular conditions. They advise that no patients should attend the hospital in person.

We are also in regular contact with Beaumont Respiratory Clinic and will keep you informed of any plans as soon as we learn of them.

On behalf of the MDI Team

 

 


MDI Update on Support and Advocacy

March 20th, 2020

 

Dear All

We hope you and your loved ones are all keeping safe and well. We want to let you know that MDI is working hard behind the scenes to advocate on behalf of our members throughout this crisis.

MDI is a member of the Disability Federation of Ireland and we are letting them know the concerns and issues of our members to bring to the HSE National Stakeholder Committee on the Coronavirus. We are also linking in with the Neurological Association of Ireland who will represent our issues on the Clinical Advisory Group to the Neurology Clinical Programme as they develop a protocol in relation to keeping neurology services operational during the coming period.

We are also keeping in regular contact with medical specialists to ensure that our members are informed of any developments. We encourage you to continue to visit the HSE page https://www2.hse.ie/coronavirus/ and other state websites regularly for up-to-date information and advice. Currently, the guidelines for people with neuromuscular conditions remain the same as those issued by the HSE.

Our Family Support Workers and Youth Workers are proactively offering support on the phone and by text, email and teleconferencing. Our back of office staff are working hard to keep the organisation running smoothly.

We are here to support you if you have any queries,
Please contact mdiinfo@mdi.ie

Take care everyone.

On behalf of the MDI Team

 


X
Cavan, Monaghan, Louth Head Office - Dublin, Kildare, Wicklow Cork and Kerry Carlow, Kilkenny, Waterford, Wexford and Tipperary South Clare, Limerick and Tipperary North Laois, Longford, Offaly & Westmeath Galway, Mayo & Roscommon Donegal, Sligo, Leitrim

1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy - General
  • • MDC1A (merosin-deficient congenital muscular dystrophy)
  • • Rigid spine syndrome (RSS)
  • • Ullrich congenital muscular dystrophies
  • • Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositides

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD) - General
  • • LGMD 1B (also known as Laminopathy)
  • • LGMD 1C (also known as Caveolinopathy)
  • • LGMD 2A (also known as Calpainopathy)
  • • LGMD 2B (also known as Dysferlinopathy)
  • • LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

12. Other (Please Specify)

13. Unspecified